I am Day +16 in my autologous stem cell transplant process and my most recent results are:
WBC - 0.9
ANC - 378
Platelets - 25
Hgb / Hct - 7.2 /20.4
I have had at least 4 bags of platelets and 2 or 3 red blood cell transfusions, getting one today. My counts are not moving. In fact, the RBC and platelets keep dropping, which is why I keep needing transfusions.
I am on vancomycin IV and oral antibiotics and other drugs and Neupogen shots daily.
Doctors do not look happy lately.
I was supposed to leave last week. Now they say I am here for a very long time until ANC is above a 1000 for two days. At the rate I am climbing, this might be month of March. I have already been in hospital 3 full weeks.
I am wondering if I will survive.
Is this stem cell transplant failure?
Forums
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous stem cell transplant failure?
Hi Melissa,
Please do not be discouraged. Low counts on Day +16 do not necessarily indicate "graft failure".
Did you have any complications during the transplant, i.e., viral or bacterial infection, or allergic type of reaction? If yes, then blood count recovery can take longer than expected. If not, sometimes it is a medicine that you are on that suppresses the blood counts. Even though the ANC is low, sometimes we have to "peel" off medicines that are otherwise critical during this low count period. Vancomycin can rarely be a culprit, and so can acyclovir. Rarely, there is a role for infusing more stem cells if there are more frozen and the blood counts are not budging after all of the aforementioned considerations.
Hang in there!
Please do not be discouraged. Low counts on Day +16 do not necessarily indicate "graft failure".
Did you have any complications during the transplant, i.e., viral or bacterial infection, or allergic type of reaction? If yes, then blood count recovery can take longer than expected. If not, sometimes it is a medicine that you are on that suppresses the blood counts. Even though the ANC is low, sometimes we have to "peel" off medicines that are otherwise critical during this low count period. Vancomycin can rarely be a culprit, and so can acyclovir. Rarely, there is a role for infusing more stem cells if there are more frozen and the blood counts are not budging after all of the aforementioned considerations.
Hang in there!
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Autologous stem cell transplant failure?
Hi Melissa,
I am confident you will survive, although I am not surprised that you wonder. Low counts like that make you feel really miserable. That you are alert enough to be aware of your counts says quite a bit!
I was not, but later looked mine up and was shocked at how low they were.
At Day +9, they were:
WBC 0.01 (!!)
Platelets 7 (!!)
RBC 2.73
Hgb 8.2
Hmcrit 24.6.
At Day +16, they were
WBC 1.54
Platelets 47
RBC 3.26
Hgb 9.6
Hmcrit 30.1
not a whole lot different than yours.
They climbed slowly and I needed transfusions after getting home but had complete response and am now doing well.
I am confident you will survive, although I am not surprised that you wonder. Low counts like that make you feel really miserable. That you are alert enough to be aware of your counts says quite a bit!
I was not, but later looked mine up and was shocked at how low they were.
At Day +9, they were:
WBC 0.01 (!!)
Platelets 7 (!!)
RBC 2.73
Hgb 8.2
Hmcrit 24.6.
At Day +16, they were
WBC 1.54
Platelets 47
RBC 3.26
Hgb 9.6
Hmcrit 30.1
not a whole lot different than yours.
They climbed slowly and I needed transfusions after getting home but had complete response and am now doing well.
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Autologous stem cell transplant failure?
Thank you for your replies.
Two days ago, the doctors did stop the vancomycin IV and an oral antibiotic that I was on in place of Cipro (ciprofloxacin) (had allergy to Cipro). They said it could be interfering with white counts coming up.
I did not have any infections or temperatures all through stem cell transplant process, just a bad rash due to Cipro and the antibacterial they used around the central line. I have had no mouth sores or vomiting and diarrhea once. A bit of nausea, but I'm able to eat quite well each day.
Today things look more promising.
Day +19 and counts are:
WBC 2.0
ANC 1600
Platelets 10
Hgb / Hct 8.7 / 24.3
I got red cells yesterday and platelets today. I get Neupogen everyday; I wish they would stop the Neupogen because it causes pain and the neuropathy gets worse; I may stop it tomorrow. Can't be soon enough!
I may be able to go to an apartment across from the hospital (Beth Israel Deaconess in Boston) tomorrow for 2 weeks and come over to the clinic each day.
My oncologist reassured me that my transplant is not a failure, but because I have amyloid in my marrow and my marrow has been so "beat up" by heavy previous chemo, it is going to take longer. She said she has seen this before and I must be patient.
Thank God things are looking up now!
Two days ago, the doctors did stop the vancomycin IV and an oral antibiotic that I was on in place of Cipro (ciprofloxacin) (had allergy to Cipro). They said it could be interfering with white counts coming up.
I did not have any infections or temperatures all through stem cell transplant process, just a bad rash due to Cipro and the antibacterial they used around the central line. I have had no mouth sores or vomiting and diarrhea once. A bit of nausea, but I'm able to eat quite well each day.
Today things look more promising.
Day +19 and counts are:
WBC 2.0
ANC 1600
Platelets 10
Hgb / Hct 8.7 / 24.3
I got red cells yesterday and platelets today. I get Neupogen everyday; I wish they would stop the Neupogen because it causes pain and the neuropathy gets worse; I may stop it tomorrow. Can't be soon enough!
I may be able to go to an apartment across from the hospital (Beth Israel Deaconess in Boston) tomorrow for 2 weeks and come over to the clinic each day.
My oncologist reassured me that my transplant is not a failure, but because I have amyloid in my marrow and my marrow has been so "beat up" by heavy previous chemo, it is going to take longer. She said she has seen this before and I must be patient.
Thank God things are looking up now!
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous stem cell transplant failure?
Melissa,
How are you doing? We are hoping things are getting better for you each day and your numbers have climbed. Keep us posted. Our thoughts are with you.
How are you doing? We are hoping things are getting better for you each day and your numbers have climbed. Keep us posted. Our thoughts are with you.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Autologous stem cell transplant failure?
Yes, Thank the Lord, they look much better!. Your ANC is 1600 and WBC is 2!? That is what mine still look like 2 years after transplant 
You have amyloid in your marrow? I believe that is a little bit like what I have - I have light chain deposition disease. I don't understand the amyloidosis as well, but the way I think of light chain deposition disease is that the byproducts of the cancerous plasma cells turn into damaging structures in my kidneys. As long as I can keep those kappa free light chains down, I am protecting my kidneys.
You will love having your strength come back as it turns spring. You have cherry blossoms in Boston, don't you? I thought everything smelled sweeter and every color was more vibrant as my health came back after the SCT. My SCT was in November 2012, so I remember how lovely it was to see every new sign of spring - I felt that my body and health were following the same path.
Cathy.
You have amyloid in your marrow? I believe that is a little bit like what I have - I have light chain deposition disease. I don't understand the amyloidosis as well, but the way I think of light chain deposition disease is that the byproducts of the cancerous plasma cells turn into damaging structures in my kidneys. As long as I can keep those kappa free light chains down, I am protecting my kidneys.
You will love having your strength come back as it turns spring. You have cherry blossoms in Boston, don't you? I thought everything smelled sweeter and every color was more vibrant as my health came back after the SCT. My SCT was in November 2012, so I remember how lovely it was to see every new sign of spring - I felt that my body and health were following the same path.
Cathy.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Autologous stem cell transplant failure?
Things are looking better. I was discharged from the hospital on Thursday January 29th to the apartments across the street from hospital. I am being carefully monitored and must report to clinic every day or every other day depending how counts look.
On January 30th my counts were:
WBC 2.5
RBC 2.54
Hgb / Hct 8.5 / 23.4
Neutrophils 73.0
Platelets 14
After a bag of platelets, my platelet count came up to 42 and the doc said I could take the next day "off" as the platelets would hold for a few days, but I must report to clinic on Sunday, February 1st for blood labs and any needed transfusions.
The doctor said I have a "delayed" response to transplant. She said to think of the stem cell as the seed and the bone marrow as the soil. The soil is not-so-good, so it is going to take longer for the stem cells to "seed" and produce blood cells. The bone marrow has amyloidosis and has had heavy pretreatment with chemo. I achieved partial response with 20 to 30% on bone marrow biopsy prior to SCT.
I asked the doctor if this means my chance for remission is low, but she said no, the time to transplant response is not related to remission response. I hope this is so. Anyhow, I will be close by the hospital in the apartment for at least two weeks. I will have to be patient.
Cathy, why is your WBC only 2, two years after transplant? I met a man with light chain deposition disease when I was getting stem cell collection. He was in the next bed getting collection too, but was not ready to go to transplant yet. I learned it is a rare disease and not well understood. I hope science makes a breakthrough on these diseases soon.
Yes, I hope come spring my hair and energy will start returning. I would love to come up to Boston to see the cherry blossoms, for something other than a hospital visit!
I feel very wiped out from battling this disease non-stop for a year (along with a broken femur from a plasmacytoma). Thank God for my husband. He is here as my caretaker. Sometimes I don't think I could go on if not for him. I am amazed by what the human body can endure. Now if it can just heal itself!
On January 30th my counts were:
WBC 2.5
RBC 2.54
Hgb / Hct 8.5 / 23.4
Neutrophils 73.0
Platelets 14
After a bag of platelets, my platelet count came up to 42 and the doc said I could take the next day "off" as the platelets would hold for a few days, but I must report to clinic on Sunday, February 1st for blood labs and any needed transfusions.
The doctor said I have a "delayed" response to transplant. She said to think of the stem cell as the seed and the bone marrow as the soil. The soil is not-so-good, so it is going to take longer for the stem cells to "seed" and produce blood cells. The bone marrow has amyloidosis and has had heavy pretreatment with chemo. I achieved partial response with 20 to 30% on bone marrow biopsy prior to SCT.
I asked the doctor if this means my chance for remission is low, but she said no, the time to transplant response is not related to remission response. I hope this is so. Anyhow, I will be close by the hospital in the apartment for at least two weeks. I will have to be patient.
Cathy, why is your WBC only 2, two years after transplant? I met a man with light chain deposition disease when I was getting stem cell collection. He was in the next bed getting collection too, but was not ready to go to transplant yet. I learned it is a rare disease and not well understood. I hope science makes a breakthrough on these diseases soon.
Yes, I hope come spring my hair and energy will start returning. I would love to come up to Boston to see the cherry blossoms, for something other than a hospital visit!
I feel very wiped out from battling this disease non-stop for a year (along with a broken femur from a plasmacytoma). Thank God for my husband. He is here as my caretaker. Sometimes I don't think I could go on if not for him. I am amazed by what the human body can endure. Now if it can just heal itself!
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous stem cell transplant failure?
Cathy I meant to tell you that my amyloidosis has affected my heart and muscle / nerve tissue and also GI tract somewhat, but has not affected my kidneys.
I also have too many light chains from the amyloidosis and that is what hardens up the organs and tissues.
The light chain disease is different, but I'm not sure how.
Like you, the man I met with light chain disease also had kidney damage from the disease. Boston Medical Center is pioneering research on all forms of amyloidosis and probably light chain disease, too, You might want to check out their website.
I did have a 3-day evaluation there last summer.
Good luck and God bless.
I also have too many light chains from the amyloidosis and that is what hardens up the organs and tissues.
The light chain disease is different, but I'm not sure how.
Like you, the man I met with light chain disease also had kidney damage from the disease. Boston Medical Center is pioneering research on all forms of amyloidosis and probably light chain disease, too, You might want to check out their website.
I did have a 3-day evaluation there last summer.
Good luck and God bless.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous stem cell transplant failure?
Hi Melissa.
I am not sure if the chemo and the SCT permanently damaged my bone marrow, but my WBC has only gone above 2.3 one time in over 2 years. Just a week or two ago when I went to kidney doctor, it was 4.3! My kidneys were down to 20% function and the kidney biopsy indicated 75% permanent scaring, but now my kidney function is up to 40%! I am amazed how the body can heal!
I have to tell you that part of my healing is because I am following a very low carbohydrate diabetic type diet. My oncologist suggested that to help prolong remission. A nice woman on this site graphed my cancer markers (kappa free light chains) over the last 2 years – she posted it on the ketogenic diet page – and it is dramatic. I eat only 20 g carbs (12 g net carbs) per day as well as 125 g fat and 55 g protein per day. It is hard, but it has given me a way to fight the cancer besides just taking chemo drugs.
Amyloidosis affects different organs than the light chain deposition disease, but I think of them as similar - because we both have cancer #1. But the unfortunate situation you and I have is that, if our cancer progresses, the light chains are more damaging on our organs than for those who "just" have multiple myeloma.
I know what you mean about Thanking God for your husband. I never appreciated my husband so much in 35 years of marriage as during this difficult time. During the actual transplant, he left our small business for 31/2 weeks and rented an apartment near the hospital so he could visit me much of each day that I was in there.
After the transplant, when I was bald or had weird wispy hair coming in, he would tell me I was beautiful. What a blessing!
Cathy
I am not sure if the chemo and the SCT permanently damaged my bone marrow, but my WBC has only gone above 2.3 one time in over 2 years. Just a week or two ago when I went to kidney doctor, it was 4.3! My kidneys were down to 20% function and the kidney biopsy indicated 75% permanent scaring, but now my kidney function is up to 40%! I am amazed how the body can heal!
I have to tell you that part of my healing is because I am following a very low carbohydrate diabetic type diet. My oncologist suggested that to help prolong remission. A nice woman on this site graphed my cancer markers (kappa free light chains) over the last 2 years – she posted it on the ketogenic diet page – and it is dramatic. I eat only 20 g carbs (12 g net carbs) per day as well as 125 g fat and 55 g protein per day. It is hard, but it has given me a way to fight the cancer besides just taking chemo drugs.
Amyloidosis affects different organs than the light chain deposition disease, but I think of them as similar - because we both have cancer #1. But the unfortunate situation you and I have is that, if our cancer progresses, the light chains are more damaging on our organs than for those who "just" have multiple myeloma.
I know what you mean about Thanking God for your husband. I never appreciated my husband so much in 35 years of marriage as during this difficult time. During the actual transplant, he left our small business for 31/2 weeks and rented an apartment near the hospital so he could visit me much of each day that I was in there.
After the transplant, when I was bald or had weird wispy hair coming in, he would tell me I was beautiful
. What a blessing!Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Autologous stem cell transplant failure?
Hi again,
Yesterday at the clinic, which was Day +23, my counts dropped again, so I am discouraged.
WBC 1.6
RBC. 2.3
Hgb/Hct. 8.2/23.3
Neut: 38
Platelets: 32
ANC: In the 600's
I did not need any transfusions, but I don't understand why the white counts would drop so much (more than 1.0). Maybe because Neupogen is discontinued. I really dislike the drug because of the pain it causes, so I certainly don't want to go back on it. I doubt one can live on Neupogen anyhow.
Platelets are dropping again, and red blood cells dropping a bit, too.
Anyhow, I am confused because I thought things were on the up and up, and now they are not.
I go back to clinic tomorrow, so I'll find out more then.
Cathy, like you, maybe treatment has been too much on the bone marrow. Did you need lots of transfusions after the transplant, and did your counts go up and down and not very good?
If not transplant failure, is there such a thing as bone marrow failure?
I guess time will tell if I recover.
Yesterday at the clinic, which was Day +23, my counts dropped again, so I am discouraged.
WBC 1.6
RBC. 2.3
Hgb/Hct. 8.2/23.3
Neut: 38
Platelets: 32
ANC: In the 600's
I did not need any transfusions, but I don't understand why the white counts would drop so much (more than 1.0). Maybe because Neupogen is discontinued. I really dislike the drug because of the pain it causes, so I certainly don't want to go back on it. I doubt one can live on Neupogen anyhow.
Platelets are dropping again, and red blood cells dropping a bit, too.
Anyhow, I am confused because I thought things were on the up and up, and now they are not.
I go back to clinic tomorrow, so I'll find out more then.
Cathy, like you, maybe treatment has been too much on the bone marrow. Did you need lots of transfusions after the transplant, and did your counts go up and down and not very good?
If not transplant failure, is there such a thing as bone marrow failure?
I guess time will tell if I recover.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
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