A little background -- my wife (56) had a 95% resection on 3/29 of last year, did the chemo/radiation and the 6 month 5/23 TMZ regimen that was finished last month (had some delays with low platelets along the way). We just got our latest scan and things are basically clear -- and life is pretty normal. Yes -- we are well aware that we have been very fortunate! Upon asking the NO what's next the SOC continued i.e. we just wait, do nothing and do another scan in 2 months. The NO said she wanted to "give your wife's bone marrow a chance to re-charge" (meaning platelets). I mentioned metronomic TMZ and she shot that down saying there was not any evidence to support its use. ( I should note that my wife's tumor was methylated and showed a strong positive for EGFRvIII).
It's frustrating not to be able to take some proactive approach to keep this from coming back. I do have my wife taking curcumin and PSK/Turkey tail but she's not interested in doing anything more that than with regard to supplements.
Are we truly stuck and not able to do anything until the dreaded recurrence happens? As far as I can tell you can't even get involved with a trial unless you have a recurrence. Any thoughts/suggestions are appreciated. Thanks in advance.
Would she consider the ketogenic diet? We feel that it was a major part of why my wife didn't have an immediate reoccurrence in the year following surgery/radiation/chemo. It's difficult to maintain.
ReplyDeleteI continued my TMZ for another 6 months and now in the same situation, waiting every 2 months for MRI results. Two MRI's so far and no change. I have continued all my supplements, reduced carbohydrate/no sugar diet and CBD/THC oils.
ReplyDeleteGood Luck
Marc
Thank you Mark. Can you offer some info as to what/where/how etc you get your CBD/THC oils?
DeleteI get my cannabis oils from a local dispensary here in San Diego. I got my "card" from HelloMD and then used a local "expert" for assistance with dosing. He provided a plan to implement the Rick Simpson oils I use today. So I am using RS CBD oil and started with RS Level 4 THC oil. I am now on RS Level 6 THC oil.
DeleteMarc
HI Mark, I also live in SD, which dispensary do you use and who is your "expert"?
DeleteThanks,
You can email me at mhrossowyc @ gmail . com
DeleteWhat about Optune? It has no side effects and no other treatment has better progression-free survival stats. There is no reason to wait for a recurrence to start and I believe that you are much better off if you start Optune before recurrence.
ReplyDeleteThe biggest drawback to Optune is the device itself. A lot of people don't like to wear it :-(
DeleteWhen she started her chemotherapy, were you told it would be 6 months or 12 months of TMZ? A large well-designed retrospective study (published in abstract for SNO 2015), patients taking more than 6 cycles of TMZ did have better tumor control (longer progression-free survival) than patients stopping at 6 cycles, esp for the MGMT methylated group. "Immortal time bias" was controlled for in this study by only including patients who had no tumor progression after 6 cycles or for 28 days after the 6th cycle. So patients who couldn't finish 6 cycles because of tumor progression were excluded, and so the comparison was between patients who could have done more than 6 cycles but didn't, versus those who continued beyond 6 cycles.
ReplyDeleteTMZ is often delayed when platelets drop too low. Would her NO consider continuing TMZ cycles if platelets recover?
"Not any evidence" often simply means not any evidence from randomized phase 3 trials, because that is what is needed to change the standard of care. Every other kind of evidence is often disregarded. There is retrospective evidence (Cominelli 2015) for metronomic TMZ being beneficial for EGFR amplified tumors, but how big a role selection bias played in this study, I don't know. However, in that study EGFR expression was lower compared to baseline in the metronomic TMZ group, but EGFR levels were unchanged in the standard schedule group. Metronomic schedules can also be hard on blood counts, but tends to be hardest on lymphocytes.
Would she consider taking something like chloroquine? Sounds like she's hesitant about the cocktail approach (understandable).
Ithank you all. Is chloroquine a prescription drug? Are there nasty side effects?
ReplyDeleteMy wife has been taking Chloroquine Phosphate for a little over 2 years now. She has not experienced any side effects. The main concern is related to Chloroquine retinopathy. Based on what I've read, you need to be taking a very high dose for a very long time. My wife went to the eye doctor prior to starting it for a baseline evaluation, and now goes each year to make sure she isn't developing retinopathy. Based on the dosage (250 mg tablets), she should be fine taking this for up to 5 years. It's one small pill per day, so hopefully your wife would not mind the additional pill each day.
ReplyDeleteShe also has the EGFRvIII mutation, which is why we pushed for this prescription.
Thank you Kendall. What is the size of the daily dose? Also -- how hard did you have to push to get your NO to write the script? (any chance you're in Boston?)
ReplyDeleteThe dosage is 250mg Chloroquine Phosphate. We didn't have to push hard at all really. This was the first additional medication we added. We have an NO who is very receptive to additional agents, and we go to the University of Virginia for appointments.
ReplyDeleteHi SoDoWarts, just wanted to say that we are in the same boat as you now. My Dad finished his 6 rounds of chemo in Jan/Feb this year and nothing is being done other than MRI scans every 3 months. We are still taking all the supplements + prescription drugs we were doing while on chemo (athough slightly lower doses than Stephen recommended) and have added cimetidine. Dad just went back on keppra too as Monday, he had his first seizure since tumour resection in April last year (a CT scan didn't show anything had changed so hopefully just down to general damage). We were also wondering what is next and how long prescription drugs should be continued for.
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