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.

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

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

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

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

Happy Father's Day Dad!

“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)