Has Anyone Dealt With Chemo Brain?

My husband was diagnosed in June 2008 with a golf ball size GBM. He had surgery which removed 85 to 90% of the tumor. He then had 30 days of radiation, and has had chemo (avastin) every 2 weeks since. His MRIs are stable and his bloodwork is good, but we have now encountered "chemo brain". He can't remember anything short term. I'm grateful he's still with  me, but wish someone could give me more direction. The dr. says we could stop the chemo and maybe that would help, but the tumor might begin to grow again. How does a person know when they've had enough chemo and other treatments to keep the tumor "in check"? Any suggestions would be greatly appreciated! It's wonderful to read success stories from other GBM survivors . . . I hope that someday I can write about my husband's success!

Oh yes, all the time! There are times I will tell him I am going to take our son to Kindergarten, and he will call me on my cell phone 20 minutes later to ask me where I went. He misplaces things constantly.  He forgets that he has just had something to drink, and asks for it again. It's very frustrating for all involved. 

My husband is on Temodar. He just finished cycle 9 of 12.  I asked his NO if there was ANYTHING we could do, such as therapy of some kind, and her answer was "No.It won't help." She said it is a combination of surgery, radiation, chemo, and also my husband had a stroke during his resection.  

This is a personal choice about treatment; I would personally rather have my husband finish out his prescribed 12 cycles and live with the chemo fog... To be honest, I also don't hold a lot of hope that this will subside very much once the chemo ends. I have a feeling that it is more than just chemo that causes this.  My husband is doing pretty well overall cognitively.  It's just the little things. He still has his sense of humor intact. Maybe I will be pleasantly surprised when chemo ends, who knows?  

Good luck to both of you.   Remember, he IS a success story now! 

There are long term effects of radiation that may be involved here... which means they'll be around chemo or not. BUT I have heard that a few years later, please may we all make it that far, the memory and language issues can clear up a bit. Of course it depends which parts of the brain are affected.

At this point I'd rather have Andy with deficits than No Andy. But I can imagine for husbands and wives, it's very different than parent and child. You had a real partner in life and it might not be the same for a long time.

Sarah

I think that the temporal lobes are important for memory.  If that's where the cancer was, it could affect memory to have some of the temporal lobe removed.

Your situation is so similar to ours.

My husband was dx in 11/07. Same timeline as your husband with treatment. He has had no reaccruance,but is declining. Has had some small (focal)sz activity a few weeks back,but that has stopped.

I'm sure it is due to long term chemo.Your right, no one including his NO will suggest that it is long term chemo and what to do. Over the last six monthes he declines more with each round of Temador. The bi- weekly Avastin doesn't seem to have any side effects anymore.

To stop chemo......This will be a tough call in the months to come.

I'm looking for suggestions too.

Take Care, Laura

I think it is due to location of tumor as well rather than chemo.  I have heard of some people on the alzheimers meds (not sure what the names are) and they have helped.  You might want to ask the Dr. about it.

 

On 10/5/2009 Gbm Wife wrote:

I think it is due to location of tumor as well rather than chemo.  I have heard of some people on the alzheimers meds (not sure what the names are) and they have helped.  You might want to ask the Dr. about it.

Thanks so much for your response! I was wondering if maybe an alzheimer's medication would help, but sometimes I feel that I'm just grasping at straws. I will definitely ask the doctor about it when we see him tomorrow. Good luck to you and your family!  ~Debbie

Laura,

Thanks for replying! I just found this website yesterday and already it has been so inspirational to me! I'm so sorry that others are having to go through this terrible ordeal, but it also helps to know that there are people who understand exactly how I/we feel. I've never been much of a gambler, but sometimes I feel that my husband's outcome is a "roll of the dice" (plus a lot of prayers!). While dealing with this GBM has not been a pleasant journey or a road we would have chosen, we have met some absolutely wonderful people along the way! I wish you and all the families dealing with this the best of luck! I'm just trying to stay strong, cherish each day, pray for a cure and better days ahead for all of us. You'll be in my thoughts.  ~Debbie

You are welcome Debbie!

I'm just sorry your a new member of this club :(  You will find a lot of support and informattion here,but keep your distance, it can be depressing when there is a cycle of losses.

Over all, it sounds like your husband is doing well.

My husband is feeling very defeated as he finished another round of Temador Sunday and he isn't bouncing back. His cognative abilities are declining,memory issues are much worse,which causes him to be frustrated.On the other hand, he is still able to function fairly well in other ways.He is still working (I don't think he should be......long story)

This weeks concern, (there is one every week) he is a "hand shaker" he shakes hands as a form of greeting someone. This could be a nightmare during flu season. He will not consider NOT shaking hands,he would forget to use hand sanitizer or wipes, nor will he get a flu shot...he very rarely will even take a tylenol.

I think we just have to roll with it. Accept the changes as they come and try to keep them as healthy,in other ways,as much as they will allow.

He is scheduled for an mri on Oct 16th. I don't expect changes,but it would'nt surprise me.

Take Care, Laura