Hi melpen,
I had a "delayed response" to the transplant also. In my case, I got an e coli infection at Day +8, and that apparently delayed the engraftment. I was in the hospital for about a month before my counts came up enough for me to be discharged.
That's the bad news. The good news is that that was independent of my myeloma response. With 2 cycles of RVD (Revlimid, Velcade, dexamethasone) consolidation therapy after the transplant and then Revlimid maintenance, I went to a stringent complete response (sCR) and was minimal residual disease (MRD) negative in July 2014.
Also, the early blood counts do tend to bounce around some, so don't get discouraged.
Hang in there!
Mike
Forums
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Autologous stem cell transplant failure?
Dear Melissa,
I can imagine how scary it feels, but remember that Dr Landau said: "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"
I did need infusions, and I went to ICU because I had host versus graft with my own cells (!), but what is more important for you is that I remember being told that the stem cells "want" to get back into the bone marrow and regrow in the bones. It takes some time for them to get there - I had actually heard it can take up to 2 weeks.
I never heard that someone could have good "soil" of good bones - it seems that the stem cells themselves grow and produce the white blood cells and platelets.
I think the reason spring smells and colors were so sweet was because, for me, the transplant seemed like a near death experience. I was, like you, in fearing that I would not live through it.
You are in good hands -- try to rest and find ways not to think about your bone marrow?
Here are a couple of quotes that helped me not worry as much:
Worry does not empty tomorrow of its sorrow, it empties today of its strength.”
Worry is a cycle of inefficient thoughts whirling around a center of fear.”
Another was to just tell yourself :Yes, I can stop thinking about it"
I will say a prayer for you right now.
Cathy
I can imagine how scary it feels, but remember that Dr Landau said: "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"
I did need infusions, and I went to ICU because I had host versus graft with my own cells (!), but what is more important for you is that I remember being told that the stem cells "want" to get back into the bone marrow and regrow in the bones. It takes some time for them to get there - I had actually heard it can take up to 2 weeks.
I never heard that someone could have good "soil" of good bones - it seems that the stem cells themselves grow and produce the white blood cells and platelets.
I think the reason spring smells and colors were so sweet was because, for me, the transplant seemed like a near death experience. I was, like you, in fearing that I would not live through it.
You are in good hands -- try to rest and find ways not to think about your bone marrow?
Here are a couple of quotes that helped me not worry as much:
Worry does not empty tomorrow of its sorrow, it empties today of its strength.”
Worry is a cycle of inefficient thoughts whirling around a center of fear.”
Another was to just tell yourself :Yes, I can stop thinking about it"
I will say a prayer for you right now.
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?
Hey Melissa, I just looked up my numbers; 23 days after transplant, my WBC was 1.87.
It actually has bounced around a lot - here are some numbers over the last 2 years, roughly every 4-6 weeks. (Revlimid pushes numbers down). I feel good even if the numbers aren't great.
WBC ANC
1.87 ---- Dec 11, 2012 - 23 days after SCT
4.08 2852 Then started Revlimid 5 mg eod
2.85 1736
2.21 1264
3.57 1792
2.48 1094
2.19 1014
2.45 1460
3.29 1806
2.79 1133
3.10 1559
2.02 1378 June 2014
2.44 1005
3.11 1586
3.36 1385
3.82 1910
3.00 1290
2.93 1520
4.30 1935 2 weeks ago
WBC = White blood cell count; ANC = Absolute neutrophil count
Hope this helps, Melissa - you can see it sometimes would drop a LOT in 4-6 weeks
Cathy
It actually has bounced around a lot - here are some numbers over the last 2 years, roughly every 4-6 weeks. (Revlimid pushes numbers down). I feel good even if the numbers aren't great.
WBC ANC
1.87 ---- Dec 11, 2012 - 23 days after SCT
4.08 2852 Then started Revlimid 5 mg eod
2.85 1736
2.21 1264
3.57 1792
2.48 1094
2.19 1014
2.45 1460
3.29 1806
2.79 1133
3.10 1559
2.02 1378 June 2014
2.44 1005
3.11 1586
3.36 1385
3.82 1910
3.00 1290
2.93 1520
4.30 1935 2 weeks ago
WBC = White blood cell count; ANC = Absolute neutrophil count
Hope this helps, Melissa - you can see it sometimes would drop a LOT in 4-6 weeks
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?
Very bad WiFi hotspot at the apartment, so hard to get on to post. Today being a weekend, the WiFi is receptive.
Yes, Cathy, I see how your WBC counts drop from the Revlimid, then recover when you go off the Revlimid for a week or two. Glad you feel good. That is SO important.
I am still suffering major fatigue, bone pain, and neuropathy. I do not feel good. Feel much worse than when I went in for the SCT.
Friday I was 28+ days post auto transplant:
WBC 2.2
Neutrophils 36
ANC 792
Platelets 22 (so I got a transfusion of platelets)
RBC 2.32
Hgb / Hct 7.9 / 21.6 (so I got a transfusion of red blood cells)
No sign of going home with counts so low. Doc said she will do another bone marrow biopsy Day +60. I go back across street to hospital on Monday for blood labs again.
My husband and I had high hopes for the SCT. I understand 1 to 5% don’t survive a SCT, but this is usually due to infections that come about, or an allogeneic rejection. Never ran one fever or infection. I never considered stem cell engraftment failure for an auto in that percentage.
Yes, Cathy, I see how your WBC counts drop from the Revlimid, then recover when you go off the Revlimid for a week or two. Glad you feel good. That is SO important.
I am still suffering major fatigue, bone pain, and neuropathy. I do not feel good. Feel much worse than when I went in for the SCT.
Friday I was 28+ days post auto transplant:
WBC 2.2
Neutrophils 36
ANC 792
Platelets 22 (so I got a transfusion of platelets)
RBC 2.32
Hgb / Hct 7.9 / 21.6 (so I got a transfusion of red blood cells)
No sign of going home with counts so low. Doc said she will do another bone marrow biopsy Day +60. I go back across street to hospital on Monday for blood labs again.
My husband and I had high hopes for the SCT. I understand 1 to 5% don’t survive a SCT, but this is usually due to infections that come about, or an allogeneic rejection. Never ran one fever or infection. I never considered stem cell engraftment failure for an auto in that percentage.
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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.
You will feel bad for a while and then you should start feeling better. How much melphalan was your dose? Do you know? They were going to give me 200 (whatever unit), but my liver started acting up, so they backed it down to 140. But, when you are going in to this, you have no idea what the options or risks are.
Maybe I am a pessimist, but I honestly didn't know that I would live through it and I thought the good times of my life were over when I was diagnosed. But, my life is good, Melissa. Hang in there and don't get depressed.
Are you in a warm part of the country? If you could sit outside for 5-10 minutes, I bet that would feel good. Another thing I do when time is heavy is read books.
Right now there is nothing you can do but wait and hope and pray (maybe in opposite order).
Thank you for writing back. I didn't get to computer because I was sick this week and was sleeping much of each day - but that is unusual for me now.
Best Wishes Cathy
You will feel bad for a while and then you should start feeling better. How much melphalan was your dose? Do you know? They were going to give me 200 (whatever unit), but my liver started acting up, so they backed it down to 140. But, when you are going in to this, you have no idea what the options or risks are.
Maybe I am a pessimist, but I honestly didn't know that I would live through it and I thought the good times of my life were over when I was diagnosed. But, my life is good, Melissa. Hang in there and don't get depressed.
Are you in a warm part of the country? If you could sit outside for 5-10 minutes, I bet that would feel good. Another thing I do when time is heavy is read books.
Right now there is nothing you can do but wait and hope and pray (maybe in opposite order).
Thank you for writing back. I didn't get to computer because I was sick this week and was sleeping much of each day - but that is unusual for me now.
Best Wishes 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 Cathy
I am not sure what dose of melphalan was given.
Unfortunately, no, I don't live in a warm part of the country. I am in Boston and they are having a terrible winter this year. Record snowfall. Today, the sun is out for the first time in two weeks, but it is bitter cold. No sitting outside here! But God Bless Boston - the people keep-on, keeping-on, and the hospital keeps staffed and moving, even with the subways down and blizzards going on. The staff can sleep in the hospital and do double-triple shifts and they juggle employees around so those who live nearby come to work and those who live beyond stay home. I still get excellent care and never feel rushed or denied. Boston Strong. Now if I can just be So Strong!
I was extremely discouraged a few days ago as my ANC was below 500 for four days in a row. They gave me a shot of Neupogen and that brought up neutrophils and WBC. For example, Day 31+ ANC was 280. Yesterday, Day 34+ ANC was 1,634. Much better, but I don't want to rely on Neupogen. I hate the drug. Causes much pain and definitely increases neuropathy even though they claim it doesn't.
I am still getting platelets and packed red cells since I am not making my own blood cells, but the transfusions are holding longer. If I can get to needing transfusions just once a week, I will be able to go home and we will travel to Boston once a week for blood labs and transfusions. No going home yet, though. They think with time the stem cells will make blood cells and my blood counts will get better.
The doc is going to do a bone marrow biopsy in one month at Day 60+, which is quite early, but said I am an "exception." I think they want to see how compromised the bone marrow is from the amyloidosis, chemo, and cancer, as this can hold up engraftment and the marrow's ability to make blood cells. Also, they want to see cancer counts to figure out maintenance strategy. I have a very aggressive myeloma. Have been symptomatic since 2008 and was not diagnosed until 2014, so no wonder I am an exception.
I do feel better and stronger each day, though, so now I am feeling hopeful. I am now able to walk across the street to the hospital with a cane rather than the wheel chair. Laundry is 8 floors up and I am able to walk up 4 flights of stairs and down 8 rather than take elevator. I try to stretch and do some exercises each day.
The doctor says I must be patient. So patience it is, I guess. Unfortunately, I am not a very patient person by nature. Right across the street is Children's Hospital and then Brigham and Women's beyond that. Helicopters airlift patients to the roof. Ambulances racing by in street below. Right in the heart of hospital district and, when I think of all the challenges people are facing in the hospitals nearby, it puts my disease in perspective. I can do this. I can be patient. I am not the only one suffering. Let there be light, love and healing - for all suffering with cancer and major health challenges. All those reading, do not give up!
I am not sure what dose of melphalan was given.
Unfortunately, no, I don't live in a warm part of the country. I am in Boston and they are having a terrible winter this year. Record snowfall. Today, the sun is out for the first time in two weeks, but it is bitter cold. No sitting outside here! But God Bless Boston - the people keep-on, keeping-on, and the hospital keeps staffed and moving, even with the subways down and blizzards going on. The staff can sleep in the hospital and do double-triple shifts and they juggle employees around so those who live nearby come to work and those who live beyond stay home. I still get excellent care and never feel rushed or denied. Boston Strong. Now if I can just be So Strong!
I was extremely discouraged a few days ago as my ANC was below 500 for four days in a row. They gave me a shot of Neupogen and that brought up neutrophils and WBC. For example, Day 31+ ANC was 280. Yesterday, Day 34+ ANC was 1,634. Much better, but I don't want to rely on Neupogen. I hate the drug. Causes much pain and definitely increases neuropathy even though they claim it doesn't.
I am still getting platelets and packed red cells since I am not making my own blood cells, but the transfusions are holding longer. If I can get to needing transfusions just once a week, I will be able to go home and we will travel to Boston once a week for blood labs and transfusions. No going home yet, though. They think with time the stem cells will make blood cells and my blood counts will get better.
The doc is going to do a bone marrow biopsy in one month at Day 60+, which is quite early, but said I am an "exception." I think they want to see how compromised the bone marrow is from the amyloidosis, chemo, and cancer, as this can hold up engraftment and the marrow's ability to make blood cells. Also, they want to see cancer counts to figure out maintenance strategy. I have a very aggressive myeloma. Have been symptomatic since 2008 and was not diagnosed until 2014, so no wonder I am an exception.
I do feel better and stronger each day, though, so now I am feeling hopeful. I am now able to walk across the street to the hospital with a cane rather than the wheel chair. Laundry is 8 floors up and I am able to walk up 4 flights of stairs and down 8 rather than take elevator. I try to stretch and do some exercises each day.
The doctor says I must be patient. So patience it is, I guess. Unfortunately, I am not a very patient person by nature. Right across the street is Children's Hospital and then Brigham and Women's beyond that. Helicopters airlift patients to the roof. Ambulances racing by in street below. Right in the heart of hospital district and, when I think of all the challenges people are facing in the hospitals nearby, it puts my disease in perspective. I can do this. I can be patient. I am not the only one suffering. Let there be light, love and healing - for all suffering with cancer and major health challenges. All those reading, do not give up!
-
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?
Wow, Melissa, I love your attitude.
It brings tears to my eyes and a lump to my throat. And, walking up 4 flights of stairs?! OK, you are a fighter, you are going to get well!
Neupogen shots were OK for a couple of days but it does make your bones ache and I can't imagine week after week of them - but how cool that your ANC was 1634!!! If your body could maintain that and produce enough so you could have weekly transfusions, that would feel like spring is coming.
I remember you said you were in Boston!
Hey, when they do this bone marrow biopsy, make them put you under
. You have had enough pain in the last 6 weeks to last a few years.
Love Cathy
Right in the heart of hospital district and when I think of all the challenges people are facing in the hospitals nearby, it puts my disease in perspective. I can do this. I can be patient. I am not the only one suffering. Let there be light, love and healing - for all suffering with cancer and major health challenges. All those reading, do not give up!
It brings tears to my eyes and a lump to my throat. And, walking up 4 flights of stairs?! OK, you are a fighter, you are going to get well!
Neupogen shots were OK for a couple of days but it does make your bones ache and I can't imagine week after week of them - but how cool that your ANC was 1634!!! If your body could maintain that and produce enough so you could have weekly transfusions, that would feel like spring is coming.
I remember you said you were in Boston!
Hey, when they do this bone marrow biopsy, make them put you under
. You have had enough pain in the last 6 weeks to last a few years. Love 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 Melissa,
Like Cathy said, I love your attitude too!
When my counts kept taking longer and longer to start to go up, they were talking about doing a bone marrow biopsy on me to see what was going on in there. That would have been at around Day +21. A BMB at that point was about the last thing I wanted to face. Luckily, my doctor said, "Let's give it one or two more days before doing a BMB and see if your counts start to go up on their own," and they did. Boy, was that a happy day!
Hang in there and it will get better! You ARE Strong, and you've got a lot of people rooting for you.
Mike
P.S. My son is in the process of moving from the Boston area to Washington, DC. So I've heard a lot about how rough this winter has been up your way. Today is not a good day to be outside up there!
Like Cathy said, I love your attitude too!
When my counts kept taking longer and longer to start to go up, they were talking about doing a bone marrow biopsy on me to see what was going on in there. That would have been at around Day +21. A BMB at that point was about the last thing I wanted to face. Luckily, my doctor said, "Let's give it one or two more days before doing a BMB and see if your counts start to go up on their own," and they did. Boy, was that a happy day!
Hang in there and it will get better! You ARE Strong, and you've got a lot of people rooting for you.
Mike
P.S. My son is in the process of moving from the Boston area to Washington, DC. So I've heard a lot about how rough this winter has been up your way. Today is not a good day to be outside up there!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Autologous stem cell transplant failure?
Thanks, Mike and Cathy, for your posts, concern, and positive feedback. I am FINALLY home! As Dorothy says, "There is no place like home." That is for sure!
I went into the hospital on January 5th for the autologous SCT, spent 4 weeks in the hospital, and then 3 weeks in the apartment near the hospital. This was 2 weeks longer than anticipated. Even though my counts are still low, it appears my stem cells have finally taken hold in the bone marrow and that I am making my own blood cells, as the counts are climbing on their own and no transfusions have been needed over the last 3 visits. So the docs cleared me to go home. I go back up to Boston this Tuesday for blood labs and to meet with docs, but it appears I am "out of the woods," so to say.
I believe I will be getting a BMB in about 30 days to see if the SCT was successful in bringing the plasma / protein counts down. Hopefully so. My doc is a wizard at doing BMB, so I don't fear the procedure under her hands. The last one she did, I barely felt anything, and didn't even realize when she was done. But I do understand why people fear the procedure, as I had one done elsewhere, under different hands, and it was extremely painful and the doc had to go in four times to get a good piece. I broke out in a sweat, felt nauseated, and thought I was going to black out. Ugh!
What I have noticed since SCT is that the peripheral neuropathy is worse than ever, but I have read that is not uncommon and may dissipate with time. However, there is something more concerning I have not experienced before: It is a whole-body pain. My joints, muscles; my whole body aches, especially when I move. It is comparable to the feeling you get when you have worked out extremely hard, have over-exerted muscles, and are sore all over the next day. However, I have not been "working out" in any heavy kind of way.
I am puzzled and getting worn down and discouraged by this body pain. I feel like I'm a 100-year-old woman! I felt much better before I went into SCT.
Did anyone else feel this way 7-weeks post-SCT? Does it ever go away? Could it be because my platelets, neutrophils and RBC are still low? Would that cause your whole body to ache?
I went into the hospital on January 5th for the autologous SCT, spent 4 weeks in the hospital, and then 3 weeks in the apartment near the hospital. This was 2 weeks longer than anticipated. Even though my counts are still low, it appears my stem cells have finally taken hold in the bone marrow and that I am making my own blood cells, as the counts are climbing on their own and no transfusions have been needed over the last 3 visits. So the docs cleared me to go home. I go back up to Boston this Tuesday for blood labs and to meet with docs, but it appears I am "out of the woods," so to say.
I believe I will be getting a BMB in about 30 days to see if the SCT was successful in bringing the plasma / protein counts down. Hopefully so. My doc is a wizard at doing BMB, so I don't fear the procedure under her hands. The last one she did, I barely felt anything, and didn't even realize when she was done. But I do understand why people fear the procedure, as I had one done elsewhere, under different hands, and it was extremely painful and the doc had to go in four times to get a good piece. I broke out in a sweat, felt nauseated, and thought I was going to black out. Ugh!
What I have noticed since SCT is that the peripheral neuropathy is worse than ever, but I have read that is not uncommon and may dissipate with time. However, there is something more concerning I have not experienced before: It is a whole-body pain. My joints, muscles; my whole body aches, especially when I move. It is comparable to the feeling you get when you have worked out extremely hard, have over-exerted muscles, and are sore all over the next day. However, I have not been "working out" in any heavy kind of way.
I am puzzled and getting worn down and discouraged by this body pain. I feel like I'm a 100-year-old woman! I felt much better before I went into SCT.
Did anyone else feel this way 7-weeks post-SCT? Does it ever go away? Could it be because my platelets, neutrophils and RBC are still low? Would that cause your whole body to ache?
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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?
I am so glad you are home Melissa!!!
I don't really know what would make you ache all over - your poor body could be trying to force you to lie down and rest up.
If you are low on magnesium or other electrolytes, that can sometimes make you ache and feel tired - magnesium, potassium, sodium & chloride.
Only time I had intense ache all over was when I had the shingles.
I did feel like I was 100 years old when I came home, but I think some of it was from being so weak. When I got home, I took 2 naps a day, but I also did the elastic bands for exercise – every day, and gradually gained my strength back.
Good luck.
Cathy
I don't really know what would make you ache all over - your poor body could be trying to force you to lie down and rest up.
If you are low on magnesium or other electrolytes, that can sometimes make you ache and feel tired - magnesium, potassium, sodium & chloride.
Only time I had intense ache all over was when I had the shingles.
I did feel like I was 100 years old when I came home, but I think some of it was from being so weak. When I got home, I took 2 naps a day, but I also did the elastic bands for exercise – every day, and gradually gained my strength back.
Good luck.
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
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