Still sick here -- inconvenient but not the end of the world.
I received an wonderful email last night, passed on by my wife from my wonderful sister-in-law Gail. A friend of Gail's, with whom I spoke at some point during my treatment (I can't recall -- chemo brain?), evidently determined at some point to go to Arkansas for treatment. I thought I remembered from our conversation that this person wasn't necessarily going that route, but in any case, he evidently did.
Turns out this person was sharing a transplant room with another person, who was also familiar with my blog, and as a result of reading it had also determined to go to Arkansas. Let me say hello to them both now, if reading: GB and PD, I'm so glad to hear you took your treatment by the horns and are taking the fight to your MM. I wish you every success in your treatment and hope to meet you in LR (or elsewhere!) one of these days.
Without belaboring the point, I was sent a very touching note that credited me with saving PD's life. This is obviously not the case: BB is saving PD's life. But I'm extremely thankful for any minor role this blog may have played in helping PD make his treatment decision. Both PD and GB encouraged me to ensure this blog is published, and I am resolved to do so, and have taken steps but it's just so hard to find the time to finish the job! I will do so, though.
So PD and GB, keep up the fight, and thank you very much for your kind words!
As for me, I've still got the tail end of this chest cold but it's tolerable. My platelets fell to 65 last week, which was troubling. I took my last Revlimid last night, and we'll see what the platelets are today. It could have been an aberrant reading (but I doubt this as I've got several ugly bruises). In any case, we'll see what they are today. That was a fairly sudden drop -- they've held pretty closely between 100 and 120 this whole time and I'm not sure what the sudden fall would be due to. Whites remained at 2.8 -- despite the fact that I had a pretty bad cold when it was last checked -- and HGB around 12.7 still. Everything more or less where we want it to be, especially M protein under immunofixation which remains non-existent.
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Hi Nick, I wanted to let you know your story made in on Myeloma Mondays and there as been some great comments. Thanks for taking the time to share your journey...I don't know a single soul who wouldn't find it helpful!
ReplyDeletehttp://mmfordummies.blogspot.com/2010/04/myeloma-mondays-9-nick-our-friend-from.html
-Phil
Nick!
ReplyDeleteYour post at CancerKicker was excellent!
If you remember, I met you in a Stem Cell recovery room at UAMS and the relationship has been fruitful - for me, anyway!
Though you probably won't meet or hear from most of the folks that you're motivating, keep blogging, keep calling it as you see it, you're helping a lot of people.
BTW- I'm echoing some side effects of yours - low platelets, 2 month chest cold that I'm entirely tired of. All in all, I'm doing well. Thanks BB, BN and MIRT! And thank you, Nick.
Sean
PS- did you know that BB and BN are answering questions at the Myeloma Beacon Forum this week?
Hello Nick,
ReplyDeleteI may be the PD that you referred to above. My friend Sonny in Austin originally referred me to your blog in October 2009 after being diagnosed in San Francisco with 80% plasma MM cells. We're currently living in Mill Valley, CA after 10 years in Austin.
There are no words that can describe how valuable your detailed analysis, and agressive use of second opinions helped us make the decision to go to Little Rock in November. You literally saved us several months (that we may not have had).
I also have BB as my doctor in LR, maybe as a result of our common interest in motorcycles.
As I'm typing this, I'm currently at "day 11" of my 2nd transplant, and am in the TT4 Lite program. Things have gone almost flawless to this point (knock on wood!) with minimal side affects and total remission.
Thanks for your amazing efforts, and with best regards to you and your family.
PD
ps., our daughter is also in the film industry in LA, and was one of the winners in the Doritos contest a few years ago, with her commercial playing during the Super Bowl.
Nick,
ReplyDeleteHave you read the new article in the Beacon? Does BB test for this PCR?
In ASCT, the patients’ own stem cells that were collected before high-dose chemotherapy are transplanted back into the patients. Most myeloma patients retain a small number of cancerous cells in their blood and bone marrow after ASCT. These cells are a major cause of relapse. At the same time, they are difficult to detect by most techniques because of their small number. They can, however, be detected by a sensitive biological technique known as polymerase chain reaction (PCR).
Just interested in your thoughts on that test or any thoughts from that article.
thanks
J -
ReplyDeleteVERY interesting. BB does not test for this, as far as I know, but the reason for doing two ACST's in rapid succession followed by more chemo followed by three years of Velcade, Revlimid and Dex is PRECISELY because of what you've noted.
Obviously, he bets that in most cases, there's enough poison to wipe out all the cells.
I will read that article and look forward to doing so -- thanks for the headsup!
Best,
Nick
P.S. And PD, yes, it's you -- thank you so much for your kind words and I am so pleased that you're in Little Rock kicking this thing's butt. Please say hi to BB for me, and congrats to your daughter!!!