Nov 03, 2011 - 2:26 am
I have so many thoughts but I will keep myself focus. This hopefully won't degenerate in some emotional post. Anybody suggested some treatment to your neuro onc and the response is " That is a good though, we should look into this."?
Maybe I should be grateful that the neuro-onc is open to my ideas. But it infuriate me that, it is not my SPECIALTY, I should not be the one finding out about cutting edge treatment, the Neuro-Onc should know!
Ok, enough about "Should". My sister should never had Brain Cancer in the first place.
We need to be our own advocate. I hate the Odds. And I know that I should not pay attention to them. But truth be told, I have to look at them since I am reading so many clinical trials. (and when the authors report the survival times in terms of month, I divide by 12 on my calculator to see how many years). Once I put the computer down, I am like the ostrige. I burry my fears deep and smile. I make my sister laugh; she makes me laugh. We enjoy the day.
What I have suggested to the neuro-oncologist so far is (adjuvant medicine on top of surgery, radiation, and temodar):
1. Melatonin (Italian studies show prolonged survival); it is over the counter. My neuro-onc said OK it is safe.
2. Poly-ICLC. Again this is very safe. They conducted clinical trials on healthy subjects (probably college students in desperate need of cash- I am very grateful). It stimulate the immune system multifactorial. Don't take my word for it. Do your own search on the internet. There are many clinical trial that either use POLY-ICLC alone or with a vaccine. It won't be covered by your insurance (those b*stards) but your neuro-onc can order it "off labeled". I was told it would be around $300 every month. I will let you know.
3. Did you guys know that there is a peptide generic vaccine for glioma? Not the personalize one that needs to be organized before surgery (so the tumor cells from the surgery are presented to dendritic cells). A few scientists created a common glioma vaccines (actually there is a couple versions out there). I think the personalized vaccine is probably going to be better. But if you are like me, I did not even know about that option until the brain tumor resection was already made. (I actually did ask, but I was told that the technology was in infancy and not proven; but then again faced with such terrible odds, I will increase my chances anyway I can). So this GAA cocktail vaccine (the peptide glioma vaccine) has a couple versions: one is offered for grade 2. So yes, if you are or your love one has a grade 2 check it out (University of Pittsburgh). One is offered for grade 4 GBM. One (or maybe it is the same one) is offered for recurrent glioma 3. There is also one if you are a child with a grade 3, then you can qualify. (after passing through a rigorous check list). So where does this leave my beautiful sister? She has a recently diagnosed grade 3 and no clinical trial for a vaccine. Makes no sense. So this is what I did tonight: I emailed the investigators of the studies and asked for an exception "off labeled". We will see what happens.
4. I mentioned that we could use my sister's reservoir for an oncolytic virus trial. Phase 1 and 2 have proven safety. Again, we will see. Being part of one clinical trial would exclude you from another. (which is good for the investigator but not for the patient). I keep that idea in the back burner.
5. and then more chemo. I noticed a few of you have a different regimen then the usual temodar, or even temodar +avastin. I wonder how that came around. We know that if you are MGMT unfavorable, then temodar won't be as efficacious. I had insisted that my sister's tumor be analysed by Carris Life. They came back with a tumor molecular analysis and sensitivity to a few chemotherapeutic drugs. The plan is that after she tolerated the temodar for 3 cycles, we add fluorouracil. (also a oral agent). It is ironic (and scary!) that I came across Carris Life by coincidence; I was reading a brain cancer survivor's blog, and he had mentioned it and I though it would be a great idea for the future. Well it looks like we are using this info now. If anyone is curious how to get molecular analysis and cytology (which is different, I had Duke do it) my best advice is to ask for it. It can be done. Just be persistent.
6. One more though: anyone heard of nanotherapy, nanoparticles?
wow the post is a lot longer than I though it would be. I guess I just rather write about science then what I am feeling. I don't want to cry tonight.