Devastating MRI Today

My sister went for her first post op (July 28th) MRI.  The tumor has not only come back it`s the same size as before. We totally didn`t expect this kind of news.  Even knowing the odds of it growing back eventually...this is just too much!!

My sister is devastated just thinking about another major surgery just 2.5 months post op.  Without it her NO gives her about 6 weeks. This is really bad, is it not??  Is hers the worst case scenario or am I just freaking out??

We need some serious feedback here....any and all suggestions will be greatly appreciated.

Thank you so much, Marilyn`s sisters

DX July,28,2009

On 10/14/2009 passionfish wrote:

My sister went for her first post op (July 28th) MRI.  The tumor has not only come back it`s the same size as before. We totally didn`t expect this kind of news.  Even knowing the odds of it growing back eventually...this is just too much!!

My sister is devastated just thinking about another major surgery just 2.5 months post op.  Without it her NO gives her about 6 weeks. This is really bad, is it not??  Is hers the worst case scenario or am I just freaking out??

We need some serious feedback here....any and all suggestions will be greatly appreciated.

Thank you so much, Marilyn`s sisters

DX July,28,2009

Yes, you must be devastated, all of you. From hope to despair. What is the surgical plan? Will they remove more around the tumor, gliadel wafers or anything?

I have experienced similarly devastating news with our daughter's GBM.  It's so hard. 

Are you working with a major brain cancer center?  If so, have you discussed other options rather than surgery?

Was her last tumor tested for MGMT methylation?  Has she been able to start radiation and Temodar after her recent surgery?  If she goes in for another surgery it will delay this treatment.  If she didn't have surgery right away, they may be able to fight this with a combination of Avastin and Temodar. 

Don't be afraid to question everything!

Dear Passionfish,

Completely understandable to feel everything under the sun.  As another poster asked, are you involved with a major brain center?  We went to Duke where they are doing all sorts of cutting edge treatments, but Anderson, Cleveland, etc are all good.  I would not tend to listen to anyone limiting your sister's days until ALL treatments have been exhausted.  Sometimes things like that are said when that particular person is out of answers or over their heads.  Keep pursuing other treatments.

Take care,

janni (wife of Steve - GBM iv dx 11/07)

On 10/14/2009 passionfish wrote:

My sister went for her first post op (July 28th) MRI.  The tumor has not only come back it`s the same size as before. We totally didn`t expect this kind of news.  Even knowing the odds of it growing back eventually...this is just too much!!

My sister is devastated just thinking about another major surgery just 2.5 months post op.  Without it her NO gives her about 6 weeks. This is really bad, is it not??  Is hers the worst case scenario or am I just freaking out??

We need some serious feedback here....any and all suggestions will be greatly appreciated.

Thank you so much, Marilyn`s sisters

DX July,28,2009

PassionFish,

So sorry to hear that report. Are they certain it is the tumor and not necrosis? If she has had radiation, it could be necrosis.  As other posters have mentioned, if your sister is not working with a brain tumor center she should (or someone should for her) do some fast research.  As Janni said above there are some wonderful facilities out there. My husband is participating in a clinical trial at Duke (cmv vaccine).  MD Anderson and Cleveland Clinic are the other two centers that I hear about regularly. Ask around. 

Your family will be in my thoughts.

Holly

Husband dx with GBM IV 2/09

I know exactly how you feel, I'm sorry to say. A week and a half after Andy's craniotomy, we were told that the tumor had rushed back into the void and was growing really fast. We were told that this happens to just a few people a year... usually fairly young people with strong metabolisms and hormonal systems all still juicy and charged. The tumor is a runaway train. It's totally terrifying. The NS in California and the NO back here in Maine both thought he wouldn't last past that phase. But he went on to have radiation and chemo standard tx . For 9 months -- Feb-Oct -- it was behaving quite nicely in there... and now I wonder if that 'regrowth' was a misinterpretation of his post-op MRI. It might have been edema or bleeding in the brain. (Just this month we got news of 4 new tumors and are starting Carbo-Avastin IV, no more temodar. Fingers crossed.)

The scary thing is that any rad or chemo can cause some swelling, and there is nowhere for it to go if the poor cranium is already stuffed full of brain, tumor, and existing edema. This is where steroids are our FRIENDS. Yes, they saved Andy's life, twice. He was going into a coma both before the surgery and then again with that 10-days-after-surgery rush back to the ER with edema (regrowth?).  Both time, huge doses of Decadron (32 mg) saved him from uncal herniation and lights-out. We know that steroids are harmful, long term, but we can always taper off later. He was down to zero by May I think. Please USE the steroids now so that she can have the radiation and chemo and at least enjoy a much longer stretch than a few weeks.

With you in hope and strength,
Sarah

mother of Andy 27, dx gbm/pnet 1/09

HELLO

wife was dx with gbm iv on 1/1/07. after rad and temodar hooked up with Duke. As previously said you MUST get other opinions and suggesstions from the leading cancer centers who are running trials and doing research.

Jed

On 10/15/2009 heart and soul wrote:

I know exactly how you feel, I'm sorry to say. A week and a half after Andy's craniotomy, we were told that the tumor had rushed back into the void and was growing really fast. We were told that this happens to just a few people a year... usually fairly young people with strong metabolisms and hormonal systems all still juicy and charged. The tumor is a runaway train. It's totally terrifying. The NS in California and the NO back here in Maine both thought he wouldn't last past that phase. But he went on to have radiation and chemo standard tx . For 9 months -- Feb-Oct -- it was behaving quite nicely in there... and now I wonder if that 'regrowth' was a misinterpretation of his post-op MRI. It might have been edema or bleeding in the brain. (Just this month we got news of 4 new tumors and are starting Carbo-Avastin IV, no more temodar. Fingers crossed.)

The scary thing is that any rad or chemo can cause some swelling, and there is nowhere for it to go if the poor cranium is already stuffed full of brain, tumor, and existing edema. This is where steroids are our FRIENDS. Yes, they saved Andy's life, twice. He was going into a coma both before the surgery and then again with that 10-days-after-surgery rush back to the ER with edema (regrowth?).  Both time, huge doses of Decadron (32 mg) saved him from uncal herniation and lights-out. We know that steroids are harmful, long term, but we can always taper off later. He was down to zero by May I think. Please USE the steroids now so that she can have the radiation and chemo and at least enjoy a much longer stretch than a few weeks.

With you in hope and strength,
Sarah

mother of Andy 27, dx gbm/pnet 1/09

First of all, thank you for all of the support and suggestions!

I can`t really see my sister reaching out to any major cancer treatment centers. She is in Des Moines, Iowa and being treated at a local hospital and cancer center here.

We were told yesterday that further radiation was not an option. Her NO also said that temodar in certain genetic conditions could cause the tumor to grow faster. Nothing has been mentioned about "wafers" being placed inside. He was rather wishy washy and I came right out and asked if he was not recommending further surgery. He kind of jumped into fighting mode at that point and said that he was always ready to fight.

The discouraging part is that he seemed very certain that the tumor will be back in 6-8 weeks after surgery #2. He then said "that if indeed that`s what happens, he will do another surgery" How many of these major traumas to the brain can be tolerated. I felt that absolutely no hope was offered. At this point we are trying to pull our selves together, it`s very difficult without any real hope being offered other than repeated surgerys.

Thanks everybody, I`m sure that things will be a little brighter tomorrow!

There's no argument from most of us here on the fact that this is a devastating disease. It's arbitrary, painful, confusing, debilitating, swift, cruel, crazy, and shattering. I'm with you on this, and have no idea how to recover from even the first shockwave that ran through our family, much less the inevitable grief of losing our Andy. We just keep on keeping on, one day at a time. Sometimes one minute at a time. Keep up all the loving. I'll be thinking of you so please keep in touch... when you can.

Love, Sarah

Dear Passionfish,

Take a deep breath and try to slow down. You stated your sister is getting treatment in the Des Moines area. Is she going to the John Stoddard Cancer Center?  Most medical facilities have partnership with other leading medical facilities. Your sister's doctor can make calls to other cancer centers to see what other new treatments maybe an option. I know Cleveland Clinic has a second opinion option where it is done on line.

Cancer Centers of America has a location in Chicago. You could also contact them by phone to see where they have satelite treatment centers.

Never loose hope for other options for treatment. They are there, you must reach out to find them.

This webiste here has many areas to seek help as well as give you support and comfort!

You, your sister and family are in my prayers!

Sheryl

Son 34 dx AA Mar 08