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MDS Myelodysplastic syndromes

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  #1  
Old Thu Apr 19, 2012, 10:07 AM
Beth Beth is offline
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Worse Condition

Hi All,
My sign-in is Beth, but since we have another Beth now, I will start to sign in as Beth (Kay) to help keep us straight.

My husband is worsening the last few weeks. I can't tell if it is the Vidaza (two mths) or the illness. His red cell transfusions are becoming more frequent (four days this time.) The platelets transfusions don't seem to be responding much at all, but the white cells have started responding to Neulasta better now, which is new.

They don't do the platelet txf until they reach 10 so his bruises are bad, peteechia (sp?) and purple circles here and there, and mouth bad with both. He has lost his appetite and lost five lbs in the last five days. This is the week after the 2nd Vidaza. I am not sure his body can stand this particular med. They started him on continuous oxygen yesterday and he was confused off and on last week and this one. He also was having chest pain and shortness of breath almost constantly. He responded well to Dacogen for two yrs but they stopped to see how his bone marrow would do on its on and nos had dropped a point or two. I wish we could go back and try it again.

Guess I just needed to whine a little to all of you. We don't have any family close by to help and it is becoming very hard to drive 40min to treatment every day or one thing or another. His youngest son is going to try to come a day or two next week, but it will be hard for him under his circumstances. I love this man dearly (30 yrs 2nd marriage) and it is so hard to see him so weak and suffering like this. I could cry buckets, but doubt it would help much. Thank you for listening.

Beth (Kay)
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Husband -MDS RAEB; Dx 4-07;age 73; Blasts 6.6%. Dacogen successful for 2 yrs; WBC (1.21-2.3);Platelets-12; RBC 2.22. Lenolid 100 mg and Pred(30mg) 4m. Disc. Procrit & Neupogen 3wk for last 3m. Trx every 2 wks. Platelet trx 2wks past. Started Vidaza 3-12-12 five days on, 3 wks off.
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  #2  
Old Thu Apr 19, 2012, 10:09 PM
bebop bebop is offline
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hon I kind of know what you are saying. with my dad it was just me and my stepmom taking care of him. I can't say if it is the mds or the vidaza that is making your husband worse but vent here all you want. we are all here for you!
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Old Fri Apr 20, 2012, 01:01 AM
Beth Beth is offline
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Thank you for writing BeBop. Looks as if it will be every wk now for both red and platelets. I wish they would do the platelets before 10 and red 7.3 and at the same time. He is so bruised all over his arms from being stuck. Another red transfusion tomorrow probably. We did find out today that there was fluid on the lungs (which just appeared Tues.) because of so many fluids from the chemo and tranxs. He got Lasix yesterday and today for that, but thankful it wasn't pneumonia as they first thought. He is feeling better from the platelets and oxygen and hopefully the fluid will be gone soon. His shortness of breath (it was severe) is better.

I have a chronic illness too that causes severe fatigue and pain in joints and muscles so that makes it hard. We'll keep doing the best we can and hopefully keep positive with an occasional cry and be grateful for every day we have together I guess. One of the wonders of this experience is the wonderful people we meet along the way-nurses and other patients both. We are grateful for those.

Beth (Kay)
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Husband -MDS RAEB; Dx 4-07;age 73; Blasts 6.6%. Dacogen successful for 2 yrs; WBC (1.21-2.3);Platelets-12; RBC 2.22. Lenolid 100 mg and Pred(30mg) 4m. Disc. Procrit & Neupogen 3wk for last 3m. Trx every 2 wks. Platelet trx 2wks past. Started Vidaza 3-12-12 five days on, 3 wks off.
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  #4  
Old Fri Apr 20, 2012, 02:38 PM
cathybee1 cathybee1 is offline
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Location: Fort Jones, California
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Ah, Beth, lots of us have been where you are. We have the same situation here -- me with my own health issues, and long long drives to doctors. I'm so sorry you and your husband are going through this. I know that the side effects from Vidaza are often pretty bad in the beginning, and less so later on. I hope you find that is the case.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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Old Fri Apr 20, 2012, 05:27 PM
bebop bebop is offline
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they can do both on the same day hon and always have them give him benedryl and lasix with the transfusions. dad only had to go on oxygen once he started having the breathing difficulties. if you ever want to talk feel free to pm me your number. I always have a willing ear.
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  #6  
Old Sat Apr 21, 2012, 12:08 AM
Beth Beth is offline
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Thank you for your so helpful and caring messages. The appt today was set for 7:05 and we arrived back home by 4:45pm. From the Cancer Center appt, then over to the hospital for red cell transfusion. They decided to do just one unit today for the first time to limit the amt of fluid. They said the x-ray yesterday did look better. He is so unbelievably exhausted. Hopefully this weekend will help that a little with lots of rest, fun movies, and just relaxing. Mostly we just need some quiet time I think and let the body and mind heal.

They were kind enough today to bring me in a recliner from down the hall and we both got one nap. It took a long time to find the blood to match his this time. We usually type and crossmatch one day and go the next day so maybe that is why.

I feel the warmth you are all sending out and it helps me so much. Thank you for that. We all need each other with this disease.

Beth (Kay)
__________________
Husband -MDS RAEB; Dx 4-07;age 73; Blasts 6.6%. Dacogen successful for 2 yrs; WBC (1.21-2.3);Platelets-12; RBC 2.22. Lenolid 100 mg and Pred(30mg) 4m. Disc. Procrit & Neupogen 3wk for last 3m. Trx every 2 wks. Platelet trx 2wks past. Started Vidaza 3-12-12 five days on, 3 wks off.
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