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#1
Sat Jan 29, 2011, 04:37 PM
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We all scream after eating ice cream.
This may seem like such a trivial issue, but I cannot stand ice cream right now. It's creating this horrible aftertaste in my mouth that is like a cross between a sour lemon and kerosene. I have such a love-hate relationship with cyclosporine. Any suggestions on other options?
How about taste buds? I'm used to being very particular with the subtle flavors of my cooking. Now, everything tastes like it does when I have a cold. Is this typical?
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC 
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#2
Sat Jan 29, 2011, 06:25 PM
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we all scream....
Hi
I can't help you with your taste buds, but the title of your post cracked me up! After a lifetime of being a dairy queen, I gave up dairy products, and much to my amazement, it has benefitted me greatly. I also want to scream about the fact that I have gained 20 lbs over this winter...I am trapped to where I can't excercise outside, join a gym, and I keep eating thinking it will boost my energy....which is doesn't.. Chubby AND cancer? What a gyp! 
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#3
Sat Jan 29, 2011, 07:14 PM
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Ryan, is that all you're on now, just cyclosporine? I ask because Ken had that problem with prednisone. Everything tasted funny, especially bread. About the only thing he could stand to eat was eggs. Once he quit that, however, the problem went away. He's been on cyclo for several years now, and if ice cream or anything else tastes odd to him, I'm sure not hearing about it!
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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#4
Sat Jan 29, 2011, 08:51 PM
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Not trivial at the time for me...
Prior to my MDS dx I was in ICU for various tests and treatments which included very high-dose Prednisone. The worst "tastes" for me were sugar, coffee and salts which were intensifed to give queasy discomfort.
 It took me about three months to regenerate taste buds that could tolerate some of my favourite drinks and foods again. 
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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#5
Sat Jan 29, 2011, 10:49 PM
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Hi Ryan,
I don't think you can blame the cyclosporine. I eat more vanilla ice cream/yogurt than before I was diagnosed. However, I do have a problem tolerating things that are overly sweet now. I think it is more related to the illness than to cyclosporine. Luckily, there is always dark chocolate.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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#6
Sat Jan 29, 2011, 11:37 PM
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Hmmm?
I'm also taking Mepron as well. I've heard about the ice cream problems from other AA patients too.
Now, on the other hand, I had a huge bald spot that pretty much got filled in by the excess hair growth. I'm a big guy too...My dad thinks I look like Haystack Calhoun. Thanks dad. 
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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#7
Sun Jan 30, 2011, 04:34 PM
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Haystack Calhoun?
Not sure who that is, but I am pretty sure if you're growing hair on a bald spot you may be onto something big!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#8
Sun Jan 30, 2011, 04:36 PM
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one more thing....
Eating ice cream in New Hampshire in January? THAT may be the problem!
The heavens are trying to redirect your nutritional choices!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#9
Sun Jan 30, 2011, 05:19 PM
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Quote:
 I am not on any medication at the moment.Anyone else?
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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