Looking for information for husband with mild MDS

[MaggieW]

Hi everyone

My husband was diagnosed with MDS last week after 2 years of attending the hospital and having had two bone marrow biopsies (they lost the first one!!). Looking for information on mild MDS. My hubby has a high haemoglobin but is constantly tired and complains his arms feel heavy. He has chronic fatigue but otherwise fights off infections better than the rest of the family. We are hoping he will remain this way for years to come. Im concerned that the hospital are not looking to provide any sort of treatment and are not doing bone marrow tests on his brother and sister in case its needed later on. Is it normal to have this wait and see approach??

Best wishes to all fellow MDS forum members. M

[Zoe's Life]

Maggie,

Welcome to the forum! YOUCH!! They lost a BMB?!? They lost my pap smear once, but that is nothing like a BMB.

A high hemoglobin is unusal in MDS. How are his other counts?

It is very common to take a watch and wait with low risk MDS. Does he have any chromosome abnormalities? Basically, with low risk MDS they do supportive care to improve quality of life, but if his counts are good and he is feeling OK, they will watch and wait. Life expectancy can be long with low risk, particularly if you husband is younger (you don't say how old he is).

If you google myelodysplastic syndrome you will find a ton of information. Don't be put off by prognosis though as most info is older and new meds are coming out all the time. He sounds like he is doing well. Many folks with low risk can do well for years. My doctor has a patient who has been living for 30+ years with 5q-.

Also, you can go to Site Announcements on the main page and click "more Services..." You will find many links to give you more info.

I am glad you found us. Ask any question, likely someone will be able to help you.

Zoe

[MaggieW]

Hi Zoe

Thanks for your info. I hope that my hubby has many years of low risk ahead of him. Its nice to hear that it could stay ok for as long as your doctors patient. Phil is 57. He has been under the consultants for two years.
Im not going to go on any more sites for the time being as I became a bit depressed yesterday. It all seemed doom and gloom! Im not sure of his exact blood results as I dont have them with me but I know the concern is that his neutrophil count is now 0.9 and they will have to start some treatment if it goes to 0.5. This has been dropping slowly over the last two years. Im glad I have found this forum - I feel better already.

M

[Kitty]

Hi Maggie,

Welcome to the site!

I was diagnosed June 07 with intermediate MDS. At first, it seemed like a death sentences but now I am learning to live with it.

I did go for a second and third opinion and I found a great doctor here in Monterey, CA, and I go for consultation to Stanford Medical Center.

It's hard at first but it is important to become well informed and this site is great for that.

Please feel free to ask any questions and I am sure someone here will come up with a helpful answer.

Survival for mild and intermediate MDS is not too bad and some people live for many years in pretty good shape.

Keep your spirits up and enjoy every day as they come.

Best regards,
Kitty

Where do you live?

[paulaespada]

Originally Posted by MaggieW

Hi everyone

My husband was diagnosed with MDS last week after 2 years of attending the hospital and having had two bone marrow biopsies (they lost the first one!!). Looking for information on mild MDS. My hubby has a high haemoglobin but is constantly tired and complains his arms feel heavy. He has chronic fatigue but otherwise fights off infections better than the rest of the family. We are hoping he will remain this way for years to come. Im concerned that the hospital are not looking to provide any sort of treatment and are not doing bone marrow tests on his brother and sister in case its needed later on. Is it normal to have this wait and see approach??

Best wishes to all fellow MDS forum members. M

Hello Maggie

In symptoms and losing bone marrow biopsy your husband case ressembles my husband. I don't know how it's possible to lose such important material in hospitals.

I hope your husband is doing fine.

Finnaly my husband will be seen in our best Oncology Hospital. Hopefuly some decisions will be make.

I have found help here in this forum.
The only meaningful help until now.

[Dick S]

Originally Posted by MaggieW

Hi everyone

My husband was diagnosed with MDS last week after 2 years of attending the hospital and having had two bone marrow biopsies (they lost the first one!!). Looking for information on mild MDS. My hubby has a high haemoglobin but is constantly tired and complains his arms feel heavy. He has chronic fatigue but otherwise fights off infections better than the rest of the family. We are hoping he will remain this way for years to come. Im concerned that the hospital are not looking to provide any sort of treatment and are not doing bone marrow tests on his brother and sister in case its needed later on. Is it normal to have this wait and see approach??

Best wishes to all fellow MDS forum members. M

OMG, you have described almost to a Tee what I am going through! My HGB is just over 10 and neutrophils at 0.8 and have chronic fatigue, tired and my arms feel like a ton sometimes. Somedays I almost feel like my body is "drowning". I also don't seem to have any trouble fighting off infections. I too was diagnosed in Feb. 2006 and even after BMB 4/2008 I have been put in a "wait and see" mode. It is not pleasant, but it is liveable.
I wish your husband all the best and I will put him in my prayers.

[Lillian]

Hi Maggie;
Its been a while since I have come on the site.. I just want to say a few words. First of all You and your hubby will be added to my prayers.
Just keep faith and be the best moral support you can be.
My husband was diganosed with MDS RAEB2 in Dec. 2002, Hon the prognosis was wrong. He is still battling.. and even on his worse days he keeps trucking.. You have to know that doctors treat they are not God.
Read and learn all you can on MDS. It helps you know and understand so much of what you hubby is going threw. And he has the mild MDS he has a very long life ahead of him.
Keep that chin up hon.. Smile for your hubby. When depression hits you.. Go off to your room and beat the heck out of a pillow.. Have a good cry and than smile some more..
You have found the best people possable. I am thankful that I click on this site. Questions are answered and you know the support is going to be the best.
Prayers and Love your way.
Lillian