Is it really time to stop treatments?

Yesterday my husband's NO said that nothing was having an effect on his tumor and it was time to stop treatment and look into hospice.  My husband was dx on 2.26.2009 surgery 2.28.09 followed by radiation and temodar for 6weeks.  At that time his left parietal lobe tumor was supposedly gone.  He started Advastin once a month 8 weeks after surgery and continued with the temodar on the 5/23 schdule for 2 cycles.  At that time his mri showed possible progression on Flair and T-2 images and his NO said she would change to temodar and carboplatin and advastin and repeat the mri in a month.  This brought about the same results, so she switched him to VP-16 and cytotoxen.  We had the results of that treatment yesterday. He is 54 years old and has no health issues except for the GBM.  It seems so sad to just say this is it.  She said this showed the 2 small spots on the right had grown substantially and nothing would work.  Has anyone else failed this many and then found something that does work?  She says he probably only has weeks left, yet he is walking, talking eating dressing showering.  How is this possible? 

 

On 10/21/2009 tisha55 wrote:

Yesterday my husband's NO said that nothing was having an effect on his tumor and it was time to stop treatment and look into hospice.  My husband was dx on 2.26.2009 surgery 2.28.09 followed by radiation and temodar for 6weeks.  At that time his left parietal lobe tumor was supposedly gone.  He started Advastin once a month 8 weeks after surgery and continued with the temodar on the 5/23 schdule for 2 cycles.  At that time his mri showed possible progression on Flair and T-2 images and his NO said she would change to temodar and carboplatin and advastin and repeat the mri in a month.  This brought about the same results, so she switched him to VP-16 and cytotoxen.  We had the results of that treatment yesterday. He is 54 years old and has no health issues except for the GBM.  It seems so sad to just say this is it.  She said this showed the 2 small spots on the right had grown substantially and nothing would work.  Has anyone else failed this many and then found something that does work?  She says he probably only has weeks left, yet he is walking, talking eating dressing showering.  How is this possible? 

Dear Tisha - I wish I could offer solutions and alternatives . . . sadly, I cannot.  I can offer my prayers and empathy.  My 58 yr old husband never had any health issues - until late January this year and early February - when we found out that his tonsil cancer metastasized to his liver.  The prognosis is dim.  I have found that prayer and mediation help me to find intervals of peace and I have been listening to cds by Pema Chodron - a Buddhist nun.  I do my best to take care of myself, so that I can also help my husband.  I have also found that in the midst of this nightmare, I have also witnessed numerous miracles and we have been the recipients of kindness beyond words.

For whatever it's worth, please know that you're not alone; remember to breathe and take one day, one minute, one moment at a time.

Georgette

My heart is with you. This is such a difficult decision to make. My husband was diagnosed January 5 and passed away on May 11 in Hospice.  He had been thru more surgeries and treatment in those few short months.  Unlike your husband, he was not able to walk, limited speech, and the eating was slowing down.  I needed to bath him, shave him, etc.. But, he was going thru rehab and occupational therapy and was progressing nicely, until he needed surgery for a perferation in his bowel that was masked by the high dosage of decadron,.  Due to the surgery and receiving a colostomy, his treatments stopped.  He went down hill so quickly after that, I am so sorry I did not ask more questions prior to his colostomy.  My husbands tumor was inoperable and he had emergency surgery on Feb 28 to debulk.He was in a coma. They tried to talk me out of this , saying the out come would not be good. I insisted on him having it, and he made a remarkable recovery. Really shocked those doctors.I am sorry if I am being blunt - but do not give up.  If your husband is doing so good right now- even if it gives him a few more months- insist on continuing with treatment.  You never know - a miracle can happen, the doctors are going by protocol and we cannot blame them for that- but if he can continue to take care of his needs - why stop now? He can be one of the miracles to this monster disease and if not, at least you did everything possible.  I don't think you came this far to give up!

 

 

Im very sorry you're hearing this news. I would ask if there's a possibility they can do radiation again and just focus on the right side.  My Sister had radiation 3 times and the last 2 times it was done twice a day at lower doses to minimize the side affects.  It helped with the physical side affects and anxiety.  I believe you fight this thing as long as you're able to maintain Quality of Life.  

I pray your Husband is comfortable and not in pain and I pray you have help from Family and Friends to help you deal with all the extra responsibilities that fall on you as a caregiver.  Peace
  

I would not give up till you and your husband are ready.  Don't have any regrets so if there is a second oppinion you want to try or a trial you want to look into then you should do it. If you are comfortable with your doctor and what your doctor is saying then go with it, if not then continue on to find what you are okay with.

Hang tough.

OMG.  I am sorry.  I too find it so hard to believe that he is still so functional.  No chance some spots are necrosis?  I second the idea that maybe radiation (stereotactic radiotherapy) on the newer spots would be affective for a time.  Did he have any success with the initial radiation, any shrinkage?  My husband responds well to the radiation, more so than the temador and avastin so far.  His new sites had not been radiated before and one that had did not have the boost.  So far Rob has had the initial 30 days with temador, 11 days of stereotactic on a new site and now another spot as popped up and he will have more stereotactic. I will say I am not thrilled with all the radiation but I am not ready to hear the words you just heard so we will try.  The sites that were radiated to date have responded.  I just won't be possible to have any more after this- it would be too much, I pray this is not.  Please ask about it, about anything.

My prayers and hope, Donna, Rob's wife

Is your husband being treated by a major brain tumor center? I would call around and get second opinions. Check out clinical trials. Do not give up hope!  We are all pulling for you! Many patient's with recurrences do well and survive for a very long time. Hang in there and keep the faith.

Holly

Husband dx with GBM IV 2/12/09

Tisha, count me in on the Keep On Keeping On team. I would explore other drugs, radiation, Novocure, vaccines, you name it. Unless I thought we'd given it all three chances, and then I'd go somewhere else. How can it be time to stop trying when he's still so very alive? I know some cancer patients say enough to chemo etc. and go totally macrobiotic or whatever. There's some dignity in that, too, and I respect the choice. But before I got to that point I would definitely like to know that western medicine had nothing left for me.

Sending lots of love and care your way.

xox Sarah

 

I'll add my 2 cents to the debate. I don't understand the decision to stop treatment either. Put a healthy, functioning man in hospice? Anything preventing more surgery or gamma knife or something?  Trials are often hard to access and qualify for--which is fine if you have time. You've got to talk with his NO and ask about other options--they haven't tried everything and haven't given it much time it seems.  Good luck, make some demands, ask lots of questions. Something doesn't smell right here.

 

On 10/22/2009 mbg53 wrote:

I'll add my 2 cents to the debate. I don't understand the decision to stop treatment either. Put a healthy, functioning man in hospice? Anything preventing more surgery or gamma knife or something?  Trials are often hard to access and qualify for--which is fine if you have time. You've got to talk with his NO and ask about other options--they haven't tried everything and haven't given it much time it seems.  Good luck, make some demands, ask lots of questions. Something doesn't smell right here.

I agee with mbg53 completely, an otherwise completely healthy man in hospice? Just does not sound right.  Second opinion sound like a good idea.

Good luck and God Bless

Conrad