Hi everyone,
My dad was diagnosed with multiple myeloma in February 2014. He has responded excellently to treatment for his myeloma. He had an autologous stem cell transplant in October 2014. He has been in remission since and was scheduled to be completed with chemotherapy in March of 2016.
He found out this week that his myeloma remains in remission, but he now has leukemia. It is thought that it developed as a complication of his chemo for myeloma. I do not know the type of leukemia, my dad didn't ask at the appointment.
They stopped his chemo for myeloma and he is scheduled to see his oncologist next week to discuss his new chemotherapy plan. My brother will be going with him to that visit to make sure we get all the details, as my dad is understandably overwhelmed. He is only 66 and my mom died one month before he was diagnosed, so it's been a really hard few years.
I've done searching online and what I have seen about leukemia development after myeloma treatment is not great. Prognosis seems to be quite poor. Does anyone have any experience with this? I'm just hoping to gain some insight on what I might be able to expect.
My husband and I relocated away from my dad last year due to a job change, and we are trying to decide if we need to find a way to get back home. We also just found out we are expecting our second child and I am devastated by the thought that my dad my not be there when he / she arrives.
Any insight / support that you can provide would mean the world to me.
Thank you so very much.
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7 posts
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mapales2 - Name: Melissa
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 64
Re: Leukemia after multiple myeloma treatment
Hi Melissa,
I'm so sorry to hear this news, especially after your dad was doing well post ASCT.
It will be important to understand what kind of leukemia your dad has. Secondary plasma cell leukemia (PCL) can sometimes evolve in multiple myeloma patients that were previously diagnosed with multiple myeloma. It is a rare and aggressive form of myeloma that will require working with some top myeloma specialists to get it under control.
Other secondary malignancies such as other cancers can sometimes also occur as result of the agents used to treat multiple myeloma.
But we really don't know what kind of leukemia your dad has, so PCL is just one possibility. Once you have a definitive diagnosis, folks on the forum can then point you to some earlier threads and resources. Good luck and let us know things go next week.
I'm so sorry to hear this news, especially after your dad was doing well post ASCT.
It will be important to understand what kind of leukemia your dad has. Secondary plasma cell leukemia (PCL) can sometimes evolve in multiple myeloma patients that were previously diagnosed with multiple myeloma. It is a rare and aggressive form of myeloma that will require working with some top myeloma specialists to get it under control.
Other secondary malignancies such as other cancers can sometimes also occur as result of the agents used to treat multiple myeloma.
But we really don't know what kind of leukemia your dad has, so PCL is just one possibility. Once you have a definitive diagnosis, folks on the forum can then point you to some earlier threads and resources. Good luck and let us know things go next week.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Leukemia after multiple myeloma treatment
Thank you for the response. I had my dad call his doctor and he said that he actually has myelodysplastic syndrome. He will get more details Monday.
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mapales2 - Name: Melissa
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 64
Re: Leukemia after multiple myeloma treatment
Sorry to hear that he has MDS. There is a sister forum to the Myeloma Beacon that you should find very helpful regarding MDS. http://www.mdsbeacon.com/ Best of luck with all this. Let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Leukemia after multiple myeloma treatment
Hello Melissa,
In addition to the helpful advice that Multibilly has given you, you may want to check out some of the previous discussions here in the forum about cases of MDS. You can find them here:
https://myelomabeacon.org/forum/search.php?keywords=mds+myelodysplastic+myelodysplasia&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
I think the posting by Dr. Voorhees in this thread,
https://myelomabeacon.org/forum/treatment-related-myelodysplasia-mds-t4218.html
may be particularly helpful.
MDS developing in a patient who already has multiple myeloma requires experienced medical attention. If your father is not already being seen by doctors at a major cancer center, where there are myeloma specialists and, MDS specialists, now would really be the time to make sure he gets a consultation at such a center. If you need help locating a center near you, let us know generally where you are, and someone here will almost certainly be able to give you some suggestions.
In addition to the helpful advice that Multibilly has given you, you may want to check out some of the previous discussions here in the forum about cases of MDS. You can find them here:
https://myelomabeacon.org/forum/search.php?keywords=mds+myelodysplastic+myelodysplasia&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
I think the posting by Dr. Voorhees in this thread,
https://myelomabeacon.org/forum/treatment-related-myelodysplasia-mds-t4218.html
may be particularly helpful.
MDS developing in a patient who already has multiple myeloma requires experienced medical attention. If your father is not already being seen by doctors at a major cancer center, where there are myeloma specialists and, MDS specialists, now would really be the time to make sure he gets a consultation at such a center. If you need help locating a center near you, let us know generally where you are, and someone here will almost certainly be able to give you some suggestions.
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JimNY
Re: Leukemia after multiple myeloma treatment
Thank you very much for the helpful responses. I really appreciate the support. Do you know if the MDS Beacon has a forum similar to this? I looked on the site but only saw the physician's forum. Did I miss something. Thanks again.
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mapales2 - Name: Melissa
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 64
Re: Leukemia after multiple myeloma treatment
Hi Melissa,
Unfortunately, the MDS Beacon does not have a patient and caregiver forum such as the one here at the Myeloma Beacon.
Best wishes to you and your father.
Unfortunately, the MDS Beacon does not have a patient and caregiver forum such as the one here at the Myeloma Beacon.
Best wishes to you and your father.
7 posts
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