Thursday, June 17, 2010

Mayo test results are in, and ...

... Bon Jovi, put some clothes on, for the love of God! Aren't you getting cold?

Yeah, my M-spike is up to 3.6. I want to stress that, even though 3.6 freaks me out a little, Dr. H says she is NOT AT ALL FREAKED OUT BY THIS. She said she totally understands how it would freak me out to watch it move from 1.7 to 3.6 in a year's time, but she sees myeloma patients all day, every day, and she's seen people who move from 1.7 to 3.6 in one week's time, so I'm actually doing very well. All of my other numbers are fine. I'm a teeny bit anemic, but, again, not enough to freak out Dr. H.

That said, she also thinks it's time to start thinking about some drugs again, probably within the next couple of months, just to be on the safe side. I have a few options. One is to return to Revlimid, either with or without the dex (I vote for without). The other is to enroll in a clinical trial of pomalidomide plus dex at the Mayo Clinic. If you read my highly scientific and insightful posts about ASCO, you already know that pomalidomide is Revlimid: The Next Generation:

I haven't decided what I'm going to do yet. On the one hand, pomalidomide is supposed to be a better drug, with fewer side effects than Rev, and I would get it for free, since I'd be on a clinical trial. On the other hand, I feel like I should exhaust the Revlimid (which was still working for me when I quit), before I move on to the next drug. Plus, I'd have to go to Mayo once a month for the pomalidomide trial, and I'd be required to take it with dex, at least at the beginning. With the Rev, I have the option to try it without dex to see if it worked alone.
Decisions, decisions. What would Bon Jovi do?


Lorna said...

I reckon Bon Jovi would try it without! ;-)

Brooke said...

Hmm...will the trial be readily available in the future if you pass on it this time? Tough decision, but I think you can't go wrong with either. Try to enjoy the rest of your vacay!

Sandy said...

Bon Jovi doesn't look like a "moderation-in-all-tings" kinda guy... He looks more like Nick, who went all out with BB in AK... you might contact him to share your thoughts.

Elizabeth said...

I know you said your anemia is just slight this time, but Dr. Oz says to try cooking in a cast iron skillet. He said some iron from the pan will pass into your food and is more easily absorbed than supplements are. I had never heard of that before, have you?

Karen's mom said...

I would hope B.J. doesn't care if he's cold...

I like your point about how regular Revlimid has more or less worked for you - at least it gave you a one year reprieve from itself. Would the Pomalidomide possibly take your numbers lower or give you a longer reprieve? I suppose that's what the trial wants to know. Another question I'd have is whether you like the fewer side effects of the next Pomalidomide, whatever they are. Dad and I are ready to back you on either choice, helping with appointments and caring for WCK.

Elizabeth's iron-from-a-skillet advice is very good! You don't even have to clean the skillet - just rinse it, wipe it out and hang it up : ) Jenny and TJ swear by castiron cookware.

Jim and Jane in Florida said...

Hi Karen,
We face the same dilemma. Velcade worked really well for Jane. Her M-spike is climbing and we face treatment again. Our docs want her to do a cocktail involving Revlimid which had quit working. We are insisting on using Velcade again until it quits working. Each drug that works is so important we want to maximize the benefit. Not to mention Jane had heart problems with Revlimid and Thal. and didn't with Velcade. Just the opposite in fact. I hope and pray we are choosing well. Best wishes to you and yours.
Your friends in Florida,
Jim and Jane

Susie Hemingway said...

Seems your M-spike is still not too bad - It might go up if you keep looking at pictures as good as this one!!! LOL
These decision are always hard to make but it's so good that the Revlimid worked well for you before.
My husband is to try with Revlimid next as the Velcade failed and his M-spike is now a whopping 14. I sincerely wish you well with whatever you decide.

Anonymous said...

This wouldn't be a difficult choice for me since I don't ever, EVER want to take dex again, it sent me strange!

That's such a smutty looking pic of Jon Bon Jovi, normally he looks so sweet even with his shirt off! You should be ashamed of yourself for publishing such things. ;D (Thanks)

Continue to have a great holiday, I mean, vacation.

Don said...

You make a good point that you haven't yet used up Revlimid. On the other hand, pomalidomide is free (if it matters) and I very much doubt you would have to head to Rochester every 28 days. I think at most every third cycle, with the others done by your local oncologist.

Peter said...

Hello Webmaster,

I am webmaster of Health Care related websites; I've found your website information ( and advice to be a very good fit for our visitors so could you please give us the best price for a site wide link on your esteemed website for a period of quartly and half Yearly? We will make payments Via PayPal so if interested, please mention your PayPal id.

If we are happy with your price, then we will send you the Link details that you can place on your website and we will make the payments to the PayPal id provided by you.

Peter Freeman