Hi everyone,
I was diagnosed in December 2010 and started a clinical trial in January 2011 which included Revlimid, dexamethasone and Velcade. Once I reached remission in July 2011, I started the maintenance phase, which was initially 25 mg of Revlimid (21 on, 7 off) plus dex, but I was having so many side effects from the dex that the doctor took me off that. I also started experiencing a little neuropathy in my feet, so we dropped the Revlimid dose to 15 mg, which did help. Otherwise I was just getting Zometa infusions every month, but the doctor stopped those after two years. So I've just been taking the 15 mg of Revlimid as maintenance.
My blood work has looked very good since 7/11, everything completely normal, but within the past several months one number has started to creep back up, the Kappa Free Light Chains. Since last November, they've gone this way: 1.82, 2.07, 2.13, 2.00, 2.38, 2.46, 3.08, 3.55. When I was diagnosed back in 12/10, this number was around 15.6, so obviously it is still much lower, but still, it is rising.
The doctor says that this is the main number he's looking at to determine whether the multiple myeloma is creeping back, because my other numbers, including paraprotein, have always been almost absent or very low (e.g. .2, .3) When I was diagnosed the main effect of the disease had been the bone lesions, which had led to my breaking my scapula (and getting the diagnosis.)
At this month's visit he asked whether I would want to stop the Revlimid; he said in that case he would advise just watching and waiting for a while to see how things go. I really didn't have an opinion on that so we agreed to give it one more month, but stop it next month if the Kappa number rises again.
It makes me nervous to think of not doing anything if the disease is trying to come back, but the doctor says this is pretty much the standard procedure, assuming that in all other respects I am feeling well (no bone pain, etc.) and that all the other blood work continues to be good. I was wondering what any of the other doctors here might think/advise, or if anyone else has gone through a similar scenario. The doctor said that fortunately we have lots of options to consider should we want to put me back on medication, so I am thankful for that.
Karen
Forums
7 posts
• Page 1 of 1
Re: When to stop Revlimid maintenance
Very good question. The lab trend in the light chain can represent one of 2 things. It is possible that it represents early relapse but overall the disease still seems to be under control provided blood counts, calcium levels, renal function are normal and there are no new bone lesions. The other possibility is that you have some immune reconstitution (healthy cells in immune system growing as the therapy is scaled back).
It is always tough to say which of these two very different processes are going on when the light chain is the best blood marker. Bone marrow biopsies are often not helpful when there is such a low level abnormality.
In your case, I would prefer to continue the Revlimid and monitor the trend in the light chain. If the numbers continue to increase, a change in therapy may be necessary and going back to Velcade or trying to restart a tolerable dose of dexamethasone and continuing Revlimid would be reasonable.
I am not in favor of discontinuation of treatment although, I suppose, this is still a topic of some debate.
It is always tough to say which of these two very different processes are going on when the light chain is the best blood marker. Bone marrow biopsies are often not helpful when there is such a low level abnormality.
In your case, I would prefer to continue the Revlimid and monitor the trend in the light chain. If the numbers continue to increase, a change in therapy may be necessary and going back to Velcade or trying to restart a tolerable dose of dexamethasone and continuing Revlimid would be reasonable.
I am not in favor of discontinuation of treatment although, I suppose, this is still a topic of some debate.
-
Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: When to stop Revlimid maintenance
Thank you, Dr. Valent,
That's very interesting about the immune reconstitution; I had not heard that before. Would it be reasonable to believe that might be happening if all other blood work and tests are normal? At my last visit the doctor stressed that this was the case, and at my last visit with the orthopedic oncologist she saw no new bone lesions in the X-rays. Of course, she is only X-raying the areas that had been the most affected (my arms and shoulders) so I suppose there is always the possibility that lesions are occurring in other places in the body.
I will discuss this with my doctor at next month's visit and see if we can come up with a plan. One thing that also confused me was that I asked him if there was a number for the Kappa light chains that would be "too high," and he said "not really," since he would be looking at all of the other results in conjunction with that. I wish things were more clear-cut in terms of knowing what is going on and how to proceed, but I understand that with this disease that's not always possible.
Karen
That's very interesting about the immune reconstitution; I had not heard that before. Would it be reasonable to believe that might be happening if all other blood work and tests are normal? At my last visit the doctor stressed that this was the case, and at my last visit with the orthopedic oncologist she saw no new bone lesions in the X-rays. Of course, she is only X-raying the areas that had been the most affected (my arms and shoulders) so I suppose there is always the possibility that lesions are occurring in other places in the body.
I will discuss this with my doctor at next month's visit and see if we can come up with a plan. One thing that also confused me was that I asked him if there was a number for the Kappa light chains that would be "too high," and he said "not really," since he would be looking at all of the other results in conjunction with that. I wish things were more clear-cut in terms of knowing what is going on and how to proceed, but I understand that with this disease that's not always possible.
Karen
-
Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: When to stop Revlimid maintenance
Karen, the same thing is happening to me with the Kappa Light Chain going up. All my other
numbers are good, & have been for 3 years, so my local Dr. is not changing anything (15mg Revlimid, Zometa every 3 mos.).
My KLC is at 19.0, just under the range. (I wish I had your number!). I am going to my multiple myeloma specialist in August, I only go to him once a year, & I'm a little nervous that he might not like this number. Oh, I wish this disease weren't so complicated!
Linda O
numbers are good, & have been for 3 years, so my local Dr. is not changing anything (15mg Revlimid, Zometa every 3 mos.).
My KLC is at 19.0, just under the range. (I wish I had your number!). I am going to my multiple myeloma specialist in August, I only go to him once a year, & I'm a little nervous that he might not like this number. Oh, I wish this disease weren't so complicated!
Linda O
-
LindaO - Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2010
- Age at diagnosis: 58
Re: When to stop Revlimid maintenance
Hi Linda!
I am wondering if our numbers are being measured in different units or something. You wrote that your KLC is at 19.0, "just under the range," but my lab says the Kappa range is 0.33 - 1.94 mg/dL (which is why my latest reading of 3.55 is over.) My Lambda number is 1.09 and the lab says the range is 0.57 - 2.63 mg/dL. And, they say the ratio standard range is 0.26 - 1.65 and mine is 3.26.
Maybe to compare ours I would need to put a decimal in yours and make it 1.9?
Anyway, I agree that it is very complicated to understand how all of these numbers work together. My doctor says he looks at all of the various tests together but I wonder how useful that is if the disease doesn't seem to be affecting some of the most common markers, like the paraproteins. Confusing indeed! I did have a bone marrow biopsy when I was first diagnosed and it came out at about 10%, and after initial treatment it was down to below 1%, so I guess that is one test we might need to repeat at some point.
Well, I am going to do some research so I can try to have an intelligent conversation with my doctor when I see him again! Best of luck to you and may you continue to be well for a long time!
I am wondering if our numbers are being measured in different units or something. You wrote that your KLC is at 19.0, "just under the range," but my lab says the Kappa range is 0.33 - 1.94 mg/dL (which is why my latest reading of 3.55 is over.) My Lambda number is 1.09 and the lab says the range is 0.57 - 2.63 mg/dL. And, they say the ratio standard range is 0.26 - 1.65 and mine is 3.26.
Maybe to compare ours I would need to put a decimal in yours and make it 1.9?
Anyway, I agree that it is very complicated to understand how all of these numbers work together. My doctor says he looks at all of the various tests together but I wonder how useful that is if the disease doesn't seem to be affecting some of the most common markers, like the paraproteins. Confusing indeed! I did have a bone marrow biopsy when I was first diagnosed and it came out at about 10%, and after initial treatment it was down to below 1%, so I guess that is one test we might need to repeat at some point.
Well, I am going to do some research so I can try to have an intelligent conversation with my doctor when I see him again! Best of luck to you and may you continue to be well for a long time!
-
Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: When to stop Revlimid maintenance
Hi Karen,
The results you have are expressed as mg/dL, while Linda's is mg/L.
If the test is giving you resutls in mg/dL, then you have to multiply everything by 10 in order to be on the same page with someone whose results are expressed as mg/L. Conversely, if your results are expressed as mg/L, you have to divide by 10 to get the mg/dL results.
So, your lambda results are 10.9 mg/L, with the range being 5.7-26.3 mg/L. Your kappa results are 35.5 mg/L, with normal range being 3.3-19.4 mg/L. The ratios will be the same whether you use mg/dL or mg/L.
Hope this helps.
The results you have are expressed as mg/dL, while Linda's is mg/L.
If the test is giving you resutls in mg/dL, then you have to multiply everything by 10 in order to be on the same page with someone whose results are expressed as mg/L. Conversely, if your results are expressed as mg/L, you have to divide by 10 to get the mg/dL results.
So, your lambda results are 10.9 mg/L, with the range being 5.7-26.3 mg/L. Your kappa results are 35.5 mg/L, with normal range being 3.3-19.4 mg/L. The ratios will be the same whether you use mg/dL or mg/L.
Hope this helps.
-
dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: When to stop Revlimid maintenance
Hi Karen,
I am in much the same situation as you. I saw my oncologist yesterday, and he discontinued my Revlimid and dex. He said my myeloma is in remission and I have, like you, been having some side effects. It is scary to go off, but he said if the numbers start back up, we can deal with it then.
I was diagnosed with MGUS in 2010 and took the "watch and wait" approach until last September, when my M-1 spike hit 4.8 g/dL (48 g/L). Plus my niece died of myeloma in August last summer, and I just thought it was time to begin treatment. There is a long family history on both sides of my family.
Now I am back to "waiting and watching". One thing for sure: this is a complicated disease with no one absolute rule to go by.
Good luck and thanks for posting. God has provided information when I needed it all along.
I am in much the same situation as you. I saw my oncologist yesterday, and he discontinued my Revlimid and dex. He said my myeloma is in remission and I have, like you, been having some side effects. It is scary to go off, but he said if the numbers start back up, we can deal with it then.
I was diagnosed with MGUS in 2010 and took the "watch and wait" approach until last September, when my M-1 spike hit 4.8 g/dL (48 g/L). Plus my niece died of myeloma in August last summer, and I just thought it was time to begin treatment. There is a long family history on both sides of my family.
Now I am back to "waiting and watching". One thing for sure: this is a complicated disease with no one absolute rule to go by.
Good luck and thanks for posting. God has provided information when I needed it all along.
-
Rebecca Craze
7 posts
• Page 1 of 1
Return to Treatments & Side Effects