Chemo Info

This morning I remembered that I had posted a question about Carbo and Taxol (the proposed chemotherapy drugs) on the Cancer Survivor's Network/Gynecological Cancers bulletin board. One woman replied that she had gotten brain damage from these drugs. Also some people wrote about intensely painful bones. And I looked up some stuff about SSDI. One thing was that people under 50 are rarely granted it. Overall, a depressing morning. I did call a disability lawyer & got an appointment. Too late for this round I guess, but if it gets denied, I may use her for an appeal. Susan Chen, the social worker at Geary Street, says most applications for SSDI are denied.

Lisa Kee, Padmatara, and Dawn came with me to meet Dr. Tavakoli today. It was great to have them there, and recording it was very helpful too. Here are some things we talked about:

First question was: Dr. Patel was emphatic about cancer in the bones being incurable. Why did it go away?

Gynecological cancers in the bone generally are not curable, unlike, for example, metastatic testicular cancer, which is very sensitive to chemo (90% survival rate.) Twenty-five percent of gynecological cancer patients (I think this means advanced stage) don't make it to five years, and that's often with continuous treatment. The cancer could still be in the bone, but it's not detectable now. With serial images every six months you would have more information.

Second question: Why is it important that I have 'vaginal cancer metastasized to the lungs' rather than 'lung cancer'?

Treatment is based on cancer of origin. Because of this, as before, there isn't great data about how well this chemo will work with vaginal adenocarcinoma. Have to just see how it goes. Carbo and Taxol are also used to treat lung and ovarian cancers.

Oncology waiting room

Chemotherapy will be every three weeks (last time was weekly.) After three cycles, at around 11 weeks, get a PET scan to see how it's going. If cancer is not responding, will need to change drugs. If after six cycles, or 18 weeks, the cancer is still there, might take a one month break and start on different drugs.

Side effects: First week is fatigue, might have nausea but shouldn't actually vomit. Can use percocet or marijuana. (Wow, someone finally mentioned marijuana!) About ten days out, immune system at its nadir, so important not to be around sick people. If you get a (neutropenic*) fever - 100.4 two hours apart, have to go to an emergency room.  Suggest doing infusion early in the week so that doctors will be around if something comes up. (Also, don't drink Kombocha tea, or live cultures. And don't take antioxidants during chemotherapy.) He said a road trip would be ok as long as you always know where the hospitals are, and you get out and walk every few hours to prevent blood clots. (Veins are a passive system apparently, they only work when your legs are moving...)

So, I've decided not to go to Montana. If something happened during my first round of the chemo, I would be far, far away from my doctors. I don't want to risk it. However, I will go to the retreat June 16-24. Chemo will follow, but I don't have the appointment yet.

As for thesecondopinion.org, I'm going to consult with the director, a medical oncologist. He will then decide if I would also benefit from waiting to see a full panel in July.

P.S. Turns out the cement graffiti outside our door featured on the left was written by none other than Lisa Kee!

*Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow that ingest bacteria. [http://medical-dictionary.thefreedictionary.com/]