Hi All, Alan isn't having chemo but is on f/n Avastin, Chloroquine, Tagamet, Metformin, DCA and Celebrex plus usual supplements and struggles to keep white cell count within normal parameters, usually it's just below baseline. I thought not having chemo for 6 months or so other than a small stint of 20mg TMZ daily for a few weeks which was 4 months ago would see his immune system back to robust self. We are doing a dc vax privately and have been trying to hedge our bets by not putting all our eggs in one basket, but don't want to do anything that will impede his immune system. Just a reminder Alan is IDH1 negative and unmethylated so trying to cover all bases.
Chloroquine can be an immune suppressant and taken with Tagamet would increase Chloroquine levels in blood.
I have been thinking of cutting Chloroquine by half but am really at a crossroads as I feel the chloroquine/avastin combo is what is keeping the tumour stable. Alan has been on Avastin for almost 12 months (2 weeks short of).
Does anyone else have trouble with their white cell count? I would like to know how other chloroquine users immune systems are holding up and would appreciate all thoughts and suggestions.
Thanks,
Linda
My white cell count has always been kind of low, since I´ve started TMZ cycles. But it is above the minimum required to start the cycle each time. I also take CHQ daily.
ReplyDeletenoticing the profile of no idh mutation and unmethylated... did you check for hypermutations from tmz? its possible that anti pd1 treatment would be helpful. opdivo by bristol myers. might get insurance to pay for it if you fight like we did. or company might agree to provide it.
ReplyDeleteMargo, Alan hasn't had another surgery since reoccurrence so don't know about hyper mutations. Our health insurance in aus doesn't cover drugs. I think nivolumab is really promising but costs around $100,000 here as not yet approved for GBM's
DeleteCan I ask where you did your DC vax privetly.?
DeleteI did some research on getting DCVax privately - it was possible to get it in Germany some time ago ( http://www.nwbio.com/dcvax-l-hospital-exemption-program-now-under-way-in-germany/ ), but not anymore. I contacted NWBio and few doctors in Germany but they all said it is not possible to get it at the moment.
DeleteIf you find anything please let us know :)
The vaccine Linda mentioned is not actually DCVax, which is a trademark of Northwest Biotherapeutics. See Linda's post on the cancer compass forum for details about the vaccine they had made in Australia.
Deletehttp://www.cancercompass.com/message-board/message/all,74411,230.htm
Note, that is where the 'our cocktail and story' discussion was taking place from Nov 2013 until we moved here this July.
Stephen can you enlighten about what anti pd1 treatment means? y son is IDH1 negative as well as unmethylated. His counts are below base line since being on AVastin and irinotecan but also not low enough to cause concern yet.
ReplyDeleteJoan,
DeletePD-1 is a cell surface receptor found on immune cells such as T-cells. When PD-1 is activated by the ligand PD-L1 (often found on tumor cells), it causes "anergy" or de-activation of the T-cells. PD-1 inhibitors like nivolumab or pembrolizumab prevent this immune-suppression, and therefore act as stimulants for anti-cancer immunity.
Studies in other cancer have shown that this type of therapy has a better chance of working in tumors with a high number of mutations (such as melanoma, or tumors with mismatch repair defects leading to numerous therapy-induced mutations).
In a small safety study reported at the 2015 ASCO conference, out of 10 recurrent GBM patients, 4 patients had stable disease with nivolumab alone, and one patient had a partial response. Still too early to draw many conclusions yet though.
http://www.bmsmedicalpublications.com/posters/poster3076.pdf
Hi Linda
ReplyDeleteJust read your post and realise you are based in Australia.
Would you mind to share where you bought the drugs you've mentioned? (Chloroquine, Tagamet, DCA and Celebrex) We are struggling to find doctors to prescribe here in Sydney and are trying to avoid buying via illegal routes.
Thank you!