Thanks all for all your valued advises and comments! it is much appreciated.
The thing is overwhelming!
Forums
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orchid - Name: orchid
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: dec 27 2013
- Age at diagnosis: 45
Re: Multiple myeloma with anemia as only symptom
My situation sounds similar to yours. When I went in for a routine physical exam in May 2013, I was found to be slightly anemic. My doctor suggested that I see a hematologist which I did and was diagnosed with multiple myeloma. My only CRAB symptom was anemia...no bone or kidney problems. The bone marrow biopsy showed an 80% plasma infection. My m-spike was 4.0. It was suggested that I start treatment soon because of the high percentage of bone marrow infection and m-spike. I've had 20 weeks of treatments (Velcade, Revlimid and dexamethasone) and a bone marrow biopsy 2 weeks ago showed that my bone marrow infection percentage is now zero and m-spike is also zero. I will probably be having a stem cell transplant in the next month or so...still waiting to have it scheduled.
After being diagnosed in June 2013, I looked back and there were other symptoms I was having that were probably caused by the multiple myeloma. Those symptoms were frequent headaches (I just thought I was headache prone) and occasional nose bleeds. Anyway, the headaches and nosebleeds are pretty much gone now after the treatments and I actually feel much better. I will say however that I did have some minor side effects from the treatments. I have been off treatments for about 5 weeks in preparation for the stem cell harvest and most of those side effects are now gone.
After being diagnosed in June 2013, I looked back and there were other symptoms I was having that were probably caused by the multiple myeloma. Those symptoms were frequent headaches (I just thought I was headache prone) and occasional nose bleeds. Anyway, the headaches and nosebleeds are pretty much gone now after the treatments and I actually feel much better. I will say however that I did have some minor side effects from the treatments. I have been off treatments for about 5 weeks in preparation for the stem cell harvest and most of those side effects are now gone.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Multiple myeloma with anemia as only symptom
Hi Orachid, I was also diagnosed with multiple myeloma 2 years ago age 45 with anemia being my only symptom. My hbg could not get above 6 on its own and I was needing transfusions every 2 weeks.
Tried all the dietary suggestions to boost hbg levels with no improvement.
They tried procrit injections- which seemed to only make thing worse. Ended up with Pure Red Blood Cell Aplasia meaning my bone marrow stopped making red blood cells altogether.
Percentage of plasma cells in the marrow never exceeded 30 %. The doctors all felt I was having what they called a dis regulatory immune response to the myeloma. Meaning I was having an autoimmune response and my own immune system was going after the myeloma in the marrow but hitting the red blood cell precursors at the same time. Would have been nice if they left the RBC's alone. Who knows maybe it would have worked.
Out of lack of knowing what else to do we started induction with Velcade/Dex. No Lenalidomide due to the anemia. We were no longer transfusion dependent after 1 cycle. We decided to hit it hard completed induction and then on to transplant end of April this year.
Transplant was not as hard as I imagined was able to do the stationary bike a few times a day at 30 mins slow pace. I do think it helped with recovery and my psychological well being. Everyone who goes through it is different.
I fortunately I ever achieved a CR and my M spike was higher after transplant the before we went in. But I'm still holing on to a Hbg of 12-13 . Started Velcade/Dex again with no change in my mspike . Light chains have come so far down they can no longer measure them hence unable to give us a ratio. My Myeloma specialist in Boston wants to hold off adding Lenalidomide till we are 1 year post transplant due to the risk of SPM. Have a BMB this week to see exactly what is going on
Good luck with everything. I know how over whelming this can all be with. So many different opinions on how to treat, if to treat and wanting to know exactly what is going on. I strongly suggest seeking a second and even third opinion preferably at a large center that specializes in myeloma they have a wealth of knowledge and I have found the truly take the time to explain what they know to you and take into account how you would like to proceed at this point in time
-Jen
Tried all the dietary suggestions to boost hbg levels with no improvement.
They tried procrit injections- which seemed to only make thing worse. Ended up with Pure Red Blood Cell Aplasia meaning my bone marrow stopped making red blood cells altogether.
Percentage of plasma cells in the marrow never exceeded 30 %. The doctors all felt I was having what they called a dis regulatory immune response to the myeloma. Meaning I was having an autoimmune response and my own immune system was going after the myeloma in the marrow but hitting the red blood cell precursors at the same time. Would have been nice if they left the RBC's alone. Who knows maybe it would have worked.
Out of lack of knowing what else to do we started induction with Velcade/Dex. No Lenalidomide due to the anemia. We were no longer transfusion dependent after 1 cycle. We decided to hit it hard completed induction and then on to transplant end of April this year.
Transplant was not as hard as I imagined was able to do the stationary bike a few times a day at 30 mins slow pace. I do think it helped with recovery and my psychological well being. Everyone who goes through it is different.
I fortunately I ever achieved a CR and my M spike was higher after transplant the before we went in. But I'm still holing on to a Hbg of 12-13 . Started Velcade/Dex again with no change in my mspike . Light chains have come so far down they can no longer measure them hence unable to give us a ratio. My Myeloma specialist in Boston wants to hold off adding Lenalidomide till we are 1 year post transplant due to the risk of SPM. Have a BMB this week to see exactly what is going on
Good luck with everything. I know how over whelming this can all be with. So many different opinions on how to treat, if to treat and wanting to know exactly what is going on. I strongly suggest seeking a second and even third opinion preferably at a large center that specializes in myeloma they have a wealth of knowledge and I have found the truly take the time to explain what they know to you and take into account how you would like to proceed at this point in time
-Jen
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Jbodnar - Name: Jen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2012
- Age at diagnosis: 45
Re: Multiple myeloma with anemia as only symptom
I was diagnosed in March 2013, I had terrible back pain and was repaired by process called kyphoplasty .The procedure removed the back pain. But some pain I still there. I am age 72 and I am in treatment with Revlimid/dexamethasone10mg/zometa.
Revlimid 1- 15 mg daily on for 21 days and then off for 7 days
Dexamethasone once a week 5 2mg =10 mg total on Monday only
Zometa IV every 28 days.
Where do you live ? Age ? Where are you taking treatment ?
John Blankenberg
Revlimid 1- 15 mg daily on for 21 days and then off for 7 days
Dexamethasone once a week 5 2mg =10 mg total on Monday only
Zometa IV every 28 days.
Where do you live ? Age ? Where are you taking treatment ?
John Blankenberg
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fifthfield
Re: Multiple myeloma with anemia as only symptom
My hgb was low but not as low as you. I believe it was 9/10. With low hemoglobin and elevated m spike 5.0++ and a healing rib fracture , my multiple myeloma specialist put off treatment other than Zometa. His rational was the low HGB and rib fracture could be due to reasons other than from multiple myeloma after three months and an expanding rib lesion, he felt I needed to start chemo. I'm in stringent remission now.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
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