Information about Glioblastoma multiforme grade IV

Please don't give up hope. Perhaps the information on the following link will be helpful. I really hope you are encouraged by it.....http://www.cancercompass.com/message-board/message/all,23747

On 5/18/2008 Trees wrote:

Recent dx-had surgery May 1, 2008 and awaiting treatment--radiation and chemo.  Would like to know experences of families or people with this dx.  What can I expect for myself and will I need special caregivers--my kids all live in other states.  I would like to get rid of a lot of material things, some only sentmental but don't want anyone to think I am on my death bed, just would like to see some loved ones enjoying the things before I close my eyes for good.  Toward the end will I still be know what is going on around me and will I be in pain?  Hate pain!!!!  I am 63 and have a few other health problems.  I have lived a good life with God and just want to make my own plans.

I will keep all families in my prayers and hope you will do the same for me.

Hello there.

You haven't said whether you are still driving, so I assume you are.  You might need someone to drive you to and from treatments.  The bigger hospitals / brain tumor centers can arrange transportation for you if you need it.

Another big thing - at least for us - was appointments and meds.  My husband, diagnosed 4/07, would not have been able to keep his appointments straight nor would he ever have taken the proper pills, in the proper doseage at the proper time!!!   Maybe because he had me here to do all that for him.  Even when his pills were separated out into the little boxes (compartments) for different days of the week,different times of the day etc, he would sometimes take today's and tomorrow's too or not take them at all!

Those are the three biggest issues I see for you.  My husband is now 13 1/2 months past diagnosis and caring for himself all day every day while I work.   He also started driving again in January - after not having driven since diagnosis.    That is only because he had not had a seizure in many months and because Duke tested him cognitively and said he was ok to drive.

Good luck to you and welcome to our little on line support group.  You'll find caring, helpful, supportive people here.

Barb

Husband dx 4/07, with inoperable GBM IV, left temporal/left parietal lobe.  Radiation and Temodar did not work.  On Avastin / CPT-11 since July, 07 with one good MRI after the other.

My husband is 68 years old and was diagnosed 9-06 with inoperable GBM. After his  biopsy,  Dr Friedman ( at Duke) said there was nothing else that he could do for my husband that we needed to get in touch with the Brain Turmor Center there at Duke. We have been on quite a roller coaster ride. I am very happy to say that he is doing absolutely fantastic. I know that this is without a doubt not possible without faith in God and having a good attitude.  My husband is now cutting grass and being out in the yard. He has been hunting and a little fishing. He cannot drive but we do all we can do. We try to make every day count.  You hang in there. We are praying for you.

I say if there are people you want to give certain things to then go ahead and let them have them now. My mom gave me a ring that she bought herself after her divorce from my dad over 15 years ago. It's a ring that I know means a lot to her. I actually started wearing it the day she went to the hospital when they gave me the bag with her personal belongings in it. I wanted to wear the ring so it wouldn't get lost or thrown away and figured she would want it back when she woke up. Anyway, she woke up and saw it on my hand and that gave her so much pleasure she told me to keep it. It makes her smile everytime she sees me wearing it (which I don't do often enough and seeing your post makes me realize I need to treasure it more especially during this time with her). I've tried to give it back to her a few times but she tells me she likes how it looks on me now. It really takes on a different meaning having this representation of her while she is still around to see me enjoy it....I don't think it would have had the same meaning had she waited until the end.

-h-

Thanks for your reply.  I note the first note is from my husband, did not know he was seeking information as I have been.  We use the same e-mail and all and I ran across his post.  I feel better knowing he is just as interested in his dx as I have been.  He does not talk much about this--I think he just wanted me to find it anyway.  Had first chemo and radiation today 5-27-08.  Things went well.  Thanks for you prayers