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Wednesday, May 4, 2016

Neverending Story -- new #cancerisabitch update

(Forgive any typos and the like if you spot them, and let me know so I can edit. I've already edited but I probably missed something.)

It's starting to feel a bit like piling on.

As previously mentioned here, my chemo oncologist stopped my Avastin treatments and referred me to a nephrologist to check on my kidneys because of protein in my urine. I also had a followup with my radiation oncologist the next day (April 26). I updated both on things like the leg swelling and weakness, general tiredness, the return of the focal seizures in my face, and some reoccurring problems grasping things with my left thumb and index finger and speech (stumbling on words, etc.), all which indicated that the glioblastoma was possibly reasserting itself. The two oncologists arranged to have me get an immediate outpatient MRI that very day. Sure enough, the tumor is starting to grow again.

I saw the radiation doc on the 27th. She said that having had two surgeries already, and especially with it not being extremely large yet, another surgery is not really an option now. She (consulting with the chemo doc) recommended another round of radiation, but only for two weeks (Mon. thru Fri.), and in a more limited area of the brain, followed by a different chemo treatment. To alleviate the issues I mentioned above, I was placed back on the steroid decadron. They (and, I assume, the lack of Avastin) have had positive effects. My legs, although there's still swelling, are stronger again, and my fingers and speech (and typing) are improving. And the extended-release version of Keppra the seizure specialist put me on (see last post) has completely stopped the facial twitching. For now, at least.

Today I saw the chemo doc, followed by, finally, because I had the wrong number for the office for a couple days (rolling eyes), the nephrologist.

Chemo doctor said that after I have the radiation (to be scheduled -- phone call tomorrow), I will start on irinotecan via IV. Because of side effects (possible nausea, diarrhea -- OH JOY! -- and lower white blood cell counts) he wants to lessen the amount of each dose and spread them out over a period of time a little. Maybe one dose one week and two doses a couple of weeks later, or something like that. To be determined.

He also said he tried following up with the doctor at Penn to find out if I quality for the immunotherapy vaccine clinical trial, and they haven't gotten back to him. He feels this is a sign that either I didn't qualify based on the genetic testing or they didn't have room, or something, because otherwise they would have likely contacted me quickly to get me into the program. (They also never got back to me after my recent followup. Another phone call tomorrow.)

As for the nephrologist, he really believes that the biggest factor in the protein in the urine is not from a kidney problem but basically some combination of the Avastin, my diet (way too much sodium) and the recent doubling in the dose of my blood pressure medication amlodipine. This is also an issue in my swollen legs. He thinks I have an extra 30 pounds of weight just from that. He has given me a prescription for another blood pressure med (one he takes himself, he said), and told my to cut my amlodipine back to where it was. He wants me to restrict my sodium intake, cut out red meats (NO MORE BURGERS??? NEVAH!!!! but I will cut back a lot), eat more chicken and fish, egg whites, etc.

One week after I'm on the new med he wants me to have blood work done (the fasting kind) and he also wants me to have an ultrasound on the kidneys. I follow up with him in August. If there are still problems at that point, he'll want to do a kidney biopsy, which would be a needle into my body to remove kidney tissue.

Okay, I think that covers the facts and figures, so to speak.

This feels like it's getting more and more complicated. So much to do, so much to keep track of, and I'm beginning to worry about whether I'll actually get to do some of the fun things I was hoping to do during the summer, like a few days at the shore, some Broadway shows in NYC, maybe a Phillies road trip. Sure, going to the downtown parks and festivals and the like are great, but I need more. What I really need are friends to do some of these things with. The people who I know would go places with me all live too far away. The people who live here are just acquaintances, or just Facebook "friends." And my family is great, but it's not the same dynamic. So if any of y'all can help me out here that'd be awesome.

Also, I swear I'm gonna get those Birthday Month Disco posts done.


1 comment:

GayHermit said...

Sorry to hear that the cancer is coming back. Very good to hear that your medical team is on top of things and that you seem to still retain your strong will and sense of humor. Try to take things one day at a time and know that I (we) wish you well and are sending positive thoughts/vibes/healing auras/etc. your way.
Been meaning to mention this to you. There is a blog you should check out that is "speaking" about the LGBT influence in music.
They are a good crew and should be good to online interact with. I am going to mention you Disco postings over there shortly.
Wishing you the best and glad to hear things are improving.