Not So Good News-Aaiii

Hi to everyone again...We received the report back from Johns Hopkins on my husbands tumor and they upgraded it from a II to an AA III.  Duke is going with their pathology because it was Dr. Burger who did it.  They have called and said they want to see my husband this Tuesday instead of the following week so we can get started on treatment.  Our heads are reeling right now and I am having a hard time sorting through everything.  My husband is not wanting to talk about much..every time I bring up doing things to improve his immune system, exercise, etc. he gets upset and says that he is not going to be made to feel guilty about not doing these things.  We have a phone consult with Jeanne Wallace tomorrow and he has not even read the report yet..doesn't seem too interested.  It concerns me that he seems closed off and  not motivated at this point and we haven't even started anything.(other than surgery) How can I help him?  Is there anyone out there with this same tumor with some words of encouragement?  I need them!!  He is doing well after surgery, but is still weak (he doesn't think he is, but it is evident he is), I just want him to give it all he has.  Also, does anyone know the standard treatment for this type tumor?  So many questions..thanks for your help.

God bless,

Debralynn 

Debralynn,

I'm sorry about your husband. My dad is battling GBM, but I know the feelings of wanting him to fight and getting the feelings back that they don't want too. It's so hard to know what is going thru their minds at a time like this. I think anytime you are dealing with the brain can become very tricky. The brain is what makes our bodies function and sometimes I wonder if it's my Dad really talking, or the disease? Just keep on being as positive as you can with him and try to encourage, but not push the idea for him to do other things. It's so hard to know the right things to do. You are in my thoughts.

Hang in there.

Jill

My husband has GBM. We are only about 8 weeks into this. it took us a few weeks and a few arguments and tons of tears before we just got on with the matters at hand and into enjoying each and everyday.

Once my husband started treatment he felt better...he was doing something concrete to help himself..I do all the research and question asking at the docs. He lives for each day and leaves the things about the future and treatments up to me.

I think the treatment for your husbands tumor is the same as for GBM. 6 weeks of 5 days a week of radiation and temodar (chemo). My husband is tolerating the treatments very well..just a little tired. He is still working...and is in good spirits. Just google his type of tumor and you'll get lots of information. Arm yourself with it so you can ask the right questions when you talk to the docs.

If your husband doesn't want to talk about nutrition etc....just wait until he is ready..and go for a walk by yourself..I bet eventually he will want to come along.

I had to become my husbands advocate in all of this...so he could focus on things that are important to him.

Hope this helps.

regards, Eve 

On 4/9/2008 Debralynn wrote:

Hi to everyone again...We received the report back from Johns Hopkins on my husbands tumor and they upgraded it from a II to an AA III.  Duke is going with their pathology because it was Dr. Burger who did it.  They have called and said they want to see my husband this Tuesday instead of the following week so we can get started on treatment.  Our heads are reeling right now and I am having a hard time sorting through everything.  My husband is not wanting to talk about much..every time I bring up doing things to improve his immune system, exercise, etc. he gets upset and says that he is not going to be made to feel guilty about not doing these things.  We have a phone consult with Jeanne Wallace tomorrow and he has not even read the report yet..doesn't seem too interested.  It concerns me that he seems closed off and  not motivated at this point and we haven't even started anything.(other than surgery) How can I help him?  Is there anyone out there with this same tumor with some words of encouragement?  I need them!!  He is doing well after surgery, but is still weak (he doesn't think he is, but it is evident he is), I just want him to give it all he has.  Also, does anyone know the standard treatment for this type tumor?  So many questions..thanks for your help.

God bless,

Debralynn 

Dear Debralynn

There is encouragement!  My brother diagnosed 03/06 with AA111  with four and yes i typed 4 tumors and inoperable.  He was given 6 weeks of radiation and about a year long monthly treatment of Temodar.  The first and second mri showed no growth, the following mri showed 50% reduction and the last mri showed the largest tumor so small that is was almost gone. My brother was weak and had some brain cell damage to his leg and was unable to drive.  He also had to turn in his license.  But after the tumors were going away, he took driving lessons with hand controls, went to the registry to take a driving test with hand controls and passed and had them put in his truck.  So there is hope, hang in there.  Stay on top of the doctors. learn everything you can from this board and familiarize yourself about the different meds i.e. anti seizure, nauseau, swelling.  Try to stay upbeat and keep your husband busy.  He does need to eat well to keep up his strength.  My brother was most tired about the first week after chemo.  They cannot say when and if the tumors will come back.  So we wait and take each day.  We are from the Boston area and have great doctors.  But you hang in there, be strong and I will send lots of prayers.  Keep me posted. Marilyn56

Thank you all for your words of encouragement!!  We met with Jeanne Wallace yesterday and we were very impressed with her knowledge and results with brain tumor patients. Rick worked out in the yard all morning, lifting ,mowing, weed eating,etc. just a month post surgery.  He is getting his strength back and willing now to try the supplements.  Thank you all for responding and my prayer is that SOON a cure is found for these horrible tumors.  In the mean time, God bless you all.

Debralynn