Monday, December 31, 2007

Mark L. Levine (November 13, 1948 - December 23, 2007)

A biography could be written about my father but would never be able to cover the breadth of his achievements and legacy he has left behind. The past seven days since his passing was a great testament to the type of person my father was. It was awe-inspiring to hear about all the stories about how much my father affected so many peoples’ lives, whether they would be dear friends and relatives or someone who met him a handful of times.

I want to thank everyone for honoring my father in the way in which he deserved to be remembered; with the respect and dignity that he showed to everyone he ever encountered.

I am sure there are many stories to be told and many great memories to be shared. I encourage anyone who would like to post something in reverence to my father to please do so. After speaking to many friends and family, there was so much I haven't heard before, which I would love to be able to print and keep with me forever. If you are having trouble logging on, please feel free to send an email with your comments to me at danieslevine@hotmail.com and I will be sure to post it as soon as possible.

Once again, I want to thank everyone for all of your support and love during this tumultuous time, it will never be forgotten. I know my father is with us and will continue to be with us forever.

Friday, November 30, 2007

SURPRISE!


As it will be a surprise to most, Whitney and I officially got married last night (11/29/07). We made the decision on Wednesday night, and next thing you know we were married on Thursday. She is legally, Whitney Rose Levine. While it was very last minute and held at my parents' house with just our immediate family, it was a joyous and wonderful event. Even without a full day's notice, we were fortunate enough to have our Rabbi Daniel Pernick and Cantor Geri Zeller lead the beautiful ceremony.

Although the ceremony was kept to just our immediate families, please know that everyone was in our thoughts and our hearts. Once I put the pictures up online, I will be sure to include a link on this site so others can enjoy. As always, thank you so much for all of your kind remarks and support, it means the world to us.

It was amazing to have you experience this with us Dad. We all love you!

Your most favorite youngest son and daughter,

Dan & Whitney

Tuesday, November 13, 2007

HAPPY BIRTHDAY POPS!!!

Yes, I am sure you can list a few other things you would want to be doing on your birthday other than a blood transfusion, but just have faith that this will allow you to at least celebrate your 150th ! As your son, there is nothing more I could be more proud of than seeing you fight this battle the way that you are.

For everyone that visits this blog, please note that we will be having a huge party next year to celebrate Mark's 60th. Come one, come all.

We all love you.

Monday, October 29, 2007

Wednesday, September 12, 2007

Thanks for the prayers

Since it is the Jewish New Year I want to take this time to wish everyone a happy and healthy new year, For the past 5 months I have received prayers from all of my Jewish and non Jewish friends. Catholic, Protistant, Moslem, and others that I am sorry I am not sure of. At this time I hope all of you take these words and all of you have a happy, healthy New Year . It would make me feel great knowing that all of my freinds who pray for me every week receive the good wishes that Nicki and I wish for you. You all are the best,

love

Mark & Nicki

L'a Shona Tova

Monday, September 3, 2007

In case you would like to know about this Trial...

Although most of the document is medical jargon that you won't be able to understand. This is the clinical trial that my father is taking part in. If you do some research, you can see, that it sounds promising.

Keep up the fight pops!

http://clinicaltrials.gov/show/NCT00520299

Saturday, September 1, 2007

Update / Ying and Yang

Well I finished my first week with the new drug and I had no reaction. We received some good news from my doctor. The lesions in my liver have gotten smaller and the lesions in my lungs have stayed the same with no growth. That's the good news. The found another lesion in my spine in the lumbar region and will begin radiation this Tuesday. The radiologists says it will be nothing like the last radiation in size and area so the side effects wont be nearly as bad, also since I have not been on chemo I should do ok (Whew). In general I feel pretty good and all my vitals seem to be in good shape. Still trying to get my pulse down but can't get below 100.

I hope this note finds everyone well and enjoying the holiday weekend.

Looking forward till tomorrow

Love

Mark

Monday, August 27, 2007

Radio Waves as Cancer Treatment

As a follow-up to Karen's post, there seems to be some promising treatment from the use of Radio Waves. Very interesting piece, which I will surely be following.

"Fascinating" Possible Cancer Treatment
ERIE, Pa., Aug. 27, 2007
(CBS) For most, a cancer diagnosis can be devastating. But, as CBS News contributor Benno Schmidt reported on The Early Show Monday, for John Kanzius, it was a call to action. Kanzius isn't a doctor. He doesn't even have a college degree. Yet, observes Schmidt, the device he invented has impressed a notable researcher and inspired his hometown, Erie, Pa., to the point where it gave him a key to the city in April. Asked by Schmidt what made him think he could cure cancer, Kanzius replied with a laugh, "What made me think I couldn't cure cancer? Nobody else was doing it!" A former radio and TV engineer and one-time station owner, Kanzius, who suffers from leukemia, hated his chemotherapy and saw its devastating effect on others. "I ran into some of the same patients over and over again and, to see their smiles disappear within a few weeks, and then watch their hair disappear and then, clinging to their mothers asking, 'What's wrong with me?' was heartbreaking." Kanzius, who'd been building radios since childhood, believed radio waves could somehow be harnessed to destroy cancer, without drugs or invasive surgery. "I envision this treatment taking no more than a couple of minutes or so," he says. Kanzius hopes cancer treatments could work something like this: A patient would be injected with tiny metal nano-particles, which would be carried through the bloodstream by a targeting molecule and attach only to cancerous cells. The patient would then be exposed to an energy field created by radio waves, and feel nothing, while the nano-particles would generate enough heat to destroy their cancerous host cell. While noting that targeting cancer cells will be the biggest challenge, Kanzius demonstrated just how easily the nano-particles could be used as receivers. A lab worker injected carbon nano-particles into a specific spot in a piece of liver, which was then placed into an energy field of low frequency radio waves. Within seconds, the areas injected the with nano-particles were heated to the point of actually cooking the liver, while leaving the surrounding meat unscathed. Kanzius' invention has caught the attention of Dr. Steven Curley, a surgical oncologist and cancer researcher at MD Anderson Cancer Center in Houston. "This has the most fascinating potential I've seen in anything in my twenty years of cancer research," Curley told Schmidt. Curley has developed current methods of using radio frequencies to attack cancer, but says he looks forward to one day using a non-invasive approach like the one Kanzius is working on. "This," Curley says, "is what will get into the cancer cells and again … release heat that will kill the cancer cells." He wouldn't reveal animal test results on camera, but says he's optimistic that his findings will this fall. In the meantime, he's joined Kanzius in an effort to raise awareness and funds to expedite further research. The April symposium at which Kanzius got the key to Erie brought out 700 people who were not only enthused by the prospect of curing cancer, but having their city as the manufacturing hub of the device Kanzius invented. Former Erie Mayor Joyce Savocchio remarks, "I always say to John Kanzius, he'd better practice Swedish, because I honestly believe he's going to be in Sweden accepting the Nobel Prize!" Savocchio leads the fundraising efforts in Erie and says, since the machine would be built there, Erie cud benefit, big-time. "The projected income," she points out, "should this be successful, is anywhere between $2.5 billion and $10 billion a year." Experts say human trials using Kanzius' device are at least two years away, but Kanzius is undaunted, telling Schmidt, "I'd like to see the first patient treated wile I'm still alive, and to have the doctor tell them they're cured! As for Kanzius himself — Schmidt says his health is considered stable, and he continues to undergo chemotherapy for his leukemia.

Click on this link to watch the video:
http://www.cbsnews.com/stories/2007/08/27/earlyshow/health/main3206892.shtml

Monday, August 20, 2007

Short update.

Well for the past 3 weeks my goal has been to get strong and put on weight. Well with the help of a drug my doctor gave me I have gained 3 pounds and am getting stronger every day. I have cut down on the methadone pain killer and have much more strength. For the first time in 4 months I have gone out with Nicki and it was not to go to the hospital or doctor. What a relief. That in itself made me feel so good.

So this week I go for the PET scan and CAT scan and get ready for new treatment next week. We are excited and feel very positive about the new drug.

It makes me so happy writing this and feeling good. Once again thanks for all of the e mails, cards and calls. I am sure all of your positive energy has helped me get stronger.

Looking forward till tomorrow


Love

Mark

Friday, August 10, 2007

Here we go again!

Well its back to the blog. Sorry it takes so long but often there is little to write about. I went to Sloan on Thursday and met with my doctors. I have enrolled in a brand new clinical research program. There will be 20 people involved and I am number 3. The drug is called ADI-SS Peg 20,000. It causes a nutrient called Arginine to break down and that nutrient is needed by melanoma cells to grow. My doctor feels optimistic about this cutting edge drug so away we go. I need to go for a number of scans to see if the results. The results in mice have been very positive so as we say Here we go again!

Once again thanks to all of you for your warm wishes, notes, e mails, calls and thanks for staying with me over these past few months it really means the world.

Nicki continues to hold down the fort and does an amazing job in keeping it all together.

Looking forward till tomorrow

Love

Mark

The Next Phase

It's been a while since I've posted, so I'll pack this one full of information..

Yesterday I went with my parents to meet with Dr. Wolchok and his team. The purpose of the visit was to discuss what new treatments are available to him. After reviewing several clinical trials and eliminating just about all of them, we decided to move forward with a Phase I/II trial of a new experimental drug called - ADI-SS. Prior trials of the drug have had positive results with virtually no side effects.

My dad will receive one shot a week of the drug for 8 weeks. He will have a PET scan before the first injection, on day 4 of the first week, and after the 8th week. This test along with blood work will determine if the drug is working. The shots will be given at Sloan Kettering.

The drug is an arginine-degrading enzyme - arginine is an amino acid that the melanoma cells require to live. Arginine is found naturally in our bodies and is made by healthy cells. The thought behind the drug is that if you can remove all of the free-floating arginine from the body, the cancer cells will starve and die. The enzyme used to remove the arginine escapes from the body very rapidly so they use what is essentially anti-freeze to keep it in the body up to a week.

Details of a previous trial can be seen here.

The doctor was very optimistic about this drug and so are we.

Some other updates from the appointment - my dad's white blood count was at a good level (4.2) and his blood pressure and heart rate were at normal levels.

They are going to try and reduce the level of pain medicine he's on because they think it's the cause of him being so tired all the time. They also prescribed a medication to increase his appetite.

Tuesday, July 24, 2007

WOW

I never new Dan was doing his posting about the same things. Not until I finished did I see he did his 7 minutes earlier.
I guess the apple does fall close to the tree and boy am I happy about that...

Mark

So whats new?

It all started on July 16. My first day of my new chemo - you read all about that in the previous posting. Well the week progressed as expected until the weekend and then it hit the fan. I got hit with all of the negative side effects and my Sat really was pretty bad but we always had Sunday to get better. Well on Sunday I woke up to having my left eye drooping down and looking like I went 9 rounds with Tyson. Nicki called the Doctor on Monday morning and they had me come in right away. After one look at my eye they wanted me to go for a Brain MRI which got set up for Wed morning. I had a Brain CAT 5 days before but now they wanted a MRI. Nicki then spoke to my head oncologist down at memorial hospital and he told me to get into the urgent care center ASAP for the brain MRI well Nicki drove down in a rain storm like a NYC cab driver and within 4 hours I was getting my brain looked at again. We got home at 9 and headed back to Sloan for my second round of Chemo at 9 Tuesday morning. After meeting with my chemo doctor everything was set. I started my next round and within 20 seconds I had the same reaction as the first (read previous post). I must have been doing better since only 3 doctors showed up with 4 nurses within 30 seconds. I have to tell you this really is not fun. After about 3 minutes I told them I wanted to go again, this is called rechalenge. I got a ton more of medicine and in about 1 hour we tried again and this time my body was able to handle the new chemo. The amount of steroids they have given me in the past 24 hours should keep me up for a while.

Well, the battle continues. I did get a call right in the middle of all of this from my Doctor at Memorial Sloan letting us know that the MRI was negative and my brain looked good.
So if you want to know what new - that is about it.

Once again thanks for all of the emails and letters and calls they all really help. Nicki,Dan,Jeremy,Sara,Whitney and even Molly can never express out thanks to all of you

Looking forward till tomorrow


Love Mark

Its Deja Vu All Over Again


Well I don't want to be too repetitive but in case people are curious as to what is going on lately with Mark I will catch you up. Once again, my dad went in for his second round of chemo and yet again he had an allergic reaction. The doctors said that there was a very slight chance that this would happen, and look how lucky...it happened again. And of course, after he recovered from the allergic reaction, he went on and finished it all up like a good boy.

beyond just them chemo, dad also had an MRI scan on his brain to make sure the cancer hadn't by chance spread to his brain. Thankfully, the results came up negative, so that is one less thing to worry about! It is strange how recently negative news seems to be positive news. I pray that more and more negative news turns out to be for the best, so lets keep our fingers crossed and our prayers abundant.

I am looking to put a little twist on this blog for a few days. Can an old friend or relative tell a funny story with my dad as the culprit. I don't know about anyone else who makes multiple visits here everyday, but I wouldn't mind a little change, while my dad gets back his stamina so he can make another entry into the blog. Anything at all would be appreciated, the more embarrassing the better.

As always, thank you all for your prayers and continued support. It certainly does not go unnoticed.

He who has a why to live can bear almost any how. ~Friedrich Nietzsche

Tuesday, July 17, 2007

The new Chemo

Well as I said to Nicki while driving to the hospital to get the new chemo I have a feeling that this was going to be an easy day. Boy was I wrong!

The night before I had to take 10 Steroid pills. So far so good. At the hospital they gave me 4 different bags of IV to get me ready for the Chemo. I should have realized when the nurse stated she would stay with me for a while, that I might have been in for quite a ride.

After about 45 minutes of getting me ready she started the new chemo - it lasts about 45 seconds and my stomach started to burn. The nurse hit the stop button and before I knew it I had 4 doctors and 3 nurses surrounding me. This took less than 1 minute, I could not breathe and my head was about to explode. To cut to the chase I had a very bad allergic reaction to the chemo. All I could see was bright lights but the team was right there and brought me back. What ever they were pumping into me did the job. THEY CLEANED MY SYSTEM OUT AND ASKED IF i WANTED TO TRY AGAIN. WHAT DO YOU THINK? GIVE ME 10 MORE MINUTES AND LETS ROCK AND ROLL. In that short time I was able to build up some antibodies and my system took the chemo.

What was to be about 2 hours in the hospital turned out to be 6 hours. The staff was just the best caring group of professionals. One of my doctors I think broke the heel on her shoes running up a flight of stairs to get to me, but they were all there along side (of course with my Nicki holding my hand). Driving home I told Nicki it looked like it was going to be an easy day.
Boy did I blow that.

Looking forward till tomorrow

Love


Mark

Saturday, July 14, 2007

It has been a long time

This disease has the ability to rule your life. I would never believe how tired you get and more importantly how it has the ability to take you down emotionally.

In the past 3 weeks I have been in the hospital at least 3 times and have felt like I should have been in even more. The one thing that has been consistant is the support from family and friends
each and every day. I stopped writting but many of you have continued to write each and every day of the week.
Cancer seems to get joy out of playing with your emotions. You must battle it every moment of every day because once it gets into your feelings it takes twice as much energy to keep up the positive battle.

I will continue to fight. I am starting new Chemo on Monday 7/16 and will stay on that for a few weeks. The doctors want this Chemo to get me ready for some new experimental Chemo.

Each morning I wake and start the battle over again with the support of all of you and the work that the doctors are doing I have the tools that will help me win this battle.

I will try to write more often.

Looking forward till tomorrow

Love to all

Mark

Saturday, June 23, 2007

Back Home

Well when I last left you I was just going out for a jog. (Sorry wrong Blog).

As some of you know I was rushed into the hospital (Sloan) about 2 weeks ago. I stayed there for a week and got home this past Monday. Once home it has taken a while to get my strength back. So here we are feeling better and as some of the nurses at the hospital have said the next time they want to see me is on the street. As always many thanks to all of those who have helped out. Thanks for all of the cards and e mails as well as to the friends and family who have helped Nicki. She is working 24/7 and your support to her has been truly appreciated.

This past Thursday Nicki along with Cantor Jerri had a healing circle for me. This was arranged at the last minute. It was truly a wonderful experience. I feel that all the people that attended
got as much out of it as I did. Much thanks to Jerri for her beautiful words and voice. My house filled up with love and warmth. Again this was done at the last minute and I thank all of those who attended and for those who did not know about it we are sorry you were not notified but it was done on the fly.

Well since I am feeling stronger I will try to get back to writing more often.

Looking forward to tomorrow.

Love

Mark

Sunday, June 17, 2007

Monday, June 11, 2007

“Joy lies in the fight, in the attempt, in the suffering involved, not in the victory itself”


We apologize for the lack of posting and keeping everyone out of the loop. For those that do not know, Mark had to go back to the hospital today to be treated for dehydration and yet again, pain and nausea management. Today was supposed to be his last day of radiation treatment if he hadn't went back to the hospital, but he will complete his tenth and last day of treatment within the next few days. He was also due for his next round of chemo-therapy, but the oncologist decided that it may be a wise idea to take a couple of weeks off from any kind of treatment and I don't think any of us disagree.

While my dad is not having the easiest of times, and much of his day consists of resting in bed due to a lack of energy, (pretty understandable if you see the amount of drugs that go into his body on a regular basis) he is still fighting his fight and showing the courage that we all have grown to respect and love. Mark wants to apologize for not entering anything as of late, but he ensures that he will be back and better than ever, I have no doubts myself. Again, although he does not always return your phone calls or email you back, be sure to know that anything that is being said on here, emailed, left on voicemail, or written in a letter, really does play a huge role in his strength and support. My family and I are extremely greatful for all the support and love we have received from everyone far and near. Your thoughts and prayers go a long way and we are forever appreciative.

Keep writing, emailing, praying, and calling and soon Mark will just have a longer and longer list of people he will have to get back to when he beats this out.

Thank you to everyone for making this battle a little easier.

Looking forward to tomorrow,

Dan (temporarily filling in for Mark)

Monday, May 28, 2007

I didn't think I was that lazy!

Well so many people have sent e mails and phone calls that I have not responded to, so I will bring you up to date.

Last Thursday I stopped the AZD, on Sunday I was in the hospital for 3 days on heavy meds. I am on Methadone 4 times a day and when the pain gets bad I take a small breakthrough drug. I started new Chemo on Monday and take anti nausea medicine - all of this makes me very tired. For most of the weekend I have been out of the bed for only about 4 hours a day.

I will start radiation on 3 lesions on my back and 1 on my chest on Tuesday. They feel it will reduce the pain and maybe I will not need to take all of the pain meds and then I can be awake for longer periods of time.

Jeremy, Dan, Sara, Whitney & Molly all were here for a lot of the weekend. With Nicki directing everyone this was the best place in the world to be treated at.

The radiation takes 10 days and I will get more tired they tell me. I guess I did not have enough space between my last treatment and my new one because I didn't think I was that lazy.

Please do not take my not calling you back or not answering your e mails a something that I do not want - I look forward to them all. Special thanks to the friends who have dropped off meds and have gone way out of the way. I know many of you have offered but there is only so much that can be done.

Your efforts, thoughts and prayers are very appreciated.

Looking forward till tomorrow

Love

Mark

Thursday, May 24, 2007

I'm really back..

Well as the Grateful Dead said "What along strange trip its been".

Last weekend I started getting a lot of pain so by Sunday I was in the urgent care unit of Sloan. Once again lots of thanks to family and friends MD George Goldmark (MD George) his brother in-law Jeff and of course Nicki. The staff at Sloan was unbelievable. In less than 5 minutes they had me on a Morphine drip (2) and soon after 3 doses of Methadone as well as steroids etc. They did a fabulous job of regulating my pain and building me up to a level that can be managed from home via pills. They chose to start me on new chemo on Monday so far no really bad reactions but once again they have spent lots of time taking me through what was going to happen and what was happening. I would meet for 1/2 hour with teams of Md and nurses that shared with me time and care in helping me through each step.
I will begin radiation on my spine this Friday and the Chemo step i should be done by Sat morning. I get about 20 days rest for my body to get itself back. Radiation goes on for 10 days but only 5 min per day.
Well I hope that brings you all up to date. Once again I cant list the names of all that have helped me and my family through this episode.From people I have never met sending flowers to food being delivers to all of the small favors that mean so much and most of all the cards, emails phone calls etc. you could never be thanked enough. Hopefully later on today i will do another post or tomorrow I get a little tired being on so much Methadone.

But thanks to all

Looking forward till tomorrow

With much love


Mark

Friday, May 18, 2007

Well we tried our best

As most of you now know the AZD treatment did not work for me. I titled this blog We tried our best. Each decision I have made has been done with the complete input of my sons Jeremy and Dan and of course Nicki. They have provided me with all of the support needed in trying to get through this. To do this alone is an impossible task and their love and support has provided me with the ability to put up the fight.
Last night was a big bump in the road but with all of the support I get I will just have to work harder getting up the other side of the bump. We start the new war on Tues.

I look forward til tomorrow.

Mark

Thursday, May 17, 2007

A New Start

Tonight my dad had a brain MRI and a CT scan. He wasn't supposed to meet with Dr. Wolchok until next Monday, but we were able to get in to see him after the scans were completed.

First, Ruthie, Dr. Wolchok's research nurse came in to ask my dad a few follow up questions about how he was feeling. After running through the list of questions, we nervously began to ask about the results of the test. Ruthie let us know that the brain scan showed no lesions of any kind, which was a big relief.

Next, she indicated that the CT scan showed some good news - that some of the tumors had gotten smaller, while others have stayed the same. The lesions in his liver had grown a bit, which explained the horrible nausea he's been having the past several days. She told us that the results were a mixed bag, but thought that he should remain on the AZD6244. While we weren't overjoyed, we were quietly hopeful that the medicine was working.

Only a few moments later, Dr. Wolchok came in to meet with us. Unfortunately, he presented us with a different scenario - that the tumors had not gotten smaller, in fact , some had gotten a little larger. He suggested that we stop with the experimental AZD6244 and pursue a different course of action.

His recommendation was to begin chemotherapy next week. A combination of three different drugs - Cisplatin, Vinblastine, and Temodar. (I'll get into the details of this treatment at a later date.) This would have been the treatment for stage iv melanoma had my father not decided to participate in the clinical trial.

Postscript:
Today was a roller coaster ride. I do not blame Ruthie for her initial diagnosis, I actually took it as a positive that the growth of the tumors was so limited that she actually though they had gotten smaller. But it was a painful evening, and my parents were stunned...

But, tomorrow is a new start - we'll take a deep breath, focus on a new treatment, and continue to fight, believe, and survive.

Tuesday, May 15, 2007

Happy Anniversary!

Today is my parent's anniversary. Their love and respect for each other has never been more apparent then it is at this point in time.

Please join me in wishing them a very happy anniversary and many more.

Monday, May 14, 2007

Complimentary and Alternative Treatments

Hey Dad, I was looking into some alternatives to treating specifically your nausea. I know there are plenty of theories out there with all types of suggestions but I was just throwing it out there to see if anyone had experienced any of those suggested.

Complementary and alternative cancer treatment: Get the facts
Complementary and alternative medicine treatments for cancer won't cure your cancer. But some might help ease the side effects that come with cancer treatment.

It's not unusual for you to want to explore complementary and alternative medicine if you have cancer — up to half of people with cancer will try these therapies. Standard cancer treatments often have significant side effects and may not be 100 percent effective. Especially if your cancer treatment is particularly difficult to endure or doesn't promise you the results you desire, complementary and alternative medicine may appear to be an attractive treatment option. The longer you have cancer, the more likely you are to start searching for these other cancer treatment options.

But keep in mind as you research complementary and alternative medicine that some therapies may improve your quality of life and others, even if used correctly, can harm you. Approach complementary and alternative medicine with an open, yet cautious mind. Gather as much information as you can and discuss with your doctor any treatments you're considering.
Complementary and alternative medicine marketed as cancer treatment

You'll probably find advertisements that claim a particular complementary and alternative medicine product or therapy will cure your cancer. Don't believe it. Complementary and alternative medicine can't cure cancer. If it did, everyone would be using it. Even so, some people with cancer forgo conventional, proven cancer treatment and spend thousands of dollars trying questionable or ineffective therapy.

Giving up on conventional cancer treatment that has been proved repeatedly in clinical trials to help people with cancer can be risky and even deadly. Avoid alternative therapists who pressure you to give up the treatment your doctor recommends for a treatment that's unproved. Your doctor can discuss with you the pros and cons of conventional therapy as well as which complementary and alternative therapies are safe to try for your particular situation.

Always tell your doctor before you begin taking any complementary and alternative medicine treatments. This is especially important if you're currently taking chemotherapy. In some instances, combining complementary and alternative treatments with your chemotherapy regimen can cause great harm, either by rendering the chemotherapy ineffective or by increasing the side effects or toxic effects of the chemotherapy drugs.

Here's a look at products and therapies that are often marketed as cancer treatments:

Nutrition and herbs
Nutritional therapy and herbal therapy are often touted as "natural," which might sound appealing. But natural doesn't always mean safe. Talk to your doctor about how these options might complement or interfere with your current cancer treatment.

* Antioxidant supplements. Antioxidants occur naturally in many foods, including fruits, vegetables, nuts, grains and some meats. Some studies have reported that antioxidants may slow cancer growth in the test tube, but no proof exists that this occurs in humans. Doctors aren't sure if supplements — sometimes with antioxidant levels thousands of times higher than those found in food — are as safe as food sources of antioxidants. These supplements might interfere with your cancer treatment, such as chemotherapy, and could be dangerous. One study showed that smokers who used antioxidant supplements had a higher risk of lung cancer than those who didn't use the supplements.
* Alkaline diet. A diet rich in certain alkaline foods, meaning foods that aren't acidic, won't cure cancer. Proponents of this diet claim foods such as soft drinks and meats make your body acidic, allowing cancer to flourish. They suggest eating mainly alkaline foods, such as fruits and vegetables, and restricting acidic foods. The theory that acid causes cancer isn't true, and it isn't clear that what you eat has any impact on your body's overall acidity or alkalinity.
* Essiac. Essiac is an herbal tea mixture that has been touted to relieve pain and reduce the size of tumors. The original formula contained four herbs: burdock, rhubarb, sheep sorrel and slippery elm. Some newer products and knockoffs have other herbs added as well. Though some early tests have shown that chemicals in the herbs used in Essiac have some antioxidant, anti-inflammatory or anti-cancer activity, Essiac hasn't been proved to have any effect on cancer.
* Laetrile (amygdalin). Taken orally or as an injection, laetrile is a purified form of amygdalin, a chemical found in lima beans, raw nuts and the pits of many fruits. Amygdalin produces cyanide, which proponents claim kills cancer. But laetrile hasn't been proved to work against cancer and has even caused several deaths.
* Macrobiotic diet. The macrobiotic diet is strictly vegetarian and requires you to consume about half of your daily calories from whole grains, about a quarter of your calories from vegetables, and the rest of your calories from beans, seaweed and soups. The macrobiotic diet is marketed for both prevention and treatment of cancer, though no proof exists that it does either. Eating plenty of vegetables can reduce your risk of cancer, but how much you should eat or which vegetables you should choose is unknown.
* Megavitamin treatments. Megavitamin treatments usually combine high doses of vitamins A, C and E — sometimes requiring you to take hundreds of pills a day. These vitamins are an important part of everybody's diet, whether you have cancer or not. But if you already eat plenty of fruits and vegetables, you probably get enough of these vitamins without taking supplements. Too much of a vitamin can even be dangerous and can interfere with your cancer treatment.
* Mistletoe. Mistletoe injections are given two to three times a week. They're used mostly in Europe and aren't available in the United States. Mistletoe extracts have been shown to kill some cancer cells in laboratory and animal experiments. Studies in people have had mixed results.

Detoxifying treatments
Proponents claim that detoxification treatments clear your body of harmful substances and stimulate your immune system to attack the cancer in your body. But detoxification therapy can be invasive and dangerous.

Most people with cancer have a functioning immune system, so the need to further stimulate it is unnecessary. And because cancer cells seem to hide from normal immune systems, stimulating your immune system won't help your body fight off your cancer. Also, no evidence exists to support the theory that removing "harmful substances" affects cancer.

* Colon therapy. Colon therapy removes waste from your colon through a process called a high colonic, in which a plastic tube is inserted through your rectum and into your colon. Up to 20 gallons of liquid — usually water, herbal solutions or coffee — is pumped into your large intestine. This is repeated several times. No evidence exists to support the use of colon therapy, and treatment can cause infection and mineral and electrolyte imbalances that can be dangerous.
* Gerson therapy. The Gerson therapy uses minerals, enzymes and hormones to "detoxify" and "cleanse" your body. The therapy requires that you consume 13 glasses of organic fruit and vegetable juice every day. You must also follow a vegetarian diet and have coffee or chamomile enemas. No conclusive proof of the Gerson therapy's effect on cancer is available. Some people on this regimen report feeling more energetic, often due to the large amounts of caffeine absorbed through the colon as part of this therapy.
* Gonzalez treatment. The Gonzalez treatment incorporates special diets, supplements, pancreatic enzymes and coffee enemas to treat cancer. Proponents believe that the main anti-cancer component in this regimen is pig pancreas enzymes. The Gonzalez treatment is highly controversial but showed some promise in a small study. It's currently being investigated in a larger study sponsored by the National Cancer Institute.

Chemical and animal-based treatments
These treatments are based on chemicals or components that come from humans or animals.

* 714-X. This treatment is a solution of camphor, nitrogen, ammonium salts and ethanol. It's purported to stabilize your immune system, so your body regains its ability to fight your cancer. It can be injected or inhaled. No scientific proof exists of 714-X's effectiveness, and it isn't available in the United States.
* Antineoplastons. Proponents claim that antineoplaston therapy causes tumor cells to die by stopping some of the processes involved in their growth. Antineoplastons are isolated from horse urine and are taken orally or by injection. Trials of antineoplaston therapy haven't shown any anti-cancer activity. Several more clinical trials of antineoplaston therapy are currently under way.
* Cancell (Entelev, Cantron, Jim's Juice, Crocinic Acid). Cancell is a dark brown liquid that is taken orally or rectally, or applied to your wrist or foot. Its manufacturers say it changes cancer cells so that your body recognizes them as foreign and eventually destroys them. Cancell contains 12 compounds, including inositol, nitric acid, sodium sulfite, potassium hydroxide, sulfuric acid and catechol. No proof exists that these compounds cure cancer. Cancell has never been scientifically tested on people.
* Coenzyme Q10. Your body naturally produces coenzymes to help stimulate chemical reactions in your body. Proponents of coenzyme Q10 believe that people with cancer and other conditions have lower levels of coenzyme Q10, though no evidence of this exists. When you take coenzyme Q10, either as an injection or a pill, it may act as an antioxidant and stimulate your immune system. No definitive studies have shown that coenzyme Q10 has any effect on cancer. Some practitioners claim coenzyme Q10 protects your heart from damage caused by certain chemotherapy drugs, though research has yet to prove this claim.
* Oxygen therapy. Oxygen therapy uses ozone or hydrogen peroxide to supposedly add extra oxygen to your body. Proponents believe cancer cells need a low-oxygen environment to survive, and that flooding your body with extra oxygen will kill cancer cells. Ozone gas can be mixed with water or air, and users usually drink or inhale the solution. It can also be injected into a muscle. Hydrogen peroxide is sometimes injected into a vein, though it can also be administered rectally. Oxygen therapy hasn't been studied in people. Hydrogen peroxide bubbles in the blood can block blood flow and lead to death.
* Shark cartilage. Proponents believe that shark cartilage stops a tumor's growth by preventing it from growing new blood vessels (angiogenesis). The rationale behind this theory is the belief that sharks don't get cancer, although that has since been proved false. Some anti-tumor substances have been found in cartilage, though, and shark cartilage has been used in clinical trials. The Food and Drug Administration found no conclusive evidence that shark cartilage works and recommends against using shark cartilage as a cancer treatment. Clinical trials using substances isolated from shark cartilage are currently under way.

MORE ON THIS TOPIC

* Herbal supplements: What to know before you buy
* Dietary supplements: Using vitamin and mineral supplements wisely
* Colon cleansing: Is it helpful or harmful?
* Coenzyme Q10

Complementary and alternative medicine to ease side effects of cancer treatment

Most people with cancer who use complementary and alternative medicine don't expect the treatments to cure their cancer. They may use complementary and alternative medicine to treat the pain associated with their cancer and control the side effects of treatment, such as nausea and weakness. Your doctor might recommend conventional medications or complementary and alternative medicine therapies, such as acupuncture or massage, for these signs and symptoms. These types of therapy aren't specific to cancer and can treat pain and side effects of many other conditions, as well.

In general, these treatments aren't invasive, making them safer than other complementary and alternative medicine treatments. Still, talk to your doctor about these types of therapy before using them.

* Acupuncture. In this treatment, tiny needles are inserted into your skin to stimulate your body's natural energy, or qi (pronounced "che"). By restoring the natural flow of qi, acupuncture is supposed to help your body heal itself. Acupuncture has been effective in treating pain and nausea in some people with cancer.
* Aromatherapy. Proponents believe that fragrant oils from plants can affect your mood. About 40 oils are commonly used in aromatherapy. They can be smelled at home or at a spa, or applied as oil during a massage. Though little proof of its benefit exists, aromatherapy is said to help pain, depression and stress, and promote a general sense of well-being.
* Hypnotherapy. This relaxation method effectively relieves some chronic pain, and it may also reduce nausea and vomiting in people with cancer. Although you may look like you're asleep during hypnosis, you actually go into a state of deep concentration. While you're under hypnosis, your practitioner may suggest you focus on goals, such as controlling your pain and reducing your stress.
* Massage therapy. During a massage, your practitioner kneads your skin, muscles and tendons in an effort to relieve muscle tension and stress and promote relaxation. Several massage methods exist. If you're currently receiving conventional chemotherapy, check with your doctor before undergoing massage. If you have a low platelet count because of chemotherapy, deep massage can cause bleeding or bruising. Certain types of massage and spinal manipulation can also be unsafe if the bones in your back or neck have been weakened by cancer.
* Therapeutic touch. Touch therapy practitioners claim to use their hands to transmit "energy forces" that can heal the energy force that runs through you. By moving their hands back and forth across your body, they claim to be able to locate and remove your energy force disturbances. Practitioners believe this reduces pain and encourages relaxation.

Many other types of complementary and alternative medicine are promoted for pain relief. They include homeopathy, reflexology, relaxation, spirituality, and art and music therapy.

Wednesday, May 9, 2007

Sorry,Sorry,Sorry.

I know that I have committed to write often but there are times that I commit to sit down and write but either i was too tired or did not feel up to it or some other lame excuse. Sorry.

I have received many calls and e mails asking whats up with the blog and why have I not written. Question? Did Hemingway, Shakespere, Melvile, etc get those same calls. Maybe?

Well anyway my treatment continues to go on with all of the side effects they indicated I would have. Some better than others but nothing that I can't handle.

My visit to Sloan on Monday with my Doctors showed no changes in my blood work since the last visit (always a positive) . Whats funny is in the past pre cancer when a Doctor would say no change I would be depressed. Now when they say no change I am a happy camper.

It seems like everyday there is a special on Cancer Survivors the latest a interview with a reporter from Public Radio which was very inspiring.

There are over 10 million cancer patients in the US today.

The fight continues on a daily basis but with your help and support it is much easier to handle.


So to all of you that read the blog and have missed my fabulous commentary I am sorry,sorry,sorry.


PS TO ALL MOMS ESPECIALLY MINE HAPPY MOTHERS DAY


Just one more thought. Over the next few days call someone that you have not spoken to in over a year.I know you will feel great when you are finished talking or emailing that person.
Try it you will like it. I know I do.


Love to all

Looking forward to tomorrow

Mark

Thursday, May 3, 2007

Tony Snow Returns To Work

While not a fan of his politics, I thought he had some nice things to say about dealing with his cancer.

Wednesday, May 2, 2007

Everyday it is something new.

No I am not going to write about the new pains or the new reasons why I should be depressed. Instead I find that everyday there is something new that makes my eyes open wider, a smile grow a little larger and a warmer feeling in my heart. The new thing is really an old thing but I did not really think about it. I am on a daily basis finding the warmth generated to me by so many people, I have cards and notes arriving on a daily basis, books are dropped by the door,
phone calls and emails seem to never stop. I get goose bumps by the stories and notes that are
sent to me.

So when I say everyday is something new I mean it, and look forward to tomorrow and something new.

Just as an aside, take a look at the comment by Mr.Raif on the last post it will make you feel good.

Looking forward till tomorrow.

Mark

Sunday, April 29, 2007

Get out and enjoy!

As most of you know I spend most of my free time outdoors. With the weather finally getting nice you would be hard pressed to to catch Nicki or me inside. Well for the the past 4 days I have stayed in the house. The price you pay with fighting this disease is being tired all the time and dealing with all of the side effects of the drugs. This morning was no exception, I felt like the only thing I wanted to do was stay in bed.
The mind is the most powerful part of our bodies. I told Dan we would try to meet for lunch but my body said no way. Cut to the chase, after a few minutes of my mind telling my body that we were going out and that it was in control, and I was not going to stand for this today - I dressed and Nicki drove me to Dan and Whitney's house.
I got out. My mind won and won for the good. It was great getting out for a few hours, make sure you do the same. Let your mind tell your body what to do. It works.

See you tomorrow.

Mark

Wednesday, April 25, 2007

One Thousand Two Hundred Sixty Five

That is the number of times people have read the blog in the last 2 weeks- 1,265. I find that to be, at first unbelievable, but when I consider the type of people that I have known, I understand. You are the most caring, concerned friends, and family a person could ever have and I am forever grateful.

Jeremy and Dan are trying hard to keep it as interesting as possible and provide all of you with as much information as they can. Since I am not allowed to thank them ( I have been told) I guess I can tell them how proud I am of them.

Many of you have asked how I am feeling and I chose not to make this a "How is Mark Today" Blog. Just to make it easier for all concerned, some days better than others but nothing I can't
handle. You just have to adjust, enough about me.

Once again thanks for the support. Nicki sends her love to all and continues to bring cheer into my life.

Looking forward to tomorrow


Mark

Bracelet Donations


Good morning!

As Jeremy posted several days ago, we have designed bracelets similar to the Lance Armstrong LIVESTRONG bracelets. We have already given out the first order of 75 that we received last week. Since they were such a huge hit or since people felt so inclined to support my father, we have decided to order 100 more.

Many people have been asking us how much they cost and our primary intention was just to give the bracelets to those that wanted to express their support. Jeremy and I have decided to let you determine how much (if anything), you would like to donate to the cause. We thought it would be most appropriate to have donations go to the Memorial Sloan-Kettering Cancer Center, since they are treating my father and have been nothing less than amazing. This link will take you directly to the donations page where you can select what cause you want to donate to, preferably Melanoma. Any donation is greatly appreciated.

Click here to donate to Memorial Sloan-Kettering Cancer Center

If you have not received one and would like one, please let one of us know and we can either try to mail them to you or work out a way to meet you.

Thanks again for all your support.

Tuesday, April 24, 2007

A New Cheerleader

My Dad has a new cheerleader - meet Junior - scheduled to arrive sometime around November 8th.

Monday, April 23, 2007

Today is my birthday !

Before you begin to read this I want you to know it is from Nicki, she has a problem with her password so she is using mine.


Today is my birthday. I've been putting off writing on Mark's blog, mostly because I was concerned that I wouldn't be able to know the right things to say. I'd like to be clever and profound and express myself in the most meaningful way; however, I'm not sure if that moment will occur so,"Carpe Diem", seize the day!

Today is my birthday. Even with our current circumstances I feel that I am blessed. I have the love and devotion of friends and family, the prayers and sincere thoughts of those people who have recently become friends, and of course I have "The Love of My Life" alongside me.

Today is my birthday. With everyone's help, prayers, and positive energy my "Knight in shining armor"will defeat his enemy.

Please continue to make my greatest wish come true.

I want everyone to accept my most sincere gratitude and love.

Nicki

Thursday, April 19, 2007

A quick note of thanks

It is the most amazing feeling to have all of the notes, cards, phone calls e mails etc. that I have received over the past few weeks. I have spoken to people I havn't spoken to in over 20 years. I have had such warm conversations with people I speak to everyday and just have taken that for granted. I would never have imagined that I would have gotten this much attention but I must say I love it. I can never be able to respond to all of you in the way in which you have gotten in touch with me but I really just want to say I love you all and thanks for the support . You will never know what it really means to me and my family. We all thank you so much.

Wednesday, April 18, 2007

Canine treatments may shed light on cancer

An article in the Los Angeles Times includes an interview with my father's doctor Dr. Wolchok, who is one of the lead investigators on a project that is developing a vaccine for a canine melanoma. This research will hopefully provide further understanding into the treatment of humans with melanoma.

They can sit, and stay, and fetch. They can sniff out drugs, guide the blind, dial 911.

Maybe they can even cure cancer — or help cure it, anyway. Many scientists see cancer in dogs as an excellent model for cancer in humans, and evidence is growing that they're barking up a very useful tree.

Late last month, a vaccine to treat canine melanoma won conditional approval from the U.S. Department of Agriculture — the first time the government has approved a therapeutic vaccine for treating cancer in either animals or people. And trials are underway on a similar vaccine to treat melanoma in people.

Read the rest of the article here.

Tuesday, April 17, 2007

A wake up call

Over the past few weeks I have had the conversation with my family about how we never know what the future holds. Upon my learning of my condition the thing we spoke about is the fact that you never know what is in store for you or your loved ones. Make today count.

Having time on my hands I got to watch TV and spent the day watching the scenes from Virginia Tech.

Make each day count, you never know what the future holds.

Looking forward to tomorrow

Regards


Mark

Food Recommendations?

My dad has been feeling pretty nauseous lately - does anyone have any recommendations for foods he should try? He had a craving for blueberry blintzes recently...

Monday, April 16, 2007

Something to think about!

Just came back from Sloan for my one week evaluation. For the first time I have started to have reactions from the drug. All along they told me I would. At this point it is a rash on my face, neck, scalp, etc. as well as feeling more nauseous than usual. Speaking to my nurse (who really knows everything) she expressed how glad she was because it meant that since it was causing those reactions it was also engaging the melanoma cells.

The question is - do I want to get sicker and feel like the fight is really on or do I hope for a round at a time and beat it in 12 rounds?

Since I don't have control I go with whatever comes my way. But it is something to think about.


Looking forward to tomorrow

Regards

Mark

Array BioPharma achieves milestone

Array BioPharma achieves milestone for dosing MEK inhibitor

Saturday, April 14, 2007 14:00 IST
Boulder, Colorado

AstraZeneca PLC dosed its first cancer patient in a phase 1 clinical trial with our MEK inhibitor, ARRY-704 (AZD8330), triggering a $2 million milestone payment from AstraZeneca to Array BioPharma Inc. In December 2003, Array partnered the oncology portion of its MEK programme, including its lead compound, ARRY-886 (AZD6244), for co-development and commercialisation with AstraZeneca.

The collaboration included research and development of additional clinical candidates, which resulted in the selection of ARRY-704 in December 2005.

ARRY-704 is a potent, selective, orally active MEK inhibitor that blocks signal transduction pathways implicated in cancer cell proliferation and survival. ARRY-704 has shown tumour suppressive activity in multiple preclinical models of human cancer including melanoma, pancreatic, colon, lung, and breast cancers.

More Success in Another AZD6244 Trial

Researchers at the National Cancer Centre of Singapore have had a successful trial for another type of cancer commonly found in Asia and Africa (I've highlighted the important parts):

Hepatocellular carcinoma (HCC) is a common malignancy in Asia and Africa. We previously reported that overexpression of extracellular signal-regulated kinase (ERK) kinase 1/2 (MEK1/2) and ERK1/2 was detected in HCC, and that their activation was required for liver cancer cell proliferation and survival. In the present study, we determined the efficacy of a specific MEK1/2 inhibitor AZD6244 (ARRAY-142886) in treatment of HCC. Treatment of primary HCC cells with AZD6244 led to growth inhibition, elevation of the cleavage of caspase-3 and caspase-7, and cleaved poly(ADP)ribose polymerase, but inhibition of ERK1/2 and p90RSK phosphorylation. Studying the protein expression profile of seven HCC xenografts revealed that their growth rate was positively correlated with the levels of phosphorylated MEK. AZD6244, when given p.o. to mice bearing these xenografts, resulted in a dose-dependent inhibition of tumor growth. AZD6244-induced growth suppression was associated with inactivation of ERK1/2 and p90RSK, and up-regulation of activated caspase-3 and caspase-7, and cleaved poly(ADP)ribose polymerase. Our data suggest that the MEK-ERK pathway plays an important role in the growth and survival of liver cancer cells and that the HCC xenograft models are excellent tools for screening preclinical drugs. Targeted inhibition of the MEK-ERK pathway with AZD6244 may represent an alternative approach for the treatment of this disease.

Sunday, April 15, 2007

Thanks for all the responses

I received a number of replies today. Thanks to all of you who responded, as well as to all of you who just read the blog.
I did receive a response from a person who will be starting the drug this Tues. She wishes to stay out of the blog but I have started to email her. This in itself has made the whole blog worthwhile. She is from the south and emailing her has helped both of us more than you can imagine.

Once again thanks for all of your support

Looking forward to tomorrow


Mark

CONVERSATIONS WITH MYSELF

If you can't be honest with yourself now, when can you be? Throughout life how many times do you look in the mirror while shaving or putting on makeup or getting dressed and talked to yourself?

Gee, I look good or I really need to get my haircut or that tan makes me look younger (sexier).
I guess it has occurred thousands of times and most of the time I wasn't even aware of it.

Now a look in the mirror tells a whole new story. In a few seconds the most important parts of my life get played out. The strange part is that two scenarios always occur. The first is Lets Make a Deal. I will do that - if I can have that. I guess that falls into the spiritual side.

The other scene is the one of me looking into the mirror, cursing up a storm and telling the cancer I will kick its ass and it does not know who it is messing with. I guess that's my competitive side.

Either side allows me to win so I will continue to look in the mirror and have those conversations with myself.

I suggest that you do as well, it really makes you feel better


Sorry for missing a day but I look forward to tomorrow.

Mark

Saturday, April 14, 2007

Posting Comments (updated)...

I know many of you have had trouble posting comments to this blog, so here are step-by-step instructions:

In order to post comments, you must have a Google account - the easiest way to get one is to sign up for GMail - Google's free email service. Sign up here.

Once you have an account, you can follow the rest of the directions below:

Find the "comments" link at the end of each post, like this:

If you click this link, you will go to the comment posting page.

The comment posting page looks like this:

In the upper left corner, there is an option to show or hide the original blog post that the comments relate to. The rest of the left-hand column contains any comments that have already been made.

On the right hand side of the page is the space for you to enter your comment. Beneath that are the identity options. If you already have a Google account, you can use the same log-in information - otherwise you will be asked to set up a new account in order to post a comment.

I know its a hassle to register, but it prevents spam from getting into the comments.

If you have any trouble, please let one of us know.

Friday, April 13, 2007

The Median Isn't the Message...

by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death."

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?" She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb.

The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn't read the statement in this vernacular way either. My technical training enjoined a different perspective on "eight months median mortality." The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the "I will probably be dead in eight months" may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated.


Stephen Jay Gould died on May 20, 2002 - 20 years after being diagnosed with a disease that had a "median life expectancy" of 8 months...

Melanoma Clinical Trials

Its amazing how many trials are being conducted for the treatment of melanoma. The Melanoma Research Foundation keeps a list of all active trials.

Its important that we keep an eye on these so that we are aware of additional options in the future. If anyone knows people who are involved in any trials of melanoma treatments, we'd love to hear about it.

Thursday, April 12, 2007

Just a fast note.

We had 21 people read the blog the first day and over 40 by day two . Not bad for a pop and sons page(really all sons and very little pop) I guess the real point here is if anyone who reads it can possibly send it on to at least one other person, in a very short period of time it will really do what it was intended to do, and that was to share the info. and in some way help someone.

Looking forward till tomorrow .

AZD4622 Presentation

I found this presentation to be very helpful in really breaking down what the drug does and how it works. I have to admit that I probably only understood 5% of all the information but there are some good graphs to check out. Those that have a scientific background it may be more useful to you. Please feel free to check the link below whch will direct you to the PDF presentation.

http://danielslevine81.googlepages.com/PubAttachment179.pdf

Melanoma Awareness Bracelets

Dan and I ordered some bracelets (similar to the LIVESTRONG bracelets) - Black is apparently the color for melanoma awareness.

They should be in on Monday - let us know if you would like one.

AstraZeneca Business Review

I stumbled upon some interesting information that is available on the web - the 2006 AstraZeneca business review. It covers the drugs they have in their pipeline and the findings of any studies so far. Much of it is too scientific for me to understand, but there is definitely some interesting information. It really seems like there is confidence in the MEK inhibitor as the future of cancer treatment.

You can check out the document here - 2006 Business Review.

Wednesday, April 11, 2007

Whats going on inside?

I just took my sixth treatment of AZ6244 and like all the others it went down just fine. The question I have is what is going on inside. I wish I could just take a look.Wouldn't it be great to see how the cancer cells are reacting to the drug? If they had a reaction would it be better to double up?
I guess I have to wait the 6 weeks until my scans show what is going on. Is this a thought that others have had or is it just a childish Barbarella fantasy?

This blog is really therapeutic since I think of it often and look forward to reading and writing in it.

I thank my two sons for creating it and urging me to take part in it. Hopefully others will join in.

Look forward to entering it again tomorrow.

Tuesday, April 10, 2007

Sharing is Caring

My 2 year old niece says it best, "Sharing is Caring." I am sure all of us learned this when we were a similar age, but holds true to me more now than ever before. Just to reiterate what my father said, this site is not just about him or just for him, it is for all those experiencing something similar to what we are. When I say we, I mean those that have melanoma, those that have a colleague, friend, or family member that has cancer and are just looking to share their experiences (good or bad) with others who are going to listen. After all, the Internet was primarily created to disseminate and share scientific and medical information among scientists, doctors, and researchers. Let's get back to its intended use!

Its not about me!

Well I am Jeremy's and Dan's father. When reading the Blog you understand real quickly that it is not about me but it is about life and the desire and want to live. It is about family, friends business associates and everyone who has stopped by for a moment in my life. The all have one dream and that is to help me and therefore help anyone else who has the disease and may have the chance through AZD 6244 to get better.

I am looking to share my story with others who have taken or are about to take the drug with the same hopes and dreams as I have. Since it is only day 2 of course there are no results yet but at least I can say the first 4 treatments have gone well. The taste of the drug is fine and the process is easy to do. So far so good. I visualize with every sip of the drug that as it is going down the cancer cells are eating it up and dying off as if the were leaves on a tree as winter arrives or as I say to my wife a Pac Man game eating away at the enemy.

I will on a daily basis keep who ever reads this informed. I hope others will join me, we can all grow from the experience as well as help others.

I look forward to tomorrow more than ever before. See you then.

Research Report on Array BioPharma (ARRY)

WR Hamrecht has a research report on ARRY (the company the produces AZD6244) which shows there is significant momentum around the success of this drug. In fact the target price was almost doubled in November based on potential of AZD6244 and the results of the trial my father is participating in.

AZD6244

The main reason we decided to start this blog is to see if we could connect with others that are in similar trial with experimental medications fighting melanoma and try to share information.

My father was selected to participate in a trial with the drug AZD6244 which is a selective MEK inhibitor developed by Array BioPharma and licensed by AstraZeneca. The theory behind the drug is that it can block a protein that the cancer cells need to grow and survive.

He started the drug yesterday - we would love to share experiences with anyone else out there who is also taking this drug or has taken it in the past.

The Specialist

My father was referred to a melanoma specialist at Sloan-Kettering - Dr. Jedd Wolchok.

Dr. Wolchok did an examination and told us the most comforting thing that we had heard so far - that each case should be treated as an individual - ignore what you read or what you've heard, and that as doctors they have seen amazing things.

Next he suggested that my father should enter into a phase II trial with an experimental drug - AZD6244. The trial randomly selects people to either take the AZD6244 (an experimental medicine) or Temozolomide (a chemotherapy drug).

After a ton of paperwork he was officially a lab rat (pending a whole bunch of tests)!

Discovery of the melanoma

My father was having lots of pain radiating from his waist up. Many doctor's appointments later and many tests later - the doctors couldn't find anything.

A friend of my father's (a doctor) suggested that he get a CT Scan of his chest. His insurance company initially rejected the test, calling it unnecessary. My dad's friend actually took the time to call the company and speak directly to one of the doctors there and convinced him to allow the test.

Shortly after the test, the radiologist and his doctor let him know that they had found several lesions - on his bones and some of his organs. We were blown away (obviously). My dad is one of the healthiest guys I know - he hasn't eaten red meat in 25 years, works out all the time, doesn't smoke, etc...

We are very fortunate to have a family friend who is an oncologist at Memorial Sloan-Kettering Cancer Center - he was able to see my dad immediately and began to perform all of the standard tests to determine the type of cancer and try to locate the primary location.

All the tests turned up negative - the doctors were stumped. So the doctor sent my father to get a biopsy on his liver, where one of the lesions were located. The results of that test finally showed that it was a melanoma.

What is Stage IV Melanoma?

Very simply, melanoma is skin cancer and phase IV means that is has spread to other areas of the body, such as bones, organs, and lymph nodes far away from the original tumor.

When cancer gets to this point the consensus is that its "incurable."

The American Cancer Society has a breakdown of the treatment of Melanoma by stage.

In my father's case, they could not locate the "primary" location of the cancer.

Welcome

My brother and I are starting this blog as a central place to share information about the progress of our father who is fighting stage IV melanoma.

We'd like to try and reach others who are also fighting stage IV melanoma.