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Caroline T
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| Joined: | Sat Oct 17th, 2009 |
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Posted: Sun Oct 18th, 2009 05:44 am |
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I was diagnosed five years ago with ITP. I bleed and bruise easily. Two years ago I was diagnosed with Multiple Myeloma. I have not had to take any treatments until January of this year. I was on Thalidomid and Decadron for three months and then switched to Revlimid and Decadron until recently. They say I have a slow progressing Myeloma and it has responded to the treatments. I have been told by several doctors that I am a rare case because my platelets are not responding to any treatments and they can't figure that out . . Platelets are always between 20 and 50. They have been in the 30 to 45 range for the last couple months.
My question to anyone out there: Does anyone else have platelets this low with MM? If so what has been the treatment, if any, and have the platelets responded?
God bless all of you.
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Posted: Mon Oct 19th, 2009 11:32 pm |
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Hi Caroline,
We think that the first thing you need to know is if your bone marrow is simply not making any platelets or if your bone marrow is indeed making platelets but your body is destroying them faster than your bone marrow can make them. An aspirate and biopsy should tell you the answer to this.
In our opinion, if the case is that your body is destroying platelets and you see no improvement in platelet counts with treatment, it is usually an indication that your treatment is not very effective.
If your myeloma treatment is effective and you are brought into complete remission, you should see your platelets start to normalize.
Please let us know if you have any further questions.
Take care,
Chat Moderator
Huntsman Cancer Institute
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Caroline T
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Posted: Tue Oct 20th, 2009 01:50 am |
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The platelets are being made but are being destroyed. I have been to Cleveland Clinic Taussig Cancer Institute. It appears that I have a difficult, confusing, or rare case because of the platelets. No one can explain why the platelets won't respond. Stem cell transplant seems to be the next step, however, my doctor here at home thinks that I should just have my stem cells harvested for now for a later date because the MM has not gotten worse at this time. The Cleveland doctors have stated that the transplant may be more effective if done sooner than later. I don't want to wait until it is the last resort and not have any options left. I know at this point I am really frustrated. I try to be very involved with every step of my treatments and decisions being made but it is getting to the point where I feel like I've lost control of it all.
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Chat Moderator
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Posted: Wed Oct 21st, 2009 10:10 pm |
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Hi Caroline,
In general, there would not seem to be an advantage to you waiting. It seems like what the Cleveland doctors are saying makes sense and you should go ahead and move forward sooner to get the best results. But, of course, we don't know all the details of your case and have not reviewed your medical history, so maybe there is a reason your other doctor wants to wait.
Chat Moderator
Huntsman Cancer Institute Myeloma Clinic
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Caroline T
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Posted: Thu Oct 22nd, 2009 02:36 am |
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| Thank you. I am so grateful I found this support group. It has enabled me to find answers and make some decisions. I received results from Cleveland and feel transplant is my best option. Wish me luck. Again, I am so glad I found this group. You all have been an inspiration to me. God Bless You.
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Chat Moderator
Administrator
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Posted: Thu Oct 22nd, 2009 09:31 pm |
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| Best of luck to you, and keep us all updated on how you are doing!
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