To Al, JoJo, Rosie, Patty H., and et al
Hi ! My daughter is writing this long e-mail for me since I can no longer be on the computer for long time due to vision problems. She is such a godsend! She has been reading and catching up on the e-mails several of you have posted during the past month on various interesting things. They have been such a help. I will try to keep this e-mail as organized as I can but I really could use some of your help at this time in my fight for survival. (Al, I really appreciated reading your post about how we have to fight or die) and I don’t feel like dying yet.
My brief history:
I was diagnosed stage IV on Oct, 2002, with mets to lung and bones. On Dec, 2003 I developed one brain met which was cleared with stereotatic radiation but returned in the same place in Dec, 2004. and that one I had Gamma Knife done. According to my onc., I have exhausted all chemos. They are:
1.Adriamycin/Taxotere
2. Taxotere/ Heceptin (Her Positive ER/PR negative)
3. Taxol/Carboplatin/ Herceptin
4. Navelbine/Herceptin
5. Gemzar/Zeloda
6. Gemzar/Herceptin
7. Zeloda/ Herceptin
8. Now on Abraxane/ Herceptin
Update:
My brain met that returned is on the occipital area in the brain near the occipital nerve. It has not been definitely determined as a cancerous tumor or radiation necrosis. They did Gamma Knife in Jan, 2005 and since then I have suffered edema and side effects of Decadron, which I have been on for 7 months. Now I am down to 2 mg of Decadron a day and have not gotten any better but not worse either. They recently did a MR spectroscopy and a PET scan. The results of these tests again were ambiguous. Neurosurgeon says the PET Scan showed the inside of tumor as necrosis (dead) but the outside rim of tumor took up much dye and glowed, suggesting maybe live tumor or white cells trying to heal the tumor since I have no other tumors in brain. So again we play the waiting game with a repeat MRI in 6 weeks. I am waiting to see what 2nd opinion doctor had to say, but he had already told me before PET scan that he thought it was also necrosis.
My other problem is the results of my CT scan on chest for lung mets done 2 weeks ago. They showed possible tumor progression even while on a new chemo (Abraxane/Herceptin), started in April, 2005. It also showed plural effusion which is covering my whole right lung making it impossible to clearly compare tumor measurements. The plural effusion could also mean infection, but my onc. seems to think its tumor progression. I will have the fluid drained out tom. To see if they can determine what it is. My onc. has already told me that if it is tumor progression, there are no new chemos to try. The only thing left is clinical trials. A lot of which I cannot qualify for because of brain mets (if I really do have it). I am really scared at this time because I don’t feel like I’m dying yet. My onc. is a person who follows protocols to a T and won’t change. I have a 2nd opinion appointment at UCLA with Dr.Pegram to see what he has to say. Presently, I am going to UCSD in San Diego.
Questions:
For anyone who can help me fight this cancer
1. Has anyone experienced what I am experiencing with the ambiguous brain tumor?
2. Has anyone experienced plural effusion? What caused it? Did it get resolved?
3. I have had my right lung radiated in April, 2005. Can the effects of radiation cause plural effusion?
4. Does anyone know of any clinical trails to try? I know about the Avastin/Herceptin one but don’t know where it’s at. I think some of you are on it.
5. Have any of you been allowed to repeat chemos that you failed in the past? My onc. says she will not do this.
6. Have any of you tried different combinations other than the ones I mentioned that I tried and failed?
7. Any supplements that you have tried?
I feel that my onc. has given up on me and I should just lay down and die, but I am still walking and most of the time and have good blood counts. I have never had a blood transfusion. My CA-27-25 tumor markers have never been above 60 and I am in generally good health other than the cancer (which is bad enough). I know there is something else out there for me. I truly understand your post Al about how unsympathetic oncologists can be. If any of you can be of help through knowledge, resources, or things you have tried, please reply to my post .I realize that I have not been offering my own help in these message boards and posting more often, but one thing for sure, I pray for anyone of you who asks for prayer. My daughter will be checking the board often for replies and reading them to me. I hope to respond more often on your needs too if I can. You can also e-mail me privately at
hetrahan@aol.com. May god bless you and I hope to hear from some of you. I will keep you updated.
Hope Trahan