CancerCompass message board discussion started by smarie on 6/19/2008 http://www.cancercompass.com/message-board/message/all,25212,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi.  I would like to speak to anyone who has a family member or themselves who have glioblastoma multiforme (GBM).  My husband was diagnosed wtih this 9 months ago.  So far, he is doing pretty good.  He had surgery to remove the initial tumor in September, 2007, then on Temodar and he had radiation treatments.  In April, he was diagnosed with a new tumor (the old tumor bed is stable).  He had radiosurgery a few weeks ago and now we're waiting to see what the new MRI shows.  Hopefully, stable tumor or shrinking tumor. Is anyone else going through this?  I cry all the time, I'm so scared.  I think he supports me more than I support him.  He's the greatest husband anyone could ever want and I can't imagine my life without him.  I'm so sick of hearing "things happen for a reason".  That can't possibly be true!   Thanks, Sharon smarie Thu, 19 Jun 2008 00:00:00 GMT Hi Sharon,I know this is a hard time for you and your husband. My husband was dx 13 months ago May 24th 07 . He had a total resection at Duke and before that he did his radiation and temodar. We were a little turned around but our Dr's here didn't do surgery but when we saw the Duke Dr's in October of 07 they thought they could do surgery and did. Chris then had (after surgery) 2 rounds of temodar,then 2 rounds of ccnu, then 3 rounds of avastin cpt-11 now he will have 2 rounds of temodar then 2 of ccnu and that makes a year since surgery. We were told by our local Dr's 12-18 months is what he had and here we are 1 year later and I'm watching him weed the garden as I'm writing this to you. I was so worried about being alone and what will I do with out him and you know he is still here and doing fine and what a waist of time that was.I'm a worrier but I'm not going to worry about what if he dies any more,  I'm just going to think about what will we do tomorrow.There are a lot of good new drugs to help people live with this disease  so try to have positive thoughts I know its not always easy but try.Gods blessings to you and your husband,Dawn:)  missie91 Thu, 19 Jun 2008 00:00:00 GMT  Nice to have a positive message - I need this :-)Can you tell us what stage your husband had of GBM and how much they took out during resection?I am wondering if chemo and radiation are worth it for  Dad if he is going to feel like crap but your husband does not seem to feel too poorly?On 6/19/2008 missie91 wrote:Hi Sharon,I know this is a hard time for you and your husband. My husband was dx 13 months ago May 24th 07 . He had a total resection at Duke and before that he did his radiation and temodar. We were a little turned around but our Dr's here didn't do surgery but when we saw the Duke Dr's in October of 07 they thought they could do surgery and did. Chris then had (after surgery) 2 rounds of temodar,then 2 rounds of ccnu, then 3 rounds of avastin cpt-11 now he will have 2 rounds of temodar then 2 of ccnu and that makes a year since surgery. We were told by our local Dr's 12-18 months is what he had and here we are 1 year later and I'm watching him weed the garden as I'm writing this to you. I was so worried about being alone and what will I do with out him and you know he is still here and doing fine and what a waist of time that was.I'm a worrier but I'm not going to worry about what if he dies any more,  I'm just going to think about what will we do tomorrow.There are a lot of good new drugs to help people live with this disease  so try to have positive thoughts I know its not always easy but try.Gods blessings to you and your husband,Dawn:)   seoottawa Thu, 19 Jun 2008 00:00:00 GMT My husband had a complete (successful) resection the first time.  Then, 7 months later, he had a recurrence in a different spot.  He really has had no symptoms or ill effects.  He's just tired after chemo and some of the drugs change his personality (Decadron).  He has anothe MRI in early August to see if the Gamma Knife took care of the new tumor. :) smarie Thu, 19 Jun 2008 00:00:00 GMT If you don't mind me asking, how old is your husband, Chuck? smarie Thu, 19 Jun 2008 00:00:00 GMT Hi again,my husband has grade 4 and they said they got it all even the tumor bed.  Chris did very well with all his treatments yes he did get nauseous but zofran took care of that and yes he did have diarrhea and imodium took care of that. Its been a long year but all in all he has done very well.Dawn:) missie91 Thu, 19 Jun 2008 00:00:00 GMT My husband had a gbm iv in dec. of 2007.  He had a tumor removed on Jan. 2.   Following mris showed no solid tumor however they showed residual.  After two sessions of 5/23 temidor he was unable to get out of bed and it was because of swelling and was put on steriods.  His temidor was increased  from 340  to 440  and after the latest mri the dr. says here is a turmor and active cancer tho the area is slightly amaller.  His tumor was about the size of a quarter to start but I understand size really is not the biggest part of the problem.  My husband is 76 years old and I have not found anyone older with this and I know the older you are the worse it is.  Now he is having swelling in both ankles and feet and I am somewhat concerned.  We will talk to the Dr. tomorrow. woztoo Sun, 20 Jul 2008 00:00:00 GMT