Friday, September 21, 2012

PHEW!!!!!! Good news from Arkansas!

First of all, thank you all SO much for your prayers, emails, voicemails, texts, comments, intentions, positive vibes and well wishes.  They do make a difference, both in how challenging news is handled and, perhaps, in the outcome of events.   I deeply appreciate them!

So, let me share the good news.  My gene array came back about as good as it possibly could have, which means:

1.  Negative for myeloma (and this was in the heterogenous marrow of a former lesion, so if it was gonna show up anyplace, that is where it would show up)

2.  "No cytogenetic evidence of myelodysplasia" which means, most likely, that there were some funky looking white cells but they are made to look funky by the Revlimid, rather than my body manufacturing them.  We're off Revlimid so hopefully that will all resolve by next time but meanwhile, my marrow doesn't appear to be pre-leukemic.  Phew!!!

3.  The MYC gene which was over-expressed (the numbers being 18,390 and 13,928 in the two gene arrays I did before I started treatment, 17,000 after one day of Velcade and 19,602 after one week of treatment) came back at 3,200.  This puts it clearly in the second quartile (meaning somewhere between 50 and 75% of patients have more of this gene than me).  I need to speak with Bart to find out what this means, exactly, but it's no longer over-expressed.  So that MAY mean that I don't need to worry about spontaneous remission loss.

Triple phew!

One lingering question I have is whether or not my friend BB (the patient, not the doctor) who unfortunately lost remission due to this MYC gene had experienced a similar "normalization" through therapy -- in which case I'm not out of the woods -- or if his MYC gene had never been "normalized."  If the latter is the case, than it likely means that I won't face a high chance of remission loss -- and it means that BB (the patient) can look to his own MYC marker going forward in treatment as something that could indicate the efficacy of his therapy.   If the former is the case, then I still need to worry -- because he lost remission and if his MYC gene was normalized, then even though mine is not being over-expressed, I'm still at risk.

At least until those lesions resolve and the bone marrow becomes homogenous.  I had thought we only needed to look for the first but based on BB's (the doctor, now) concerns last week I might need to wait for the heterogenous marrow to give way to homogenous marrow.  Although I'd also been told in the past that this may never happen given the destruction of the marrow during transplants.  So I'm not sure.

Another conversation with BB (the doctor) is in order and I'm setting that up.

We still need to figure out what maintenance drugs to use since I'm now off Revlimid -- we want those stupid pits in my spine to heal up so we can breathe easier and get back to the "you're cured" track!   How I long for those words...

For the moment, though, the concerns of last week have abated.  Good lord, it's hard to explain how much stress that puts somebody through -- I'm not sure I fully realized it myself until the burden of that anxiety was lifted with this news.  I'm really emotionally spent.

Time to celebrate this evening with a great bottle of champagne!!!

Thank you all -- I will continue to update frequently as I learn more, including in numerous consults over the next couple of weeks.


  1. Glad to hear the good news ...Feel very happy for ya...and the homefront !!

    Greetings Pieter from Holland.

  2. So so so SO glad to hear this news!! We have been thinking of you!

  3. So glad to hear it! Was checking this page multiple times yesterday for an update...hope you enjoyed the champagne!

  4. We are so thrilled to hear the wonderful news. Matt shared your 'good news' email yesterday and we waited to read the details here. Totally relieved. I hope you were able to sleep well last night. I can't imagine much sleep occurred the past week or so.

  5. Hi Nick,
    I cried with relief when I read your post!! We celebrate your good news!! You have been through so much and your courage and positive attitude are an inspiration to everyone!! I am so so so glad that you are once again seeking the opinions of some of the finest docs around!!!!!
    Keep us posted my friend
    :-) Pam and family

  6. Sounds great....because they found no myeloma cells (as I understand), not sure what the myc result means. But if you have no myeloma cells, the issue may be moot. Congrats..

  7. Just great! Happy for you Nick

  8. Nick, Great news! Prayers are answered! We missed you at the Myeloma Cure Panel yesterday, so I have included this link so you could catch up on the Dr. Hari's discussion. One AHA moment was when he said in the next decade 40% of patients will have achieve cure which in his opinion is that they have had no disease progression for 10 to 15 years. But to do that these patients must be in treatment NOW! So now it is not just BB who is talking CURE.
    Best Regards/Gary Petersen