Looking for Information, MOM has MDS

[muzziee]

This is my first post to this forum. I did some lurking last night on this board and found a wealth of information. The only problem is that most of it is beyond my comprehension. And most of what I find on the web is repetitive or too technical for me to fully understand.

[Chirley]

Hi, I don't have any medical answers for you. I just thought I would tell you from my perspective that I find it difficult to deal with my families concern for my health. Consequently I tend not to talk about it or even to tell them when I'm not feeling so well. Dealing with the concern of my family and friends is, in a way, more difficult than dealing with a chronic illness. Call me a coward, but I too, minimise my illness both to myself and my family, but it's my way of being able to deal with it. Please, tread carefully and whilst arming yourself with knowledge is a very good idea, understand that your mother might be dealing with this the only way she can. It is always worse for the people who are helpless bystanders, than to the person who has the illness. Your mother obviously understands this and wants to stop you from worrying, she just doesn't know she might be adding to your worry. I wish you the best. It can be a very difficult time for every body. Chirley

[Birgitta-A]

Hi muzziee,
Try these sites about MDS. I hope the link to chemo isn´t too long.

You can always mail questions to me if there are words that you don´t understand. I have never heard that MDS patients that have been transfusion dependent have had blood taken out except for investigations.

There are many chemo drugs for MDS patients like Clofarabine, AraC, Fludarabine and Busulfan. Perhaps your mother will tell you which one she will get. She will hopefully answer your first question and then start to change the subject. Tell her that you worry more when you hardly know anything about her status and treatment.

http://www.marrow.org/PATIENT/Undrst...MDS/index.html

http://www.marrow.org/PATIENT/Undrst...apy/index.html

Kind regards
Birgitta
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days every 5:th week, Neupogen injections 2 dayd/week

[Ruth Cuadra]

Hi, Cheryl.

Welcome to Marrowforums. Chirley and Birgitta has already given you some valuable information. As someone just learning about MDS, you should contact the Aplastic Anemia & MDS International Foundation and ask for their information packet about MDS. The booklet on MDS covers all the basics, plus it has a glossary to help you learn the key words.

Other than having blood taken for routine tests, the only reason I can think of that an MDS might have blood taken out is to reduce the level of iron in the body. Iron accummulates in the body as the result of blood transfusions. Iron overload, if left untreated, can damage the heart, liver, and other organs. One of the treatments for iron overload is to remove blood from the body. You can read more about this in our Transfusions and Iron Overload forum.

In answer to your second question, "blast" is the short name used for lymphoblasts, which are immature white blood cells. Normally, blasts compose less than 5% of the cells made by the bone marrow and grow to form mature white blood cells. In MDS, blasts counts may rise and the blasts themselves may remain immature and non-functioning. An MDS patient is generally said to have converted to leukemia when their blast count exceeds 20%.

You can't ask too many questions. Reading and researching will take you part of the way, but most people find that they need to ask specific questions to figure out what applies in their particular case. There are lots of knowledgeable people here who are ready and most willing to help. Please feel free to ask us.

Regards,
Ruth

[Beth]

Hi Cheryl,

I am glad you have been able to post your concerns about your Mom. I must admit to being so confused when my husband was first diagnosed back in April of this year, that I could not even begin to figure out what questions to ask. So you are not alone.

My knowledge has grown very, very slowly, but I am becoming more comfortable with what I need to know about his condition. I had never heard of it and knew nothing at all about it. It seemed so very complicated, and it is actually. It seems that each loved one or patient has questions that are different because each case is different. My husband doesn't read anything at all about it - too frightened I think. You know, I think I would be too frightened too. He kind of depends on me and the doc to tell him about new meds for each problem he has. He doesn't have an MDS specialist, but the doc is an oncologist and hematologist and the big center he goes to does have a number of MDS patients.

I expect, as you said, that as your Mom sees that you want to learn more and be there for her maybe she will gradually become more comfortable talking to you about it.

The patients must feel so very differently than we do so I try to gently give out info I have learned as he asks or seems very down. I love him so much and want to be there beside him when he needs me, but so many decisions are his and I don't want to push, though he does at this point find it easier to talk about it.

This is getting so long, but I just wanted you to know you are not alone and that this is a very slow learning process for all of us. I hope you can feel okay asking questions. The people here are very knowledgeable and kind and know a lot more than I do. I do understand how confused and lost you may feel on some days, but it will get easier for you as time goes on.

Beth

[muzziee]

First I'd like to thank-you all for your quick responses. I apologize for not responding sooner but I really didn't have anything new to add to the discussion. Until now....

Chirley, Your perspective has given me much food for thought and I really appreciate your input. In my MOMs case, I will give her the space she needs to deal with this in her own way. I've made it clear to her that it's OK that she keeps things to herself, but in the meantime I will be educating myself and she can depend on me to understand, if and when, she feels a need to share.

Birgitta, Thank-you for the links. They were very helpful and have given me a cornerstone to build on as I search for more information. You've already taught me that there are numerous chemo therapies. I'd never really thought about it before because there had been no need to know. And I feel a resentment that a need to "understand it" has come into our lives. Thankfully, right now, that's all I have to resent (I'll explain further, in a bit).

Ruth, Thanks for the lead for AA&MDSIF. I hope to receive an information packet anyday. My MOM did tell me that there had been a iron overload and that resulted in the need to remove some of her blood. So you were right in your reasoning. In one of my MOM's more talkative moments I asked her about her blasts and she said they were low but couldn't recall exactly the numbers. She promised to show me the lab results when she gets back from Florida. And thanks to you, I will know to look for the word "lymphoblasts" on the reports.

Beth, Your empathy has touched me and I find a certain kinship in your words. Many of them are the same thoughts that I have for the love of my MOM. Over the holidays we spent alot of time together and she was less evasive when the conversation would turn to her health. Perhaps like you say, as time goes by it will become easier to talk about. ... God bless you and your husband.

When I made my first post three weeks ago my MOM had told me earlier that day that she would be starting chemo-therapy on January 3rd. Well, she now has refused the treatments. She had a sister who died of a rare form of cancer many years ago and said she did not want to take a chance of getting the same side-affects that her sister had from those treatments. She's scared that her "quality of life will deteriorate and become unacceptable by her standards" (her words).

Frankly, I don't know what to think or say about this. And I keep telling myself this NOT about me. But I am so very afraid of what is in the near future. MOM stopped by this morning on her way to Florida and I've been a basket case ever since. I'm just so scared for her. And now she is over 900 miles away. She probably won't be back until the end of April. The only reassuring thing is that she will be getting her health care from a Mayo Clinic near where she lives. Plus she reassures me that there will be people staying with her on their vacations for weeks at a time so she won't be by herself for more than a few days.

Again, I want to say thank-you to everyone for your kind and helpful words. I'll be lurking on the boards from now on so that I can continue to learn from everyone here. For the people who suffer from this disease, I wish you the best. And for the loved ones who are touched by this, I wish you strength.

Sincerely,
Cheryl

[Birgitta-A]

Hi Cheryl,
It is maybe quite common that patients with MDS refuse treatment with chemo - I belong to that kind of patients myself.

There are targeted therapies coming for us:

Revlimid has best effect in patients with low- or intermediate-1–risk myelodysplastic syndromes associated with a deletion 5q cytogenetic abnormality.
http://www.revlimid.com/hcp/hcp-myel...syndromes.aspx

Methods are developed to assess the impact of methylation status on the outcome of effect treatment with 5-azacytidine (Vidaza). My haematologist in Sweden belongs to a group that has shown their results at the American Hematology Society Conference 2007. http://lib.bioinfo.pl/auth:Gr%C3%B6vdal,M

Then there are groups working with analyzing histone acetylation status by immunocytochemistry and sooner or later we will be able to know which patients that should be treated with a histone deacetylase inhibitor like Zolinza.

MDS is still a very serious disease but there is some light in the tunnel .
Kind regards
Birgitta-A