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MDS Myelodysplastic syndromes

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  #1  
Old Mon Aug 20, 2012, 07:00 PM
Al's Wife Al's Wife is offline
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Location: Jackson, Georgia USA
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Any suggestions for cough?

We've had a rough weekend. Last night I wasn't sure Al was going to make it through the night and was very worried. His condition has deteriorated so much in just the last week that it is unbelievable. He has developed a really terrible cough and after reading online, this is consistent with AML diagnosis. His x-ray was clear and the doctor said his lungs are clear. This coughing is wearing him down. I've tried everything I can think of - Robitussin cough syrups, home remedies and nothing has helped. Does anyone have any suggestions?
They are trying to get the Decitabine set up but we haven't gotten anything certain yet other than "We're working on it."

Beth, you are truly an angel on this forum. The oxygen info has been invaluable and no one explained anything the way you did.

We are totally exhausted and when I get a better grip on myself I will post more. I can't thank all of you enough for the prayers, love, support and hugs coming our way.

This is so much harder than I could have ever imagined to see him in this shape and to lose his quality of life almost overnight. But I'm still hoping for the miracle.

I'm still having a terrible time keeping my emotions together. I'm trying to be strong for him but can't seem to keep it together and I'm disappointed for that. He needs me to be strong. I've called my doctor to ask him for something very mild to keep me from breaking down all the time, if there is such a pill.

Please continue to pray for us and if anyone has any suggestions about the cough I would be so grateful.

Thanks,
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #2  
Old Mon Aug 20, 2012, 07:50 PM
CatherineJ CatherineJ is offline
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From personal experience Tussionex is the best medication for a cough. I've had about 5 chest infections in the past year and a half where I was coughing so hard I couldn't breathe and I started to throw up blood. Tussionex is a cough syrup with codeine in it, it's pretty strong stuff but really effective so ask your husband's doctor if would be ok for him to take. Otherwise I would frequently drink just plain hot water all day, sometimes with a slice of lemon in it. It soothes the throat and helps suppress the cough too.

I'm very sorry for you and your husband, I wish you both the best.

Catherine
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25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
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  #3  
Old Mon Aug 20, 2012, 08:59 PM
Chirley Chirley is offline
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You know, I had a man in the next chair to me in daycare once. He told me that he had had a cough with clear chest xray and chest sounded fine. Then after lots of negative tests they found he had PCP pneumonia.

All I'm saying is, just because his tests are clear so far doesn't mean they should stop looking for the cause of his low O2 sats and cough.

Good luck.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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Old Mon Aug 20, 2012, 11:48 PM
milliken2 milliken2 is offline
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Linda;
Honey - it's okay to break down. I know at times I feel overwhelmed, and I do cry - because I just look at Earl, and see him wasting away in front of me. My dear friend - whom I also help take care of - gave me a teddy bear - really soft and cuddly - and said if I had to cry, and didn't want Earl to hear - just to bury my face in the bear. And I have - many times.

Regarding Al's cough - do you have a water bottle on his concentrator? Remember, oxygen is a GAS - and can burn his throat - you need it to run through the water so it gets moistened and helps keep his lungs moist. That might be one of the reasons he is coughing so badly. Remedy for that is to have the respiratory people get you a water bottle and use every time he is using the oxygen. You have to use distilled water though.

Cough remedy - other than above - honey, lemon, and a big dose of brown sugar - and just let it dissolve slowly. Now - if you were my Gram - she would add a touch of 'hooch' to it too. She never said whiskey in front of the kids. :P:

Of course - both you and Al are in our prayers - and no need to thank me - I would do anything I could for each of you here.

((((HUGE HUGS))))

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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Old Tue Aug 21, 2012, 10:56 AM
Al's Wife Al's Wife is offline
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Beth,

Tell Earl I said "You're a keeper." What would I do without you? The water bottle has been ordered and someone is picking it up for me today. They said they could deliver it UPS but I wanted it ASAP. I mean it's certainly not going to help him until we're using it.
He's still sleeping this morning and had a restful night. He told me last night while holding me that he wasn't in any pain. I wish I could say the same for me.
Thank you so much for helping all of us with your professional knowledge.
Hugs,
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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Old Wed Aug 22, 2012, 12:45 AM
milliken2 milliken2 is offline
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Linda;
No thanks necessary - glad that I can help a little. Remember - I am always here if you need me.

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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  #7  
Old Thu Aug 23, 2012, 10:44 AM
Cheryl C Cheryl C is offline
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Honey

Pure honey is very soothing for coughs too.

My thoughts and prayers are with you.

Cheryl
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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