Have just seen my doctor today and have been told they want to remove my spleen.
I had my auto transplant in February. All was going o.k. until my white cell count started to drop. Have had numerous platelet transfusions which lift my levels for a week or two, then they drop back to very low again, around eleven.
Now my doctor has said the only option is to take my spleen out, as my body is producing platelets, but then they are being destroyed.
The operation has only a sixty per cent success rate, so I am not sure.
Would love to hear from any one who may have been through this
Forums
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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: Should I have my spleen taken out?
Hi Tori,
I have not been in this position, so I'm not too helpful in that way. But I would seek out a second and perhaps a third opinion from a doctor that has done hundreds of transplants. I don't know if you have access to that.
Are you in the U.S.? Hopefully there will be some way you can find out if there are other options before you make such a decision.
I wish you all the best.
Joy
I have not been in this position, so I'm not too helpful in that way. But I would seek out a second and perhaps a third opinion from a doctor that has done hundreds of transplants. I don't know if you have access to that.
Are you in the U.S.? Hopefully there will be some way you can find out if there are other options before you make such a decision.
I wish you all the best.
Joy
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Should I have my spleen taken out?
It is difficult to make definitive comments or recommendations on what to do next without a better picture of the clinical scenario.
It may have been presented as an option if other things did not work (or have not already) or does not recover spontaneously. I am assuming that you have had a repeat biopsy and did not see signs of MDS (myelodysplastic syndromes -- another bone marrow disorder) or other marrow issues. Specific medications can also cause drops in counts (again, I assume that this has been investigated).
Generally, there are other options prior to splenectomy if your doctor is calling this ITP (immune (or idiopathic) thrombocytopenic purpura), including
1) Steroids (prednisone or dex),
2) Rituximab to name a few.
Do you have a large spleen? How low are your platelets? Do you know if your platelets respond to transfusions at all -- meaning they go up, but then come back down. In ITP, they almost never respond at all. So, if they are responding, this suggests another etiology.
I would discuss it further with your doctor or, as stated, if all avenues have been examined and you remain unsure or unconvinced of the path, a second opinion is very reasonable.
It may have been presented as an option if other things did not work (or have not already) or does not recover spontaneously. I am assuming that you have had a repeat biopsy and did not see signs of MDS (myelodysplastic syndromes -- another bone marrow disorder) or other marrow issues. Specific medications can also cause drops in counts (again, I assume that this has been investigated).
Generally, there are other options prior to splenectomy if your doctor is calling this ITP (immune (or idiopathic) thrombocytopenic purpura), including
1) Steroids (prednisone or dex),
2) Rituximab to name a few.
Do you have a large spleen? How low are your platelets? Do you know if your platelets respond to transfusions at all -- meaning they go up, but then come back down. In ITP, they almost never respond at all. So, if they are responding, this suggests another etiology.
I would discuss it further with your doctor or, as stated, if all avenues have been examined and you remain unsure or unconvinced of the path, a second opinion is very reasonable.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
3 posts
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