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Old Thu Jun 27, 2013, 12:05 PM
Rita du Rand Rita du Rand is offline
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Join Date: Feb 2013
Location: Durban, KwaZulu Natal, South Africa
Posts: 1
Recently diagnosed with 'Hypoplastic MDS'

Hallo Everyone. I am so glad I found Marrowforums!

My name is Rita and next month I will be 57 years old. This is my first time to post, although I have been lingering here in the past, not knowing yet precisely what my diagnosis was.

Although I am a South African, we have been staying in the Netherlands for the past five years - and loving it!

Two weeks ago, after numerous blood tests and two bone marrow biopsies (since the beginning of February 2013), my diagnosis has been confirmed as 'Hypoplastic MDS'. Until now, I have been receiving supportive care - regular blood tests and doctor appointments, and transfusions whenever necessary.

My blood counts this past Tuesday were: hemoglobin 5.6 mmo1/L (range 7.5-10.0), thrombo's 6 x10e9/L (range 150-400), leuco's 2.3 x10e9/L (range 4-10), and neutro's 0.48 x10e9/L (range 1.50-7.50). I had a platelets transfusion again, the same day - and I will receive 3 units of red blood cells tomorrow. The haemotologist urged me to start with Immune Suppressive Therapy as soon as possible - in the form of 'Cyclosporine' tablets, together with 2 kinds of antibiotics as my white blood cells are so low.

I have read up on Cyclosporine before, and I am very scared of all the possible side effects. I have always been a believer in my body's own ability to heal itself, if given the correct internal and external environment if possible. Fortunately, up until last year, my health was fine. During last year, though, I fell ill with upper respiratory infections more often; became more and more tired; and bruised easily. I never thought all three problems could be related, and presented with only the infection, whenever I went to see my GP.

It was during a routine medical examination and blood test, in the beginning of the year, that we discovered all 3 my blood counts were low - and then the process I have described above, followed.

I am sorry for this long post, but wanted to share my story. I really am so confused and scared about what to do. I do believe in medicine and have a lot of respect for the medical profession, it's just that I am so afraid that this medication might cause other (worse) problems in the future.

My sister and I have also both been tested, and she is not a match - that means we will have to look for an unrelated donor if a stem cell transplant is needed. And I know, that I will then also need to take the Cyclosporine to prevent my body from rejecting the donor cells.

I know that this decision is only my own to make, but does anyone have any advice for me? I don't want to be selfish and only think of my own concerns - I want to do what is best for my family and loved ones who are also affected by me having this disease and by my treatment. And also, very important to me, I want to make a decision that will honor my faith in God.

Regards,
Rita
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Old Thu Jun 27, 2013, 04:37 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 715
Hi Rita,

Make sure you are seeing someone who has expertise in hypoplastic MDS and AA. Don't be afraid to ask your doctor how many patients they have treated previously. Has your doctor run a battery of tests on you to rule out other things that mimic (or cause) bone marrow failure disease?

If your doctor is mentioning cyclosporine, I would also discuss with him the potential of doing ATG in combination. Together they have a much more favorable outcome then cyclosporine alone. Time is of the essence in starting treatment, as left unchecked, further damage could be done to your stem cells as the disease progresses.

I can understand the desire to try and let the body fight things naturally. However, if you have progressed to the point where you need transfusions, it is a sign that the body is not able to handle the fight alone. It is losing the war that is raging inside. Most people do not have negative reactions to cyclosporine, especially if given in proper dosage based on your body weight.

The sooner that you start treatment, the sooner you can stop the attack on your marrow and allow it to recover. Do not delay!
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.

Last edited by Hopeful : Thu Jun 27, 2013 at 06:17 PM.
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Old Thu Jun 27, 2013, 08:54 PM
tytd tytd is offline
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Join Date: Jul 2009
Location: Southeast, USA
Posts: 132
Hello Rita,
As Hopeful said, I would strongly recommend getting an opinion from an MDS expert,( if you are not already). If you go to the MDS foundation website they have a list of MDS Centers of Excellence in many countries. The Netherlands has 2 listed, one in Amsterdam. Also are you in the high risk or low risk category by IPSS score? Did you have excess blasts or cytogenetic abnormalites? If you are low risk, Dr Fenaux in Paris has written a recent good review article on how he treats MDS in the May 23rd issue of "Blood". Birgitta has left a link to this article in one of her recent postings. He mentions using ATG with or without cyclosporine but there are certain characteristics which he lists which might predict a better response to ATG or immunosuppressive therapy such as hypocellularity, younger age, positive HLADR15 genotype, etc. Have you been checked for that genotype? I wish you well. It is a difficult decision so you need all the knowledge about options that you can get. Tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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