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MDS Myelodysplastic syndromes

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  #26  
Old Tue Aug 18, 2015, 03:05 PM
Francisb Francisb is offline
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I don't know a polite or appropriate way to ask this, but need some information. I wasn't paying attention and just went though 4 days of Hell, had to go to dr. for nausea among other things, what is the appropriate amount of stood softener to keep this at bay? I want to start way before the next cycle. I don't think it was the chemo. I felt I only got tierd from that. I am definitely going to have to watch my diet. I Don't ever want to go through that again. Today is the 5th day and I am finally returning to normal, go to tomorrow and get blood work. Thank you
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  #27  
Old Tue Aug 18, 2015, 04:34 PM
bailie bailie is offline
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What is "among other things"? If it is constipation it is important to be taking MiraLAX while on any of the anti-nausea medicine. Important while getting Vidaza.
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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),12 months Vidaza and dasatinib. Now(SCT-Day+910) Hgb 13.1, RBC 4.03, WBC 9.9,Plt 175,Neut. 6.73, no leukemia, BCR-ABL mutation(Q252H), no blasts, 100%donor. On Vidaza and ponatinib.
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  #28  
Old Tue Aug 18, 2015, 09:10 PM
Chirley Chirley is offline
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My Doc put me on regular Senna tabs during Vidaza cycles.
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  #29  
Old Wed Oct 28, 2015, 08:10 PM
Francisb Francisb is offline
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Smile Very Hopeful

After 3 rounds of Vidaza, I have went from 43,000 platelets to 174,000 as of today. White blood cells are 4.3 & Red blood counts are 3.95, Hemoglobin is 12.3. and neut are 36.2, She said she has never seen anyone respond this well. She has me scheduled for two more rounds for sure. It sure gives me more hope. I am very happy today. A long way from last May when I got the diagnosis.
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  #30  
Old Thu Oct 29, 2015, 01:40 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Francisb View Post
She said she has never seen anyone respond this well.
That's a report any patient would love to hear. What great news!
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  #31  
Old Sat Oct 29, 2016, 09:46 PM
Francisb Francisb is offline
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Hanging In There

I haven't posted in a while, its been quite a roller coaster these last few months, the Vidaza quit working in June, I am now on Dacogen, four days a week, This month my counts have came up. I am tolerating it well, although I was hospitalized twice in September and given 2 units of blood each time. I had contracted strep when my husband was in the hospital and feel like that was a lot of my problems. This month I finally feel good. In July, my husband was diagnosed with pancreatic cancer, he had the whipple surgery, came through that just fine. He is taking chemo one day a week, after chemo, he will do radiation and then chemo again. They are working with us so we can come at the same time. He was fortunate to be in the 15% that could have the surgery. We have come to terms with it (after the initial shock) all and just live one day at a time. From July to 1st of October was really rough. I guess I just wanted to vent. Thanks for listening to me.
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  #32  
Old Sat Oct 29, 2016, 10:02 PM
Cheryl C Cheryl C is offline
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What a difficult time you've been through! You couldn't come to a better place to vent. We're all "listening". Good to hear from you again and to know that you have made it through to a better situation. You are in my prayers and thoughts.

Keep posting!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-weekly. BMB Feb 2014 - no blast transformation. 2016 still stable tho' more frequent infections.
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  #33  
Old Wed Feb 15, 2017, 09:52 PM
Francisb Francisb is offline
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Unhappy

Wanted to let you know my husband passed away Feb 5 from pancreatic cancer, it was quite a shock, we thought he was doing well after the whipple surgery (and he was) half way through the chemo/radiation he started getting weak and swelling, we kept thinking it was the chemo/radiation. It had come back with a vengeance, we called in hospice on a Tuesday and he died the following Sunday. He was home with us. Quite a shock even knowing he was dying. We see and hear what we want to. We did have 8 months with him. It is making me a little scared. My platelets keep going down, they are 39 now. WBC, RBC and hemoglobin is pretty good. Not in normal range but close. I have not had a treatment since last of December. I have an appointment next Wednesday with my Dr. to discuss my situation. My kids are going with me. Bless their hearts, I know they are worried about me. Was wondering after Vidaza and Dacogen what would be next. Is this getting serious? Can stress affect your platelets, Lord know I have had enough of that. When I was diagnosed I never dreamed he would go before me. Thank you listening to me.
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  #34  
Old Thu Feb 16, 2017, 10:05 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Francisb View Post
Wanted to let you know my husband passed away Feb 5 from pancreatic cancer, it was quite a shock
I'm very sorry that you've lost your husband, and that it took everyone by surprise. You've told us that you've lost siblings too, and it's hard to imagine how much grieving you've had to endure. I'm sure that being home with hospice care helped a bit, but nothing can prepare you for this type of loss.

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Can stress affect your platelets, Lord know I have had enough of that.
The information I've read indicates that stress is more likely to increase platelets, not decrease them.
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