Hello,
I thought maybe someone here would be able to help. I had an autologous stem cell transplant on February 10, 2016.
The first 2 months, all of my counts (WBC, RBC, hemoglobin, platelets etc.) were going steadily up. I went back to Moffitt on Monday May 2, and they said my counts were down. I have had bloodwork every week at my local oncologist, but they always said everything was good, so I was not checking and comparing.
When I went and looked, some of the counts had been steadily going down for the past month.
WBC is within normal range but has dropped from 6.9 to 4.9
RBC from 3.58 to 3.18
Platelets from 242 to 94
Hemoglobin 11.5 to 10.2
Others have gone down also.
My main concern is that my bone marrow is not doing what it is supposed to be doing. My local oncologist wants to start me on Revlimid for maintenance, and that will lower my levels even more. I have also lost 10 pounds in the past month (not trying to lose weight).
So is any of this normal? Should I be questioning my doctor more as to what is going on?
He seems to be of the "let's wait and see" mindset.
Any comments would be appreciated
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8 posts
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JaniceT - Name: Janice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 60
Re: Blood counts dropping 3 months post transplant
Do you have a specialist at the Moffitt center? I assume that is where you had the transplant done. Ask the physician that did the transplant, since this drop in counts is likely related to it. The physician at the Moffitt Center should be the best source to answer your questions.
With respect to blood tests, I always get a print out of mine and put them into Excel so I can track them easily. That way you can see the changes in the counts and spot any trends. It will also enable you to ask detailed questions about them when you have your doctor visits.
With respect to blood tests, I always get a print out of mine and put them into Excel so I can track them easily. That way you can see the changes in the counts and spot any trends. It will also enable you to ask detailed questions about them when you have your doctor visits.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Blood counts dropping 3 months post transplant
Hello, Janice.
Counts are monitored frequently in the immediate aftermath of the stem cell transplant. I recall, however, being advised that they do not "stabilize" until about day 90 to 100 for most people. So the fact that they are bouncing up and down at this point is not something that should be a great worry. Let your doctor monitor and see if they don't bounce back somewhat.
Of the numbers you posted, 3 out of the 4 (WBC, RBC, and HGB) I think are probably fine for where you are at. The one that the doctors and the medical team would probably want a bit more in range is the platelets, but as I said, at this point it could be a natural fluctuation.
I would not want to sugarcoat anything for you, but, I don't think those numbers by themselves are a great reason to be concerned at this point. Good luck to you.
Counts are monitored frequently in the immediate aftermath of the stem cell transplant. I recall, however, being advised that they do not "stabilize" until about day 90 to 100 for most people. So the fact that they are bouncing up and down at this point is not something that should be a great worry. Let your doctor monitor and see if they don't bounce back somewhat.
Of the numbers you posted, 3 out of the 4 (WBC, RBC, and HGB) I think are probably fine for where you are at. The one that the doctors and the medical team would probably want a bit more in range is the platelets, but as I said, at this point it could be a natural fluctuation.
I would not want to sugarcoat anything for you, but, I don't think those numbers by themselves are a great reason to be concerned at this point. Good luck to you.
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JPC - Name: JPC
Re: Blood counts dropping 3 months post transplant
My wife had a stem cell transplant on September 16 for multiple myeloma and is now at day 66. Here are my wife's numbers at day 66:
Component Value Standard Range
WBC 3.9 th/mm3 3.4 - 10.8 th/mm3
RBC 2.37 mil/mm3 3.77 - 5.28 mil/mm3
HGB 8.8 g/dL 11.1 - 15.9 g/dL
HCT 27.7 % 34.0 - 46.6 %
MCV 117 fL 79 - 97 fL
MCH 37.1 pg 26.6 - 33.0 pg
MCHC 31.8 g/dL 31.5 - 35.7 g/dL
RDW 13.2 % 12.3 - 15.4 %
PLATELET CT 238 x10E3/uL 150 - 379 x10E3/uL
POLYS-AUTO, ABS 2.14 th/mm3 1.4 - 7.0 th/mm3
The RBC count is low at 2.37, the HGB count is low at 8.8, and the MCV count is high at 117.
Everything else appears normal. We're wondering why the red blood cell counts aren't also.
The anemia is stressful for my wife and I was wondering if this is normal.
Our specialist doesn't seem worried, but he's not the one suffering with anemia.
Any thoughts and comments are welcome.
Component Value Standard Range
WBC 3.9 th/mm3 3.4 - 10.8 th/mm3
RBC 2.37 mil/mm3 3.77 - 5.28 mil/mm3
HGB 8.8 g/dL 11.1 - 15.9 g/dL
HCT 27.7 % 34.0 - 46.6 %
MCV 117 fL 79 - 97 fL
MCH 37.1 pg 26.6 - 33.0 pg
MCHC 31.8 g/dL 31.5 - 35.7 g/dL
RDW 13.2 % 12.3 - 15.4 %
PLATELET CT 238 x10E3/uL 150 - 379 x10E3/uL
POLYS-AUTO, ABS 2.14 th/mm3 1.4 - 7.0 th/mm3
The RBC count is low at 2.37, the HGB count is low at 8.8, and the MCV count is high at 117.
Everything else appears normal. We're wondering why the red blood cell counts aren't also.
The anemia is stressful for my wife and I was wondering if this is normal.
Our specialist doesn't seem worried, but he's not the one suffering with anemia.
Any thoughts and comments are welcome.
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Blood counts dropping 3 months post transplant
Hi wemery.
Since your specialist is a board certified hematologist / oncologist, I suspect this is just a variation from the typical autologous stem cell transplant recovery. Macrocytosis is related both to chemotherapy and bone marrow recovery.
That said,, there are other causes. liver disease, hypothyroidism (which can occur post chemotherapy), and vitamin deficiencies (which are also more common particularly if she had significant GI issues)/
With the high MCV/H - likely reticulocyte related - but you might ask if the B12, folate, and MMA (methylmelonic acid) and TSH are normal. Sometimes anemia is multifactorial.
Wishing you both the best,
rick
Since your specialist is a board certified hematologist / oncologist, I suspect this is just a variation from the typical autologous stem cell transplant recovery. Macrocytosis is related both to chemotherapy and bone marrow recovery.
That said,, there are other causes. liver disease, hypothyroidism (which can occur post chemotherapy), and vitamin deficiencies (which are also more common particularly if she had significant GI issues)/
With the high MCV/H - likely reticulocyte related - but you might ask if the B12, folate, and MMA (methylmelonic acid) and TSH are normal. Sometimes anemia is multifactorial.
Wishing you both the best,
rick
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Blood counts dropping 3 months post transplant
After my visit to Moffitt, my myeloma specialist called and scheduled me for a bone marrow biopsy. Biopsy was May 18th and bad news. Plasma cell leukemia. Had 2 rounds of DCEP (dexamethasone, cyclophosphamide, etoposide and cisplatin) to try and get things under control. Was a rough couple of months with having platelet and blood transfusions 3 to 4 times a week. Started on Kyprolis, cyclophosphamide, and dexamethasone September. Recent bloodwork shows I am not responding to treatment. Will be starting Darzalex, Pomalyst and dex this Wednesday (November 16, 2016).
Not sure what the next step would be. Hope this one works. I was only diagnosed September of 2015 and feel that I have gone through so much already. Becoming very discouraged. On the plus side, I really don't feel to bad.
Not sure what the next step would be. Hope this one works. I was only diagnosed September of 2015 and feel that I have gone through so much already. Becoming very discouraged. On the plus side, I really don't feel to bad.
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JaniceT - Name: Janice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 60
Re: Blood counts dropping 3 months post transplant
Hi Rick,
Thanks for the information in your reply. I had to look up the big words and found it all very interesting. Our specialist hasn't mentioned any of these things yet, so we're not worried, yet I can't help think something is not quite right with my wife's stem cell recovery. Her restaging is in 20 days, so we'll know more after the next bone marrow biopsy. I pray everything is fine.
I hope all is well with your husband and with you.
Thanks for the information in your reply. I had to look up the big words and found it all very interesting. Our specialist hasn't mentioned any of these things yet, so we're not worried, yet I can't help think something is not quite right with my wife's stem cell recovery. Her restaging is in 20 days, so we'll know more after the next bone marrow biopsy. I pray everything is fine.
I hope all is well with your husband and with you.
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Blood counts dropping 3 months post transplant
Hi JaniceT,
Sorry to hear about your diagnosis. I hope the new treatment plan works for you. In your previous post you stated, "My main concern is that my bone marrow is not doing what it is supposed to be doing." That seems to be our main concern also right now. Following my wife's stem cell transplant, her blood counts are extremely low, especially her red blood cells and hemoglobin. This is causing debilitating anemia. It seems her bone marrow is not doing what it is supposed to be doing.
Praying and hope the best for you.
wemery
Sorry to hear about your diagnosis. I hope the new treatment plan works for you. In your previous post you stated, "My main concern is that my bone marrow is not doing what it is supposed to be doing." That seems to be our main concern also right now. Following my wife's stem cell transplant, her blood counts are extremely low, especially her red blood cells and hemoglobin. This is causing debilitating anemia. It seems her bone marrow is not doing what it is supposed to be doing.
Praying and hope the best for you.
wemery
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
8 posts
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