What do I expect with this?

artnut · Posted: Sun Aug 14, 2005 8:34 am Post subject: What do I expect with this?

My husband will be starting radiation and Temodar chemo treatment for his Glioblastoma Multiforme Grade IV and I need to know what to expect good or bad. His tumor is located in the thalmus of his brain and he has no short term memory. Other than that, no symptoms. They tried Methotrexate chemo but it made the enzyme levels in his liver go dangerously high and they said if they didn't stop that treatment, it would end up in liver damage. The doctors have given us some information, but I need to know as much info as I can get in order to prepare him and myself for whatever is to come. What can I expect (life expectancy, symptoms, etc) Is anyone else going through this too? I'm a mix of emotions right now!
Ann Confused

artnut · Posted: Mon Aug 15, 2005 9:22 pm Post subject: forgot to add

Me again. I forgot to ask.....many have said the symptoms will get worse with the radiation treatment. How much worse? Leo? Can you help? Question

wifeholdingon · Regular Joined: 08 Sep 2005 Posts: 10

My husband also had a BGM Grade IV - he had the surgery and they did a complete resection. He has had radiation therapy and finished it and is on Temodar. We went for his followup MRI and sadly they found a reoccurrance of the tumor. We are now left without many options. We too are from WV. They are sending him to Duke University in N.C. I know exactly how you feel and what you are going thru. If you need someone to talk to get in touch with me, I could use that also. I don't know if I can give you answers or not but I will try.

wifeholdingon · Regular Joined: 08 Sep 2005 Posts: 10

As for what you can expect my husband had no real problems with the radiation other than hair loss. The temodar he took at bedtime along with phenegran to prevent nausea. So far, no problems with that either. But it didn't seem to hold it off. It came back and now we go to Duke for other answers. The only thing they can offer here is IV Chemo and gave him a 5% chance of it helping him. His only real problems were swelling in his face and neck from the steroids they keep him on for swelling in the brain. Hope this helps.

artnut · Posted: Thu Sep 08, 2005 8:47 pm Post subject: Thanks for the info

What part of WV are you from? We're in Wetzel County. Thanks for the info about the radiation. My husband is now beginning his 4th week of radiation and Temodar and his face is swelling a lot. I'm so sorry to hear your husband has had a reoccurance of the tumor. Do stay in touch and let me know how he's doing?
Ann

wifeholdingon · Regular Joined: 08 Sep 2005 Posts: 10

We are from Kanawha County, WV near Charleston. Do they have him on steriods? That's what caused alot of the swelling for my husband. He still has it. We are being sent to Duke Brain Cancer Center in N.C. sometime next week. I'll be happy to keep in touch - you too let me know how you are doing. Good luck and prayers to you.

artnut · Posted: Sat Sep 10, 2005 10:21 pm Post subject: on steroids

Yes, he has to take 8MG of Decadron 3 times a day. They tried 4 times a day, but saw it wasn't helping so they dropped it back to 3 times. His face is very swollen from the steroids and he sleeps most of the day away right now. I wish they could have done surgery but the tumor is in a sensitive area and they couldn't remove any of it without causing major brain damage. All we can do now is keep treating and pray that the tumor will shrink. Be sure to post and let us know how you do at Duke.
Artnut

wifeholdingon · Regular Joined: 08 Sep 2005 Posts: 10

My husband is on Decadron too - He takes 4mg twice a day. He too is very swollen. He has a BGM Grade !V and it has reocurred. I have done alot of research and none of it is very promising I'm sorry to say. This is a horrible thing to go thru for all of us. If you would like to talk I can assure you I'm going thru the same things. We are still waiting on the word from Duke - don't know when we are going or for how long. We sent all the case material and are waiting for them to review it. I feel the most they can offer him is a chance to extend his time. But at this point, we will take it. The thing is, he feels fine. He is working and normal acting. But we know it's there and it's growing fast and we don't know what will happen or when. Very frightening. Feel free to contact me if you want to talk. Email: Itsgana@charter.net.

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