[Bec]

Dear Margaret,

Thank you so much for info on “wicking” clothing. I just bought my son a long sleeve shirt from Walmart for football. I am going today to buy my Dad a short sleeve shirt. Bass Pro shop also has a few shirts and I found a bunch of lines on the internet.

My Dad has had this problem on and off for years. It it exciting to think you may have helped find a solution.

Thanks again. I’ll update you on how it works.

Hope you Dad gets rid of his “shakes” problem.
You are in my prayers.
Bec

[Bec]

Hey Blume and Margaret,

Thanks for update on decitibine. I have been looking for info (that I can understand ha!).

My Dad is looking into possible trial but he wants to know side effects.

Thank you again,
Bec

[Bec]

Hey Margaret,

I do not remember Dad ever having shakes but he did have to put port in chest because his good veins became scarce. My Dad has problems with night sweats that requires him to change clothes two or three times a night. This disease does weird things to all.

Make sure they are cleaning iv sites well before “sticks”. We have to insist on this at every hospital visit.

My prayers will be with you.
Bec

[Bec]

Hey Neil and Suzanne,

Thank you for responding. Dad is willing to try if side effects are not too great. Besides tx’s, he is living life “grand”. He does not even mind the weekly procrit shots now.

Neil, this month is his five year mark. I remember writing you so upset that he had beEn given five years to live. You gave us your “pep” talk about “life expectancies”. We are so blessed to have people like you to “uplift” patients and families when the DR’s can be so negative. Thank you again from our family. Positive attitude helps so much in some cases.

Dad is still laying brick on my sisters “out of Africa house.” He attends almost all of the football, volleyball, and soccer games of his 8 grandchildren that are playing. He is doing well but one thing we know now with this disease is that we treasure every day with Dad. It has also opened my eyes with other loved ones.

I try to remember to tell all that I love them quite often.

Thank you again Neil. The people on this site LOVE AND APPRECIATE you.

Bec

[Bec]

Dear Jim,
My thoughts and prayers will be with you and your family.

I hope your fond memories of your Mom will help in times of sorrow.

Bec

[Bec]

Dear Viola,

My Dad chose not to try thalidomide. He felt the side effects were too much for him because of his previous problems with kidneys and lungs. But as you have read on this forum… every patient is different and it may work for your Dad. Just read the side effects many times and make your decision.

My Dad was also on desferal pump and chose to get off of it. He beleives it was causing him to feel awful all the time. He also hated the “confinement” it caused him because he had to “hook Up” at 8:00 every night. He enjoys grandchildrens activities that are usually at night. But he knows he may have to go back on pump soon because his ferritin counts are creeping to 3000. WE keep praying for iron chelator pill.

You will find that you have to weigh all options but at times your Dad will have to take risks to see what will work for him. I beleive many will agree with me when I say that maintaining this horrible disease with tx’s is not so bad. But we keep hoping and praying for something better.

Something you may look at is procrit or aranesp. My Dad gets shots every week of procrit. This seems to work on spreading out his txs.

Your Dad is so young. I wish there was a way for your Dr.s to work with center of excellence.
I will pray for your Dad’s Drs. to seek help in treating your Dad.

Keep his spirits up. Good attitude helps.

Bec

[Bec]

Dear Terri,

Two years is great. We are hitting the five year mark. We all feel blessed for every day. I already wrote you in my update post but I have Dad juicing pineapples. One little step at a time. I hope to get him more into “natural” soon.

Thanks for all your help.

Bec

[Bec]

Dear Melody and Laura,

Dad’s Dr. said that the first trial is being used on healthy adults so Dad is waiting…..???

Thanks for responding. We are all hoping for a cure and I feel blessed so many things are being tried.

Bec

[Bec]

Hey Viola,

This web site has helped me immensely with my Dad and his mds. One thing I try to tell all new comers is to use the Search button for info about any problems you encounter with this horrible disease.

My Dad tried Revimid in Tampa. He was not successful but many people have seen results. We are looking for another trial. I am about to post Dad’s update. We are continuing to fight this disease. We ahve to leave Savannah to get any help. Dr.’s here are mainly oconologist that have very sick cancer patients to worry about.

I will pray for you and your Dad.

Bec

[Bec]

Terri,

Really strange to read these post.
Dad has been on procrit and about two weeks ago without notification they tried to switch him to another drug (not sure what) every two weeks. Mom “raised cain” and they put him back on procrit scheduled once per week.

I wonder what is going on.

Hope Bob feels better soon.

Bec

[Bec]

Dear Carrie,

Glad to hear your Dad is celebrating. He has been in my prayers and will continue to be. Hope he gets home soon.

Bec

[Bec]

Dear Kathryn,

My heart aches for you and your family. Your
Dad sounded like such a special man. Those of us with special Dad’s are so blessed to have had them. My prayers will remain with you.

Bec

[Bec]

Hey Karen,

Thank you for your letter and info. We were SO EXCITED to read about the drug approval. My Dad was on pump for 6 months. He was taken off of it when he got so sick last fall. Dr. just did ferritin test this week. I was working on computer with Dad trying to teach him how to get to site (have been trying for years HA) and we saw your letter.

Please add our names if still possible

Thanks again Becky Alford
Troy Alford
Bobby Bohler
Pat Bohler

[Bec]

Hey Billy,
My thoughts and prayers will be with you two. I hope this site will help you as much as it has helped my Dad and our family.

Something I like to point out to people is the neat search button at top of forum page. You can type in words of questions you may have and it will give you site members experiences. It took me a year before I found it.

Hope your new bride keeps getting better and take her on that honeymoon….

Bec

[Bec]

Hey Shirlsgirl,

Thanks for the info. We found number to call and they have already contacted Daddy. He is seeing regular Dr. tommorrow and is hopefully getting his approval and support in trying this drug if trial still available.

I am giving your info also.

Thanks again,

Bec

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