Friday, October 01, 2010

I Can't Even Wrap My Mind Around This

Ok, so, let me set the stage.

At diagnosis my number is crazy and makes no sense. The normal value of IgA in a person's blood is between 75 and 375....give or take. Once the cancer makes it grow out of control, the average Multiple Myeloma patient begins to experience symptoms as they hit the low thousands.

My first number was 5850. That is well past the point where people begin to suffer bone damage. But my bones were rock hard. So it took a while to accept that I had cancer. Every doctor, nurse, or healthcare professional I came into contact had the same question when they saw my number - "Do you need a pain killer?" It was their clear assumption that my number could only mean excruciating pain. This wasn't true for me and made it that much harder for me to believe I had Multiple Myeloma.

But eventually I did.

So that plan was to take the super successful Revlimid/low dose dex and knock the number down into the hundreds and have a stem cell transplant.

But I was part of the 12 or 18% (I forget now, too many numbers in my head) for whom this plan doesn't work. It knocked the number down, but only to 3310 and then it bounced right back up. That's the other half of the equation. It has to go down and stay down. So after four cycles, we stopped. I didn't recover from the side effects of the drugs for eight more months, much longer than most Revlimid/ ld dex patients.

That was quite ironic. Think about it.....I waltz around the Internet telling you all how unusual and special I am. I am just as insufferable in real life...ask my sisters. This is one time it would be better to be part of the crowd, huh?

It took a while to accept that this failed. That based on what I read and was told, Revlimid w/ ld dex was my best shot. That plan B had far lesser chance of success.

It took 15 months to even get me back in Dr. Miller's office. I was 4190 on March 24, 2009 when I left. On June 1, 2010 when I returned - I had climbed up to 5060. I had resigned myself to the fact that I would have to go back and try again for one reason - my parents. I did not believe that this would work.....AT ALL. I was doing because not doing it would have hurt and upset my parents. I would deal with what I felt would be a year of pain (based on my previous 4 months of treatments and 8 months of recovery) so that I could face my parents with a clear conscience.

With that see now that I have it all mapped out in my mind. I think - my number is 5060 and I will go through four to six months of this drug combo - Revlimid/ld dex & Velcade. This will be more difficult even though the dose of both Revlimid & dexamethasone are lowered and given over a shorter span of time. I think that because from everything I was told and have read.....Velcade is much more toxic. So yes, it's only 10mg of Rev as opposed to 25 ......and yes it's only 14 days at a time instead of 21...and yes it's less dex. But we are throwing Velcade on top of it and I am weaker now because even though I did my best to ignore it and hide from it....I am symptomatic.

So I steel myself to accept four to six cycles of poison, have it fail and face eight months of recovery. And then everyone will leave me alone because I tried.

Then last Tuesday, the 21st, Kate, my nurse practitioner tells me that just one cycle of Velcade and dex (the Revlimid wasn't ready during the first cycle) has dropped the 5060 to 3040. It took me a while to process such success. A 40% drop with just 11 days/4 infusions of Velcade with low dose dex and no Revlimid.

Now today, the results are back for the second cycle. The second cycle ran from September 7th through the 20th. 11 days of Velcade and 14 days of Revlimid with ld dex.

Elizabeth, my infusion room nurse put the printout of my test results from Tuesday and today on the tray next to my arm and Grace and I played casual. The second Elizabeth walked out the door, Grace snatched them up before I could blink. The first page was my kidney function results from Tuesday.

Oh, by the way, I dropped 11 pounds of fluid since Tuesday and my blood pressure dropped from 152/90 t0 124/82.....thank you Lasix!

Grace read the first page and handed it to me. She read the second page with the IgA number.

"Is there a formula for the IgA number? I must be reading it wrong. Do you add a zero?"

She handed me the page. My IgA was 689.


It's followed by the word "Repeated" in bold type. Clearly someone else, either in the lab or Dr. Miller's office didn't believe it either.

That's in the hundreds.

That's what we are shooting for.

And here it is. Not after six rounds. Not after four rounds. After just two...well really less than two since the first round wasn't complete.

I put it down and sent Jen a text. Grace picked it up read it again. She put it down and I picked it up again. We did that a few more times.

Now remember, this is not the whole deal. Yes, it's down. Way down. But it has to stay down. Last time Revlimid did knock it down, but it didn't stay down. It bounced right back up. Revlimid did not produce a "durable response". This is a dramatic drop.....but it may not last. It may bounce right back up. If it does, it was for nothing.

But with those words of caution - cause I can't let my hopes get to built up.


****Please note, that in experiencing success like other people in this protocol.....I am in no way conceding that I am less than special and unusual.***


Ky Woman said...

Oh but Maggie, you are!

How wonderful that those bad numbers took a dive to record depths. May they stay there in the hundreds and may you not have to endure putting the more toxic stuff in your body.

What is it the Navy responds with...Hooyah? You go girl!! Hooyah!!

FbL said...

Wonderful news. *big grin*

Kanani said...

Wow. I hope it stays down forever.

Kanani said...

I am ordering you a Jesus cake!

Tom Goering said...

So my previous guess of 300 isn't looking so silly now is it :)

Chocolate cake is on me!! Woot!!

BostonMaggie said...

Well here in Boston, the Navy says "Huzzah!", so we'll go with that! Thanks Lynnis.

Fuzzy, "cautious" grinning.

I don't know about "Jesus cake"....but it's too bad you aren't going to Vegas, because the other "Jesus cake" troublemaker, my cousin Jessica will be there.

Tom....choclate cake is never refused, under any circumstances.

YNSN said...

Maggie, you're the most specialist lady I know. You never need to qualify your statements regarding others in relationship to yourself.

ponsdorf said...

When next we sing to each other I will note your holiness.

Then we will eat cake.

wolfwalker said...

Caveat duly noted ... but even so, Maggie, that's GREAT! news.

I will be thinking of you, and hoping the success continues.

Trish said...

You know me, I don't come out of hiding for just anything or just anyone. AWESOME !!! Glad to hear the news! Whenever you want, dinner is on me.

FbL said...

Yes, cautious grinning. WHen it gets better than cautious, I'll be dancing. ;)

I understand the caution. I never believe good news until I see it for myself. *hugs*