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  #1  
Old Thu Dec 13, 2012, 01:00 AM
Ann C Ann C is offline
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Join Date: Nov 2012
Location: Kingsville, Ontario
Posts: 14
I appreciate this forum.

A year ago I had never heard of MDS. Now I read daily about it. This forum is very helpful to me in learning about the daily experiences of MDS patients and those who support them.

I wonder a lot about B.M.Transplants in my husband's future. So far the medical attention in Canada has been very good. As well, the government health plans seem to be very good.
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Ann, wife of David age 74, dx RAEB-1 in April 2012, cytogenetics - good (no detected mutations), 6% blasts in bone marrow, hemoglobin - 12.1 WBC - 1.7; platelet count - 98; ANC - 0.5, watch and wait diagnosis
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  #2  
Old Thu Dec 13, 2012, 09:05 AM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
BMT

Hi Ann,
You know in states like Canada and Sweden (where I live) they often have a cut off for age for BMT in MDS patients. Ask your husband's doctor.
Kind regards
Birgitta-A
Too old for BMT in Sweden at dx when I was 67. I am very afraid of adverse effects of all kinds of treatment and should not have accepted a BMT if I had been offered that treatment.
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  #3  
Old Thu Dec 13, 2012, 08:19 PM
Ann C Ann C is offline
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Join Date: Nov 2012
Location: Kingsville, Ontario
Posts: 14
Thanks for your response to my post Birgitta-A. It is so nice to connect with someone. Any advice is much appreciated. I hope that you are doing well.

I really don't know how to navigate this forum, but will express a few thoughts here.

I do not know if my husband will be offered the opportunity to have a BMT. In Canada, I believe that the recipient has to be intermediate or high risk MDS. I believe that we will get a more information on this possibility in Jan. 2013.

I tend to think that any treatment - chemo or BMT, will have many risks and adverse side effects, in addition to any benefits.
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Ann, wife of David age 74, dx RAEB-1 in April 2012, cytogenetics - good (no detected mutations), 6% blasts in bone marrow, hemoglobin - 12.1 WBC - 1.7; platelet count - 98; ANC - 0.5, watch and wait diagnosis
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  #4  
Old Sat Dec 15, 2012, 03:36 PM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
MDS

Hi Ann,
You know I got my dx 2006 and still feel fine though I have needed much supportive treatment during these years like transfusions, injections for low white blood cells and drugs for iron overload due to 142 units of blood. Since 2010 I have been treated with Thalodomide + Prednisone with positive effect.

Your husband has aa very low white blood cell count. The most important of the white blood cells are the neutrophils (ANC) - when ANC is less than 1.5 he has to look out for infections that will decrease all counts.

Hope your husband is feeling OK!
Kind regards
Birgitta-A
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  #5  
Old Tue Dec 18, 2012, 09:49 AM
lfeinsmith lfeinsmith is offline
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Join Date: Oct 2007
Posts: 29
thalidomide

Quote:
Originally Posted by Birgitta-A View Post
Hi Ann,
You know I got my dx 2006 and still feel fine though I have needed much supportive treatment during these years like transfusions, injections for low white blood cells and drugs for iron overload due to 142 units of blood. Since 2010 I have been treated with Thalodomide + Prednisone with positive effect.

Your husband has aa very low white blood cell count. The most important of the white blood cells are the neutrophils (ANC) - when ANC is less than 1.5 he has to look out for infections that will decrease all counts.

Hope your husband is feeling OK!
Kind regards
Birgitta-A
hi
i was curious about the use of thalidamide .Did your bone marrow show fibosis
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  #6  
Old Tue Dec 18, 2012, 02:20 PM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Bone marrow fibrosis

Hi Leslie,
My bone marrow showed very severe fibrosis at dx 2006 - in fact my dx changed from MDS to Myelofibrosis due to this finding in the BMB. One year later I got neutropenic fever after 3 infections and my dx has been MDS since 2007.

In Europe Vidaza is only approved for high risk MDS so we don't have many drugs for low risk MDS - I have MDS Interm-1.

You asked me about drugs for low platelets. Perhaps you want to know the latest results for Promacta/eltrombopag? Here is a small study from Italy from ASH: https://ash.confex.com/ash/2012/webp...aper51021.html.

The other drug for low platelets, Nplate (that has showed positive results for Kirby Stone), has given increased blast cells in several studies and is not recommended for MDS patients.
Kind regards
Birgitta-A
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  #7  
Old Mon Dec 24, 2012, 05:57 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 792
I agree - this forum is wonderful!

I am interested in this conversation because although I have pancytopenia my major problem is low white cells (1.3) with Neutrophils 0.5, Lymphocytes 0.5. My specialist told me that the treatment to increase white cells can also increase blasts.

What is your opinion/experience, Birgitta? Thanks.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #8  
Old Tue Dec 30, 2014, 01:13 AM
Susan Susan is offline
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Join Date: Aug 2006
Location: Chicago, Il
Posts: 83
This is an old post but in researching this question it appears there are studies that support both causation and no causation. The no causation study mentioned this is based on newer research and retrospective studies. I think it is still unknown for sure though.

However when the ANC is very low, particularly <200 or even 300 or less we have to look at risk vs benefit. We have to protect ourselves from a life threatening infection now. Whichever med will work for us to raise the ANC has to be taken in my view.

If the ANC goes to a safe zone I don't see why the med can't be stopped for a short time while getting frequent CBCs to catch any fall. -Unless going on and off the med does greater harm than staying on it.

My ANC just went from 200 to 900 and I opted to decline another Neupogen shot but will recheck count in 1 week. Since Promacta reportedly has a side effect of possible clots and I have PNH (high clot risk) that would be my last choice med. Each case is different.
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AA/PNH Dx 1998, mod plts, new ANC crash & blasts 4.4. Searching for new additional Dx. 1 clot 2013. Prednisone 2001 to 2009, Neupogen, Warfarin, Soliris
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