High risk smoldering myeloma protocol after 24 cycles of Revlimid?

Posted by coynelane @coynelane, May 30, 2022

I have high risk smoldering multiple myeloma and am on lenalidomide (Revlimid) as sole agent (not clinical trial) which will continue for 24 cycles. I'm currently in cycle 13 & have had stem cell collection. I'd like to learn of others with similar experience and their treatment options at conclusion of 24 cycles.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Is anyone in a clinical trial for smoldering multiple myeloma?

REPLY

Welcome @coynelane. Allow me to bring fellow members @wyom1998 @cctoo @flightdeckjohnn @sylvia67 @lfevold @packgb19 @gingerw who have experience with smoldering myeloma into this discussion.

Here are a few related discussions that may also interest you.
– Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait https://connect.mayoclinic.org/discussion/newly-diagnosed-with-smoldering-multiple-myeloma/
– I have smoldering Myeloma. Does anyone have this diagnosis? https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis/
– Is anyone here talking Revlimid? If so please share with me https://connect.mayoclinic.org/discussion/is-anyone-here-talking-revlimid-for-chemo-if-so-please-share-with-me/

Coynelane, how many cycles of lenalidomide (Revlimid) have you had? Is the goal to have a stell cell transplant? How are you feeling?

REPLY
@colleenyoung

Welcome @coynelane. Allow me to bring fellow members @wyom1998 @cctoo @flightdeckjohnn @sylvia67 @lfevold @packgb19 @gingerw who have experience with smoldering myeloma into this discussion.

Here are a few related discussions that may also interest you.
– Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait https://connect.mayoclinic.org/discussion/newly-diagnosed-with-smoldering-multiple-myeloma/
– I have smoldering Myeloma. Does anyone have this diagnosis? https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis/
– Is anyone here talking Revlimid? If so please share with me https://connect.mayoclinic.org/discussion/is-anyone-here-talking-revlimid-for-chemo-if-so-please-share-with-me/

Coynelane, how many cycles of lenalidomide (Revlimid) have you had? Is the goal to have a stell cell transplant? How are you feeling?

Jump to this post

I am currently in cycle 13 of Revlimid, feel fine, and am asymptomatic. My doctors have not indicated an immediate need for stem cell transplant. At my next appointment I will ask what is the plan after 24 cycles of Revlimid. That is the reason that I made the post in order to learn what other patients have experienced.

REPLY

@coynelane I echo the welcome to Mayo Clinic Connect.

I just finished round 10 of Revlimid, at a very low dose. Due to other health issues, we are taking a very slow approach to this, in order to not have my kidneys fail. Curiosity has me asking if your doctors consider you to be active multiple myeloma versus smoldering mm, seeing that you have had a harvest of stem cells already? Have they shared their plan for you, yet?
Ginger

REPLY
@gingerw

@coynelane I echo the welcome to Mayo Clinic Connect.

I just finished round 10 of Revlimid, at a very low dose. Due to other health issues, we are taking a very slow approach to this, in order to not have my kidneys fail. Curiosity has me asking if your doctors consider you to be active multiple myeloma versus smoldering mm, seeing that you have had a harvest of stem cells already? Have they shared their plan for you, yet?
Ginger

Jump to this post

Thank you for your greeting. My status is smoldering myeloma. The purpose for stem cell collection was to have stem cells available in the event I might need a transplant in the future. Furthermore, the collection needed to be completed before prolonged Revlimid treatment would make it difficult to collect sufficient stem cells. The current plan is to complete 24 cycles of Revlimid. My doctor has not indicated the plan after 24 cycles, and I will inquire about his thoughts at my next appointment.

REPLY

Hi, New diagnosis today. Smoldering melanoma. No lesions ,doing a 24 hour urine collection, bone marrow the 30th, 22 peptscan (spelling). With all those results I will get the game plan. So far, kidney, iron levels,calcium are good, Bit overwhelmed. Thankful for finding this forum.

REPLY
@eldernan76

Hi, New diagnosis today. Smoldering melanoma. No lesions ,doing a 24 hour urine collection, bone marrow the 30th, 22 peptscan (spelling). With all those results I will get the game plan. So far, kidney, iron levels,calcium are good, Bit overwhelmed. Thankful for finding this forum.

Jump to this post

Welcome to Connect @eldernan76. It’s understandable to be overwhelmed when you get a new diagnosis. Most of us in the forum are no strangers to that feeling.

It helps to be able to talk with other people who are going through the same experiences so you don’t feel quite so alone in your journey. We have several members in Connect who have Multiple myeloma who are more than happy to share their experiences and information. Please meet @gingerw, @cheft and others in this discussion:
https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis/
Smoldering myeloma is a slowly developing precancerous condition affecting the bone marrow. It can sound a bit confusing so here are a couple of good articles about MM and Smoldering MM from trusted sources:
https://www.verywellhealth.com/what-is-smoldering-myeloma-4687610
From Myeloma.org:
https://www.myeloma.org/what-are-mgus-smm-mm#:~:text=Patients%20with%20SMM%20have%20a,cells%2C%20kidneys%2C%20or%20bones
It sounds like you’re having all the appropriate tests coming up so that you can get a plan of action. Were you having symptoms that led to this diagnosis or was this discovered with a routine physical?

REPLY
@eldernan76

Hi, New diagnosis today. Smoldering melanoma. No lesions ,doing a 24 hour urine collection, bone marrow the 30th, 22 peptscan (spelling). With all those results I will get the game plan. So far, kidney, iron levels,calcium are good, Bit overwhelmed. Thankful for finding this forum.

Jump to this post

@eldernan76 Let me add my welcome to Mayo Clinic Connect.

Being overwhelmed is not unusual when we have a new diagnosis, and now we need to find reliable information going forward. Sending you a big hug of support from Oregon, and letting you know you can ask any questions you have here. Let's see what your medical team says!
Ginger

REPLY
Please sign in or register to post a reply.