[JBarnes]

Failed SCT, so they tell me.

by JBarnes on Thu Mar 28, 2013 1:17 pm

Hey guys, I figured I'd try to get some feedback on my docs treatment plans and see if it makes sense to you. Here's my history.

Diagnosed in Aug/12 - Kappa light chains were 330, M-Spike 6.0 and 30% cancer via biopsy.
After 4 rounds of VRD - Kappa light chains 23, M-Spike .6, 2% cancer via biopsy.
Jan 21st had a SCT.
March 16th first blood work up and Kappa light chains 21 and M-Spike .4.
Scheduled for a bone marrow in two weeks with another round of blood tests.

I've got no bone issues. All my bone pain/lesions have healed and I feel fine. All proteins from the urine have always been fine. And I have no other medical issues but the wife says I have mental ones!

My doc calls me today and says he wants to put me back on 4 rounds of VRD as the SCT appeared to have failed. I'm thinking he's hitting the panic button a little early. Would we not want to wait a couple of months with some more blood tests before we jump into 4 rounds VRD? Why not put me on maintenance chemo and see how that works?

Figured some of you guys have some history with this and might offer up some advice. Jerry.

[Christa's Mom]

Re: Failed SCT, so they tell me.

by Christa's Mom on Thu Mar 28, 2013 4:51 pm

Hi Jerry,

You and EJ are so similar! Prior to his SCT, EJ's M-Spike was .7. At the 100 day mark it was .4, and the doc considered starting him back on treatment again. She waited another month, and his M-Spike dropped to .1 and it has stayed there for 20 months and counting.

I think it is early to call your SCT a failure. You've not even hit your 100 days yet so your numbers are still bouncing around. I'd wait at least until day 100, or even a little longer, and get the tests repeated before starting treatment again.

Lyn

[rumnting]

Re: Failed SCT, so they tell me.

by rumnting on Thu Mar 28, 2013 6:18 pm

Is the MD saying that your SCT did not work the MD that did the SCT, or your local oncologist? My husband's M-spike continued to drop even after the 100 days.

[alaskanmeg]

Re: Failed SCT, so they tell me.

by alaskanmeg on Thu Mar 28, 2013 8:43 pm

Had an ASCT 21Dec12. That makes me at day 97 today.
My M-Spike went from 1.9 to .58
Bone Marrow from 15% to 8%
The doctors @ Fred Hutchinson want me to get the second transplant right away.
I am currently and tentatively scheduled on 18 Apr 13. I discussed the possibility of just going on maintenance therapy with my oncologist. How in the world do I make an informed decision with the novel agents being used today? Initial therapy was CyBorD. The maintenance would be Revlimid and dex.
What if I have the second ASCT and it doesn't wipe out the myeloma, wouldn't I just go on the maintenance therapy?
What if I stay at m-Spike .58 for twenty months like EJ? I could get the second transplant when my M-Spike increases, although I'm told it wouldn't be as effective.
I am so thankful for this site and for the opportunity to have to make a decision when others can't even get the drugs, let alone an ASCT.

[JBarnes]

Re: Failed SCT, so they tell me.

by JBarnes on Fri Mar 29, 2013 9:20 am

The information I got was from the Myeloma specialist in Denver. Now I got this information second hand from my local oncologist. I am scheduled to review the numbers with the specialist next month after a bone marrow biopsy. I'm reluctant to hit the hard stuff again and more incline to do maintenance chemo for a six month period while we track the numbers.

Alaska, I know the transplant center in Denver told me if my ASCT failed me they would do a donor Allo transplant in the hopes that would kick it.

Jerry.

[Liz.r]

Re: Failed SCT, so they tell me.

by Liz.r on Fri Mar 29, 2013 10:09 am

My husbands M spike went to 0 after the tplant and has remained at 0 since. His tplant was in August of last year. Our Onc said it would never be 0 but it has been! So happy about this! And he has the type of Myeloma that is at high risk for relapse. I'm believing he is not one of the "statistics".

[Dr. Jason Valent]

Re: Failed SCT, so they tell me.

by Dr. Jason Valent on Fri Mar 29, 2013 5:14 pm

In the absence of increase in M-protein post - transplant, I will usually proceed to maintenance therapy (generally with one drug) as opposed to placing patients back on 3 drug therapy.

However, I can't say that it would be wrong to try and push the response deeper with additional 3 drug therapy.

But to answer your question more directly, you are correct that starting maintenance and following the labs would be reasonable.

[JBarnes]

Re: Failed SCT, so they tell me.

by JBarnes on Sat Mar 30, 2013 11:45 pm

Thank you for your reply. We'll see what happens next month with my next blood test. I'll update this post with my results and decision on future treatment. Jerry