Hello,
Does anyone have experience with the blood condition thalassemia and multiple myeloma?
My mom was recently diagnosed with intermediate stage multiple myeloma. She also has beta-minor thalassemia. Unfortunately, she is not responding to her first round of treatment with Velcade, dex, and Revlimid.
I am wondering if anyone has had experience with thalassemia and multiple myeloma and if this has impacted prognosis, treatment options, etc.
For example, with the thalassemia, she is normally slightly anemic, but the treatment and the cancer has increased her anemia (as expected). But is there a chance of her becoming too anemic because of the combination?
Just trying to look at new angles.
Thanks.
Jessica
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Re: Thalassemia and multiple myeloma
Hi there,
My dad has kappa light chain myeloma with 17p del (high-risk) trait. He also has beta thalassemia minor. His hemoglobin hovers around 10 (lower normal level for healthy males is 12something). He did have some counts suppression during VTD regime (Hgb around 9, sometimes upper 8 – quite pale and anemic by definition); but doc said that as long as the level is above 6 it is still OK.
He underwent ASCT last year, and he is still technically in remission. Post-ASCT, his Hgb comes back to his "normal" levels, 10ish.
I did ask his doc whether his thalassemia would affect his prognosis, but doc said it shouldn't have any effect on myeloma.
So I don't think your Mom's response is related to her thalassemia.
I also have thalassemia, though my Mom doesn't. I'm constantly anemic; but my Hgb is slightly better than my Dad, perhaps because my Mom doesn't have it. Since your Mom has been living for a while just fine, you can take a deep breath and throw away thalassemia from the equation.
Stay strong and keep hoping for the best!
My dad has kappa light chain myeloma with 17p del (high-risk) trait. He also has beta thalassemia minor. His hemoglobin hovers around 10 (lower normal level for healthy males is 12something). He did have some counts suppression during VTD regime (Hgb around 9, sometimes upper 8 – quite pale and anemic by definition); but doc said that as long as the level is above 6 it is still OK.
He underwent ASCT last year, and he is still technically in remission. Post-ASCT, his Hgb comes back to his "normal" levels, 10ish.
I did ask his doc whether his thalassemia would affect his prognosis, but doc said it shouldn't have any effect on myeloma.
So I don't think your Mom's response is related to her thalassemia.
I also have thalassemia, though my Mom doesn't. I'm constantly anemic; but my Hgb is slightly better than my Dad, perhaps because my Mom doesn't have it. Since your Mom has been living for a while just fine, you can take a deep breath and throw away thalassemia from the equation.
Stay strong and keep hoping for the best!
Re: Thalassemia and multiple myeloma
Jessica,
Sorry, I have no knowledge of thalassemia.
However, a couple of things to note:
It might take more than one round of treatment to see the results of the VRd combo.
Not every one responds to this particular combo of drugs, so there are many more drug combinations that can be used if VRd proves to be ineffective for your Mom. The doctor might also simply choose to first adjust the doses of one or more of the drugs in the VRd cocktail.
Are you working with an oncologist/hemotolgist that specializes in multiple myeloma? If not, folks on the forum can suggest some institutions based on where your mom is located.
Best of luck to you and your mom.
Sorry, I have no knowledge of thalassemia.
However, a couple of things to note:
It might take more than one round of treatment to see the results of the VRd combo.
Not every one responds to this particular combo of drugs, so there are many more drug combinations that can be used if VRd proves to be ineffective for your Mom. The doctor might also simply choose to first adjust the doses of one or more of the drugs in the VRd cocktail.
Are you working with an oncologist/hemotolgist that specializes in multiple myeloma? If not, folks on the forum can suggest some institutions based on where your mom is located.
Best of luck to you and your mom.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thalassemia and multiple myeloma
Dear Jessica,
I agree that the diagnosis of thalassemia has no connection to the myeloma, nor should it have any impact on the prognosis from multiple myeloma. The only thing it should impact is the degree of anemia experienced by myeloma therapy - she will likely have more exaggerated anemia than myeloma patients without thalassemia.
I also agree that one needs to be careful about making premature conclusions about the effectiveness of a regimen after only 1 cycle. If the myeloma markers were stationary (not better but not worse), it certainly makes sense to continue therapy and reassess after the second cycle. If there has been notable increases in the myeloma markers over the course of the first cycle – an unusual circumstance – I would have a low threshold to repeat testing very quickly and change therapy if repeat testing shows further worsening.
One last point is to determine the timing of the baseline myeloma labs. If the baseline myeloma labs were obtained on the day that your mother started treatment, that is the best-case scenario. In that situation, the comparison is most reliable. If the baseline labs were obtained a few weeks prior to the start of therapy, it is possible that there may have been myeloma growth between the time the baseline labs were obtained and the myeloma therapy was started. In such a case, had myeloma labs been obtained on day 1 of the first cycle, they would have been higher than the baseline labs.
Lastly, the myeloma labs can fluctuate a bit depending on the circumstances. A good example would be the patient with free light chain myeloma who has variable kidney problems and is being followed by serum free light chain testing. In this instance, the labs can fluctuate quite a bit, and you have to be careful not to over-interpret changes in disease status based on a single data point.
I hope this makes sense. The bottom line is you need to be careful how you interpret the test results.
Good luck!
Pete V.
I agree that the diagnosis of thalassemia has no connection to the myeloma, nor should it have any impact on the prognosis from multiple myeloma. The only thing it should impact is the degree of anemia experienced by myeloma therapy - she will likely have more exaggerated anemia than myeloma patients without thalassemia.
I also agree that one needs to be careful about making premature conclusions about the effectiveness of a regimen after only 1 cycle. If the myeloma markers were stationary (not better but not worse), it certainly makes sense to continue therapy and reassess after the second cycle. If there has been notable increases in the myeloma markers over the course of the first cycle – an unusual circumstance – I would have a low threshold to repeat testing very quickly and change therapy if repeat testing shows further worsening.
One last point is to determine the timing of the baseline myeloma labs. If the baseline myeloma labs were obtained on the day that your mother started treatment, that is the best-case scenario. In that situation, the comparison is most reliable. If the baseline labs were obtained a few weeks prior to the start of therapy, it is possible that there may have been myeloma growth between the time the baseline labs were obtained and the myeloma therapy was started. In such a case, had myeloma labs been obtained on day 1 of the first cycle, they would have been higher than the baseline labs.
Lastly, the myeloma labs can fluctuate a bit depending on the circumstances. A good example would be the patient with free light chain myeloma who has variable kidney problems and is being followed by serum free light chain testing. In this instance, the labs can fluctuate quite a bit, and you have to be careful not to over-interpret changes in disease status based on a single data point.
I hope this makes sense. The bottom line is you need to be careful how you interpret the test results.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
4 posts
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