Thursday, January 5, 2012

Eye on the Prize

Well folks I'm so far behind here and I'm very sorry about that!   I do have stuff to post as I said before, just been busy.   The highlights, if I had to put them in bullet points:

* Velcade gives me gastroenteritis weekly now.   Not pleasant.   Managing pain with Vicodin as needed.  Annoying, but I'll live with it.

* Very interesting debate on curability with BB representing the cure side and a very smart Mayo doctor representing the non-cure side.   Finally heard the non-cure argument: they don't believe the line in the Arkansas recurrence curve flattens.   Bart says they are looking at old data, and it does flatten.  Simple as that.

* Mindful that it's no guarantee, I should mention a good friend of mine, also BB (but not the BB who recently passed away) was in the same boat as me and has lost remission.  This is not very good news, as it means his disease is now resistant to Velcade and Revlimid.  But BB is sticking with BB who will have a plan.  Meanwhile, fingers are crossed!

* I've also noticed that the curve doesn't flatten after three years of's mostly flat there but the real plateau isn't reached until about four or maybe a bit more years of maintenance post-remission.   I had been thinking about how long I wanted to continue with the meds...I don't like the side effects but I also don't like the thought of a few cells not getting with the program (see my previous bullet point) and causing trouble after I let up.   So I'd been toying with the idea of asking to stay on maintenance at least one more year after my three-year anniversary comes up.

With this in mind, a reader with whom I have corresponded before emailed me today to say that he's been able to stop all therapy after 4.5 years of maintenance.  He was told, in that beautiful definitive way that only BB can deliver, that "your myeloma is gone and IT WILL NOT COME BACK."

BB is not cavalier.  He doesn't say that until he's sure.  That's the prize though...and my eyes remain on it.  So with every little bout of gastroenteritis or other GI issues or a botched fingernail that won't heal, I keep focus.

Happy New Year and good health to you all!   More to come soon.


  1. Hi Nick,
    I can so relate! I just left LR today. I remain in CR. It will be 8 years in July! They wanted to stop the Revlimid but we agreed that we will do that maybe when I return in July. Even though I experience the same gastrointestinal problems as you do I do not know if I can be off Revlimid. My security blanket! Is your friend that just relapsed from Oregon by chance? If so I was talking to him while waiting for BB today. Dr. B is going to be at a MM conference in Scottsdale in March with Dr. Kyle from Mayo. Should be interesting. Continued good are dosing great! Linda Bush

  2. Hang in there and make the best decision that you can for you. That is all we can do. You're a fighter and it shows.

  3. Nick,

    I was just thinking today, that if I was to come off Revlimid for maintenance, I would feel naked.

    Trust your judgement, but I think its not a good idea to let up on this disease. If anything these days, I second guess my doc's decision not to do Velcade maintenance. Still in CR with hi-risk, so each month a blessing.

    Glad you're well; best wishes for 2012.


  4. This blog is really a great source of information which is very useful for me. Thank you very much for such important information.


  5. Intending that you are continuing to be weller and that you are making good choices to stay that way!!! Best wishes for a happy and healthy New Year!

  6. Nick: As you know, you and I are roughly in the same treatment timeline and after having looked at the same data set to which you refer, I've discussed continuing Rev after my 3 year maintenance period ends in late 2012. BB once told me after my GEP and a few months of treatment, that if he didn't screw up, they would cure me. To which I hastily replied 'Well by all means, don't screw up!'
    I am grateful to be on his radar... Happy New Year!

  7. Nick, I can't stop reading. I started at the beginning about 8 hours ago and was with you through Jan 31, 2009 when you finished your first visit with BB. I am 69 years old and just had my bone marrow biopsy yesterday. Monday I will have an MRI and Friday 1/27 will see Dr. Reddy in Roseville, CA for my diagnosis. I too have been on the net since I received initial X-rays taken in December which the radiologist identified lytic areas on the femur of both legs which he said were indicative of MM or metastasis. Since then it has been bone scans, PET scans, CT scans, HD X-Rays, bone marrow, and Monday an MRI. I only have medicare for insurance so that will no doubt limit my options. I am grateful for the effort you have put into telling your story. I have learned a lot in the last 8 hours. I been reading a lot over the past 1 1/2 months but your blog has been most inspiring. I have 6 children and 11 grandchildren and I'm trying to find the best treatment I can afford. I need to get some sleep but I want to continue reading your story. I jumped ahead to your latest post to say thank you and I will be praying for your complete recovery. Ed Garbarino

  8. Same here, same here. Dave will have to make his decision. He has to own it. His side effects are minimal, so it will be interesting to have that discussion with UAMS and what he will decide.

  9. Dear Nick,
    I was just told Friday after 4pm that "you have MM, or MGUS- based on blood/urine tests"- hope to schedule appt with local oncologist and get BM biopsy soon- but Your blog is HUGE help, but also just HUGE- I don't know where to start!! Thanks for keeping up with this all this time- It is going to be a great help for me- as I'm sure it has been for many already.