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Will 2Nd Surgery Help Or Hurt?

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Subject: Will 2nd Surgery help or hurt?
Date: 04/09/2008

My dad is battling GBM, stage 4. We are in the re-growth stages since Feb. Today's emergency MRI (because speech took a dive)...showed a significant enhancement since Feb. MRI. He did only one cycle of Temodar..which didn't help obviously. We were told they would like to do a 2nd surgery to de-bulk the tumor. At first, my thoughts are that's great news, but then the reality hits me with...is this just prolonging the inevitable w/this disease? The agony of the fact that it will grow back again and again until it kills you?

My dad had total ressection in July 2007. Had 30 rounds of radiation...opted out of chemo regimen. Hates taking his meds, when we learned of re-growth in February, he decided to try the chemo and tolerated it well...however he took himself off many of the anti-seizure meds and was weaning himself off the Decadron. This led to an ER visit today and a MRI which showed the enhancement. If he has the surgery he will still need to take all the other meds...my brother and I are trying to make him realize and understand that...YES, we want him to fight...but just the surgery is not all he has to do. The medications are part of the package deal to keep this monster at bay.

I guess what I'm asking is how many people have gone through a 2nd surgery and how helpful or how long to it prolong quality of life?

Thanks,

Jill

Subject: RE: Will 2nd Surgery help or hurt?
Date: 04/10/2008

 

On 4/9/2008 Jilby wrote:

My dad is battling GBM, stage 4. We are in the re-growth stages since Feb. Today's emergency MRI (because speech took a dive)...showed a significant enhancement since Feb. MRI. He did only one cycle of Temodar..which didn't help obviously. We were told they would like to do a 2nd surgery to de-bulk the tumor. At first, my thoughts are that's great news, but then the reality hits me with...is this just prolonging the inevitable w/this disease? The agony of the fact that it will grow back again and again until it kills you?

My dad had total ressection in July 2007. Had 30 rounds of radiation...opted out of chemo regimen. Hates taking his meds, when we learned of re-growth in February, he decided to try the chemo and tolerated it well...however he took himself off many of the anti-seizure meds and was weaning himself off the Decadron. This led to an ER visit today and a MRI which showed the enhancement. If he has the surgery he will still need to take all the other meds...my brother and I are trying to make him realize and understand that...YES, we want him to fight...but just the surgery is not all he has to do. The medications are part of the package deal to keep this monster at bay.

I guess what I'm asking is how many people have gone through a 2nd surgery and how helpful or how long to it prolong quality of life?

Thanks,

Jill


 

Jill, my heart goes out to you and your family.  We too, are in a similar situation with my father who is 70 and in excellent shape. Yet last September he was diagnosed with a GBM 4.  He has had a full ressection, a round of radiation and was finishing up a round of Temodar.  But, due to complete breakdown of Large Motor skills and increasing Dementia like symptoms, he was hospitalized for an emergency MRI this past Monday.  Yesterday we were told he had a BAD regrowth of this GBM at the original ressection site and he would not recommend a 2nd ressection for 3 reasons:

First, Dad could get a fatal infection and not leave the hospital.  Second, he may not get ANY extra time anyway and third, he could become a lot more impaired than he already is.  ( At the original ressection, my parents were told that the surgeon was not optimistic and was really reluctant to do the surgery in the first place.  He also told the family after the surgery that he could not get all the tumor.)  The oncologist told us that it definately would not stop the tumor and that Dad would pass anyway no matter what he did.

He did say there was the opportunity for a little radiation, but that he did not think it would work at all. It didn't before.  He also said that Temodar did not work either and it was the best there is for brain cancers of this type. 

I am so sorry for your situation.  My Dad hate the Decadron too and he does not want to take it.  The dementia adds to the problem because we are not sure how much he actually understands.  My prayer is for all families dealing with this hateful disease that we will be blessed with a cure someday.  May you have peace and strength and hope.  In God's Love, TARA CREAN  Daughter of a GBM patient.

Caregiver
Caregiver
Mikesister
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Subject: RE: Will 2nd Surgery help or hurt?
Date: 04/10/2008

It will help.  He has to take the decadron.  Everything the doctors are doing is to prolong his life. 

Remember, everything helps and do the research and ask questions. 

Subject: RE: Will 2nd Surgery help or hurt?
Date: 04/10/2008

Thanks for the replies. I know my Dad HAS to take the Decadron. We have stressed that to him SOOO many times. His tumor is in the left temporal lobe and sometimes I wonder just how much he really understands. When he gets difficult, I know it's the nasty tumor and not really him.

Tara--Wow, you are really in a bad situation w/your dad. My dad is 65 and was completely healthy until this happened as well. I suppose the fact they are offering a 2nd surgery must be good. I'm worried about the deficits..but with no surgery at all, the tumor will just grow and grow until it takes him. The doctors never really even asked if he didn't want surgery, so they must be confident that this is his best option.

Were just taking is one day at a time...

Jill

Patient
Patient
texasbelle5
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Subject: RE: Will 2nd Surgery help or hurt?
Date: 04/10/2008

I had 1st resection for GBM IV in June 07. 2nd resection 11-07. After 1st resect, I went on 6 weeks of temodar and radiation. I ahd to stop temodar in Sept because my counts went so low and I developed neutropenic fver. The tumor regrew and was resected again in NOv 07. No new regrowth since then. However my next MRI is tomorrow so who knows?

 

I cannot tell you or anyone how long to fight. Some days I just can't get it together to fight. SOme days I feel great, other days it's all I can do to get out of bed.

 

Good news: no seizures, no speech problems

 

Bad news: memory loss horrible, depression.

 

I take it one day at a time.

 

Prayers and good thoughts for you. 

Caregiver
Caregiver
Chiroman95
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Subject: RE: Will 2nd Surgery help or hurt?
Date: 04/11/2008

Jill,

Wow!!! You asked a question which I asked myself a thousand times when my father was still around and I knew that one day I will have to make that decision.

First surgery was good-A few days later no one would have said that he had a craniotomy-and I think this is the norm. The doctors will tell you that when GBM returns, it will be a worse and more aggressive tumor than the firat time around. Also, if the first line of defense did not work, temodar and radiation( which is their best shot at GBM) then what next???

We never got around to a second surgery-my da d passed away 4 months ago very fast, we didnt even know what hit us. I think that I lost mu real father after the surgery and radiation. As you all may agree, our loved one are just not the same people as they were before.

Another surgery? Not for us. I would have said no. Would a 2nd or 3rd surgery change the course of the disease? Will a second surgery cause deficits-I think that it will- I would have tried Avastin and the Cyber Knife, but not surgery.

I am sorry , but for the little time we have our loved ones around with GBM I want them as whole as possible and not not knowing who their child or granchild are. We have to accept the inevitable and be ready to let them go when it is time. Whatever decision you make, make it for the patient and not for yourself. Best luck to you.

 

Joe

Subject: RE: Will 2nd Surgery help or hurt?
Date: 04/13/2008

Well my Dad went thru with the surgery. The doctors didn't really give us a chance to discuss it. They just wanted to do it. They said it was the best option and it was safe. Wednesday is the day we went into the ER w/difficulty w/speech and understanding...and Friday he underwent brain surgery. Not much time to think about it. But, we did talk with my Dad about his options and let him know that he can't just do the surgery and then stop all the meds. He has to taking his pills and do the chemo this time. We'll see...I can see a big change in his mood. I keep telling myself it's the tumor talking, but it's so hard sometimes to sit and listen to him and be supportive. It's like he wants to fight, but then not?

The surgery went excellent and he is doing good. He's very out of it right now which is expected. The surgeon said his speech will get terrible and then slowly recover. But it could take weeks or months for it to come back. Everyone is different.

Time will tell and I don't exactly know what chemo regimen he'll be given this time. He only did the radiation after the 1st surgery. He didn't try the Temodar til last month when we learned the tumor was regrowing. The temodar didn't do anything to stop the beast...so I'm assuming they will try something else?

Thanks for all the messages, it really helps put all of this into perspective.

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