[JulieMarie]

Neal,

Thanks for the reply. I guess my mom has been diagnosed with MDS since Sept / Oct ’04 and since then he’s either done cbcs once or twice a month depending on what was going on. Then this sudden change. Guess I’m just worrying to much and need to start up one of my hobbies (sewing and scrapbooking) to get my mind off of everything for a few hours.

Also, have you ever thought about making a website or writting a book with all the normal “English” items you know about MDS?

Hope you are doing well.

Thanks again!

[JulieMarie]

Good luck! WE’ll be praying for you! Keep us updated when possible.

[JulieMarie]

April,

Back on 12/27/2000 my grandmother passed away. Being relegious, right before she past away she said she seen the blessed Virgin Mary. So I would say, yes, they do “see” things right before they pass away.

Her husband, before he was diagnosed with Alzheimer’s was seeing monkeys in his house, and home repairs (walls being taken down and new walls in different places being put up) that weren’t there. I don’t think I’ll ever forget the time he called us about the monkeys. Always brings a smile to my face for some reason.

Best of luck with you and your mother-in-law.

[JulieMarie]

Hi George,

I know my mom has gotten a few of her bills for her Vidaza treatment, her insurance co. not covering because they don’t have the correct medical number yet for Vidaza, since it was just ok’d for MDS in May of 2004. Her dr. office is just letting it ride on her account until they get the correct number for the insurance co. I know when my mom gets her shots at the dr. office co-pay is like $15, but at the hospital on the weekends it’s like $400 so this time around (round 3 of 4) she’s going to take Sat and Sun off and get the last two days at the office instead.

[JulieMarie]

shirlsgirl,

At the last dr. appointment (almost a month ago) her dr. said that a BMT is way off into the furture. Which is puzzling to me cause I know you could be on a waiting list for years before it comes true. Good thing she has a total of 5 brothers and sisters (3 of which are pretty healthy) so hopefully one of them would be a good donner. IF I would know now that if I were to have a child and that the stem cells would work for dear young mom I would try to have a child right now, even though I’m not married.

I would think and hope that mom would go through a BMT or a SCT, but we just lost my jr high math teacher last month after a BMT. So she may be a little more scared to go through one. I know that her family is behind her 100% of the way, and that is the most important thing right now.

Mom goes back to the dr. tomorrow, unfortunately, I can’t get off of work for this one, I know I won’t be as good of a worker tomorrow, but you got to do what you got to do.

[JulieMarie]

Thanks to everyone posting a reply. It’s helping some. Since my mom is not tx dependant yet maybe, just maybe she’ll live longer. I hope, I still want my mom to be there at my wedding and to be there for her grandchildren to be born.

[JulieMarie]

Bootie Gigglelips,

Gigglelips fits me, I get on these giggling trips when I’m really tired. I’ll laugh at nothing and then get really winded.

Miss Gigglelips.

[JulieMarie]

Jennifer,

Sorry to hear about your case. Everyone is affected differently. I know hearing about MDS was a true shocker to our family when my mom (who is now 53)was finally diagnosed Last September with RARS MDS. She was sick all of last year. First with a urinary track infection, then with pneunomia (spelling?) finally in July the family dr. did a blood test and seen her counts off and told her to get more iron into her diet and come back in a few months if nothing changed. In September when nothing changed and infact her counts went lower, the dr. refered her to a specialist in Cancer. After a bonemarrow Biopsy in September / October she was finally diagnosed and started treatement of Procrit. After Thanksgiving when it didn’t seem Procrit was working the Dr. suggested we start Vidaza after the Christmas season. Christmas was tough for her, but since then she’s started Vidaza. She’s gone through 2 rounds of treatments so far and is doing great. Infact, today she is flying to Chicago for some MDS seminar which is tomorrow. Keep your chin up, the first few months of treatment are the wrose, My mom who’s a nurse is still managing to work about 40 hours a week, take each day as it comes. If you do go on Vidaza, a suggestion that has help my mom out greatly is to have meals all ready done up in the freezer, so all she has to do is get a serving out and pop it in the stove or microwave.

Hang in there, all of us here at the forum are pulling for you.

[JulieMarie]

HI Josie,

I read your post about your mom still cooking, but at times wears her down. One thing I could suggest is on one of her good days you could help her make up a few meals and have them in the freezer. A friend of mine who is a survivor of breast cancer said this really helped her out when she was on chemo and her worse days. I know it has helped my mom out too who is now on Vidaza and procrit. She’s somehow still working 8 hour days.

Another little tid bit that I would like to pass along to you, is make sure you take some time out for you, even if it is just a bubble bath here and there. I know sometimes I have to take a break from MDS, and helpping my mom out, helps keep things real.

Wishing you and your mom the best of luck.

[JulieMarie]

Kathy~

My mom is starting round 2 of Vidaza today. First round went ok, but Hemoglobin droped to 7.?, had a blood transfusion and last week at her appointment hemoglobin was a 13! YEAH! Mom’s first round went ok, she still managed to work just about 35 hours that week. She was very tired and was craving icecream, still is. Don’t know why, but hey if she’s hungry for it I’ll buy it at the store:)

[JulieMarie]

Neil~
Sorry to hear about your mom, is MDS gentic in any way? Mom was diagonsed last fall, Is there anything I should watch out for in my health or do to ensure I don’t get it?

I’ll keep you and your mom both in my prayers, maybe one of these days there will be a cure.

[JulieMarie]

Jim,

My mom is also taking the anti nausea medication right before the first shots of the cycle. It’s an iv I know. Not sure of the drug though. She also has a prescription drug that she can take if needed at home. My mom is also itchy. She was told to put cortizone on shots when tehy are itchy and that seemed to help. Since we are in Ohio our skin tends to dry out in the winter so any type of lotion for dry skin should help as well. I forget what she has in the bathroom at home right now. Hope she doesn’t give up, she’s too young to give up.

[Author]

Posts