Friday, March 9, 2012

Gadzooks it's been a long time! Sorry folks! :)

Thought I better drop by and let you know I'm still alive and kicking!   The demands of my job have risen of late and have kept me very, very I do apologize but there are some interesting things to report.

I continue to tolerate my meds reasonably well...I continue to remain in complete remission...I will get another course of Zometa next week along with my Velcade and then it's off to Arkansas the second week in April to get poked, prodded, analyzed, scanned and written up.  We're looking for those little teensy pits in my spine to go away, at which point I believe I will be in MRI complete remission.

As I write this, I note my friend BB (not the doctor, but the patient) was very, very close to this...with only about three small lesions that were remaining and were resolving...when he lost remission.   He is now continuing the struggle, having ruled out Carfilzomib because of his liver's inability to tolerate it, and now trying Pomalidomide.  His spirits remain high and he inspires me...but his is also a cautionary tale indeed.  Not everybody maintains remission.  Even in the low-risk cohort, which he shared with me, people do lose remission during those critical three years.  Until I'm past that four year point, really, where the curve does appear to flatten, I will have a bit of a sword of Damocles over my head.

As far as other news to report, we have figured out what was wrong with my shoulder!  Regular readers (if any of you remain, given how long this update has taken) will recall that I felt a pain in my shoulder about six months ago, and was originally concerned it was tumors reactivating.  I got an MRI and ruled that out, tried some massages that didn't help, got a massage from a person that was a physical therapist who suggested it might be a rotator muscle.  Went to an orthopedist who gave me a shot of cortisone in the shoulder where this rotator muscle emerges from behind the shoulder blade.   Boy did THAT suck.   It did nothing whatsoever at the time (beyond the needle pain which was moderate, not horrible) but that night it was like I had awakened a sleeping devil and he was really irritated that I'd interrupted his sleep.

The orthopedist said I needed to go to a physical therapist, and I fortunately found one who really understands shoulders.  He immediately knew what muscles were the problem (the superspinatus and something else underneath the shoulder blade).  I've been a few times and it is helping, but the kicker conversation he mentioned this is common for someone on steroids.

Dex is the culprit, ladies and gentlemen.   It has destroyed the muscle tissue on BOTH sides of my shoulders, so I can expect to have to rehab the left one soon enough.  The pain on the right is bad enough where I still use Vicodin a few nights a week to ensure a good night's sleep -- and in fact the mildly constipating effect of the narcotics help counterract some of the other meds so I'm afraid I'm becoming accustomed to having one of these pills each night, between the gastroenteritis caused by the Velcade and the shoulder pain and the GI issues, they are kind of a godsend.   Plus they make a guy sleepy.

When this is all over, I will eventually cut out the Ativan and the Vicodin...I'm staying away from Ambien because they left me a zombie in the morning but 1mg a night of the Ativan is enough to make me drowsy.   It's working, I ain't gonna change it.   Hopefully I won't end up on a future poster for Reefer Madness: 2012.


  1. I just found out Iam developing cataracts from the dex that I was on 10/08 to 8/11. I wonder if the side effects ever end?
    I am in complete remission, however the effects of treatment continue to wreak havoc with my body.
    Hoping your health continues to improve and you stay on touch on your blog.

  2. Glad to hear you've gotten to the bottom of the shoulder ailment and are doing well. Just watch those meds Nick. Addictions to them can sneak up on ya. My sis worked in a re-hab years ago and getting off prescription meds is harder than getting off the street stuff. Stevie Nicks said getting off Klonapin was much tougher than kicking cocaine. Reefer may not be a bad idea, after all. ;o) Just kidding! Best wishes from Jersey!

  3. Nick,
    Interested in your four year time line. Since I did my auto transplant, it will be four years in a couple of months for me with no drugs since transplant and still in sCR. Does the same theory apply for non maintenance transplant patients?
    I don't think I could have tolerated four more years of steroids. Nine months was hard enough on me, my eyes and my sleep. Thankfully they all corrected when the steroids ended.
    Always love reading your posts and your journey with a different approach to treatment.

  4. JC -

    The four-year theory that I mention refers to my doctor's belief that if, after enduring his regimen, the cancer has not returned, that you are cured. Unfortunately this prognosis (which some find controversial to begin with) applies only to his regimen, which includes tandem transplants with specific multi-regimen chemo before and after transplants and three years of maintenance...that's the point of going through all that.

    However, you may have a very long remission...I know people 10 years out of a single transplant with no maintenance that are still in complete remission. I certainly wish you a very healthy and lengthy remission and hopefully a simple, non-invasive cure comes out in the meantime!

  5. Glad to hear you are in the Not Dead Yet club, Nick, and are looking at the goal of CR. Intending we are hearing that good news from you after your trip to ArK. It has been an amazing four years and I am still following you because I am still intending CR for the family member that got my attention about MM in the first place, also almost four years ago. Although we have lost some bright lights along the way, there are many still shining and for that I am truly grateful. Let's keep intending for the simple, non-invasive cure coming to all soon!

  6. Hi Everyone,
    Those of you in remission, can I ask what type of MM you've been diagnosed with, ie. IgG, IgA, IgM, etc. Thanks.