I think I'm in trouble!

VDC · 07-12-2016, 09:40 PM

Signed my life away yesterday! 24 pages of informed consent, but I am now officially enrolled in this immunotherapy clinical trial! Now if my insurance and MD Anderson could just get on the same page, we would be set to go! I spent 4.5 hours on the phone between the two today trying to get them on the same page. Boy does this get complicated when MD Anderson is "out of network" for my insurance but will pay if part of a clinical trial.....but the paperwork is unimaginable! (not to mention time on the phone)

I'm curious, does anyone have experience with Leukine? This is the second drug given with the vaccine.....looks like it increases white blood cell count? Anyone have experience with it and know what to expect from this half of the cocktail? ;-)

Becky · 07-13-2016, 05:53 AM

As you can see from my signature, I used Leukine as my white blood cell booster instead of Neulasta during chemo. I chose and fought to do this as Leukine boosts all white cell components, most notably the dendrites. Neulasta boosts the neutrophils primarily which fight infection. I wanted dendrites as they are the scouts who find all abnormalities. Then they code it and prompt the killer T cell production. This assists in either self vaccination (my goal as I was not in a vaccine study) or assists immune response in a vaccine study.

The only thing with Leukine is the first shot, and only the first shot, can make you extremely weak. I was almost incapacitated. It never happened again and I had to have a shot a day for 10 days after every round of chemo. It was scary but again, only the first shot and it is rare side effect. You should be aware though. You may also get a couple of hives near the injection site after time goes on. This is supposedly a good thing. I was happy to get them as it shows an immune resonse which is what you are going for. If you have any other questions, let me know.

VDC · 07-13-2016, 08:29 AM

Thanks Becky! Yes, they warned me about the hives and perhaps feeling like I had the flu for 4-6 hours.

I find it particularly interesting that my white blood count is below normal......even without any treatment. This is my pretreatment levels. I wonder if my low white blood count could be a piece of why I have this cancer to begin with!

The Leukine is part of trial and given to everyone, both those in the active arm and those in the placebo arm. From my perspective even if I was in the placebo arm boosting my immune system can only be a good thing!

They are enrolling 48 patients, 32 of which will be in the active arm and 16 in the placebo arm. All will receive Leukine and the 32 will receive the vaccine as well.

I was told I am the FIRST to enroll! That would make me nervous except this vaccine has been used in women with later stage cancer and it has been highly effective for those that achieved NED. In fact, 94% remain cancer free after 10 years (I think it was 10 years but dont' hold me to that) Compared to the placebo arm where 78% remained cancer free after 5 years. (yes I think the years of study were different because they followed the active arm longer) But don't hold me to that either. I'm going off of memory here.

So, being the first to enroll doesn't worry me. It does make me wonder if it increases my odds of being in the active arm though? hmm..........only time will tell.

VDC · 07-26-2016, 12:10 AM

I've had some glitches with my insurance refusing to call MD Anderson 'in network' and of course MD Anderson wouldn't accept me even as a trial participant without "in network" status. This fighting sure does get old sometimes.

Anyway, it looks like most of the glitches are now solved and we can progress to scheduling these injections. Hopefully tomorrow the last paperwork will be agreed by the insurance and MD Anderson.

In the mean time I had an appointment with a naturopathic doctor who did her internship with the cancer center of America. Interesting discussion. And, while I can discredit her on her lipid knowledge, I'm still deciding if she knows something about naturopathic oncology. I'm on the fence and decided that I would adopt the things that I didn't think could hurt me, and reject those that are contrary to accepted medical practice.

SO, has anyone heard of rubbing caster oil and Vit A on the affected breast and then applying heat? Sounds a little wacky to me but I can't really see the harm in it? Thoughts?