19th infusion

Limelife50 said:

Hi Fox

Glad to hear you are doing great ,i am hoping maybe your oncologist is maybe able to do some type of combo thearapy,it seems the MDX is working great but maybe using another drug that may target the bone mets .I have a quick question for you ,i am a year and a couple months out from surgery but i still at times get these muscle cramps and or spasms around the surgical area and no their is no pain involvement,was told in the past this is part of the healing process  but hmmm sure has been awhile.O ne more questons for all the other members,i notice when i get worn down later in the day my left eye gets uncomfortable and i get this halo effect at night from street lights automobile lights  and so on,thanks hope the beer tasted good Fox

Limelife, when you cut your hair or nails there is no issue because they are not innervated. However when you insult, damage, or excise tissue that is innervated, your body tries to pull away and withdraw. As when touching a hot stove with your hand. You yank back hard. Well with any invasive procedure, tissue is cut, reflexes are activated and the response is withdrawl. The result is spasm or cramps. Some cases result in extension or pushing away. Until the body identifies this "insult" as no longer a threat it will cause contraction which is cramp or spasm. The trick is to introduce motion, activity and use of the affected area at an easy intensity until  it gets used to it and becomes "normal". You can't do to much no matter what,( except drugs) as you are healing to reduce the spasms. However, at 1 year like you, you can learn to initiate your muscles with easy activity until you regain good reflexive control.Then things will normalize. Rehab is not "Let's work out hard and it will go away." It's learning to do a little at a time and not stimulating the "withdrawl reflex" Hope that is understandable.

I am also on zometa which is supposed to help the bones. I'm getting it a little less often than most but I'm ok with it. We'll watch for awhile. I'm not going anywhere.

For your last question, I'll bet you are still not back to what you consider your normal self. Fatigue, and physiology is not back to normal. Many things can happen. Refer back to first paragraph.

garym said:

19!!!

Foxy,

It seems like only yesterday when you joined the club and were only talking about the MDX trial.  MAN-O-MAN, LOOK AT YOU NOW!  New tires on the truck and back buying green bananas.  You are our posted child, our shining star, and you have helped and continue to help so many along the way, a true hero in my book.  Its wierd how something so bad can produce so much good.  I can't wait for your first NED.

ELY,

Gary

New tires and green bananas. Funny stuff. But howcome no one laughed at my joke about a half loaf of bread and a 3 pack of beer? I thought that was funny.

Gary, I don't really think that I will ever be NED. Just not likely. I think I will be doing this for a long time to come. I've learned from other occaisional posters that this is for the long haul. Besides, I don't want to leave this group and join the "Fat fighters forum" or "Dyslexic are us" boards.

Texas_wedge said:

Stoned

The moment I read the new topic title, 19th Nervous Breakdown came to mind and I intended to use that as my subject line.  Then I saw you got Stoned first!

Good thinking not to raise the topic of continuing in the trial - rather, let sleeping dogs lie.

On the bone mets, as against bisphosphonates, could you maybe get tried out on cabozantinib (brand name Cometriq) which is showing enormous promise? The latest report, a few days ago, from U. Mich. is

http://advancedprostatecancer.net/?p=3588

It's a different urological cancer but they're already speculating about its utility in other disease forms.

 

As Alice just said, "we look for you to lead the way" so just make sure it's in the right direction - it has been so far, so no wonder ELF.

 Posted after Tex but didn't appear in the order............ Yep, not ready to push additional treatment plans. It must have been hard for all pioneers or generals to "Stay the course" when things got tough and options presented. At least for awhile, I'm doing nothing new. If I was to be taken off the MDX study, I would want surgery to remove the offensive little buggers as first course of action. As I have said many times, I can heal from anything. Bring it on! Just not yet.

FLY and thanks for the ELF.

Texas_wedge said:

Great news indeed

Also so good to hear that you'll be back on the trial.  You'll need the healing time before resuming but you probably won't have lost much ground meantime.  Has someone managed to keep custom up at the Straycat, tacyartS?

Sorry about all the pain and surgery tacycarts. But happy you are well and ready to restart your trial. Great attitude! You deserve to do well. Keep it up.