Hi,
My dad is due to finish up his first round of TMZ and radiation on Wednesday. Over the last few weeks he has declined considerably. The nausea and vomiting kicked in and he is very weak. His balance and mobility are limited at best. He has been in a rehab facility for a few weeks because he fell at home and ended up there. We tried to get him back home last week, but he is unable to perform basic functions on his own and/or with help from my mom. There will be people (including the rest of us) stopping in to help him once he gets home, but it will not be consistent, so the two of them need to be able to manage.
At this point he is not taking much in terms of supplements because the nausea and lack of appetite prevent him from putting much in his mouth. He is also eating very little and nothing healthy.
Once the chemo and radiation end and the steroid stops (he is at 2mg as of tomorrow), I want to give him whatever I can to build up his strength and breathe some life into him. Any suggestions?
I know it will not happen over night and that there is no magic pill, but I want him to come home. He desperately needs to be at home, and he needs to build up his strength for that.
Thanks,
Stephanie
The nausea, vomiting, and motor difficulties suggest to me possible cerebral edema from the radiation. It's possible he needs more decadron right now. Decadron is a double-edged sword, which we try to keep to a minimum dose, but it's often essential for edema. A discussion with the NO and/or radiation oncologist is essential.
ReplyDeleteFor appetite, cannabis and Remeron have been mentioned. They're likely to help nausea, too.
If his decline were from tumor progession despite the TMZ+radiation, that would be a very poor prognostic sign.
Waiting about a month from the end of radiation for an MRI scan is standard, but a MRI or CT for evaluating these symptoms prior to that point seems reasonable to me. You might discuss this with the NO/RO as well.
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DeleteThanks Steven. When he fell they did a CT scan that showed next to no edema. The nausea and vomiting can be kept at bay with anti-nausea meds, but the rehab facility is not always able to get him to take them. Thanks for the help.
DeleteI can only relate our own story; my wife was essentially in the same position as your dad, perhaps even worse. We were desperate and Dr. Kast suggested we give her Remeron (first at 15mg, then 22.5mg, then 30mg, then 60mg).
ReplyDeleteWe saw an almost instantaneous change - perhaps within 24 hours. She awoke the next day, ravenous, and has been eating heartily since then.
We have had to taper off, and never reached 60mg, because the constant hunger it gave her made her uncomfortable, but we only stopped once she was out of danger.
It's dirt cheap if you can get a script for it.
Good to know. Thank you.
DeleteMy husband started off in the same way as your dad, although he did not reach the low point your dad is at now. A colleague at MD Anderson suggested he get acupuncture treatments and some herbal support to help him through this rough time. His NO readily agreed to the acupuncture but was not so sure at first about the herbals.
ReplyDeleteHusband started on the acupuncture first and after a couple of sessions, started to feel significantly better. The NO eventually ok'd the herbals (curcumin, artesmisinin, and Leukozepin) and those really made a huge difference. By the time he finished his 6th week of chemo and radiation, all of his blood results were within normal ranges although he was understandably tired and foggy-brained.
Three weeks after the end of the temozolomide+radiation, his scan showed a little true growth, but the tumor was beaten up, and "leaky", per his NO. Considering his MGMT promoter gene is unmethylated (i.e. resistant to chemo & radiation), this was a happy surprise and the NO was willing to let Husband continue on the same path, with more temozolomide and herbals.
I should mention that the Leukozepin is the support herbal. The other two actually are given to work in tandem with the temozolomide.
If you are in, or near, Houston, TX we heartily recommend a visit to our acupuncturist, Dr. Chaohui ("Wendy") Zhang on Bissonnet. If you are not, she might know of someone to recommend in your area.
As far as steroids go, our personal experience with them is mixed. Husband does NOT do well on them in terms of side effects but both the NO and the acupuncturist (who was also an MD in China) recommended at least a small amount. Husband is tolerating 1mg/day ok and is willing to go up to 2mg as it seems to help at this small dose without too many side effects.
Good luck and good on ya for reaching out for help for your dad. He is a fortunate man to have you on his team.
Thank you for the helpful information. We have considered acupuncture but have not pursued it yet. I did get the name of someone who may be able to help my dad in regard to acupuncture. We live in Massachusetts. He was taking a number of supplements and hope to get him back on those regularly once he is up to swallowing all of them again. He is foggy brained on top of it all, so he has it coming from all directions. I really hope that once this first round of treatment and steroids stop that we will see some improvement in the coming weeks.
DeleteThe brain fogginess is very hard for a caregiver to watch. You feel so helpless but you know that the war that is going on, the one that is causing the fog, is necessary if that tumor is going to be beaten down.
DeleteI can only tell you that our regimen of juicing (because their gut is not able to do its job with solids), acupuncture, and Leukozepin kept my husband going strong through his 6 weeks of TMZ + radiation while others in the same boat declined steadily. At the end of the 6th week, all of his blood results were in the normal range and his weight had leveled off. His appetite was hearty.
If you do manage to find an acupuncturist, please consider requesting the Leukozepin. The curcumin and artemisinin help the TMZ fight the tumor but the Leukozepin's function was to support the patient's body during the chemo+radiation. And at least in the case of my husband, it worked swimmingly.
*Leucozepin (misspelled it, sorry)
ReplyDelete