So many of you have offered wonderful insight into your treatment plans. I will be starting treatment sometime very soon and am wondering what to expect after induction for 4-6 months.
I believe they will collect stem cells for the future, but what tests should be done afterwards, and do the results dictate how long treatment continues? Once I start, will I always be taking medications?
Also, I want to mention that I am "ultra high risk smoldering" and I feel somewhat conflicted starting treatment without any CRAB symptoms (but as some of the posts have noted, there is an 80% risk of progression within 1 year).
I have already picked up my meds and they are patiently waiting in my pantry! Thank you so much!
Forums
2 posts
• Page 1 of 1
-
gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: What to expect after induction therapy?
I'm not sure what regimen you're on as far as medications go, and I have no experience with how smoldering multiple myeloma is treated, but I can tell you my experience.
As a rule of thumb, if you're on RVD with 3 week cycles (2 weeks on, one week off) they will generally look to begin harvesting stem cells after you've completed 3 to 5 cycles. I saw an article here on the Beacon recently that placed the optimal harvest at 4th cycle, although I think the cycles were 28 days in that study. Sorry I don't have the link.
One thing I know for sure, there are some doctors in rural areas in my state that have put multiple myeloma patients on RVD for over a year before they refer them to a larger hospital for stem cell transplant, and there is substantial evidence that some of these patients have trouble producing enough stem cells for even one transplant, let alone two. (Most docs like to harvest enough for 2 transplants so you only have to go through harvest once)
I don't know which drugs cause this, only that it happens with RVD patients, and it's something that frustrates my doctors when they get patient referrals far too late. Make sure you're on your doctor about optimal harvest time at every appointment.
You have two very positive things going for you right now: you're young, and you've detected the disease about as early as possible. You should feel good about that. A big part of sparring with multiple myeloma is maintaining your strength and finding a course of treatment that is tolerable and effective. You might be one of those lucky people that only needs one day on the apheresis machine (collection sessions are usually 4 hours in length on consecutive days), instead of the usual 4 sessions it takes an older or weaker patient.
The last thing to keep in mind is that although multiple myeloma is a persistent and tough disease, there are many other types of cancer that are far worse. multiple myeloma is bad enough to get lots of funding and attention to work toward a cure, but not so bad that you can't ride this out until that day comes. I have a friend who is in his 9th year and still going strong. You can do the same. Believe it.
As a rule of thumb, if you're on RVD with 3 week cycles (2 weeks on, one week off) they will generally look to begin harvesting stem cells after you've completed 3 to 5 cycles. I saw an article here on the Beacon recently that placed the optimal harvest at 4th cycle, although I think the cycles were 28 days in that study. Sorry I don't have the link.
One thing I know for sure, there are some doctors in rural areas in my state that have put multiple myeloma patients on RVD for over a year before they refer them to a larger hospital for stem cell transplant, and there is substantial evidence that some of these patients have trouble producing enough stem cells for even one transplant, let alone two. (Most docs like to harvest enough for 2 transplants so you only have to go through harvest once)
I don't know which drugs cause this, only that it happens with RVD patients, and it's something that frustrates my doctors when they get patient referrals far too late. Make sure you're on your doctor about optimal harvest time at every appointment.
You have two very positive things going for you right now: you're young, and you've detected the disease about as early as possible. You should feel good about that. A big part of sparring with multiple myeloma is maintaining your strength and finding a course of treatment that is tolerable and effective. You might be one of those lucky people that only needs one day on the apheresis machine (collection sessions are usually 4 hours in length on consecutive days), instead of the usual 4 sessions it takes an older or weaker patient.
The last thing to keep in mind is that although multiple myeloma is a persistent and tough disease, there are many other types of cancer that are far worse. multiple myeloma is bad enough to get lots of funding and attention to work toward a cure, but not so bad that you can't ride this out until that day comes. I have a friend who is in his 9th year and still going strong. You can do the same. Believe it.
2 posts
• Page 1 of 1
Return to Treatments & Side Effects