I have been reading The Myeloma Beacon since my husband was diagnosed with multiple myeloma in September, 2014. At first, his doctor said it was smoldering and would watch.
After a second bone marrow biopsy in February 2015, it was decided to start him on 15 mg of Revlimid and 50 mg of dexamethasone. He only made it 11 days before being hospitalized with a general infection. He finally, after several months, was able to tolerate 10 mg of Revlimid every other day, and 30 mg of dexamethasone every week.
We were on the 3rd month and saw the doctor today. After looking at the latest test results, the doctors think that he may also be suffering from MDS (myelodysplastic syndromes). They are going to keep him on the Revlimid, 10 mg daily, but take him off the dexamethasone (my husband is happy about that).
We are still in a state of shock and don't even know what to ask the doctor when we see him. I would welcome any information.
Some additional information: My husband has always had low normal while blood cell and low platelet counts. However, lately all white counts and red counts, including hematocrit and hemoglobin, are are low except for RDW, which are way up. Platelets are staying around 65-70.
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ritamenzel - Name: Rita M.
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: September, 2014
- Age at diagnosis: 84
Re: Multiple myeloma and myelodysplastic syndromes
Welcome to the forum, Rita.
I'm very sorry to hear about all that your husband and you have been through. Being diagnosed with multiple myeloma is a tough enough situation on its own. To have a diagnosis of MDS thrown on top is downright cruel.
The main thing I would suggest at this point is to make sure that your husband is seen by specialists at a major cancer center. Both myeloma and MDS are rare conditions, so it's very rare for the two conditions to show up at the same time in the same patient, right after diagnosis.
(Myeloma patients sometimes develop MDS several years after diagnosis. It seems to be a side effect of some treatments, particularly Revlimid and thalidomide, and particularly if those drugs are given after a transplant.)
What your husband is experiencing with low blood cell counts is, I believe, the classic symptom of MDS. The disease is basically a case of "bone marrow suppression," as we often call it in the myeloma world, taken to an extreme.
In addition to making sure your husband is seen by specialists at a major cancer center that has myeloma and MDS specialists, I would make sure you are prepared to ask questions about what type of MDS your husband has (I believe there are different types of MDS, just like there are different types of leukemia and lymphoma). Also, ask whether any tests have been done to determine how aggressive the MDS is likely to be.
I don't know how old your husband is, and what sort of health he is in, but one option that his doctors may suggest is an allo (donor) stem cell transplant. As you know, it's a treatment option for multiple myeloma patients, and it's also an option for the treatment of MDS. Given that it could "kill two birds with one stone," it's probably something the doctors will consider.
Finally, all the usual suggestions apply -- prepare questions in advance, try to make sure both of you are there for all your husband's appointments, take notes or record the discussions with the doctors so you can review them afterwards, etc.
I'm sending both of you as much strength and good wishes as I can. Please let us know how things go, and if you have more questions for us.
I'm very sorry to hear about all that your husband and you have been through. Being diagnosed with multiple myeloma is a tough enough situation on its own. To have a diagnosis of MDS thrown on top is downright cruel.
The main thing I would suggest at this point is to make sure that your husband is seen by specialists at a major cancer center. Both myeloma and MDS are rare conditions, so it's very rare for the two conditions to show up at the same time in the same patient, right after diagnosis.
(Myeloma patients sometimes develop MDS several years after diagnosis. It seems to be a side effect of some treatments, particularly Revlimid and thalidomide, and particularly if those drugs are given after a transplant.)
What your husband is experiencing with low blood cell counts is, I believe, the classic symptom of MDS. The disease is basically a case of "bone marrow suppression," as we often call it in the myeloma world, taken to an extreme.
In addition to making sure your husband is seen by specialists at a major cancer center that has myeloma and MDS specialists, I would make sure you are prepared to ask questions about what type of MDS your husband has (I believe there are different types of MDS, just like there are different types of leukemia and lymphoma). Also, ask whether any tests have been done to determine how aggressive the MDS is likely to be.
I don't know how old your husband is, and what sort of health he is in, but one option that his doctors may suggest is an allo (donor) stem cell transplant. As you know, it's a treatment option for multiple myeloma patients, and it's also an option for the treatment of MDS. Given that it could "kill two birds with one stone," it's probably something the doctors will consider.
Finally, all the usual suggestions apply -- prepare questions in advance, try to make sure both of you are there for all your husband's appointments, take notes or record the discussions with the doctors so you can review them afterwards, etc.
I'm sending both of you as much strength and good wishes as I can. Please let us know how things go, and if you have more questions for us.
Re: Multiple myeloma and myelodysplastic syndromes
Hello again Rita.
I just saw in your profile that your husband is 84. So that almost certainly means that he wouldn't be considered for an allo transplant. I want to say "certainly", rather than "almost certainly", but you never know; so I would still at least raise the subject with your husband's doctors.
One thing you should know is that Revlimid is also used to treat some forms of MDS. In fact, the first disease it was approved to treat was MDS, rather than multiple myeloma.
So, if the type of MDS he has is the kind that can be treated with Revlimid, it may be something his doctors consider treating him with, since it also might address both disease at the same time.
Good luck!
I just saw in your profile that your husband is 84. So that almost certainly means that he wouldn't be considered for an allo transplant. I want to say "certainly", rather than "almost certainly", but you never know; so I would still at least raise the subject with your husband's doctors.
One thing you should know is that Revlimid is also used to treat some forms of MDS. In fact, the first disease it was approved to treat was MDS, rather than multiple myeloma.
So, if the type of MDS he has is the kind that can be treated with Revlimid, it may be something his doctors consider treating him with, since it also might address both disease at the same time.
Good luck!
Re: Multiple myeloma and myelodysplastic syndromes
Thank you for your reply Terry. I have been compiling a list of questions to ask the doctor and will add yours to the list. I appreciate it.
They are treating him with Revlimid as this is a chromosome 5 deletion. Hope I am getting the terminology right. Thought I had learned enough to keep me knowledgeable on multiple myeloma, but now we are learning more, as with most people who have these diseases.
It is always helpful to me as a caregiver to read how positive people are, and I am grateful that I can look at this website.
They are treating him with Revlimid as this is a chromosome 5 deletion. Hope I am getting the terminology right. Thought I had learned enough to keep me knowledgeable on multiple myeloma, but now we are learning more, as with most people who have these diseases.
It is always helpful to me as a caregiver to read how positive people are, and I am grateful that I can look at this website.
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ritamenzel - Name: Rita M.
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: September, 2014
- Age at diagnosis: 84
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