Friday, April 15, 2011

Get Low

Tuesday evening, Barbie and I both tried to guess what my kappa light chains would be. Generally, when I am finishing my third week of Revlimid I get my blood drawn to check, among other things, the drop in my red and white blood cell levels as well as my light chains to see if the chemotherapy continues to work. However, this month I did not begin the cycle with an infusion of cyclophosphamide (Cytoxan) as I had done for over a year. In addition to completely decimating all energy and motivation for a week afterward, I also had developed an allergic reaction to it causing a desquamating erythematous rash on the left side of my face. (It's always my left). The current cycle was much better without this drug.
Barbie guessed 90, I figured it would be higher without the Cytoxan; I guessed 104. Considering that after the bone marrow transplant failed I ran over 360 mg/l, 104 is still quite good. When I go to the amyloidosis meetings and hear of those who are concerned that their number is high normal (27 mg/dl), I am always a little jealous. If I could only take the regular dose of Revlimid on the regular schedule I might get there, but, alas, my new heart does not agree with this drug.
Wednesday, while in a very busy clinic, between patients I pulled up my result. "Wuh hu!" I yelled. Dina and Mariann asked what happened. "My light chains are 64, the lowest they have ever been." I said as I walked out of my office. I called Barbie to let her know that we both guessed high.
The last month has been tough for both of us. Hygiene school is unrelenting on Barbie and she is frazzled. And even without Cytoxan, I still slow down when on the Revlimid and Decadron. This good news comes at a very good time as Barbie begins the last week of her first term and we prepare to go first to Samuel's graduation from BYU and then to the 'sunlight at the end of the tunnel', a week at the Newport Coast Marriott Villas with the whole family. I can just taste the salt water as I slide down the perfect wave on my 30 year old blue boogey board. This time I won't break a rib.



Emma and Dan said...

YAY! 64 is suddenly my new favorite number.
When my little boy sees the picture of the two of you in his room, he says, "Uncle Kenin, Kenin" while pointing at each Kevin in the pic. :)

Stacy Wallace-Albert said...

Kevin & Barbie: I am new to your blog. My husband Wayne started treatment and is now in week 24. We have a monthly doctor's appointment (Chicago Northwestern Medical)coming up and you have provided information that will inform the questions we ask. Thank you for sharing your time. - Stacy

Aunt Renie said...

WOOO HOOO, me too! I am overjoyed with your 64!! Will you still feed me, will you still need me, when I'm 64!! O yeah!!!
Bless Revlimid, it's wonders to perform....
I was horrified to read that you took Cytoxin every cycle. Your body has taken a beating & keeps on ticking! You are a testament to tenacity, love, luck and faith.

hardhats said...

It looks like there is a newer generation of drug from Celgene called POMALIMIDE. It is also combined with Decadron at lower dosage. It looks most of the patients take 2 mg to 4 mg of POM
What I know so far::

* pomalidomide is a newer drug from Celgene and about to come out of trials from the Mayo and go out to general use
It's gone through Phase I and Phase II Clinical trials.

Here's something I found out:

newer findings but I dont have access to the hematology journals