Monday, September 27, 2010

Progress in My Healing Plan: Bring on the White Hair!

I'm moving away from Gerson. I'm eating a wider range of foods. My root canal has been extracted. I've managed to acquire access to an adjuvant treatment. I've been accepted in the Ipilimumab trial for extended access. It's been crazy, but it has all been working out quite well.

I've moved away from the strict Gerson regimen and have began working on a new menu and diet plan. I will be following the many guidelines from other "cancer diets" and will continue to maintain a low-fat, low-sodium vegetarian diet. I plan to add in legumes, berries and some of the "super foods" that are widely talked about today. I will continue to steer clear from highly processed and other chemically enhanced foods.

This change puts a rather large hole in my schedule. After all, I'm only doing one coffee enema per day and my juicing schedule is much more relaxed. I've managed to get to work a few times last week, and I plan on making a continued appearance. I was able to go out and spend the day with my son, and am currently trying to plan a weekend camping trip -- a trip that should be much more relaxing than the last.

My mouth is now clear of dental issues or mistakes. The lymph node that was once under my jaw has now cleared. As expected, it was due to the infection which triggered the initial extraction. I've since also had my root canal removed. This clears the last bit of mercury amalgam as well as the possible breeding ground for bacteria. Now I hope, my body's immune system can focus on bigger issues.

I was able to get a prescription of Low-Dose Naltrexone (LDN) have been taking it nightly for a couple weeks. I did experience the as-advertised vivid dreams for the first night or two, so I know that my body was able to accept the medicine. I think it is important to include as an adjuvant and based on there being no negative impacts, my doctor agrees.

It was a bit of a run around, but I finally got in touch with Dr Spira from Virginia Cancer Specialists. Apparently they have expanded even further the access for receiving Ipilimumab. I will be included in the first group of those being treated at this facility with the drug, a fact that turns out to be a moot issue since all facilities must strictly follow the same protocol setup for the clinical trial.

Amy and I had a good conversation with the doctor. We both liked him and not simply because of his impromptu impersonation of Dr Sharfman. It was friendly, but it was funny and dead on accurate. Dr Spira did indicate that clinical trials are different and is one case where it is less about my "interviewing" him and more about him seeing if I am am a fit for the trial. Even still, I decided to tell all and hide nothing. He told me that I could continue with my reduced "Gerson schedule" as well as LDN during my treatment. He warned only that I should not have any vaccines, recently or for a period of time beyond the treatment.

A few of you reached out after my previous post and offered your help in finding the Melacine vaccine. I really appreciated that. After a few phone calls and a chat with "a lady in Canana who's job it is to assist Americans receive Canadian health care", we found out that Melacine is in fact no longer commercially available. I could once again look around for the black market variety, but after my talks with Dr Spira, I suppose this should probably fall out of my current plan.

In preparation for the trial I had to have more bloodwork, an EKG and a head CT. All of which came back clean. I am able to use my recent PET scan as a baseline, but since it was a few weeks ago it puts me on a short time table. If I wanted or needed more time, I would have to get another scan. Since I am ready to go, they booked me for Tuesday, September 28.

Amy and I will go to the clinic in the morning. I will receive a 90 minute infusion into a vein in my arm. They want to monitor me for an hour or more at this first appointment, but then I'll be sent home. There are a number of things I'll need to monitor on my own, but it "should" be nothing like IL2 or chemo. I'll return every three weeks for another infusion for 4 weeks total. After a few weeks, we will scan and check for status. Initially seeing slight progression is apparently common for this drug. It's my understanding that unless things are clearly not working, I would be eligible for another round of 4 treatments.

From all that I have read, the common and early indication of remission and long durability is that my hair will turn white. My son made reference to wizardry, perhaps Merlin or Dumbledore. Another as offered by my friend Patty, while keeping it long I would look like a Tai Chi Grand Master. I guess I had better stop missing class.

Tuesday, September 7, 2010

My Healing Plan

After being fully committed to the Gerson Therapy for a year, it is clear that detox and diet alone will not be enough to reverse my Stage IV Malignant Melanoma. It is now apparent that my case will require the inclusion of some more conventional treatments. I am of course disheartened by the news. Much like others have indicated, I thought I could be the next to heal naturally. In the wake of these developments and after speaking with and considering information from several resources, Amy and I have put together a rather robust plan that is both realistic and curative. It is our intention to leverage the best treatments, adjuvants and life style choices that are both available and real. I would like to share with you, "My Healing Plan".

The Gerson Therapy will remain a critical component of my life. This new healing plan will introduce treatments that will interfere and force me to slow the detoxification process. In preparation of this, I have already started to follow a reduced schedule. Though it would never stand up to critical comments like those from Jon, to someone who is not familiar with the extreme schedule, it will continue to seem like a therapy. This change allows me to stay proactive and for once, I can be relieved knowing that there will be days where the schedule is not perfect.

I will remain on the Gerson diet. I've grown fond of it over the past year, and it is super easy to plan for and prepare. I also still believe that the food we eat is critical to our health and after doing it for a year, I want to ensure that I am as prepared as I can be as I move closer to receiving conventional treatments. I have yet to cheat on the diet but, I intend to enjoy a "blue cupcake" at Ella's third birthday party in November.

I blogged recently about the removal of my mercury amalgams and tooth extraction. My one remaining dental issue is a dead tooth that has had a root canal. This is the next item on "My Healing Plan" as it already scheduled to come out on Tuesday, September 14 by Dr Sambataro.

It may seem that I've rushed into the tooth extraction, but with good reason. With the recent news of bone metastases, I am now running against a new clock. I've only felt dull and very minor discomfort in my leg from the cancer. As time goes on, it will surely spread and grow increasingly painful. The spread could also weaken my leg bone. Dr Jang recommends Zometa to harden the bone and prevent a break. The combination of dental work and Zometa is dangerous as it causes Osteonecrosis. If things speed up, radiation to the leg becomes another choice. Since having the root canal removed is critical in "My Healing Plan", there is no time like now.

I have also decided to begin taking Low Dose Naltrexone (LDN) as an adjuvant therapy. Naltrexone is a commercially available drug that is used to treat and reduce the effects of certain drug addiction. If taken at night and at a low dose, it tricks the brain and causes a flood of endorphins to be released into the blood stream. With virtually zero side effects, it has been used to successfully manage symptoms from multiple sclerosis and other auto immune disorders. Because it is an immune system stimulator, it has been linked to and there are studies occurring now in cases with cancer that are believed to respond to the immune system like Melanoma.

I've also come across some information about a vaccine that was, at one time, studied in the United States for early stage melanoma called Melacine. It is a disease specific vaccine that contains actual melanoma lysates obtained from human cancer cells. When combined with other proprietary components that make up their vaccine, it is believed to train the human immune system to recognize and fight melanoma. In combination with other immune boosting efforts, this might help provide a wallop might overcome my disease. The problem is that though it is commercially available in Canada as an approved treatment for Stage IV Melanoma, it was never submitted to the FDA. It is quite possible that I get the opportunity to entertain some hockey lessons in my search and travels to obtain this vaccine.

The final step in "My Healing Plan" is to receive the immunotherapy drug Ipilimumab. This drug has been all the rage and accounts of success are stacking. What I've read most recently is that long term durable remission has been linked with a particular side effect. The drug is supposed to activate the immune system and with any luck it will attack the melanocytes. Thats when depigmentation begins. Starting with the eye brows, Ipilimumab treated survivors lose the coloring of their hair.

This is "My Healing Plan". It can also be found as a list, that I plan to update as we move forward. My plan focuses on living and boosting my immune system. What it allows me to do is live a healthy life and entertain real treatment options that have become available since starting this journey nearly two years ago. I know that my change of treatment might offend some readers, but given where things are the change was inevitable. I am now more confident than ever that I will one day realize full health. I hope that you will continue to fight by my side.

Friday, September 3, 2010

Things to consider, lists to be made.

It was an easy decision to begin the Gerson Therapy nearly a year ago because at the time, there were no other options for treating melanoma. Sure there were early clinical trials and chemo drugs that could be used to break down tumors, but nothing that didn't offer more damage than hope. I am unable to totally write off the Gerson Therapy as having not worked because it is supposed to take a full two years. All things considered, the decision practically makes itself.

One option is to stay the course and continue on the Gerson Therapy for at least another year. I would have to, without a doubt, change things up and somehow more heavily focus on it as a therapy versus a way of life. I'd have to hire someone full time to simply take over and do everything for me. I'd have to even more so, alienate my friends, family and those that I work with. The issue here relates to the fact that I now have bone metastases. If the tumor grows and begins to fracture or break my leg bone, I'll have to resort to pain medications, which will drastically reduce or nullify the therapy. This will force me to look for alternatives, but because of damage my options will be even fewer.

There is now an option for those suffering from Stage IV Malignant Melanoma. An option that is neither chemotherapy, nor requires a long term hospital stay for treatment. Of course, I am talking about Ipilimumab and it does not come without it's own side effects and possible long term effects. There is seemingly sound logic and science behind it and it coincides with the same genre of healing the body versus traditional approaches that aim to kill the cancer and accept the collateral damage.

It has been been recommended by several people, and most recently my Gerson doctor agrees. Looking at all the facts, considering where we are after a year on the therapy. Knowing that tumor growth can sometimes be accepted, but spread means something totally different. I need to make a change.

Though it appears the evidence has become overwhelming, that doesn't allow me to suddenly change anything. As you might expect, there is a waiting list to receive this drug. Many of you have sent me recommendations for other treatments, doctors and other helpful resources. It is my intention to look through them over the next few days and begin to build a list. I'll be calling doctors and asking questions to see if there are other options that I should consider. I'll also see if I can get on a shorter waiting list to receive the treatment.

Besides the now obvious reminder that something is there, I am still very healthy and once again in good spirits. I will slowly ease off the Gerson Therapy and possibly even broaden my menu to something a little less restrictive, which is on my list of things to research. I will attempt to post more frequent updates as things occur, things could get quite interesting.

Thursday, September 2, 2010

Progression is clear. The future is not.

It's taken a few days and several rewrites to get my thoughts out for this blog posting. I'm not after perfection, instead it is all about using the right tone. After meeting with Dr Jang on Tuesday, it is clear that my disease has not only continued to grow, it has also continued to spread.

I still have several small tumors throughout. The target lesion on my liver has increased in size. The large tumor on my spleen has continued to grow. I once again have a growth on my left adrenal gland. I now have bone involvement in my right leg, which explains some recent dull irritation. Though not confirmed, I additionally have concerns about some pain that I feel in my right arm.

All things considered, and to the credit of the Gerson Therapy, I have now lived for 15 months with Stage IV Malignant Melanoma without, or with very mild symptoms. My doctor says that this is a result of my IL2 treatment. Regardless, seeing as how the average life expectancy is 6 to 9 months while mostly sick, I guess I really should not complain.

I have been looking closely at the new headlining drugs PLX4032 and Ipilimumab as possible avenues but they both come with their own criticisms. After speaking with a few people, I've also gained some interest in looking at possible vaccine options, though not any of the ones that are currently being offered in the US seem promising.

The third option would be to stay the course. Figure out some way to even more aggressively isolate myself from the world and rely solely on the words and wisdom of Dr Max Gerson. The fact that I still feel good, to me, gives credit to his madness. I just know that if I am to jump ship and try a radical treatment as only the western medical practice can offer, now is the time.

I am scared like hell to stop this therapy.
I am scared like hell to stay the course.
I am scared like hell to try anything else.
I am scared like hell to not try.