MDS - A nightmare arriving my home

[paulaespada]

Hello!

I'm Paula and I'm from Azores, Portugal.

First of all let me tell you how much grateful I am for having the opportunity of entering this forum.


As you might know I'm dealing with a distress situation.


My husband started to present as very tired. As I'm a nurse I found that strange and made him have a RBC account. A macrocitic anemia appeared. It was in last December 4th. A pancitopenia was revealed.


To resume since that he went in some test, even 3 myelograms. The last one revealed 19 % sideroblasts some of them (rare) in ring. Blasts - 0.3 %

Last hemogram outcome:

RBC - 2.77

Hemoglobin - 10.6

Hematocrit - 29.8

Medium globular volume - 107.6

WBC - 3.51

Neutrohiles - 26.8

Linfocits - 61.5

Platelets - 67


We were told that Jorge (my husband name) has a myielo displasy – aand needs a bone marrow transplant. He has no siblings… And he is 44 years old.


But he was not medicated. We're waiting for genetic study and bone biopsy.

And since he was diagnosed in Lisbon we must return home and now we're waiting for the haematologist consultation here.

I've been searching in the web for this condition and what I find is not nice.


I would like to know is there are some advances or researches going on that can help him. And what are the odds of finding a bone marrow donor to him. I though about become pregnant (I'm 43 and have discoid lupus) so staminal cells could be used. Jorge had a vasectomy 4 years ago but as long I know with my Gynecologist it's possible to access and become pregnant by in vitro fertilization. Do you think is this an option?


I asked it here and doctor say "oh no, he will be in the receptors list". They tell is as the most natural thing in this world. In my country doctors don't speak too much with patients even if it's a nurse…


Here in Portugal he'd be in a bone marrow bank that is world wide linked.


I'd be very grateful for any information you can provide.



Sincerely,

Paula

[Ruth Cuadra]

Hello, Paula.

Welcome to Marrowforums. You must have been very shocked to learn that Jorge has MDS. The doctors in the Azores have probably not seen many cases of MDS, but it is important to try to find a doctor who has experience with MDS. An experienced MDS doctor could treat Jorge or work with your local doctor.

We don't read Portuguese, but we looked for the treatment centers or organizations that you might talk to. We suggest that you contact these groups, if you haven't already talked to them:

Hospital de Santa Maria
http://www.hsm.min-saude.pt/
Avenida Professor Egas Moniz
1649-035 Lisbon Portugal
email: contactcenter@hsm.min-saude.pt

Organizacio Portuguesa de Transplatacio
http://www.opt.min-saude.pt
Av. da República,
1069-032 Lisbon, Portugal
Phone: +351 21 792 55 95
Fax: +351 21 797 61 00

Centro de Histocompatibilidade do Sul
http://www.chsul.pt/
Campo de Santana 130
P-1000 Lisbon, Portugal
Phone: +351-21-882-3530
Fax: +351-21-885-0118

At Centro de Histocompatibilidade do Sul you can ask about the Portuguese Bone Marrow Donors Registry (Centro Nacional de Dadores de Células de Medula Óssea, or CEDACE) run by the Portuguese Ministry of Health.

You can find other transplant centers in Portugal on this European Transplant Coordinators Organization (ETCO) page:
http://www.etco.org/transplant_centers_in_europe.htm#p

The possibility of conceiving a child whose stem cells might be a match for Jorge is remote since a child will usually match at most half of one parent's genes. It is much more likely that Jorge will find a donor through one of the many registries available worldwide.

However, there are several drug treatments for MDS that patients can try before resorting to a transplant. You can research Revlimid, Vidaza, and Dacogen on the Internet and read about patient experiences in our forums. Before you consider a transplant, it is important to ask the doctors about treating Jorge with one of these drugs.

Please feel free to post your questions here. There are a lot of people with MDS experience at Marrowforums who are very willing to help.

Regards,
Ruth Cuadra

[Tom M]

Hi Paula - Ruth has given you some wonderful information. One of the most important things you can do is to learn as much as you can about this disease and become your own advocate.

There are also treatments available that have helped many people with this disease. I was diagnosed in 2006 and have tried a couple different treatments. A drug called revlimid was finally the one that has worked for me. I went from weekly transfusions to becoming transfusion free for 10 months now.

I know this news is frightening, but it is not the end. You will find that your life changes and you find yourself taking each day, one at a time. You also find yourself appreciating those things you once took for granted. It is important to keep a positive attitude and gather your support group around you. I found great comfort in my faith and my family.

I will keep your husband, and you, in my prayers. Tell him to keep his chin up.

Tom

[paulaespada]

Hello

Thank you Ruth and Tom for your messages.

Ruth, my husband started to be studied in Hospital de Santa Maria in Lisbon, one of these you put here.
We must return home but we will go there whenever is needed.

When we return to Azores there were two lab outcomes missing: bone biopsy and genetic studies. I was astonished when doctor called from Lisbon yesterday to tell that everything is fine in these exams so it looks like it's not MDS. My husband must return in 5 months to have all exams again.

Now I wonder what might be the problem with him. That doctor even sent a message to doctors here saying that Jorge has MDS and due to his age he needs bone marrow transplant. I'm quite confused...

Meanwhile he is not medicated, eats well and I just wonder what might be happen to my husband.

Tom your words were perfect to me.
I have lupus myself and I've been learning to live one day at a time.
Thank you for your prayers.

Wishing all the best for you two and everybody here.

[paulaespada]

Hello



Ruth, my husband started to be studied in Hospital de Santa Maria in Lisbon.
We must return home but we will go there whenever is needed.

When we return to Azores there were two lab outcomes missing: bone biopsy and genetic studies. I was astonished when doctor called from Lisbon yesterday to tell that everything is fine in these exams so it looks like it's not MDS. My husband must return in 5 months to have all exams again.

Now I wonder what might be the problem with him. That doctor even sent a message to doctors here saying that Jorge has MDS and due to his age he needs bone marrow transplant. I'm quite confused...

Meanwhile he is not medicated, eats well and I just wonder what might be happen to my husband. He is tired; that's the only problem so far.

Has everyone here passed or beeing passing by the same experience?

[triumphe64]

I have Pure Red Cell Aplasia (PRCA). It is "not very common." When I first got sick, they were suspecting MDS. The first two bone marrow biopsies were considered bad samples. The third was sent to the local medical school, where PRCA was found.

Maybe they should look for that or something else.

[Birgitta-A]

Hi Paula,
You wrote that Jorge was tired and had HGB 10.6, sideroblasts 19 %, blast cells 0.3 %, WBC 3.51 and platelets 67. Now the bone marrow and genetic examinations are OK , which is very good. Still I think you should continue to try to get a diagnosis or at least not wait 5 months for new blood tests.
Kind regards
Birgitta-A
68 yo, MDS dx May - June 2006, Myelofibrosis dx July 2006 - Aug 2007, MDS Interm-1 dx since Aug 2007, transfusion dependent, Desferal 4 days with transfusions every 6th week, Neupogen 2 injections/week, asymptomatic

[paulaespada]

Hello!

I'm grateful for your answers.
My husband will go on in consultation with local Haematologits here in our home town hospital. He'll have the first one on April 2nd.
I'll keep you posted.

Thank you very much!