First, I started to grow my hair back on December. Michelle thought it would be fun to see what it looked like when my hair had grown back. The problem was, when I decided it WAS time to get a haircut, the person that I get my hair cut from was out of town on her annual trip to Vietnam. So then I had to wait even longer for the 'trim of a life time'. But it did force me to continue to grow the hair much longer than I would normally have!
Anyway, I hope that you like it. Seems to be a bit thicker and more brown than last time, except for, of course, the patch at the top!
Now, back to the medical update.
As you may remember, I had an MDX010 treatment on 12/17/08, which would make 3/24/09 as my next MDX010 (every 14 weeks or so). While I had been waiting, I spoke to my first Dr. Mark Renneker name (see December post for info on Renneker). I had an appointment with my only local option, Dr. Robert Weber and Dr. Lynn Spitler of the Northern California Melanoma Center at St. Mary’s Medical Center, on January 7, 2009.
Weber and Spitler were helpful in their review. In either case, they suggested that I get off the MDX010, as, to them, it had clearly shown that it did not work as adverstised. If the brain MRI showed that the MDX010 had held up OK, then they recommended that I go on an immunotherepy maintenance program that involved IL@ (interluekin 2) and leukine (GM-SCF). If the brain MRI showed some met progression, I would go on to a taxane such as abraxane.
Interesting ideas, more to think about.
Unfortunately, I could not speak with the Block Medical Ctr (Chicago), the MD Anderson contacts, or the NCI contacts without a meeting with them in person. So I decided, at least for now, that I would not pursue. I would rather spend some time with Michelle and Lucy.
On 12/19/08, I had my first chiropractic appointment with Chiro Greg Orcutt. I signed on for 24 weeks (8 of 3x weeks, 8 of 2x weeks, 8 of 1x per week) and started the week afterward. It has gone well so far, even though I didn't need 8 at 3 times per week to get things going.
Michelle, Lucy, and I had a very nice and very local (as opposed to Thanksgving) happy holiday. We did go into San Francisco for the holiday itself, but for the most part we were home.
I met with Dr. Minor after the St. Mary's visit and after the brain MRI. He did not believe in the recommendations from St. Mary's, but was slighted interested in the taxane recommendation and promised to review. In the meantime, the good doctor recommended a brain PET, which I participated in on 1/20/09. The good news was that the brain PET also did not show any concerning growth, although it did show some growth in the upper left nasopharynx (behind the nose area). The doctor thought that it was more likely a cold or other non-cancerous blockage, so hopefully nothing to worry about (same as in the past, for anyone who remembers!). He has scheduled a 2/11/09 abdomen and chest CT scan to see how much the mets have grown in the body. From there, he will decide how to proceed (thermador, CCNU, taxanes, etc).
I also had Dr. Minor recommend a nutritionist, and he recommended the closely tied CPMC Community Health Resource Center (CHRC). I had my meeting on 1/29/09 with the nutritionist, received a meal plan setup, and sent out my follow up questions. I am just waiting for responses to my questions, which may take a day or two. Interestingly, this nutritionist focused primarly on hitting certain calorie levels, where others focused on eating more alkaline than acidic (chiro) or eating more whole foods/organic foods, etc. So, also lots to think about but no clear cut answers!
Finally, for those who have had the pleasure of talking with me over the past few weeks will have noticed an incrased slurring of words. No, I am not drunk at 9 in the morning! Instead, I am having a hard time saying the words. I remember the words quite well and quickly, but I have a hard time getting the words out. Hence the slurring!
And my double vision has gotten worse over the past several weeks as well, which has made this post a little more difficult than previous ones!
Finally, Dr. Minor finally decided to give me a steriod, dexamethasone, which may help reduce the my double vision and speaking problems. But only maybe. I have not wanted anything until this point, as I have not wanted to take anything that could mess with my treatment. The chances are low, as this is supposedly a low wattage steriod, so I figured now was the time. Hope it works! Unfortunately, the steriod has given me a lot of insomnia, so I have had to reduce from 4x day to 2x day. I meet Dr. Minor on Thursday, 2/5/09, to see if I will continue on with this treatment or not. I haven't slept much the past 2 dsys, so I am hoping for a GREAT night's sleep tonight!
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