Good day all!
After Revlimid, Velcade, and dexamethasone (RVD) treatment and a stem cell transplant, I am supposed to have 4 more rounds of RVD and then maintenance Revlimid.
However, after the transplant in December, my platelet count went up to 50 and since has steadily declined. It went from 50 to 45, 40, and is now 31, preventing me from having the rest of my treatment. It is now May and I should have started treatment at least by March.
Has anyone out there had trouble with platelets? Any suggestions?
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Re: Low platelets - have you had them & what did you do?
At times my daughter has gotten platelet infusions. Discuss with your doctor.
Re: Low platelets - have you had them & what did you do?
I had a low platelet count several times after my stem cell transplant. Each time I would return to the hospital and have a transfusion that would return it to normal.
My oncologist thought it might be the thalidomide, so I was taken of it for a couple of months but my count still kept dropping to as low as 12 and it was always back to the hospital.
Eventually I had my spleen removed, and within a few weeks, my count was back to within normal range.
That was 9 months ago and I have not had any problems since.
My oncologist thought it might be the thalidomide, so I was taken of it for a couple of months but my count still kept dropping to as low as 12 and it was always back to the hospital.
Eventually I had my spleen removed, and within a few weeks, my count was back to within normal range.
That was 9 months ago and I have not had any problems since.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Low platelets - have you had them & what did you do?
Tori, Can you explain a little about what your spleen had to do with low platelet counts? I am intrigued.
Re: Low platelets - have you had them & what did you do?
Hi Mrozdav,
In my case it was a condition known as ITP [idiopathic thrombocytopenic purpura], which is quite common apparently. The success rate of the surgery is around 60%. If you Google ITP and spleen removal, it will give you all the information.
The surgery was pretty straightforward, around 2 hours, and I was sore afterwards. Recovery was about 6 weeks, but after the first week I was up and around fairly well.
Speak to your doctor as I would not want to give you any medical explanation that wasn't 100% correct, but if I can help with any other questions, I'm more than happy to.
Not sure where you live, I'm on the Gold Coast, Queensland, Australia.
Good luck and please let me know how things work out for you.
In my case it was a condition known as ITP [idiopathic thrombocytopenic purpura], which is quite common apparently. The success rate of the surgery is around 60%. If you Google ITP and spleen removal, it will give you all the information.
The surgery was pretty straightforward, around 2 hours, and I was sore afterwards. Recovery was about 6 weeks, but after the first week I was up and around fairly well.
Speak to your doctor as I would not want to give you any medical explanation that wasn't 100% correct, but if I can help with any other questions, I'm more than happy to.
Not sure where you live, I'm on the Gold Coast, Queensland, Australia.
Good luck and please let me know how things work out for you.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Low platelets - have you had them & what did you do?
Tori,
Thank you for responding. So far, I have not had problems with low platelet counts. Occasionally, the platelets dip somewhat, but not significantly. I was just interested in learning about the spleen and how it impacts on the platelets. I will do some reading about the spleen, an organ to which I have never given any thought. Your situation interested me; I am glad that a simple operation solved your serious problem.
I live in Washington, D.C. I have lots of family in Melbourne, Sydney, and Perth. I always love visiting Australia, a sister country.
Best of luck to you.
Thank you for responding. So far, I have not had problems with low platelet counts. Occasionally, the platelets dip somewhat, but not significantly. I was just interested in learning about the spleen and how it impacts on the platelets. I will do some reading about the spleen, an organ to which I have never given any thought. Your situation interested me; I am glad that a simple operation solved your serious problem.
I live in Washington, D.C. I have lots of family in Melbourne, Sydney, and Perth. I always love visiting Australia, a sister country.
Best of luck to you.
Re: Low platelets - have you had them & what did you do?
Sorry Mrozdav. My error was replying to Gf377. Must be my chemo brain!
But it is an interesting subject, I didn't have any symptoms but, while my count was down, it meant that if I needed any change to my chemo or wanted to go on a trial, it would have been out of the question. It also made me far more susceptible to viruses and blood loss.
But it is an interesting subject, I didn't have any symptoms but, while my count was down, it meant that if I needed any change to my chemo or wanted to go on a trial, it would have been out of the question. It also made me far more susceptible to viruses and blood loss.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Low platelets - have you had them & what did you do?
My platelets went down when I started Revliid maintenance. My doctor lowered the dose from 10 mg to 5 mg, which kept the platelet count at an acceptable level.
Now I'm on CyBorD – Cytoxan (clophosphamide), Velcade, and dexamethasone – and the Cytoxan knocked my platelet count down once again, so again my doctor reduced the dose of the Cytoxan, which seems to be working. My platelet count went back up almost to normal one week when I was off all drugs for a week fighting a cold, so the drugs can really impact platelets.
I'm not sure if there is anything else the doctor can do other than holding off treatment and / or doing platelet transfusions.
Good luck to you.
Now I'm on CyBorD – Cytoxan (clophosphamide), Velcade, and dexamethasone – and the Cytoxan knocked my platelet count down once again, so again my doctor reduced the dose of the Cytoxan, which seems to be working. My platelet count went back up almost to normal one week when I was off all drugs for a week fighting a cold, so the drugs can really impact platelets.
I'm not sure if there is anything else the doctor can do other than holding off treatment and / or doing platelet transfusions.
Good luck to you.
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Norm - Name: Norm
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Aug-2010
- Age at diagnosis: 59
Re: Low platelets - have you had them & what did you do?
Tori, please tell me how they found your spleen to be the culprit. Thank you
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RevMrKP
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