MDS - Waiting for bone marrow donor and Toxoplasm

[paulaespada]

Hello!



At last we have a diagnosis to my husband - it is a myelodysplasic syndrome.

He is being referred to a bone marrow transplant. He has no siblings...

Now doctor told us to be careful because he can't have toxoplasm infection. Being so she counceled that he doesn't eat raw vegatables or green salads. Is there any other things me might do to avoid this infection?

I have hope a bone marrow will be found. Truly I'm hopeful.

What have been a nightamare now has a "name" and now I can focus my attention in helping my husband as much I can.

Paula

[liamabby]

Hope your husband doing well.My brother recently found out he had mds.I am his match found out in October but haven't been contacted since.Don't know if I have to get more tests done.My brother was given revlimid for a month but now taken off it ,We don't know to much about mds Doctors not very helpful.Brother trying to get hold of his blood speclist but can't seem to reach him .His family dr. took him off the revlimid .I think because his white blood count is low.He really scared about getting the bone marrow done
Did your husband get a match yet Betty

[Zoe's Life]

Paula,

Welcome to the forum. What type of MDS does your husband have? Does he have excess blasts? Sorry I don't know anything about toxoplasm infections. Someone here will though. Keep us posted.

Zoe

P.S. I am exhausted and have a stray dog in my house, so I am likely not making sense. Sorry.

[Birgitta-A]

Hi Paula,
I think your husband should avoid all kinds of infections - not only toxoplasmosis. Do you know his neutrophil count ?
Here is a link for patients with neutropenia:
http://www.nccn.org/patients/patient...duce_Your_Risk

Kind regards
Birgitta-A
69 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal, Neupogen 2 injections/week after four infections Aug-Sept 2007 with neutrophil count as low as 0.1

[paulaespada]

Originally Posted by liamabby

Hope your husband doing well.My brother recently found out he had mds.I am his match found out in October but haven't been contacted since.Don't know if I have to get more tests done.My brother was given revlimid for a month but now taken off it ,We don't know to much about mds Doctors not very helpful.Brother trying to get hold of his blood speclist but can't seem to reach him .His family dr. took him off the revlimid .I think because his white blood count is low.He really scared about getting the bone marrow done
Did your husband get a match yet Betty

I Betty,

No my husband doesn't have a match yet.
He has no siblings and must wait for the world bank donors.
How old is your brother?
My husband's doctor explained us that with his age they won't try any medicine unless a match donor won't be found.
Where are you from?
We're in Portugal where there are European guidelines.
I wish you the best.
He'll make it, I'm sure, with your help.
If you want, you can email me directly: espada.paula@gmail.com.

Wishing you all the best.

[paulaespada]

Originally Posted by Zoe's Life

Paula,

Welcome to the forum. What type of MDS does your husband have? Does he have excess blasts? Sorry I don't know anything about toxoplasm infections. Someone here will though. Keep us posted.

Zoe

P.S. I am exhausted and have a stray dog in my house, so I am likely not making sense. Sorry.

Hi Zoe,

We don't know yet what kind of MDS it is. He has no excess blasts. This is a good signal, isn't it?
Thank you very much for your answer

[paulaespada]

Originally Posted by Birgitta-A

Hi Paula,
I think your husband should avoid all kinds of infections - not only toxoplasmosis. Do you know his neutrophil count ?
Here is a link for patients with neutropenia:
http://www.nccn.org/patients/patient...duce_Your_Risk

Kind regards
Birgitta-A
69 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal, Neupogen 2 injections/week after four infections Aug-Sept 2007 with neutrophil count as low as 0.1

Hi Betty!

I'm not sure neutrophils count but it's almost normal. Doctors says they're fine. The problem is that he isn't immune to toxoplasm.
Thank you very much for your answe.

[skoopman]

I could be wrong but I think a major source of toxo infections comes from cats and cat litter, therefore if you have an indoor cat, your husband should not be cleaning the litter box.

Suzanne

[Birgitta-A]

Hi Paula,
Hope your husband will get his stem cell transplantation soon! Here is info about toxoplasmosis. It is true that you often get the infection from cats:
http://www.cdc.gov/toxoplasmosis/ic.html
Kind regards
Birgitta-A

[Alison]

Hi There

I'm sorry to butt into this thread but on doing a search I thought I'd add to it. My Dad hadn't shown any change after his third cycle of Vidaza until yesterday when he went for a blood test and guess what...EUREKA! His HMG was at 10.0 (last transfusion 11 days earlier). My Dad usually averages 2 units per week. His WBC rose from 0.2 to 2.4 and his platelets from 6 to 29. Needless to say, my Mom & Dad went off to the Haemotologist in better spirits than ever before! The doctor has said that he suspects that the Vidaza is working but that my Dad has the worst kind of MDS (estimates survival at 2 years and 1 year to leukemia). He feels that the Vidaza is likely to put him into remission but it will probably return in a year and then the whole cycle will have to start again.

I passed on Birgitta's information to my Mom on the sub-types and the Haemotologist responded that he has all sub-types and is a "very sick man". He told my folks that the only cure would be a bone marrow transplant. At the age of 61 the mortality rate is 10%. My Dad has two brothers and we have asked them to go for matching so we hold thumbs. In the meantime the Doc has advised that he continue with Vidaza and hopefully get his counts up so that he can go through with the transplant.

This has been really tough news for all of us to bear but we are grateful that we have a way forward. The transplant is going to be extremely costly but we are going to try and raise funds. I'll do more searches on this site to gain more insight as we explore the option of transplantation.

In the meantime the poor guy suffers on a daily basis and his latest irritation is itching and hives. I noted that that some of the patients use Zyrtec and Benedryl and we are going to check out whether these drugs are available in South Africa as he hasn't been prescribed this medication.

Regards
Alison

[Birgitta-A]

Hi Alison,
How wonderful that Vidaza is working for your dad !

I don´t know anything about drugs in South Africa but i US new drugs like Zolinza are approved and have shown results when Vidaza isn´t working any more.

It is very positive that your dad is young enough for stem cell transplantation. You can read about it here:
http://www.cancer.org/docroot/CRI/co...5.asp?rnav=cri

Your dad can´t have all subtypes of MDS – ask his doctor how many percent blast cells your dad had in his last bone marrow punction.
Kind regards
Birgitta-A
67 yo at dx and too old for SCT

[Alison]

Hi There

I was all for the SCT after hearing that the doctor said its a cure for my dad even though at his age (61) he runs a mortality risk of 10%. But, after reading your link it seems that 50 is kind of the threshold. This makes sense. In addition, he isn't well at all and struggles daily. Clarifying with my Mom she says the doc said that he has 3 subtypes? she said that he has excess blasts etc. I have emailed him to get specifics. His WBC has hovered around 0.2 to 2.4 which is a lot less than is required in the article. This also makes sense.

Nevertheless Vidaza seems to have taken hold this cycle, we're waiting for his fourth cycle. Poor guy, his stomach is still black and blue after the last cycle. Was reading about possible IV and I think that if he decides to go for a fifth and sixth cycle I might recommend this as an alternative.

What makes me feel a bit down is that medicines are so expensive and an SCT could cost half a million rand and then the likelihood of him not making it is so great. How difficult life is to force one to place a price on wellness!!!!

I am so excited that my brother and his family have decided to come and visit next week (flying in from New Zealand) and we're having a family photography session which is going to be great!

I guess its each day at a time....
Ali

[Harold P]

Allison,
Ask your mom if your dad was diagnosed with one of the following subtypes:
1.) Refractory Anemia (RA)
2.) Refractory Anemia with Ringed Sideroblasts (RARS)
3.) Refractory Anemia with excess blasts (RAEB)
4.) Refractory Anemia with excess blasts in tranformation (RAEB-t)
5.) Chronic myelomonocytic leukemia (CMML)

Then the doctor should have given him a risk factor which is determined by the marrow blasts, karyotype, & cytopenias. He would then get a risk score from those 3 score values. Either low, INT-1, INT-2, or High. If he has chromosome abnormalities that will usually mean he has a secondary diagnosis which means it was probably caused from chemo, radiation or benzene instead of di novo (unknown cause). If it's di novo it is easier to treat than a secondary diagnosis.

Sandy
---------------
Husband 61 DX 2/08 with RARS-INT-1, secondary due to chemo treatments in 1998 for Non-Hodgkin's Lymphoma.