Sunday 18 March 2018
Cocktail mini breaks
Dear community, I'd like to ask a question on behalf of my husband. He has been on a quite extensive cocktail for about 9 months. The other day he brought up the topic of cocktail mini breaks because sometimes he feels overwhelmed with so many pills (at least 30 pills a day+ a liquid solution two times a day). Occasionally he has heavy heartburn (although he is on daily cimetidine, 800 mg + even 2x40 mg omeprazole on chemo days+the surrounding days), stomach issues and easily gets nauseated. Since the beginning of the year he even vomited 4 times. The root cause is generally some kind of a disgust from a taste or smell. Maybe it is the cumulative effect of chemo (he just passed his 9th cycle of TMZ) but we were wondering if a 1 day break once in a while (for example 1 day break after every chemo cycle) would decrease the effectiveness of the cocktail. Personally I don't think that this mini pause would make a difference (either in a good or bad way) but he feels that his body needs the occasional breaks to recover. His latest MRI (February 26) showed further shrinkage on both tumor sites and there's no considerable swelling. He also was weaned off of steroids gradually. Please share your experiences on this topic. Maybe this shouldn't be the biggest concern of a brain tumor patient but I if it meant an increase in his quality of life, then why not?
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Be aware that cimetidine disturbs the metabolism of a lot of other drugs.
ReplyDeleteThanks, I've read about that. I hope it changes the metabolism in a good way, so it makes those other drugs more effective. (especially metformin, chloroquine)
ReplyDeleteIn my opinion, a one or several day break would be fine, especially if needed to maintain acceptable quality of life.
ReplyDeleteOn the old GBM cocktails thread at cancer compass, one person reported on stopping cimetidine due to nauseau and stomach problems that improved after stopping.
https://cancercompass.com/message-board/message/all,74411,146.htm
Thank you for your feedback, Stephen!
DeleteDear Ildi,
ReplyDeleteSwallowing that many pills is not easy for someone who is ill. I applaud you and your husband for fighting as long you have. My deceased father also asked for mini breaks from his cocktail. He hated swallowing so many pills. He would swallow and almost immediately vomit them back up. We would examine the vomit for signs of what he should reswallow. We gave him two mini breaks. Both times he had seizures that left him weaker and more disabled. My father developed epiglottis malfunction, which made swallowing pills even more difficult. I'm not a doctor; so I don't know why this happened, but I suspect it was either the radiation or the seizures that caused the epiglottis malfunction. If your husband suffers from seizures, I would advise that he remain on sulfasalazine or very high doses of lamotrigine or whatever glutamate inhibitor of your choice, because anti-convulsants (with the exception of large doses of Lamictal, I suspect) don't do much of anything. And from all the other pills I would let him take a break. Quality of life is important too.
Meg
And one more thing... Attack the nausea as hard as you attack his cancer. My father's death certificate says the cause of death was cardiac arrest due to aspiration. I highly recommend aprepitant. It is the only thing that made Dad stop vomiting with few side effects.
ReplyDeleteDear Meg,
ReplyDeleteMy sincere condolences to you. It always warms my heart when family members who lost their loved ones to this beast stay involved and get back to those who are still battling this disease. Thank you for following many of us on our journey.
I really appreciate your recommendations. We are running low on ondansetron so I'll definitely ask the NO about aprepitant because it's also part of CUSP9 protocol so it may have other benefits besides its antiemetic properties.
Best wishes!