Monday, August 31, 2009

Update from NIH regarding TIL and my case ...

I received a phone call today from Dr Hong at NIH. She was calling to get an update on my treatment plan. I told her about my intentions for the BRAF trial which hopefully opens in mid September, when I get back from Gerson. She told me that my case regularly comes up at their monday melanoma meeting. Today they decided that they wanted to put together a plan to reevaluate my case. They want me to call once I get evaluated at UPENN for their trial. If I am accepted I would wait until after the treatment to get results. It's nice to have options.

Thursday, August 27, 2009

Unofficial CT Results from August

The "professionals" will of course have the last word, but I see clear evidence that the target lesion on my liver has reduced in size! There are other spots that once again are either new or are no longer there. I believe we primarily care about the reduction in size of the largest tumors.



CT Scan - May 05, 2009





CT Scan - August 26, 2009



Once the report comes out I will send it to UPMC for Dr Kirkwood's review. I will also send it over to Sharfman, and if he is not on vacation get his opinion as well.

Here is a little tip that I stumbled upon yesterday. When you go in for a CT scan, you have the option to not take the barium sulfate. Yesterday, I was given 3 small cups of Gastrografin. It is typically used in emergency cases because it is much more tolerable and it works much faster. Remember to ask for it when you schedule your next CT scan.

I have been back on track with the Gerson Therapy at home. I am following it as best as I know how. The two week stay at the clinic in Mexico will surely uncover things that I am doing wrong.

Here is a headline that I just read ...


Tumors Hungry For Sugar: Findings Point To New Ways To Fight Cancer.

University of Utah biochemists have made a breakthrough in understanding how cancer cells feed on glucose, possibly paving the way for new drugs designed to starve cancer into submission.


Gerson has been doing this for years!

I am very excited about the results from my last scan. Maybe with a little help from Gerson and then the PLX4032 trial at UPENN when I get home we can put this whole melanoma thing behind us.

Tuesday, August 25, 2009

The time for Gerson is now!

There is a lot to share, I'll try to keep this post brief. First of all, I am confirmed at the Gerson clinic. They are expecting me on September 8, 2009. I now need to work out flights, shuttle and possible hotel. Stay tuned for that shuffle.

I got my order for another CT scan. Tomorrow will be another day of sitting at the hospital, so I'll bring along my laptop and provide twitter updates for all. You can follow me either on my twitter feed (twitter.com/sMelanoma) or by reading the feed that is simulcasted here on the blog. I will of course blog about the results when I have them.

I got back in touch with UPENN regarding the upcoming BRAF trial. They are targeting the middle of September as a start date. This should work out nicely for me to come out of Gerson and go right into this trial. My immune system should hopefully be nicely charged and ready to go.

I have also been back in contact with UPMC. I have asked Dr Kirkwood to officially review my case and see if he agrees with Dr Sharfman or with NIH regarding IL-2 response. I will FedEx him the CD's from tomorrow's scan and setup another trip to Pittsburgh to meet with him.

There is a lot of movement in my case right now, and I am very excited to be going to Gerson. The regimen is difficult but the possibly curative benefits are well worth the additional effort.

Wednesday, August 19, 2009

My Doctor to NIH: No you're wrong!

Dr Sharfman disagrees with NIH and said that he would not put me through another Il-2 course. He further clarified that he has no other clinical studies at his practice that he would be willing to offer me.

He did offer me a palliative treatment of chemotherapy.

It has been about six weeks since my last Il-2 treatment. Remember that it takes time for the immune system to respond even after that period of stimulation. There was a point where I could no longer feel the tumors in my stomach. I have since started feeling them again. I inquired and he did agree that it would be a good idea to get another CT scan done just to see where we are.

He suggested that I speak with Dr Kirkwood at UPMC and see what trials he has available. I told him about the UPENN BRAF trial that I was interested in. Though he had not heard about it, he thought that it might be a good study if I have the BRAF mutation.

I am working on getting back in touch with NIH to see where they stand with this news, but my guess is that I'll get nowhere with them.

I also emailed Gerson to tell them that I am ready to go. I've waited/ wasted six weeks. I would like to get the scan and BRAF testing completed first, but then fly to Mexico where I can sit on the beaches and drink juice while the doctors figure out a new allopathic plan.

I would not have been looking forward to another round of IL-2 anyway, but much like the NIH study, it would have been nice to have had it been my option to decline. Or maybe this is someone else pushing me to Mexico.

Friday, August 14, 2009

Introducing Dr Venna

I had my regular three month dermatological checkup on Wednesday where I met the replacement for Dr Peck who recently retired. Dr Venna has come all the way from the University of California, San Francisco where he specialized in Melanoma.

He was particularly interested in trying to get me involved in an upcoming clinical trial at the Abramson Cancer Center of the University of Pennsylvania regarding a BRAF gene mutation known as V600E. He had been in contact with Dr Flaherty who will be running the study to get enrollment information. The experimental drug is called PLX4032 from Plexxicon Inc.

There is a known mutation in 70% of melanoma cells called BRAF. If tests show that my melanoma cells have this BRAF mutation, studies show that I have a better than 50% shot at having tumor shrinkage or disease stability. This is a chemotherapy drug. It is orally administered and studies show that it is highly targeted and brings with it very low toxicity. Side effects which rarely occur are skin rashes on the hands and feet. This new trial opens up on September 1 and is a phase II clinical trial which means that all participants will receive the real drug at the full dose. I plan to at lease get the blood test to see if I am eligible for this study.

Brief Information about PLX4032.

I asked Dr Venna about his take on my IL-2 response. He agrees that with tumor resolution of the left adrenal gland that my body did in fact show a response. He recommended that I continue that treatment and begin another course. There is nothing stopping me from receiving both treatments, just not at the same time.

Dr Venna will also be in contact with my other oncologists. He’s already placed several phone calls to the vacationing Dr Sharfman. Amy and I have been joking that the ladies who answer the phones for Dr Sharfman are probably tired of hearing my name by now. That’s okay, they were not that friendly to begin with. Knowing that I will probably never get to be part of the discussion when NIH and Dr Sharfman talk to discuss their findings. Dr Venna told me that he would get that information and help me understand the result of that meeting.

How does Mexico play into this? I’ve actually not heard back from them after I sent the blood work results. I need to call them today and see if I can get an update. I think it’s all a matter of timing. Since there will probably be a few weeks between now and when I can start another course of IL-2, I might be spending that time sitting on the beaches of Mexico.

I welcome Dr Venna to the Washington Hospital Center and to my melanoma treatment team. I think his interest and involvement is just what I need to help me identify the correct plan of attack.

Tuesday, August 11, 2009

Liver function? Check!

I just received the fax I was waiting for, the CBC and blood panel from my recent visit to the NIH. Most of my levels are right where they are supposed to be! I do have a slightly low creatinine count which could indicate that I am a vegetarian. Duh!

It does also indicate that my red blood cell count is out of the normal range. Slightly on the lower side. These levels, albeit low are from what I can tell fine. -- If you are a doctor or know something about this, please comment. (or call me if it's bad) For the record, I do not have any symptoms of anemia.

You can download the report from here:
http://files.me.com/phaldon/xjo2w4

The all important enzyme levels that I had been worried about which could indicate liver failure are on the second page and they include Aspartate Aminotransferase and Alanine Aminotransferase. As you can see, they are fine! I am in *reasonably* good health!

Monday, August 10, 2009

NIH to Me: Your doctor is wrong!

I got my phone call from Dr Hong at NIH. Ready for this? They disagree with Dr Sharfman's finding of tumor progression. There are obvious signs of progression in some cases, but there are more reasons to believe that the IL2 was actually working. It's all about timing and specifically how long will it take for the immune system to setup a response as a result of the treatment. They want me to begin another course right away. There is one problem with that, Dr Sharfman is on vacation and apparently cannot be contacted.

Since the initial meeting an NIH, I've been in contact with the Gerson Institute to figure out what updated medical records they need from me in order to re-qualify me for treatment. They wanted updated blood work since the previous report indicated high liver enzyme levels. Though this sounded pretty good to me, I did a little research. High liver enzyme levels indicate a poorly functioning liver. I looked back at the paperwork that I sent them, I believe I sent them blood count while I was on the IL-2. No wonder they we're high. Those counts make me appear almost dead.

I've been calling around all day today to try and get more blood work drawn so that I can get an updated result. In speaking with Dr Hong, I asked about the blood work they had taken while at NIH. She told me that they took a complete history and well now those results are being faxed over. I'm eager to see what my levels are considering that I've been eating nothing but organic food - no meat and no alcohol for the past several months. I'll let you know!

Friday, August 7, 2009

I'm sorry but your Melanoma is a little too Melanoma-eee for us.

After a long day of just sitting around and twittering about nothing at all, the doctor gave me about 15 minutes of his time where he delivered his initial opinion that I am not the superstar they are looking for. As Dr Kirkwood at UPMC mentioned, he is skeptical of the NIH trials because they seem to be hand selecting only those cases where they think they can show significant results. Maybe that's a way of skewing the results in their favor, or maybe its because they know how grueling the treatment really is and they don't want to put people through the treatment if they feel there will be little to no benefit.

I have "hundreds" of tumors on my liver. I have "thousands" of tumors on my liver than cannot be seen. I would be a much better candidate if I were to have one large tumor because the pattern would indicate that the rest of the liver is "healthy". They are still waiting for blood tests to come back. They are looking at liver function. If I have reduced or impaired liver function, I am not a candidate for their protocol.

Dr James Yang was the resident that I met with. He told me that I looked to be in great physical condition. I had vitality and strength. But then questioned, how would I feel in two months? Their protocol requires a two month wait while they culture the cells for injection. During that time my health could drastically change and no longer be healthy enough for their trial. He is nervous about starting someone down a road that they are unable to finish.

He said that one option would be to go do chemotherapy and reduce my tumor burden. Even if only temporarily, it might be long enough to undergo his treatment.

Theirs is a three week protocol. The first week the patient will receive high dose chemotherapy to suppress the immune system. This is a rough week where you get really run down and are pretty much sick the entire time. Then comes the cell therapy and more high dose IL2. And we all know what IL2 can do on the body even when starting from a healthy starting point. Once you can no longer tolerate the treatment you are finished. They fully expect blood counts to drop to 0 during this treatment. Your blood pressure would drop like crazy. Basically I'd be laying there dead.

The third week comes along and I'm just sitting there. They hope that patients recover during this time. Since your blood counts are so low, infections are other possibly deadly complications could occur.

I can't wait!

Dr Yang told me that its a lot about using a crystal ball to figure out eligibility. He said lucky for you, we won't just be using only [his] crystal ball because he was borderline on wether or not he thought I would make it through. Then said, he is more leaning towards not.

He asked about any weight loss and I told him that I had dropped 20 pounds since Dec '08. I dropped to 165 at about the March timeframe and have since plateaued. I credit it mostly to not eating meat and generally eating more healthy all around. I'm at what I consider a healthy weight. He recommended that I get chubby again. You need calories. This is yet another doctor telling me to eat donuts. Just what I need. Thinking to myself, "Excuse me doctor, doesn't sugar feed the cancer? Or are you not allowed to believe that?"

One thing of benefit from my meeting with Dr Yang is that since the BMS buyout of Medarex, the experimental drug Ipilimumab is becoming more available and as a result, more clinical trials are opening up. I need to place a few phone calls today to figure out if there are options for me.

I'll also be calling Gerson today. I've spent a lot of time sitting and waiting for the conventional people to tell me that I am screwed. I need to jump in go get this thing fixed on my own. I could either sit here for the next two weeks, or I could go sit on the beaches of Mexico and drink juices and eat expertly prepared vegetarian foods all day. Oh yeah, there is also the occasional coffee break. :)

My closing thought is this. It is not that I necessarily WANT to do this NIH trial, but it would be nice to have it be MY DECISION to turn it down. Not for any other reason than it is another option. The last thing that I want to hear is that I have no options.

When conventional methods for curing cancer are all dried up, where do you turn? For me, I am going to the Gerson Institute.

Tuesday, August 4, 2009

Upcoming Appointment and MRI Results

I got my MRI results back from last week's scan. Everything looks okay. Just as we suspected, no brain -- er mets.

This means that i will be spending the day on Thursday getting to know the medical team at the National Institute of Health. I won't personally meet with Dr Rosenberg quite yet, but I will be meeting with his team as they examine and qualify me for their treatment plan.

The goal it to talk about their adoptive cell therapy study which will include anywhere from a 3 to 6 week hospital stay. I am a little nervous about this particular study because it includes chemotherapy but as I mentioned earlier, hopefully in such a short period of time it won't have quite the same toxicity. I do need to consider this study as they have achieved a 72% objective response rate and have also seen 30% of their patients go into complete and durable remission.

I'm still taking my vitamins and supplements while enjoying my vegetarian diet at home. One of the books that I am reading suggests that at a very minimum, studies have shown that this diet will decrease side effects from the treatments. They also go on to suggest that chemotherapy is more targeted when adding supplements to the mixture as healthy cells become more tolerable while cancerous cells become more susceptible to the toxicity.

I'll update you again after my Thursday appointment. That should be interesting. In the meantime, I'll be envisioning pac-man doing his thing. :)