Myelodysplasia Support Group

The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...

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Cancers
/ Myelodysplasia Support Group

Caregivers group

poshshorty
poshshorty
This one is for all the caregivers on the forums! please come join us here even if you are not a caregiver you are welcome!
I know at times all I do is sit and cry and feel that no one understands. WE ARE NOT ALONE!
MillieD
MillieD
Cindi,
First of all I am so sorry about your mom. This is such a horrific disease. When I heard anemia, I thought eat liver. What did I know? I run the gauntlet from tears to anger. What is wrong with me?

We live in FL and Cat suggested we go to an MDS specialist. I was lucky enough to get an appointment for 2 weeks from today with hopefully one of the best at Moffitt Cancer in Tampa.

BTW, Joe is 77 and has already been told too old for a transplant. I'm hoping that Moffitt can offer us some hope.
deleted_user
deleted_user
I'm scared my mom has MDS they gave her chemo treatment but today her blood was at 7 and they are stopping treatment....can someone be honest with me and tell me ....once chemo does not work what next and does anyone know realistically would you say she might die within a year or less
deleted_user
deleted_user
I've read all the post I want yo scream cry throw something its not fair .....please someone help me understand....my mom is dying and there is nothing I can do .....I'm not dealing with this too good. I'm sorry for sounding negative I just can't see the light right now.
deleted_user
deleted_user
Guess no one is on here alot......but it still feels good to post today I plan on calling her doctor really don't even know what to ask but I will just pray that God gives me the right questions
deleted_user
deleted_user
Tecia: I am so sorry, my heart goes out to you. We are here for you, it's just that some of us are in different time zones and haven't had a chance to respond. It really is okay to cry, and we are crying with you as we read your post. And for me...I'm sure my own daughter is feeling the same way. Please tell us a little about Mom,her age, when she was diagnosed and treatment. Hugs!
deleted_user
deleted_user
Tecia,
I am so sorry about your mom. I have MDS as well. My dad died of it or it had turned into AMl. We will never know. There is a web site I keep telling everyone about. http://www.mds-foundation.org/ They send you a lot of important information. I am sure everyone knows about it though I just mention it. As Becky said tell us a little bit about your mom. When you say her blood was 7 what exactly did you mean. Also how old is she? I have never been as scare as when my dad was sick. We as children feel so helpless. I had read somewhere having MDS is like having a terrorist living within your body waiting for the bomb to go off. Having to live with it is horrible and having a parent sick with it is just as bad. Talk to the doctors. Ask as many questions as you want. That is why he gets paid. Also have she seen a specialist? A Mds Specialist? I don't know if he can help but they are out there.

Cleveland Clinic Foundation
Taussig Cancer Center
Cleveland, Ohio
Jaroslaw Maciejewski, MD, PhD

The Ohio State Comprehensive Cancer Center
James Cancer Hospital and Solove Research Institute
Columbus, Ohio
Alison R. Walker, MD

Here are some from the MDS Foundation wed site.
My heart goes out to you I know you want answers. Always ask. No question is to small.
Cat
MillieD
MillieD
Just when I thought maybe things were going to turn around since he had an appointment with an MDS specialist, Joe's Hgb dropped from 10.1 last Fri. to 8.5 today. So needless to say he is being transfused on Monday. He just had 2 units 2 weeks ago. Now I am scared. I HATE this. His 2 sons are coming next week so maybe they will lighten the load a little bit.
deleted_user
deleted_user
Millie: I'm so sorry all this is happening. Glad the boys will be some help for you and give comfort to their Dad. This journey isn't easy, remember we are here for you to vent whenever you need to.
Hang in there! Hugs!
deleted_user
deleted_user
My mom is 86 they diagnosed her with MDS in early 2011 she gets blood transfusions and has been getting the chemo since Sept 5 days every 28 days it takes her taste away and makes her really tired but its not the type of chemo that makes your hair fall out I found out they did not stop her treatment they cut the dosage down though but even with the dhemo she is getting blood transfusions about 1 every 30 days now ......and they are starting her back on the procrit .......I don't live close to my mom so I don't get a chance to really be a part of her treatment I called her doctor and waiting for her to call me back I would appreciate some good questions to ask the doctor.....Thanks for the hugs and support.....Hugging you all back!!!
deleted_user
deleted_user
Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!
deleted_user
deleted_user
Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!
deleted_user
deleted_user
Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!
deleted_user
deleted_user
Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!
deleted_user
deleted_user
Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!
deleted_user
deleted_user
Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!
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