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Old Mon Jan 29, 2018, 04:37 PM
bobspez bobspez is offline
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Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 13
MDS AZ Wife
I was diagnosed with CMML in Sep. 2016. At 71 and with persistent afib I'm not a candidate for a BMT or SCT and I have been on watch and wait since being diagnosed. CMML generally is accompanied by a swollen spleen so I always feel full, and never feel hungry. I am 6'1" and in a couple of months after diagnosis went from 215 lbs. to 185 lbs. I realized I was losing 3 to 4 lbs a week and so I decided to boost my weight with extra desserts (little cherry pies, oatmeal cookies, ice cream, halvah, chocolate, etc.). I also eat meals I enjoy as some foods no longer appeal to me. My weight went up to 194 +- a pound, and has been there for about a year. I weigh myself first thing in the morning when I get out of bed and if I am below 194 I remember to add more desserts.

Regarding the cough, before diagnosis I had a bad cough for about a month, and I finally got so weak I couldn't walk a dozen steps. When I went to my GP she took an EKG and put me in the hospital. I had afib and my heart rate was in the 180's and I wasn't getting much blood circulating. In the hospital I also had 6 liters of fluid around my lungs which was removed with chest tubes over a two week period. I was also diagnosed with SMZL b-cell lymphoma of the spleen but went into remission after 8 weekly infusions of Rituxan. However a few months later I was diagnosed with CMML. When I came home from my 23 days in the hospital, I was on oxygen for several months. Since then I check my O2 levels with a fingertip pulse oximeter a few times a day. It is currently 96% or better. My pulse is now in the 60 to 90 range due to 5 meds I take for the afib. The coughing had been caused by the fluid around my lungs, caused by the afib. But one of the oncology nurses who was administering the Rituxan told me she thought the cancer could have caused all of it.


Quote:
Originally Posted by MDSAZWIFE View Post
This new journey has been a bit scary to say the least. My husband is recently 56 (although I told everyone he was 57). He is 6’6” and about 250lbs. He has always been very strong and a hard worker, so this laying around and being completely exhausted is not for him! It is so difficult to watch him losing weight, because he has no appetite. I would appreciate any advice on how to help him with his lack of interest in food. He has also developed a cough that doesn’t seem to want to go away, which exhausts him. His heart rate is already elevated, so he really could use reprieve!

We head to Mayo in Phoenix to talk to the transplant doctor. I pray every minute that he will be a candidate for the transplant, and that all will go well.

I am so grateful to see long term survivors posting their stories on here. It gives me hope, and makes me feel a little less scared and alone!

Praying in AZ
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Age 73. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Got 4 more weekly Rituxan infusions in Jan., 2019. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
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