Hi all,
Today's MRI finally showed the reason why I almost lost my ability to walk or use hands. Surprise! Regrowth is here at the original site (brain stem). The MRI done just three weeks ago showed almost no tumor left, but I kept declining. My symptoms are quite different from the ones I had in February, but now it does not matter.
I need your advice about what to do next. On Monday they are having a consilium but I think they will just put me on Avastin, which I hesitate to do at the moment. We also discussed Optune but my NO thinks that a) It might not help, giving the location of the tumor and b) Our insurance will not pay for it. I, too, am not really ready to shave my head just yet :)
We called to Duke and MD Anderson right away, but they all want me to come over to discuss options.
Are there any trials or other options you would recommend?
Thank you.
Today's MRI finally showed the reason why I almost lost my ability to walk or use hands. Surprise! Regrowth is here at the original site (brain stem). The MRI done just three weeks ago showed almost no tumor left, but I kept declining. My symptoms are quite different from the ones I had in February, but now it does not matter.
I need your advice about what to do next. On Monday they are having a consilium but I think they will just put me on Avastin, which I hesitate to do at the moment. We also discussed Optune but my NO thinks that a) It might not help, giving the location of the tumor and b) Our insurance will not pay for it. I, too, am not really ready to shave my head just yet :)
We called to Duke and MD Anderson right away, but they all want me to come over to discuss options.
Are there any trials or other options you would recommend?
Thank you.
Amber
ReplyDeleteSo sorry to hear this. If it turns out the regrowth is in an area where optue might be effective, don't discount the idea because of insurance. The people at Novocure have a history of picking up most of the cost for those without insurance. My son was originally set up to pay only 300 per month, then that was reduced to 200 per month with novocure writing off the remainder of the cost. Once his insurance agreed to pick up the cost, he of course paid nothing.
What are you currently taking/doing in the way of a cocktail or other treatments??
Sorry to hear Amber. It's hard to read the news. I'll have to confirm what Mike is saying though. I am talking to Novocure right now. They are very accommodating. Let us know how it goes.
ReplyDeleteSorry to hear that Amber. I don't know about trials much but maybe adding some stuff to your cocktail would do something maybe prozac, maybe more dca, maybe art compounds, maybe ppi's .
ReplyDeleteJust to let you know that my brother took on one cycle both sertraline and ppis and verapamil and keppra at the same time and had no side effect of it. The dosages were smaller though not sure how much since his wife is giving him drugs.
DeleteI'm so sorry to hear that, but no matter how bad the news, do not get beaten, you have to fight even harder. God give you strength healing!
ReplyDeleteMelinda.
I echo all these comments, and am sorry to hear this news Amber.
ReplyDeleteHow large is the area of re-growth? It might be worth asking if NeuroBlate (Laser Interstitial Thermal Therapy) would be applicable in your case. I'm not sure how much risk there would be as I'm relatively unfamiliar with brainstem tumors, but there is clinical trail testing LITT for pediatric CNS tumors, with the trial description saying this:
"LITT may offer a treatment option for patients with deep brain lesions that are surgically inaccessible, such as tumors located in the thalamus, hypothalamus, basal ganglia and brainstem"
http://mybrainsurgeryoptions.com/directory/locations/
There is a NeuroBlate center in San Diego and many other locations across the States, most notably Cleveland Clinic.
As for trials, the SL-701 vaccine trial for recurrent GBM is recruiting in Phoenix and Tucson. The tumor has to be HLA-A2 positive, and the tumor tissue would need to be tested for that. Also note that this single arm trial also give Poly-ICLC and Avastin along with the vaccine. The Avastin could affect your eligibility for future trials. I couldn't see anywhere in the trial description saying that brainstem tumors were excluded, but the tumor does have to be a confirmed grade IV (GBM).
https://www.clinicaltrials.gov/ct2/show/study/NCT02078648?show_locs=Y#locn
Are you still taking the cannabis oils? What dose are you up to now?
Optune might not be the best option for a brainstem tumor. There isn't much data on that.
Wishing you strength and courage,
Stephen
new trial Durvalumab checkpoint inhibitor now recruiting
ReplyDeleteHi Amber,
Really sad to hear this news.
This trial is currently recruiting in Aus and seven facilities around the US. Just scroll to the last page to see what US state is participating
https://www.clinicaltrials.gov/ct2/show/NCT02336165?term=MEDI4736&rank=20
It's a check point inhibitor and really worth looking into