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MDS Myelodysplastic syndromes

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  #1  
Old Sat Nov 8, 2014, 11:01 PM
Faye R Faye R is offline
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Location: New Zealand
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Red face Journey So Far

Hi
At the age of 64years I was diagnosed with a blood condition neutropenia and this where my journey begins.
In September 2008 I was admitted in to hospital with flue like symptomís and really thought I was going to die, this gave me the biggest wake up call ever; I soon realized you should stay away from anyone who has the flue even your husband.
In May of 2009 I left work to begin my journey in a wellness campaign, live for as long as you can and stay out of hospital.
Every year I had my bloods checked and life really never changed some times my counts were up sometimes down, but looking back they were slowly declining to the point, In December 2011, I had to have another bone marrow Aspirate/Trephine and those results were not what I expected at all.
Diagnosed with Refractory cytopenia with multilineage myelodysplasia (9985/3) I like many other people would never have heard of this condition, my understanding of this is a pre -Leukaemia and is under the umbrella of the Leukaemia foundation.
So at the age of 69years I had what is called RCMD. Low+ with a medium survival rate. 1% blasts.
May I also mention that in September 2010 we had a mag. 7.1 earth quake, then in December 2010 in February 2011 in June, 2011 right up to the day of my diagnoses December 2012?
I have had another BMA/T and now classed as RCMD-RA 16% blasts.
We now have government funding for Azacytidine, I'm the first person in Christchurch to have it so count myself as been very very lucky. Right now I've nearly completed round two,(2nd month) of Azacytidine and must say round two is not as easy to except as the first month (round 1) 4 hours after my sub-cut injection of Azacytidine I'm very sick and don't know where to put myself. Yes I have anti nausea pills Domperidone 10mg I take 2 of these one hour before my chemo. My nausea and sickness last for about 6 hours, I have my injection around about 1-30pm every day Monday to Friday then Monday and Tuesday of the next week. On the Sunday I'm back to normal again.
I really would like to know if this gets worse before it gets better.
So what I'm asking for I guess is any suggestions as how to handle to nausea.
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Old Sun Nov 9, 2014, 03:03 AM
Chirley Chirley is offline
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I took Tropisitron (sp?) before my Azacitidine and I had no nausea. Perhaps you could ask for this tablet instead. I was given my Vidaza and Tropisitron intravenously though. It's just a matter of insisting on a better anti nausea medication. They really need to listen to you.
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Old Mon Nov 10, 2014, 06:13 PM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
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Hope u can get your nausea sorted Faye xo thanks Chirley xo

My fevers have finally dissipated after 7 days but now I just feel exhausted & crumbly. I'm still having night sweats. Not sure if it's menopause! See GP today for blood test results & ultrasound results. I had an abnormal liver function test, May just be a virus but just checking. Will see...
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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Old Mon Nov 10, 2014, 08:12 PM
Cheryl C Cheryl C is offline
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I'm sorry I can't advise on the nausea, but I am interested to read your journey Faye - not dissimilar to mine, in that I started with neutropenia many years before the MDS diagnosis. I am still RCMD and stable. Your situation gives me a picture of what could happen to me at any time.

I just want to wish you all the very best with the Azacitidine and hope that it puts you into remission. Extended fevers are exhausting and can certainly make you feel very weak. I had that experience with flu around this time last year while in Tasmania. Have you considered going on a good tonic or immune booster to pick you up? Last year I took Fusion brand Astra 8 immune tonic and I believe it really helped me.

My daughter-in-law is from Christchurch and we have visited the area a couple of times. I hope you aren't still waiting for earthquake damage assistance.
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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 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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Old Tue Nov 11, 2014, 12:03 AM
DanL DanL is offline
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Zofran (ondanestron) seems to work pretty well for preventing nausea with Vidaza, I have also received Caitrol and have avoided any nausea through 4 cycles.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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