From Linda…

Today was more of the same but a little less of this and that. They stopped two medications and gave Jake just one batch of platelets, so Jake’s day was more untethered than tethered.

The helpful hint of using a sticky tape roller-style lint remover to get the hair stubble that is still falling out worked wonders – Thanks Mare! And did I mention it is fun too in a silly kind of way. Almost as much fun and making a Mohawk – watch out Bas.

The doctors stopped by in their usual group to see how Jake was doing. They were happy to hear “nothing new, nothing exciting”. At this stage of the game, boring is good. We took Jake for a stroll in the hospital. We played Yahtzee and Crowns. We rubbed Jake’s back and snuggled close to encourage him to eat his chicken noodle soup.

The next change will be the reappearance of neutrophils in Jake’s blood sometime in the next several days as his immune system starts to come back on-line.

 

As you might recall from the prior blog entry, we have been in an anxious waiting period to see if the National Cancer Institute (NCI) at the National Institutes of Health (NIH) would even agree to see me for their Adoptive Cell Transfer (ACT) research program for metastatic melanoma.

I am pleased to report that NCI contacted me last night and today confirmed that I have an appointment to come in for a full battery of testing and screening in about 10 days. We’ll be in the Bethesda, Maryland area (just outside of Washington, D.C.) for several days, working in a bit of rest and relaxation before and after the testing, which I have been told is quite intense.

The testing will determine whether I am a good subject (biologically speaking) for their research protocol. I have been told by the staff at Mass General that I should hear back about my acceptance (or not) a week or so after the testing has been completed, so by the end of August or beginning of September.

If NCI were to go ahead with me as a subject, the soonest I could be scheduled for any invasive procedure (e.g. surgery or biopsy) would be four weeks after my last dose of Sylatron, because that’s how long they have determined it takes to completely leave my system. With that in mind, I did not take my final (eighth) induction-level Sylatron dose last night, meaning that I will be “clean”  on September 1st.

I don’t know that I will have anything more to report until after my screening, but I am relieved to at least have gotten my foot in the door at NCI for now, and will hope the screening shows I am ideal for their program.

In the meantime, I expect my energy levels to slowly start coming back, along with my appetite, as the Sylatron works its way out of my system. That should mean I can enjoy some nice meals with friends in the DC area when I am there. Woo hoo!

By the way, by odd coincidence, shortly after I finished my blog entry on Wednesday discussing ACT, I came across news that the same sort of process had been using to successfully tackle incurable leukemia, which is an indication of how powerful this process can be when it works. Details are here from CBS News.

 

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: