Please Help... Worried

Hello all....

My husband was dx 12-06 and had all standard treatment. He had two new tumors show up in Feburary and by the time they did anything to stop them... It was September. We did gamma knife.

Well this morning my husband had a headache at 430 am so I called the doctor and he set us up for an emergency MRI... After leaving the hospital from which we got the MRI the doctor called us to go telling us we need to go to the emergency room immediately... It turns out his tumor is 30x30x30 mm. and he had major brain swelling.

Has this happened to anyone. We have only received temadar and whole brain radiation and then the gamma knife. He HAS NO DEFICITS whatsoever.

Any advice from ANYONE WOULD Be great! I mean considering this thing has doubled in size in about 2 months is this still reversable???? I know there has to be someone out there who is or has had a similar experience. Please help... I am freaking out.. At this point I feel hopeless and dont know what to do...

Thank you.

If he's made it three and a half years (which is great, but I know not enough! Of course you want more. It's just... wow...  I would be sooo happy if my son could live that long) that must mean his tumors have been responsive to chemo and radiation. There are new drugs available now... I'd see if he can get on Avastin immediately.

You'll know more within a day or two. Stay strong.

Sarah

mother of Andy 27 dx gbm/pnet 1/09

The new drug after all else fails is Avastin. It is a biologic drug, not a chemo drug. It prevents the growth of blood vessels that feed the tumor. Ask your doctor about that treatment. It was recently approved by the FDA for treatment of brain tumors so you might be covered by insurance. My husband is getting treatment now. It is done by infusion every two weeks. Without insurance it is very expensive. Hope this helps. Peggy B.

i'll mention that drug then .. was your husband on chemo before ??

Yes. He has been on Temodar twice before. It works but only for a while. If you google avastin, you will get  really up to date info on the drug. It does have potentially serious side effects and it works in less than 50% of people who get the treatment. My husband has had 3 infusions so far and I have seen  no improvement. but everybody's case is different so it is worth a try. Good luck, Peggy B.

My hubby did Avastin without any side effects.  It's pretty tolerable, but DEFINITELY worth the try.   Take care, janni

How many infusions of avastin did he have? Was it effective?If it was effective, how was that determined? MRI? Thanks, Peggy B.

Casey, hang in there. When you're young you can REALLY do well on the chemo and radiation. Be prepared to be tired but just take the time to heal and you'll feel better in a couple of months. Please write to me anytime. I will be sending love and cookie spirits!

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

here's my son's story:

www.caringbridge.org /visit/andymarshall

you might want to set up a caringbridge site to keep in touch with friends and family. It's easy and free.

Also please go to the website

www.yasg.com   it is the Young Adults Surviving Glioblastoma website. Click on BIOS and you'll read lots of stories of people who have survived! And then click on FORUM and you can chat with all of the people. They are sooo nice! But so are the people here. We really understand what you are going through.

With you all the way, honey. Keep thinking about your babies someday! : }

xoxoxo Sarah

That was meant to be a private message and I KNOW I hit the "private" box. Arf! Well, Casey, I also sent it to you as a PM so don't worry if the emails etc get erased by the system here... it's meant to protect us.

Onward!
Sarah

thank you .. internet seems a bit scary but i no. everyones different .. i don't listern to the internet ..  i'll keep u informed tomorrow they plan my radio been bit of a shock .. am strong brain sugery was nothing lol i didnt feel a thing hehe .. it was my 1st op and the 1st time i ever been to hospital the dr made me feel safe .. and my dr he's really postive all the time he not giving up cus am so young if i was 90 odd he would bother but they really like taken a shine .. it rare that i have it .. i got it in the back of my head and people most likely to get in the front and very old .. so he the dr sent everywhere i think i find out tomorrow why i have it . what may of cause been really good anyway thanks for info .. casey xoxoxoxox