[Pajarito]

Re: AC's stem cell transplant in South Florida

by Pajarito on Sun Jul 10, 2016 7:09 pm

Hello AC,

I had been out on vacation and taking a little break from thinking about myeloma, but decided to catch up this afternoon as I head into the start of VRd Cycle 4 tomorrow and some pre-ASCT appointments at Sylvester this week.

I had been thinking about you, so I was happy to see you have continued to post following your release from the hospital.

I am glad you are doing well and finding renewed strength and enjoying some summertime follow­ing your transplant.

I will keep you in thoughts and prayers that your physical recovery continues to go "swimmingly" and your transplant results continue to improve.

John

[Aclinkboca]

Re: AC's stem cell transplant in South Florida

by Aclinkboca on Sun Jul 10, 2016 10:37 pm

Thanks, John. I wish you the best. Are you scheduled for your transplant at the middle or end of August?

I will be at Sylvester on Wednesday and Thursday. Keep us updated on how you are doing and enjoy your South Florida summer until your transplant.

For me the weeks I was off my induction and before my transplant started was the sweet spot (even with central line). Hopefully you will feel the same after your 4th cycle and before the transplant.

AC

[Aclinkboca]

Re: AC's stem cell transplant in South Florida

by Aclinkboca on Thu Jul 14, 2016 8:49 pm

Its Day +61 today, but I received the news my kappa free light chain number keeps increasing.

I have one myeloma specialist saying that I should only take Revlimid 10 mg until I show a "CRAB" symptom, and the other saying I should take 10 mg of Revlimid and do the immunotherapy once a week for eight weeks.

What's the best path?

Kappa FLC, serum 166.7 mg/l H (3.3-19.4)
Lambda FLC, serum 2.0 mg/l L (5.7-26.3)
Kappa/lambda FLC ratio, serum 83.35 H (0.26-1.65)

[Aclinkboca]

Re: AC's stem cell transplant in South Florida

by Aclinkboca on Mon Jul 25, 2016 8:55 am

Day +73

Anyone who has read my post knows I have been dealing with escalating light chains ever since I was released from my stem cell transplant back on May 27th. My kappa light chains had increased to 186 just two weeks ago but I just received the news that they have fallen to 86. Still a long way to go, but a huge drop.

Many on this forum have posted suggesting I wait and see if the rash I had caused some of the high kappa levels. I hope everyone was right and I was wrong and the numbers keep dropping further.

I am going In for a bone marrow biopsy today and will post more when I hear the results. Most positive I have been since I left he the hospital.

"Just keep on swimming!"

AC.

[Ellen Harris]

Re: AC's stem cell transplant in South Florida

by Ellen Harris on Mon Jul 25, 2016 2:20 pm

AC,

That's great news. I hope you continue to a stringent complete response (sCR)!

Regards,
Ellen Harris

[JPC]

Re: AC's stem cell transplant in South Florida

by JPC on Mon Jul 25, 2016 3:46 pm

Thank you for the update, AC. I, too, hope that the earlier reading turns out to be one of those false alarms that people are prone to very early after the stem cell transplant. Good luck to you. Regards,

[dogmom]

Re: AC's stem cell transplant in South Florida

by dogmom on Mon Jul 25, 2016 6:59 pm

Good news. Hope it continues!

[Mark Pouley]

Re: AC's stem cell transplant in South Florida

by Mark Pouley on Mon Jul 25, 2016 8:15 pm

Best wishes and good vibes for the biopsy.

[Aclinkboca]

Re: AC's stem cell transplant in South Florida

by Aclinkboca on Tue Jul 26, 2016 11:43 pm

Thank you for all the well wishes. I made it through another bone marrow biopsy and saw my myeloma specialist today.

There seems to be a difference of opinion. The myeloma specialist said that the dex they were giving me for my rash is what knocked my kappa light number from 163 to 68 in a week. He said this is good because it responded with just the dex.

My stem cell doctor wants to place me on just dex for a little while my body recuperates from the stem cell (I'm on Day +74).

The myeloma specialist didn't want anything to develop further and he said that he wants to start me on 2 cycles of Revlimid, Velcade, and dex (40 mg) like what I went through in the induction therapy.

I would appreciate anyone's opinion. After going through the stem cell transplant and also this rash, I am gun shy on side effects.

AC

[blueblood]

Re: AC's stem cell transplant in South Florida

by blueblood on Wed Jul 27, 2016 9:13 am

AC

It's a tough decision. However, I come from the more-is-better camp (I'm not saying that is right for anybody else though). I would be inclined to try the RVd to see exactly what side effects appear. I'm not familiar with a stem cell transplant doctor that appears different than you myeloma specialist. Decisions, decisions. Good luck.