Riding the Melanoma Roller Coaster   August 10th, 2011

It’s only Wednesday, but each day since the week started has been filled with dramatic ups and downs of a roller coaster, at least in terms of options and prospects for the on-going treatment of my melanoma.

When I started the week, based on a meeting with my oncologist last week, I was under the assumption that the 3cm melanoma tumor that recent CT scans found in my right groin region would be surgically removed, and possibly some questionable lymph nodes in my left groin region as well, to be determined by the PET scan I had last week.

My 'get out of jail' card should I have been detained for being radioactive after my PET scan last week

My 'get out of jail' card should I have been detained for being radioactive after my PET scan last week

However, yesterday morning I met with my oncological surgeon, and he advised against surgery because the results were not likely to make an impact against the spread of my cancer, but carried a high risk of tissue morbidity. Translated into English, that means that surgery would only increase the amount of lymphedema that I have in my right leg, and would likely give me lymphedema in my left leg, without any real benefit in terms of dealing with my cancer.

He did, however, confirm that the enlarged lymph nodes in my left groin were 80-90% likely to be melanoma after reviewing my PET scan (which also did not reveal any new areas of concern beyond those identified in the CT scan).

By the surgeon’s estimation, the spread of melanoma to my left groin qualified as metastasis, (albeit relatively minor in the grand scheme of things), as it meant the melanoma had spread to another part of my body from the original site in my right groin, probably via the blood stream (and maybe the lymphatic system). While cancer staging at this point is perhaps a bit subjective, I appear to have progressed to Stage IV melanoma (albeit Stage IV-A), meaning I now officially have metastatic melanoma.

The surgeon, after consultation with my oncologist, indicated my best option at this point would probably be systemic treatment, likely to be Interleukin 2 (“IL2”) and/or ipilimumab (also known as “ipi” or “Yervoy”), but that would ultimately need to be discussed with the oncologist in greater detail.

While the idea of not being able to rid my body of obvious signs of cancer was a disappointment, I must admit I felt extreme relief at the idea of not having to go through surgery again, and dealing with the painful aftermath of a catheter and the pain and annoyance of drains and bed rest and recuperation.

So, imagine my surprise this morning when I met with my oncologist and he proposed a course of treatment that might well include exactly the same surgery the surgeon advised against.

There was a big difference in intent however, namely that the removed tumors in the proposed surgery would be used to cultivate t-cells (immune system cells) which had been shown to be effective at fighting my melanoma to some small extent. These immune cells would be bred to create a much greater number of t-cells, and also boosted to make them more effective in order to create a highly tailor immunotherapy treatment specific to my exact melanoma mutation. This is considered a gene-based therapy, tailored to the individual the original cells came from.

This treatment, while still deemed experimental, has had a much higher success rate in dealing with metastatic melanoma than any other sort of systemic treatment, including IL2 and ipi – on the order of 42-60% prevention of near-term recurrence. The systemic treatments have success rates in only the single or low double digits individually, and slightly better if applied in series.

But there’s a catch.

The special treatment therapy, which is known as either Adoptive Immunotherapy or Adoptive Cell Transfer, is only performed by a small number of facilities in the U.S., and is not covered by insurance because of its experimental status, which means that the facilities themselves foot the bill, which in turn makes them highly selective. The most advanced facility for this special protocol is at the National Cancer Institute (NCI) in Bethesda, Maryland, under the guidance of Dr. Steven Rosenberg, and the program is highly selective, looking for a number of biological factors in candidate patients.

My oncologist believes I meet the desired profile (including being relatively young, in good health (not affected by the metastatic melanoma, that is), having metastatic melanoma, and having resectable (removable) melanoma tumors that are at least 4cm in the aggregate (combined)).

So, right now the hospital is contacting the NCI to submit me as a candidate for this protocol. I am told I may hear back as early as next week as to whether or not I pass the initial hurdle as a potential subject. If I pass that first level of screening, I understand I would need to fly down to Maryland to get a new set of scans as well as some tests, and if the clinical team finds my situation meets their admittance requirements, I would be scheduled for surgery at NCI.

Once my existing cancerous nodes were removed, the researchers at NCI would attempt to grow a batch of modified t-cells which would then be put into storage for use if (or more likely when) my aggressive melanoma showed up again on a future scan. In the meantime, I would continue on some sort of systemic drug treatment for my melanoma in the hopes that it would prevent recurrence. That drug treatment could still include the Sylatron I am currently on, or be IL2 or ipi (or some others as well).

If the NCI does accept me, one of the other benefits is that it will cover all the costs of my testing, surgery, and t-cell manufacture, and insurance would therefore not be involved (although it would be involved for my on-going systemic treatment at Mass General Hospital after the surgery).

If the NCI doesn’t accept me as a subject for their protocol, my oncologist and I will discuss more advanced systemic treatment, which may well start with a course of IL2. The 3cm+ tumor I have would be used as a reference to determine the effectiveness of such treatment. Clinical trials for drug combinations to combat melanoma would be a further option.

As far as my existing systemic treatment goes, I have been told to take my last induction-level dose of Sylatron tomorrow as scheduled. Considering how weary that high dosage has been making me, I will be glad to have it over.

For now, all I can do now is wait and see what the NCI says and not make any fixed plans or set any expectations more than a day or two out, since anytime I try, things change. While I may hear back next week about my initial acceptance or rejection, there’s no guarantee it will happen that quickly.

Personally, I hope the NCI accepts me. Even though further surgery intimidates me, the potential of the Adoptive Cell Transfer protocol to provide me with a future cure (at least as much of a cure as is possible with metastatic melanoma) is very appealing, for obvious reasons.

For the medical geeks among you, here are some links on the Adoptive Cell Transfer Therapy and the system drugs listed above:

 

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This entry was posted on Wednesday, August 10th, 2011 at 19:19 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

22 Responses

August 10th, 2011 at 19:35
Ann Phelan Says:

positive expectations..your attitude seems focused and positive..we are behind you..Fingers crossed for the NCI..back to good eating and wine..Mags returns to NEU Sept. 2 so can we all meet up in the fall when you are well and dine somewhere amazing for lunch or brunch?

August 10th, 2011 at 19:37
Jake Richter Says:

Sounds like a possibility Annie, but need to plan a day at a time… Drop me a note when you and Maggie are in Boston (or about to be)!

Jake

August 10th, 2011 at 19:49
LaDonna Says:

interesting news, Jake. Fingers crossed you are accepted at NCI.

Hugs

August 10th, 2011 at 19:50
Karen Says:

It sounds like you have a great team of doctors working on all avenues of possibilities for potential treatments that will benefit you. I can relate to your feelings regarding additional surgery and given the same set of circumstances I would opt in as well. You are in my thoughts and I hope that your path continues down the road you choose.

August 10th, 2011 at 19:52
Janis Says:

Ok, my fingers are crossed for you to be accepted. Stay positive. Laugh as much as you can. Eat good food. Ok?

August 10th, 2011 at 21:32
Cynde Says:

Jake, thanks for the update. You are a cancer warrior, and I believe and feel you will win this battle. Know that I think of you 24/7 in support of your battle. Off to read the medical geek stuff. Knowledge is key to wining the battle, and you are researching all you can to WIN…

Hugs and love,

Cynde

August 10th, 2011 at 22:09
Steve Says:

Jake,

What a f’ing emotional roller-coaster. Good luck on the NCI selection process. You really are an inspiration.

Thanks so much for taking the time and energy to this blog,

-Steve

August 10th, 2011 at 22:53
Barbara Leary Says:

Jake, I’m constantly impressed with the level of your research and detailed descriptions. And, of course, I’m hoping that you are accepted to NCI for the therapy, keeping my fingers crossed that the current and other therapies (if utilized) hold any more spread at bay.
XXOO, Barbara

August 11th, 2011 at 01:35
Sheila Roberts Says:

Jake, I don’t know a lot about cancer, but I’ve been in pre-nursing classes and I do know about T-cells, aka NKC (natural kiler cells) of viruses and cancer. They go after the big-boys and are first to attack. They are the only cells in the body that can directly attack and kill the bad ones. I’m praying that your therapy is sucessful as my husband has been battling cancer since 49 y/o. What wonders cancer research has achieved and I fully support it. Looking forward to meeting you in person one day and viewing your incredible art!

August 11th, 2011 at 04:38
Kitty Says:

Beautiful Jake,

I may not have posted/sent any messages for a while, but I am often quietly holding you, Linda, Bas & Krystyana in my thoughts and heart.
Sending you love, healing, kindness and compassion, sharing in your roller coaster ride of feelings and not-knowing from a (in some way non-existent) distance,

with a very big hug and a timid smile,
Kitty

August 11th, 2011 at 04:57
Dad Says:

Jake, when you battle the bad guys in your body, your cells will certainly do the same. Anyway, they are part of you, right!?

August 11th, 2011 at 06:18
Tracy Griffin Says:

Jake,
Best wishes for acceptance into the NCI program! I am sorry to hear of the progression of your cancer. I have heard very positive things about gene based therapy in the new. Let’s hope those scientists and doctors have found the path to a cure. You may not hear from us often enough, but please know we think of you daily!! You are never far from our thoughts – wishing you health and happiness.

Good luck – please keep us posted (I know you will!). We’re rooting for you!

Tracy (and Mike!)

August 11th, 2011 at 08:31
Tish Says:

So glad you’re in the hands of excellent physicians and that they are keeping right on top of your health moment to moment. Your ability to give us all the changing details on your blog is amazing and your attitude inspiring. Know that you are loved by so many many people! Hang in there!
Tish
xoxo

August 11th, 2011 at 09:37
Hannah Says:

Good thoughts coming from here!

hannah

August 11th, 2011 at 11:21
Mercy Says:

Forgive me if I’ve mentioned this before. My memory is not what it used to be! Not sure if you are willing to try, or even believe in the power of self visualization Jake. But it worked for me at a precarious time in my own life. I was diagnosed with a large coin lesion on my lung. Not having been a smoker (but I did grow up in a smoking household), they were hoping to rule out cancer. But being an archaeologist, I had worked on sites endemic with the fungus in the dirt known as Valley Fever, or Coccidioidomycosis. But my blood work proved negative. I was sent to a pulmonary specialist and was told they wanted to monitor me with a chest x ray every 3 months for 2 yrs. After a year, the Dr said he never saw a lesion get smaller. I told him I had been visualizing it getting smaller in my mind, every single day. He said keep doing it, it seems to be working! After that first year of x rays, I was told I didn’t have to have anymore. He said cancers don’t get smaller, but personally, I believe they can with visualization. At least it seems to be worth a try. We know how powerful the mind can be, especially since we use so little of it. The power of positive thinking is worth a try. And you seem to be so positive about it all anyway, so I hope you give the visualization thing a try. Lots of info on the Net about it too.

August 11th, 2011 at 12:44
Carole Says:

As others have already commented, you are, indeed, a Warrior. We are so grateful you have the medical team you have and that they have the foresight and courage (as do you) to look ahead for ways to remedy these conditions. With your courage, the will to live, the support from your family, friends and medical teams we know you will conquor this disease. I do hope you are accepted into the program in Maryland. Prayers for your recovery are ongoing….love & hugs for you, Jake, as well as Linda and the kids. cb

August 11th, 2011 at 14:21
Niki and Bob Says:

We’re hoping you are accepted in the protocol. They’d be lucky to have you! You would be the top warrior in the battle. How many people are so informed and motivated and all-around joyful and stimulating to be around? Oh, I don’t know, maybe a few others… Our thoughts are with you and Linda often. NH and BB

August 12th, 2011 at 08:50
Margreth Says:

Just keep thinking of all of you. Keep on fighting. Lots of love and big hugs, Jan & Margreth

August 13th, 2011 at 11:21
Jean Wood Says:

Our thoughts are with you. Your positive attitude is a good role model to anyone coping with health issues.

August 17th, 2011 at 00:08
Bo Says:

Hey buddy, you dont know me but my name is Bo and i just completed my first dose of Yervoy in Oklahoma City. The hospital where i receive treatment, i am the currently the first and only person to get this new drug. My second tx is next week. I would love to talk sometime if you start tx’s soon. littlebota@yahoo.com

August 17th, 2011 at 08:39
Jake Richter Says:

Hi Bo,

If I do go on Yervoy (ipi), it probably would not be for a while, as I would likely go on IL2 first. My oncologist says that the Stage IV treatments work best in a particular sequence (assuming you need more than one because of lack of results). His experience shows that it’s usually (not always) best to start with IL2, and if it’s not effective, then go to Yervoy. But, as he also points out, every oncologist has different views and opinions on treatment too.

Are you having any side effects from the first dose of Yervoy? Certainly it can be one of the easiest treatments to go through based on what I’ve read. Good luck and please keep us posted on your progress!

Jake

September 28th, 2011 at 13:07
Gordy Brown Says:

Hi Jake,
It’s been a while. Prayers your way for strength and results. After 35 years in the medical profession I can’t stress how profound an effect positive attitude and outlook have on the body. It seems you have both. I’m relieved that you have sought out the best our country has to offer regarding treatment. My personal paradigm for you is the you will be able to look back on this experience as another of life’s nuisance episodes, kinda like that kid with the weedeater powered skateboard that used to terrorize your neighborhood (remember him? Circa 2002) ;-)
PS-I was wondering if there was any speculation on cause, considering the typical train of thought on melanoma.
Take care, and know how many are pulling for you.
Gordy