Hi all - my husband of 16 years was recently diagnosed with glioblastoma (which is farily large). The symptoms came on very quickly (Christmas 2018) so we are still in shock to say the least. The doctors are getting ready to start radiation & chemo (oral), which we approved because I need more time with him ... so long as he tolerates it, of course. The doctor has given us a decision to make and we cannot find enough information that we are 100% comfortable making. I am hoping you all can help.
My husband is 73 years old (I am 56). He has COPD, diabetes, and stage 4 kidney disease (which has been stable for quite awhile now). Until the brain tumor symptoms showed up you wouldn't have guessed he was sick (or 73).
The decision we need to make is this:
3 weeks or 6 weeks of radiation therapy (3 weeks would be at higher dosage)
My husband cannot dress himself or walk by himself and although he usually can tell me when he needs to go to the bathroom, he has to wear diapers ... so going anywhere is a bit of work. Not impossible and certainly wouldn't stop us from doing what we need to do. We live about 10 miles from the hospital. Not a bad drive so long as it's not commuter traffic time.
The doctor said that HE would chose 6 weeks unless we lived far away, but I cannot remember why (all these details!). I'm thinking because the possible side effects could be less (since the dose is lower). Surgery isn't an option.
We have researched this like crazy and found only one small study that SEEMS to say there is no difference (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5620204/). But we are not doctors and are terrified at making the wrong decision.
Of course we (my son, age 32, lives with us and helps us with everything) would prefer 3 weeks as getting my husband ready daily for 6 weeks sounds daunting. That said, if 6 weeks would be better we would certainly be willing and able to do 6 weeks. But should we? It's more stress on my husband, too. Even before he got sick he was a homebody and hated going to doctors, etc. But he is willing to do what we decide (so long as there is still QUALITY in his life).
What we want is more time with him. I can't breath when I think about losing him.
How does one make this sort of decision? Does anyone know enough about this stuff to give us some advice? Any help would be greatly appreciated. Thank you.
Hi Peshet, what a dilemma! If I was in your position I would feel like I would need more information- is there any way your husband can have one treatment at the higher dose (that would take 3 weeks) and then make the decision? That way he would be able to determine if the higher dose was tolerable, or if it would be better to have less radiation for longer.
Either way the outcome is going to be the same though, so there's really no wrong answer, it just comes down to what you and your husband think would suit you best. I wish you all the best. love Emily
Thank you for your support, Emily. We talked to another doc yesterday who said she has no problem at all for just doing the 3 week course. We have decided that is what we are going to do, since going to all these appointments is really very hard on all of us.
Sorry to read what you are going through. I am also a GBM sufferer and have beaten odds that specialist said I wouldn’t. I have posted some of my experiences on this site so please have a look at these and if you have any questions please ask.
I am writing this as I sit in hospital after having my 3rd craniotomy done to remove a tumour. I’m going well and will keep fighting this as long as I can.
One question I have is were they able to do a resection or is it inoperable?
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