Wednesday, May 19, 2021

Still around and doing well

 Hello friends.  And to those new to the MM journey who might be finding this blog for the first time.  It is, after all, almost two years (!!) since my last post and I don't presume that those who were hanging on every post during my treatment necessarily are still here.  But insofar as I still think my experience can be of use to the newly diagnosed, I wanted to check in and update things.

I remain in complete remission, having been off all meds now for...lessee....8 years?  9 years?  COVID meant that I had to cancel my visit back to UAMS last year for the annual bone marrow, PET etc. but I have had numerous blood draws back here in LA and they are all squeaky clean.

Retired doctor (BB):  "You're cured."

Doctor I see in Arkansas (FVR, fantastic):  "It is very unlikely that you will experience a recurrence."

Doctor I see every few months for blood work in LA (BV, fantastic):  "You are continuing to be in a curiously long remission."  

I'll take what BB says -- he's the "girl I brought to the dance," so to speak, and other than the fact that he is retired, I'd still be seeing him.

I have no regrets about my treatment decision.  I'm very fortunate.  I have some lasting effects from treatment (I miss the 15 pounds of lean muscle I used to have, my GI function isn't great, I don't sleep as well and this stupid squamous carcinoma that wrecked half of my index finger's nail bed is a reminder of what I went through).  But if you'd told me at diagnosis in October 2008 that I'd be around almost 13 years later and basically untroubled by Myeloma, I'd have considered it a huge victory.

When I was diagnosed and going through my options, I saw a well regarded (not one of the top 20 but solid) doctor in LA (not BV).  My wife and I were thinking of our then-five-year-old daughter.  The doctor went through his "you don't need aggressive treatments, we can control the disease" spiel.  When he was done, my wife said "will [Nick] be around to see our five year old daughter graduate from high school?"  The doctor said "that's a bit too aggressive."

Well, my daughter graduates in 9 days.  

We are human beings, not statistics.  That said, let me be an example of successful aggressive therapy.  As more and more therapies arise that are less invasive and work reasonably well, I think even fewer people are looking to Total Therapy with its double transplants and cocktail of multiple solid tumor chemo agents for their options.  When you're 75 and want 7-8 more years, those are good solutions.  When you're 40 at diagnosis, like I was, you want to try to get rid of the disease.  Or at least kick it in the teeth for a good long time.  13 years is a good start.

One last thought: RIP Charles Grodin, who passed away after battling Myeloma for quite some time.  He was 86, and I read that he was diagnosed in 2009 which means around 11 years of living with the disease. Midnight Run remains one of my favorite movies.  He was a marvelous actor.  I'm glad he made it to 86!

Be well, everybody!


  1. Good to hear from you and that you are well. Keep leading the way.

  2. Good to hear from you and that you are well. Keep leading the way.

  3. Hi Nick,
    So nice to see you back. As one of your past followers, I have checked back from time to time. Unfortunately my husband Mike lost his battle, but overall being older (70s) he did pretty well with moderate treatment. One could second guess all day on treatment protocol so I won't go there.
    I am so happy you are doing well and I choose to take your beloved BB's point of view that you ae cured! I'm sure you know your blog was so helpful and uplifting to so many. Thanks for checking in. Stay well and enjoy life!
    Mary Lou

  4. Hello! I followed you when my husband was diagnosed in early 2017. We followed BB's treatment plan, and he is in stringent complete remission since 7/2017. When BB retired, we continued on with Jagganath. Not thrilled with him, but my husband is, so we're continuing on this route for the time being. My question is this: have you been able to communicate at all with BB? Do you know if he will give curbside advice to his old patients?

  5. Nick, since I am in So Cal, I reached out to you in January 2011. I took your advice and went with Dr. T, who had been at the UAMS. First at Huntsman in Utah, then at UofI in Iowa City. When he retired I went to UAMS and that is where I am now. It has been 10 amazing years. I have never ever regretted my decision, and I have always thanked you and two other bloggers for such good advice. Never tell a 67 year old woman that she is too old for a transplant!!!!!

  6. Well, I'm a little behind here, just catching this update. Sounds like continued great news!

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