[JulieMarie]

Kathryn,

Stay positive, Keep mentioning the beach trip to your dad, don’t let him back down on you yet. I know with my mom’s Vidaza treatment each round got alittle tougher for her to fight but her 5th round is being delayed until after we get the results from her bmb. She’s been feeling better this past week so maybe we are in the clear. If your dad can’t go to the beach with you, brain storm on how you can bring the beach to him, I know yankee candles has some summer scents about the beach.

[JulieMarie]

Dawn,

I feel your fustration. My mom was leery about telling me stuff at the begining, but now we are closer than ever. I would suggest going to your dad’s next dr. appointment. Ask your questions, make sure your dad doesn’t hide the side effects. As for eating my mom was just told to stay away from spicey foods, which she has. The weird thing is she’s having cravings for different foods. When I’m with her I let her pick what we eat since she has the more sensitive stomach these days.

[JulieMarie]

Wendy,

Some say Yes, some say No, I think it really is more enviromental, IE family has it but they were all exposed to the same enviroment that had benzene hence multipule people in the family have MDS or other blood disorders. The best advise I can give you is if you are worried go get a full cbc. In Ohio the Chamber of Commerce has a drive once a year, I got my blood checked this year and I found out I’m normal YEAH! except for Chelsterol which was high and also my CO2 was off which I’m not sure what that means.

Hope this helps you out.

[JulieMarie]

Doreen,
With the technology please know that there are many of us here in this forum holding your hand every day and night. We are all here for you.
My mom has been going through Vidaza chemo treatments since January, on Friday we find out if it’s bmb time or if there will be more rounds of chemo. It’s not that bad serriously. Now a days they give you anti-vomiting medicine which for my mom helped a lot the first few days. One thing that helped her was having meals made ahead of time in the freezer so all she had to do is heat them up and eat. Us kids went home to help when we could since we both work full time jobs and are at least an hour away. Is your son going to be taking summer classes? If not will he be moving back home. Hopefully if that is the case he’ll be a big support. check with your hospital. I know some have support groups for family members going through chemo so they don’t feel like they are alone.

Hang in there, take one day at a time, All the best

[JulieMarie]

Butch,

Words can not express how sadden my heart is with your two losses. I will keep you, your daughters, and the rest of your family in my prayers.

Hugs

[JulieMarie]

WEndy,

My mom had pneumonia right before she was diagnosed with MDS last year. It took a few months and lots of meds but she’s better. She was weak and tired a lot, didn’t make christmas too fun, but gradually she is getting stronger, it takes time. Will keep you and your father in my prayers.

Hopefully someday soon they will find a cure for MDS with out having to have a bone marrow transplant

[JulieMarie]

Wendy,

My mom has been on Procrit since last fall. She tends to have a little bit of an upset stomach for the first day or two after the shot. But has been responding after an increase in the doseage after a month or two of being on it.

Wishing you and your father the best!

[JulieMarie]

Carrie,

Do you think if your dad would get worse by the time your wedding date comes that you could elop in New York so your dad could be there and still go through the one in the church and if your dad has a good day he’d be there too. If your dad becomes wheel chair bound what if he’d carry your flowers and you’d push him down the isle? Just a thought. At my cousin’s wedding last year I pushed our gpa down the isle before church started and then got his wheel chair out of the way until after church.

I’m sort of in your same vote, I’ve been dating my boyfriend for over 5 years, we are waiting til he gets out of college, which will be either May or August 2006 if all goes well, and then we are going to do the engagement thing and marriage. With all the family stuff I feel like eloping someplace warm and sunny and then just having a reception back home.

[JulieMarie]

Kathryn

My mom was on Vidaza since Jan ’05 She noticed more sores in and around her mouth and there’s this over counter lip balm stuff that she now uses on a daily basis and it has helped with the sores not coming. (I forget the exact name of it but I think it starts with a “H” and can be found by the blistex) My mom’s counts went low every round and each round she got a little weaker. This past round is the first time that she actually had 2 weeks off of work doctor’s orders, but other rounds she still managed to work 30 to 40 hours. Mom needed a tx of rbc after one of the rounds (1st or 2nd) Now plates are unstable one cbc they are low the next the are high, who knows where they will be today with this cbc. As for the nose sores I had those a while back when the air was dry and there was bacetrican (spelling?) an over counter drug that the pharmacy suggested which did heal the sores up with time

[JulieMarie]

CHeryl & Terri,

Thanks for the replies. Well the doc put her on 4 rounds of Vidaza back in January, we have another 2.5 weeks for next appointment and then a bmb the following week. From there the doc is going to re-evaluate her MDS and say she’s either into remission (I Hope) or if we are going to be going to start the search for a BMT (this should be good turn out since she has 5 bothers / sisters)

[JulieMarie]

Neil,

Thanks for the post. My mom’s platelets dropped this time I think she said they were in the 50 to 70K range last friday. I’m not sure if she is on Vitamine E but something I will discuss with her when I next talk to her.

You Know so much about MDS, and are always watching out for the rest of us. I can’t express my thanks enough to you. You are truely one special guy!

[JulieMarie]

Karen,

So sorry to hear about your dad. Always seems like when it rains it poors with medical things.

My mom has had MDS for about 6 months now and well just this past march there was some seminar in Chicago with Richard A. Larson, MD. When my mom returned she said it was a good seminar and that she learned a few new things. I would strongly suggest seeing this dr. Larson if possible.

[JulieMarie]

Hmmm, when I had this back in 2003 for an eye problem it was cause my potasium was low, try eating an extra banana, or consult with your dr. on your next cbc to check your potasium. I had the numness and tinglings in my feet, legs and hands. Hope this helps.

[JulieMarie]

Yeah!!! Some good news on here. Glad to hear you were just gone on Vacation, seeing some realitives in the snow. I think you had us all a little scared and worried about you. Hope all is going great! My mom’s hemo last friday was 12.0 so no procrit was given:)

[JulieMarie]

Carrie,

There is hope with Vidaza. My mom has been on this treatment since Jan. and well her hemo is 12.0 (the lowest of the norm) and it hasn’t been this good since she got 2 pints of blood end of Jan begining of Feb. She’s hopeful, but we are watching her white counts (they were 4.9 on her last cbc) As for the bears, I’m a teddy bear freak, and when I was ill back in 2003 my boyfriend got me a 3′ teddy bear. (maybe you could get him some stuff bears and those nurf guns, and he could go hunting in your back yard.

Keep positive.

[Author]

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