the decision to discontinue treatment

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the decision to discontinue treatment

by bilbosgirl on Thu Jan 17, 2013 04:31 PM

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My husband with glioblastoma has been in the hospital for 13 days ... he had a lot of vomiting and had a seizure the morning after his third day of temodar - this was his fourth  round.

We have already wasted 3 months with him feeling too nauseous and tired to leave the house or even out of bed sometimes, since his 3rd round end of October.

MRI shows no new growth in tumor but swelling on the other side of the brain. (Note: he is on avastin too)

Neurologist hasn't bothered to come see him despite repeated requests by various hospital staff.

They expect him to remain in hospital until next Tuesday.  Finally began to hold down a little food and liquid just the last couple days, they were ready to do a feeding tube.

When he had an 80% resection at diagnosis last June they told him he had 12-15 months and his tumor was growing fast. To him that means he may only have 6 months left.

He is seriously considering discontinuing chemo in an effort to have a real "life". He is getting a wheelchair and he says if he were well enough we could go places again and he could enjoy whatever time he has. He knows he could then have hospice and subsequently have whatever he needed to be comfortable.

I would appreciate your input. If no one wants to touch this subject with a ten foot pole I understand that too.

Thank you.

Lisa

RE: the decision to discontinue treatment

by tromda on Thu Jan 17, 2013 09:43 PM

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A tough road you are walking, girl.

Totally understand the desire to not fell so crappy all the time.   My husband decided to stop taking Temodar in February of 2012.  I did not agree with that decision, but it was his decision.  Other than one episode of seizures, he has done very very well and the tumor has not started growing.   We are actually planning a vacation in March.   It seems like a crap shoot whether or not the tumor starts growing back right away and there is no rhyme nor reason about who draws the lucky card.

I guess what I want to express is that perhaps it isn't an automatic assumption that the tumor will start back up - he could be one of the lucky ones.   Good luck to you.

Oh, and P.S.....I'd get a new Neurologist.

RE: the decision to discontinue treatment

by Brenda56 on Fri Jan 18, 2013 04:37 AM

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Lisa, My husband also had gbm. He did everything he could to recover from this cancer. He was so brave. After 7 mths, we opted to give him quality of life. He went off all meds But steroids, cause of the seizures. It was the best decision for him. He was sent home from Hospital with hospice care. He did so well he didn't think he needed them. His quality off drugs was so much better. Enjoy everyday. This is a hard cancer to beat. He made it 4 mths after hospice. They took wonderful care of him

RE: the decision to discontinue treatment

by SarahGrey on Fri Jan 18, 2013 04:18 PM

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On Jan 17, 2013 4:31 PM bilbosgirl wrote:

My husband with glioblastoma has been in the hospital for 13 days ... he had a lot of vomiting and had a seizure the morning after his third day of temodar - this was his fourth  round.

We have already wasted 3 months with him feeling too nauseous and tired to leave the house or even out of bed sometimes, since his 3rd round end of October.

MRI shows no new growth in tumor but swelling on the other side of the brain. (Note: he is on avastin too)

Neurologist hasn't bothered to come see him despite repeated requests by various hospital staff.

They expect him to remain in hospital until next Tuesday.  Finally began to hold down a little food and liquid just the last couple days, they were ready to do a feeding tube.

When he had an 80% resection at diagnosis last June they told him he had 12-15 months and his tumor was growing fast. To him that means he may only have 6 months left.

He is seriously considering discontinuing chemo in an effort to have a real "life". He is getting a wheelchair and he says if he were well enough we could go places again and he could enjoy whatever time he has. He knows he could then have hospice and subsequently have whatever he needed to be comfortable.

I would appreciate your input. If no one wants to touch this subject with a ten foot pole I understand that too.

Thank you.

Lisa

Hi Lisa,

I'm so sorry...  and I understand your husband's point of view...  quality does seem more important to quantity...  But of course who wouldn't want more time?  It's a rough decision.  Something to ask yourself, though, is even though you may aim for more time, you won't necessarily get it.  If you are sure to have more quality of life together, then...  maybe aim for that?..

Also, I just posted something about "when all else fails" - check it out, it might help... 

All the best,

Sarah

RE: the decision to discontinue treatment

by SarahGrey on Fri Jan 18, 2013 04:33 PM

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PS - my husband's Neuro-Onc stopped his Temodar after the 5th round since it was harming his blood counts/marrow too much.  I couldn't be happier since the chemo wasn't doing anything to shrink the tumors and was only making my husband ridiculously fatigued (sleeping up to 20 hours a day) - hopefully in the next month or so he'll start to feel better and have more energy so he can enjoy life more... 

Oh, and he is on Avastin too - and THAT is working for him (for now)...  From what I've read online, it kinda seems Temodar really doesn't work and it's just Avastin that does shrink these tumors.  So, don't be afraid of just being on Avastin - it works as a "stand alone" therapy.  ;)

RE: the decision to discontinue treatment

by Bee_Rich on Fri Jan 18, 2013 04:33 PM

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Lisa, do you have a neurologist that is a team leader?he or she should be very helpful in managing quality of life issues and can work with other team members to help manage nausea, swelling and other Q0L issues. – – Richard

RE: the decision to discontinue treatment

by amydibello on Fri Jan 18, 2013 08:57 PM

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Hi Lisa,

I am so sorry. This monster is wicked. I like how folks are replying to you. Staying hopeful. We are all with you in spirit. I want quality of life my Jeff. I pray for healing, in whatever form it comes.

will keep you and yours in our prayers.

peace and light

amy

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