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What a wonderful mom you have. I’m so sorry the treatments didn’t work for her. She has gone on a long time with MDS. I also have a great mom who isn’t well and I will be faced with what you are right now. You and your family are in my prayers. Dee

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Hi Patti, I know just what you mean about losing things you’ve typed. I don’t have the prob. on my desktop, only the laptop.
I appreciate all the ideas for my poor tongue. I can at least talk today and am taking some kind of fungal medicine. I had to have another unit of platelets. I had petechaie all over. They were only 3000.
Jules told me his VIDAZA started working after 4 cycles, which I just finished. Soooo
I’m waiting for something good to happen.
We also have friends in St. Helens which is why we go sometimes.
This laptop keeps putting letters somewhere else.
I’m glad you don’t have to make the trip to Portland so much now.

Do you home school. My grandkids go to a private school but the 8th grader is her last year. She wants to be home schooled but I don’t know what they will do. Dee

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Karen, I just read your post about your daddy passing away. I was with my dad when he passed away also. He suffered so much but when he passed away he went so peacefully. The Lord has helped me through it and also my mom who is 85 now. I pray you will remember what a great dad he was and also you a great daughter. Dee

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Warren, I hope time is going fast for you in the hospital. I’ve been there a few times myself. I pray your BMT will go well. I know what you and Jimbob mean about having wonderful spouses. The only thing I need to get is a laptop. I have a desk top computer but don’t always feel like sitting at the desk. My husband said we need to keep our eyes open for me a laptop. Take care and nice to meet you. Dee

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Jimbob and everyone else, I’ve been afraid to try the pineapple thing because I am almost constantly with mouth sores. I have to really watch what I eat. I wish I knew the solution to the platelets. I’m sure I’ll need more today (almost weekly). Mine have been down to 3,000 many times and it’s scary.
I start my 2nd week of my 4th cycle of Vidaza today. My platelets were obviously too low to get the shot last week and I had the shot in my stomach. The whole 1/2 of my stomach is literally bruised. It had a huge lump in it but is getting better (stomach still real sore, esp. to try and bend). UGH
Jimbob I don’t know how to fix a keyboard except spray with a cleaner, or I just got another one for my granddaughter at the Goodwill for $2.99. They had a lot of nice ones and it works great. Sure hope I start getting some better results with my shots. Dee

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Janet, thanks for getting back to me. I keep thinking of your mom and what she does at 88. My mom is 85 and use to be full of it (actually she still is). She’s a great mom but has so many things wrong with her that she rarely will go anywhere. We did have a 85th birthday for her though and she had a blast. She loves attention.
I’m her only daughter so she depends on me a lot.
Anyway about the capsules. You’re right about things being confusing. The Issiac site said the pills are a disgrace to the herb. Brother! I don’t think I’d go that far. Anyway I’m following the directions which say to take on an empty stomach and wait an hour before eating (that’s hard). Thanks for all the info. and take care of your sweet mom. Dee

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Karen, I feel for you and your family and your dads friend. Sometimes we feel like we’ve been drug through the wringer but we keep going. Your dad is lucky to have you and those that love him.
I lost my daddy (I was a daddy’s girl) a couple of years ago and he suffered so much and wanted to go. We had so many nights of thinking this would be it but it was when we least expected it and he went so peacefully and me and my brother was there. This is what he wanted. Hospice had come into their home and they were absolutely wonderful and so compassionate.
I will pray for your dad, you and his friend and your family. I know it takes a strong person to go through all of this. Take care, Dee

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Janet, I picked up some capsules but the only ones at the health store in capsules were “Essiac Tonic.” It says to take 1 softgel twice a day on an empty stomach. Also it is only 200 mg per capsule. I don’t know if I should go slow and do what it says or if I should take them 4 times a day. I’ll investigate more. How long does your mom wait before eating after taking it.
Somebody told me that the fresh product would be better but I went for the capsules.
Dee

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Chip, I missed your news and now you’re already in UCLA. I pray your transplant is a good one and you live many many more year. When I was at OHSU there was a room with a computer to use and maybe when you feel like it, if UCLA has one for the patients, you can check in with the forum.
God bless you. Dee

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Kathy, I coudn’t sleep last night and just got on the forum and read about your dad passing away. I am soooo sorry. This will be a hard Christmas for you and I will pray for your strength and I know since you’ve seen your dad in bad health for a long time, it’s hard to get past the thoughts of that, but I’ll pray you just remember the happy times and know that he has walked through the door to a beautiful place with no suffering ever again. Dee

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Dear Janet and Suzanne, Your words of wisdom and comfort to Brenda are a comfort to me also since I just finished my 3rd cycle of Vidaza. Thanks so much. Dee

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Margaret, Your update about Luke touched me so deeply that it brought tears to my eyes. I said a prayer to God that he give you strengh through all of these trials. Sometimes when we think the worst might though, there is light at the end of the tunnel. Don’t give up hope. You sound like such a special caring person.
God bless you and Luke, Dee

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I have iron overload from so many TX’s. I can’t really tell though. I’ve had my organs checked and everything is okay. My doc is signing me up for the new iron overload pill that’s been approved. I think it’s called “Exjade.” Prob. won’t be able to get on it until January. Dee

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Hi Sandy, Hope you guys get to enjoy some time away. I will also be finishing my 3rd cycle of Vidaza this Friday. I don’t have all of the awful nausea that Mike does but I have needed lots of xfusions. Had platelets and red cells today again. Sure hope this treatment starts doing some good things soon. I’ll keep you in my prayers to have a good time. Dee

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Jerry, I’m so glad to see your post on being thankful. I’ve been struggling with this MDS a long time and am now on Vidaza. I have the most awsome husband and he is always by my side. We will be going to our youngest daughter’s for Thanksgiving along with our older daughter and 3 grandkids. Many blessings to you and God bless.
Dee

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