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  #1  
Old Sat May 10, 2014, 01:11 AM
god's son god's son is offline
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Join Date: Mar 2014
Location: fremont ca.
Posts: 5
Do men cry?

Hello all,
This is my first time I post in this forum, and please be patient and understand my problem. For me MDS is very new, never heard about before, and just 3 short months ago I never taught I will ever hear this word. Last year in November I had a blood test as a result of a annual check up, and all the tests come back positive. All but the white blood cell count which for the last year and a half was slightly below normal. My doctor had me re-checked every 3 months to keep an aye on this. The same the specialist my Hematologist who had the same wait and see attitude. But in my next blood test in January all the results where bellow normal. Immediately after this the doctor had me do a bone marrow biopsy and the result: I was diagnosed with MDS. The specialist's interpretation was very optimistic. According to him there isn't any cancer, and he send me home
to wait and have another test 3 months later. Today I had the results, and they are even lower then the January test.
01/17/14 05/02/14
white blood cell count 2.9 2.7
red " " 4.40 4.11
hemoglobin 12.6 11.7
hematocrit 37.3 34.5
platelet count 128 155
absolute neutroph. 1344 1431
This is all I know, for the last 3 months I read all I can in this forum and try to put some sense in everything. I do not understand much, probably I am to
scared and confused to make sense of anything, but I am a Christian and pray to my savior and see what my doctor will say next Tuesday. What do you guys think? I'll add to this after my visit with the specialist.
Thanks
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  #2  
Old Sat May 10, 2014, 10:41 AM
bailie bailie is offline
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Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
I am sorry to hear of your diagnosis. It is a shocker to hear the news. This is a good place to find information and information is important. Numbers take on a whole new meaning. There are many success stories and they are very helpful.

Your blood counts are very similar to mine at this time. I was diagnosed in November 2013 and I am now preparing for a stem cell transplant perhaps in August.

Good luck and keep the faith.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #3  
Old Sat May 10, 2014, 02:41 PM
MaryS MaryS is offline
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Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
It's ok to cry

Quote:
Originally Posted by god's son View Post
Hello all,
This is my first time I post in this forum, and please be patient and understand my problem. For me MDS is very new, never heard about before, and just 3 short months ago I never taught I will ever hear this word. Last year in November I had a blood test as a result of a annual check up, and all the tests come back positive. All but the white blood cell count which for the last year and a half was slightly below normal. My doctor had me re-checked every 3 months to keep an aye on this. The same the specialist my Hematologist who had the same wait and see attitude. But in my next blood test in January all the results where bellow normal. Immediately after this the doctor had me do a bone marrow biopsy and the result: I was diagnosed with MDS. The specialist's interpretation was very optimistic. According to him there isn't any cancer, and he send me home
to wait and have another test 3 months later. Today I had the results, and they are even lower then the January test.
01/17/14 05/02/14
white blood cell count 2.9 2.7
red " " 4.40 4.11
hemoglobin 12.6 11.7
hematocrit 37.3 34.5
platelet count 128 155
absolute neutroph. 1344 1431
This is all I know, for the last 3 months I read all I can in this forum and try to put some sense in everything. I do not understand much, probably I am to
scared and confused to make sense of anything, but I am a Christian and pray to my savior and see what my doctor will say next Tuesday. What do you guys think? I'll add to this after my visit with the specialist.
Thanks


I am sorry that you find yourself in this situation. It is pretty scary isn't it?
It took my father a couple of months to completely understand this situation.
MDS is very confusing. It will take some time to adjust.
They are making good progress in this disease. There are Some good medications out there and clinical trials.
In the beginning my dad decided to wait and watch and take Procrit shots. Procrit stimulates the production of RBC. This worked for a few months, I have read that others have gone longer. Some people don't want to wait and watch and want to start the Medicine (chemo)right away. It is what you feel is right for you.
On this site, you can learn what other people have done , and what was successful for them and what wasn't successful for them. Like you will see Everyone's situation is not the same, everyone's blood counts do different things at different times. A medicine that doesn't work for one doesn't mean that it won't work for you and vice versa. There are options- so that is good.
You will become a pro with your blood counts .
My dad is from New Orleans but has travelled to Houston for treatment.
He is getting good care here.
There is lots of information , read and understand it and ask question.
You are not alone! Many people stand with you. There are many positive stories.
Focus on that.
Prayer for you
Mary Schmitz
__________________
Mary, daughter / caregiver of Bob age 77; on Oct 1 2013 dx with MDS/MPN overlap +Trisomy. Jak2 at d< 5 blast. , and on March 1 2014 Dx with AITL non Hodgkin's Lymphoma.
Tx: decitabine/prednisone/Jakafi?
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  #4  
Old Sat May 10, 2014, 04:13 PM
god's son god's son is offline
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Join Date: Mar 2014
Location: fremont ca.
Posts: 5
Thanks ladies,
It is good to know that others on the same situation are there for you and also we all can learn and support each other. this is a really great site.
god's son
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  #5  
Old Wed May 14, 2014, 04:59 PM
god's son god's son is offline
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Join Date: Mar 2014
Location: fremont ca.
Posts: 5
Good news,
Went to see my doctor, ( this is my personal physician and not the specialist)
Victor be happy, everything is OK, you are stable, actually you-re platelets went back into range. There is anything to wary about. You gain weight,
of course after a total knee replaced, I'll see you in 3 months. Every 3 months I'll have a blood test and he wants me to be happy.
As I said in my first intro, I am confused but happy,..... at least for the next 3 months.
take care you all
vic.
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  #6  
Old Wed May 14, 2014, 11:41 PM
Caregive Caregive is offline
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Join Date: Nov 2013
Location: USA
Posts: 61
Victor, it helps to vent and post comments about your frustrations. It took me as caregiver almost a year to settle down. I read non-stop on the subject of MDS, kidney issues as my husband has, all the meds he takes, even where people go for treatment. Now I read sometimes but I go for walks, go shopping, meet up with friends. I also try to get my husband keeping busy. He's been doing the yard and garden for weeks and keeps going right up till he needs another transfusion.

So we are thankful for every new day. But I keep on top of things and ask too many questions of the doctor. Plus I read online all the time, unless I give myself a break for a spell. I keep a sort of diary, listing all appointments, what was said, what change in meds and all that. Keep asking questions here. I wish you the best.
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Caregiver for husband
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  #7  
Old Sat Sep 6, 2014, 11:58 PM
Tominftl Tominftl is offline
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Join Date: Jul 2013
Location: Fort Lauderdale, FL
Posts: 9
Yes, it's okay to cry.

I'm 65 years old and I was diagnosed over year ago with MDS. I have the IV Dacogen drip once a month. I felt sorry for myself for the first few months. I guess I was in shock. I wasn't sure how long I had to live. I was scared also of this disease I had little knowledge of. As it turns out I'm doing quite well. No bad reactions from the dacogen. (Other than getting very tired) I am going back to the gym to try to get back in shape.
Go ahead and cry. Get it out of your system then move forward with what life has in store for you. I have been there also. Best of luck to you newly diagnosed.
Keep your chin up and enjoy the time you have with the people who mean something to you.
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Tom divorced and retired. Diagnosed in 2013. 65 year old male, on dacogen IV every month until Doctors decide to do the transplant. I have donors, 10/10, unrelated.
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