Hi Everyone......i am somewhat new to this website and have read through a LOT of the other blogs....and i just have to say that my heart hurts for everyone else going through this lovely brain tumor stuff..
I am 29 years old and was diagnosed in august of 2008....i have had two surgeries, my lovely little eggs harvested and pretty strong chemotherapy (temodar, irenatecan and avastin). My last mri looked 'good' my surgeon said....however, i never asked her to define her 'good' statement. NOW i am just beginning my high dose chemo and stem cell reinfusion at the City of HOpe. Yesterday I started my first of five days on the temodar, mon and tues i go in for my thiotepa and friday i go in for my stem cell reinfusion....lame to ask and i feel even more lame asking online....but has anyone had this treatment??? i know that chemotherapy is different for every person out there.....but I am just looking for some pointers.
My wishes again, for everyone out there....keep up your hope and DO NOT BE AFRAID OF GETTING AS MANY OPINIONS AS YOU WANT. It doesn't matter what a doctor says...you find one that YOU agree with and is going to do what YOU want to do. xoxoxo[/b]
Tremodar was given to my father. As far as we saw it worked well. There was no real bad hair loss, no pain, he took it in an easy pill form. The only 2 problems that we saw were
A) is that it is a "radiation form". If anyone is planing pregnancy or young kids are around, the doctors cautioned our interactions with the medication. It had to be wrapped in foil to be handled by me, which worried dad because he had to stick it in his mouth....
B) There was a change in his body odor. Not usually 1# on the worries list, but kinda unsettling when your family notices. It's just the medicine-y smell.
Let me know if there is anything that you want to talk about or get off your chest...
Yeah I went through bone marrow transplant with stem cell rescue in April 05' at UCSF medical and would say it was the most intense and worst treatment I've ever experienced in my life. I pretty much spent 26 days of hell and I would never do it ever again. It was so bad, I was that close to losing my kidneys and getting dialysis where my mom was so scared but my doctor said to just hang on and I made it through. My mom and older sister took turns staying with me in the hospital off and on but mostly my mom took care of me. I had a lot of symptoms with nausea, diarrhea, urine, etc. I even had some memory loss for a day and didn't know who my dad or sister was from the pictures my mom showed me. I also know two other people who went through the same treatment and I keep in touch with. A young adult cop from NY had his at Sloan Kettering Memorial and it was pretty bad for him, I believe he spent about a month in the hospital and they said it was the worst case they ever had at their hospital. It may be a different experience for you, but I hope you will be strong and pull through it. I couldn't have made it without my mom and sister, and I hope you will have a lot of support.