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MDS Myelodysplastic syndromes

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  #1  
Old Wed Nov 28, 2012, 10:12 PM
SLB SLB is offline
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what a fun way to spend the lead up to Christmas!

Hi all,

For the last few months, it has seemed that vidaza had stopped working and have needed a couple of transfusions when previously I have been transfusion free. So had BMB on Monday and then received a call from my doctor on Tuesday night saying he wanted to admit me the next morning for chemo. Managed to convince him l needed at least one day to organise my life, care for my children, school drop offs, daycare etc.. so now just waiting for my picc line to be inserted. Not the way I wanted to spend my weeks before Christmas but it is what it is. However I am still fortunate compared to many on this forum as I guess this treatment is an option. Haven't seen doctor as yet so not sure what chemo exactly or even what biospy showed. He did say probably be in hospital for 4 weeks so going to a tight squeeze to make it home for Christmas!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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Old Wed Nov 28, 2012, 10:28 PM
milliken2 milliken2 is offline
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Sharrie;
So sorry you have to go back to the hospital, but better they catch and treat now. I wish you luck with the upcoming treatment, and of course, hope you and yours have a good Holiday - and that you can get home in time.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #3  
Old Thu Nov 29, 2012, 01:20 PM
DanL DanL is offline
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Best of luck on the chemo.

There are so many different ways to go with induction chemo for MDS/AML, but as you noted, it is good that you are healthy enough that this is an option. Make sure that you ask enough questions about the protocol - specifically side effects, what they will do to manage them, use of anti-nausea, anti-fungal, antibiotics, antivirals, as needed in your situation. Starting with the chemo drugs, all have side effects, and I believe that if you know what to expect, then you are best able to manage your way through the process and know what to look out for and talk about with the doctor.
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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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Old Fri Nov 30, 2012, 05:46 AM
SLB SLB is offline
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Thanks for ur replies. My dr said I am on pretty standard treatment regime, 7 days cytarabine & 3 days idarubicin. And yes I am on anti everything as you wrote Dan. So far I am doing OK... if and when do you start feeling the worse? But I am sure like everything else with this disease, it is all individual right?

Thanks for your wishes Beth.. here's hoping everyone on the forum can be home & well to celebrate Christmas. It sure has been tough year for so many on here!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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Old Sun Dec 2, 2012, 04:47 AM
MDSPerth MDSPerth is offline
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Sharnie
So sorry to hear that thing are not going too well for you. Hoping that the chemo treatment gives the success they are looking for and that you are out of hospital in time for Christmas. Our thoughts are with you and your family.
Sandi & Paul
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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