Tuesday, July 17, 2012

A Long Post Just to Say I'm Stable

My apologies to all of you who have been waiting for an update.  I am especially grateful to those of you who sent me emails asking "what's up?"  I appreciate your concern.  The delay was due to my waiting to have something to report.  Just received the analysis of the myeloma numbers from last week and  they are stable.  No change from a month ago.  So, once again  Dr. Rifkin has found  a drug combination to keep the myeloma at bey, at least for awhile.  IGGs went down 100 point and are around 4400.  M  spike went up a touch and is 3.0, up from 2.8.  I still don't produce any platelets so I'm at the hosptal every 3 days to get refilled.  Red cells hold a little longer --7 to10 days.  It's still way too often for both. 

Two weeks ago Rifkin took me off revlimid to see if my white count would recover.  It has moved upward a whopping .2 points and is now at .8 (should be above 2).  But at least it's moving and in the right direction.  I sense he's a bit nervous with my current chemo regime because my disease is notorious for exploding if not held in check, but my white count has been stuck at .2 for 2 months and that puts me at great risk for getting an  infection.  My current chemo regime is a shot of velcade (subcutaneously) once a week and every other day 50 mg of prednisone, plus a whole host of antibiotics, anti fungus, etc etc. 

The best part of eliminating the revlimid is the return of some energy.  I actually can accomplish a few things like running errands, going to lunch, posting on my blog (ha).  I also feel more clear headed.  I am also getting reacquainted with my appetite.  What a pleasure that is.  Not only do I have an appetite but I can actually taste the food, which has resulted in me putting on 6 pounds.  Oh yeh.  I no longer weight 148 lbs.  I think it was the bundmustin and the heavy bactrim he had me on that did in  my appetite for 3 months.

The NYTimes had a series of articles about gene sequencing being the new individualized cancer treatment.  Scientists have been looking at this for a number of years and it looks like they are making some tremendous progress.  I won't bore all of you with the details of what this is, but if you are interested you should check out the Multiple Myeloma Research Foundation website www.themmrf.org.  They are helping to run a clinical trial for newly diagnosed myeloma patients to study gene sequencing.  Of course, Dr. Rifkin and I are plotting our own strategy to get my genes studied. (I am the furthest person from "newly diagnosed")

Whew.  So that's the update.  I continue to be amazed at the ups and downs of this disease.  For some periods I am hardly capable of getting out of bed because I'm so exhausted and my bones just ache and then after a change in chemo I catch a few months where I come out of the fog, find some energy, and get a taste of life.  Dr. Rifkin and I have become good friends and I feel like we both know we are in this together.  I never complain (which frustrates both him and his nurses) but he seems to know when it's time to change the regime just by looking at me.  He has told his  staff, whatever Dan wants, give it to him (regarding appointments for labs, transfusions, and even treatment).  He knows that I am fully aware of my treatment schedule and he trusts me to keep the nurses on track,, if necessary. As we shook hands after my exam yesterday I told him he was doing a great job keeping me alive.  He just responded:  well, I've got to figure out what we're going to do next.  I'm going to email  so and so, talk with_____, and I will be seeing_____ in 2 weeks so I can discuss your treatment with him.  As long he as never gives up, I won't either.

And as for Susan?  Let me put it in her words.  When Rifkin asked her how she was doing she summed in up this way:  "As Dan goes, so go I."  She is worrying much less and getting out with her friends more now that I'm not staying in bed all day.

Love to all,
Dan

8 comments:

Steven L. Ritter said...

Great news !! Stable is good.

Keep it up and keep us informed!

Steven

Stephen Greene said...

Dan, Things moving in the right direction is what we want.

You are a courageous man...

Stephen

BETTY JO Petersen said...

Love you Dan..big hug from me to you!

Love your mama too- we both get to see her soon !! yippee

Margot said...

You are amazing, Dan!!! And so is your family!

Sandy said...

Just cuz I don't hear from you doesn't mean that I stop intending you are getting good results and this was good news to hear... so post when you can and your cheering section is still out here for you!!

sigun said...

Good news indeed. Keep it up!Wish I were there to cook some more for you!
Bises from cold Paris, Sigun.

Priya Menon said...

Hello,
I am writing from CureTalk, a medical research and health care blog. CureTalk is the blog site of TrialX, an online platform that enables patients to find trials near them.
CureTalk is excited to launch a whole new series of monthly Cure Panels in which we plan to invite experts/patients/bloggers to discuss latest treatments being developed for a specific condition. We are kickstarting the venture with a Myeloma Cure Panel.
Dr. Ravi Vij, has agreed to be the expert on the panel and bloggers can dial in and listen. It would be great to have you on board. For more details of the myeloma panel click here, http://trialx.com/curetalk/2012/07/myeloma-cure-panel/.
If interested, please do let me know.
Thanks and Regards
Priya

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