Hello,
My name is Joseph (Joe) and I have been recently diagnosed with myeloma. My myeloma has the translocation 4;14, which I gather has a poorer prognosis than those myelomas that lack this translocation. Bad Luck for me.
My case is probably more torturous than most, no doubt more prolonged. My hematological woes started 15 years ago when I first developed neutropenia. This was discovered on a routine blood test after I had complained of frequent skin infections to my family physician. My neutropenia meant that I had to deal with a lot of infections. Some of the infections were very nasty indeed.
Within a year or two of my developing neutropenia, I began to have reduced levels of hemoglobin. At this point my family physician referred me to a hematologist who did what all good hematologists do, namely ordered lots of blood tests. On one occasion I even had 15 vials of blood withdrawn. The results of the tests showed that I had very unusual looking lymphocytes in my peripheral blood and that I had a small monoclonal spike in my protein levels in my blood serum (MGUS).
I also had a bone marrow biopsy performed. It showed that I had very hypocellular bone marrow with 80% of the cells being lymphocytes. Hence, I was diagnosed with a lymphoproliferative disorder. I was told that I likely had large granular lymphocytic leukemia along with a possibility of having hairy cell leukemia. There was no mention of myeloma at this point. I was also told that both these afflictions were considered to be indolent and there was no rush for treatments. And this proved to be the case for me.
Over the years my hemoglobin levels slowly decreased to point where I needed regular red blood cell transfusions. I have been having three units transfused every three weeks for the last 6 years. This is quite a high level and I’ve been forced to deal with the iron overload that comes with so many units of transfused blood.
Earlier this year my circumstances deteriorated. My tiredness got much worse and a numbness / tingling developed in my feet and hands. Also, my platelet counts dropped and my M-spike in my peripheral blood reached the level of 28 grams per litre (2.8 g/dL). All of this showed that something had changed. I feared the worse.
I was urged to get another bone marrow biopsy, which I did despite my bad memories of my previous biopsies. The results of my most recent biopsy clearly show that I have developed myeloma with translocation (4; 14). My bone marrow remains hypocellular, but it now has 60% plasma cells. To complicate matters further, my bone marrow biopsy also shows that I also have hairy cell leukemia. In effect, I have two blood cancers at one time. Not good fortune.
I have been offered treatment of cyclophosphamide, bortezomib (Velcade), dexamethasone, and pamidronate (Aredia). I have not yet decided whether to pursue this or to let the disease take its course. I am still seeking advice from health professionals and friends of mine. I hope to decide one way or the other within the next two weeks.
On the more personal side of things, I am a happily retired gent that enjoys walking, loves going to the opera, visiting friends, and petting all dogs. Despite my health woes, I remain cheerful and upbeat. Prior to my retirement, I was active in physics research and ended up teaching at a small university here in Canada.
I look forward to participating in forum and learning a thing or two from you.
Forums
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Double whammy - multiple myeloma & hairy cell leukemia
Joseph,
I underwent chemo with cyclophosphamide, bortezomib (Velcade), and dexamethasone (once a week for twelve weeks, more or less). This was followed by an autologous stem cell transplant. I was newly diagnosed last autumn, so my situation is very unlike yours, I realize that.
Has anyone suggested a transplant following the chemo regimen you described? It might be worth it.
Best wishes, Donnie
I underwent chemo with cyclophosphamide, bortezomib (Velcade), and dexamethasone (once a week for twelve weeks, more or less). This was followed by an autologous stem cell transplant. I was newly diagnosed last autumn, so my situation is very unlike yours, I realize that.
Has anyone suggested a transplant following the chemo regimen you described? It might be worth it.
Best wishes, Donnie
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Donnie - Name: Donnie
- Who do you know with myeloma?: self
- When were you/they diagnosed?: October, 2015
- Age at diagnosis: 61
Re: Double whammy - multiple myeloma & hairy cell leukemia
Thanks, Donnie, for sending your best wishes. All of us need them.
To answer your question, I can say that my hematologist mentioned this possibility as something we could consider down the road. Her immediate concern was that I reduce my M-protein by taking a course of chemotherapy. After that is done, she said we’ll be able to plot a new course depending on its degree of success. For me, a transplant seems to be on the horizon, not certain.
Because I have two blood cancers, I will still have lots of issues remaining even if chemotherapy is effective in reducing my M-protein levels.
Take care,
Joe
To answer your question, I can say that my hematologist mentioned this possibility as something we could consider down the road. Her immediate concern was that I reduce my M-protein by taking a course of chemotherapy. After that is done, she said we’ll be able to plot a new course depending on its degree of success. For me, a transplant seems to be on the horizon, not certain.
Because I have two blood cancers, I will still have lots of issues remaining even if chemotherapy is effective in reducing my M-protein levels.
Take care,
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Double whammy - multiple myeloma & hairy cell leukemia
Joe,
Sorry to hear that you've had this long saga of dealing with health issues. I was amazed to hear that you have two blood cancers at once, because my husband also has puzzled his doctors by showing up with two blood cancers. He has a similar issue in which treatment of myeloma doesn't help the myeloproliferative disorder and vice versa.
My only advice is to go to a hospital with experts who are prepared to deal with the complexities of such a case (we went to Mayo in Minnesota). I'm sure your case is way above the average oncologist's head.
Best of luck with treatments.
Sorry to hear that you've had this long saga of dealing with health issues. I was amazed to hear that you have two blood cancers at once, because my husband also has puzzled his doctors by showing up with two blood cancers. He has a similar issue in which treatment of myeloma doesn't help the myeloproliferative disorder and vice versa.
My only advice is to go to a hospital with experts who are prepared to deal with the complexities of such a case (we went to Mayo in Minnesota). I'm sure your case is way above the average oncologist's head.
Best of luck with treatments.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Double whammy - multiple myeloma & hairy cell leukemia
Ari,
Thanks for your expression of concern.
I suspect my situation is less complex than your husband’s because my B-cell lymphoproliferative disorder (hairy cell leukaemia) is following an indolent course. I have the sense that I can ignore it, at least for now. The real beast for me is going to be my myeloma.
I am still gathering as much information as I can about myeloma, trying to fit the treatment landscape into my own personal situation. I see my hematologist next week at which time I hope to tell her how I would like to proceed.
And I thank you for telling me about your husband’s situation. I hope it is going as smoothly as possible for him,
Joseph
Thanks for your expression of concern.
I suspect my situation is less complex than your husband’s because my B-cell lymphoproliferative disorder (hairy cell leukaemia) is following an indolent course. I have the sense that I can ignore it, at least for now. The real beast for me is going to be my myeloma.
I am still gathering as much information as I can about myeloma, trying to fit the treatment landscape into my own personal situation. I see my hematologist next week at which time I hope to tell her how I would like to proceed.
And I thank you for telling me about your husband’s situation. I hope it is going as smoothly as possible for him,
Joseph
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Double whammy - multiple myeloma & hairy cell leukemia
Joseph,
Really consider doing the treatment regimen that is being recommended. The course of treatment isn't all that bad and you should be able to continue your regular routine. Many people on this forum have the translocation that you have and are doing well. Yes, it does have a poorer prognosis, but that doesn't necessarily mean a bad prognosis with good treatment. With your myeloma under control, many of your health problems may be resolved.
All the best,
Nancy in Phila
Really consider doing the treatment regimen that is being recommended. The course of treatment isn't all that bad and you should be able to continue your regular routine. Many people on this forum have the translocation that you have and are doing well. Yes, it does have a poorer prognosis, but that doesn't necessarily mean a bad prognosis with good treatment. With your myeloma under control, many of your health problems may be resolved.
All the best,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Double whammy - multiple myeloma & hairy cell leukemia
I totally agree with Nancy. You really don't want to deal with untreated multiple myeloma. It's just an awful and very painful way to go.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Double whammy - multiple myeloma & hairy cell leukemia
I am about to start the same course of treatment for relapsed myeloma. As far as side effects go, I have taken all those drug before, and the worst issues for me were some fatigue, fluish symptoms (aches and pains etc), and some lowered blood counts and some nerve pains in legs and feet. Still good quality of life even while on meds.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Double whammy - multiple myeloma & hairy cell leukemia
Thanks for your inputs. It is comforting to know that the chemotherapy for myeloma is tolerable. That was one of my concerns.
My chief worry has been that my ongoing lymphoproliferative disorders may adversely affect treatments for myeloma.
Currently, my neutrophil levels are usually below 1 per nanoliter (1 G per litre) and my monoocytes are often below 0.1 per nanoliter (0.1 G/L). My immunoglobulins were measure last fall to be
IgG = 3.1 g/L,
IgA = 24.8 g/L and
IgM = 0.2 g/L.
(I am having them remeasured today. They are now probably worse. The high IgA is due to my kappa IgA myeloma.)
Despite my impaired immune system, I am leaning towards having chemotherapy, mostly because I think my myeloma is going to be much more aggressive in character than my other ailments.
Time will tell.
Joe
My chief worry has been that my ongoing lymphoproliferative disorders may adversely affect treatments for myeloma.
Currently, my neutrophil levels are usually below 1 per nanoliter (1 G per litre) and my monoocytes are often below 0.1 per nanoliter (0.1 G/L). My immunoglobulins were measure last fall to be
IgG = 3.1 g/L,
IgA = 24.8 g/L and
IgM = 0.2 g/L.
(I am having them remeasured today. They are now probably worse. The high IgA is due to my kappa IgA myeloma.)
Despite my impaired immune system, I am leaning towards having chemotherapy, mostly because I think my myeloma is going to be much more aggressive in character than my other ailments.
Time will tell.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Double whammy - multiple myeloma & hairy cell leukemia
Dear Joseph,
You might ask about omitting the cyclophosphamide from the treatment. There is very little clinical trial evidence that cyclophosphamide, Velcade, and dexamethasone is much more effective than Velcade + dexamethasone. And of the three drugs, the cyclophosphamide probably has the most side effects.
Regards,
David
You might ask about omitting the cyclophosphamide from the treatment. There is very little clinical trial evidence that cyclophosphamide, Velcade, and dexamethasone is much more effective than Velcade + dexamethasone. And of the three drugs, the cyclophosphamide probably has the most side effects.
Regards,
David
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Davidg - Name: David
- When were you/they diagnosed?: Feb 2015 - AL Amyloidosis
- Age at diagnosis: 53
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