about my father

[VIOLA]

Hi,my name is Violet, I live in centre of Poland, in the small city near LODZ.My Father (55 years of age) is the patient with myelodysplastic syndromes with deletion in the long arm of chromosomes 5 {5q), My grandfather deads on the same or similar disease. Time from diagnosis in my Father is 2 years. In this time he received erythropoietin for 3 month, Neoral and Danazol also for 3 month – without result. Moreover he is transfusion-dependent ( 1 time at the month). Generally Father is in good health, but in regard to his age, the doctors not qualify him for allogeneic hematopoietic stem cell transplantation., because of major transplant complication, graft-versus-host disease (GVHD). During the hematological consultation in Clinical in Warsaw, one of the doctor said that REVLIMID has been investigated in two large Phase II trials in patients with the 5q- syndrome and in patients with non-5q- low-grade MDS and REVLIMID is effective in MDS 5q. It was for as like the light in a tunnel, but the bad new was that it is not feasible in Poland. We come to know that REVLIMID is an analogue of THALIDOMIDE and we trying for approval to treatment with THALIDOMIDE and for refund it. Unfortunately … my country has no money for treatment people, which are in age beyond 50 years old. I can not reconciled with such reality!!! I not agree to this!!!My father is a wonderful man. I love him very, very much!!! My father is only 55 years old ….. The doctor of my father finnaly accept treatmant with Thalidomide but only for 2 month. I am afraid of too short period!? Mooreover last trepanobiopsy apears that this MDS has a feature of the chronic myeloproliferative disorders. I′am very sorry for grammatical and vocabulary error, but my English is not very good. When I am on this forum I don’t feel alone! Thak You!!! I wish You good luck!

[margota1]

Good morning Viola,
You are such an asset to your family and obviously you have done your homework! All I can tell you is don’t give up. We have been through just about every treatment approved and in fact going to UAB in Birmingham today. We are requesting that Lee get on the list for clinical trials, 3rd stage, for Revlimid after the Oct. 7 date. Lee has been tranfusion dependent every 3 weeks. He has been on a pump to remove the iron overload for over a year. He works out 5 days a week, works full time and very active in the Men’s Min. at church. All this to say, keep on keeping on. So much has happended since Lee was first DX. 2 years ago gives us such hope. I’ll be watching out for you here. God bless you and yours, Margot

[VIOLA]

Thank You Margota and best wishes for You and for Lee!!!

[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

[VIOLA]

Hey Bec!Thank You for Your player! Yes, it is horrible disease. I had read about Revlimid which is effective in MDS 5Q. Unfortunately, in my coutry he is unattainable. We trying for treatment Thalidomide. Perhaps, it will be possible, but only by 2 mounth and I am concerred about too short period. We herd that Thalidomide may be useful in treatment of refactory anemia and produced transfusion independens in long-standing RA of patietns with MDS, especjally those who present without blast. My Dad preseny without blast but I’m afraid of disease transformation and negative reactionns.If I READ WELL, yOUR Dad also has’t blast? I’m very sorry to hear that Revlimid was not succesful in treatment of Your Dad, but I beleive that another drug will be effective!!!Bec! Best wishes for You and for Your Dad!I also will pray!
I want also ask You… Does anynoe know somathimg more about treatmant Thalidomide of MDS with 5q?I want also ask You for Desferal pump? My Dad has taken around 20 tranfusion, but his doctor said that it is too early yet on Desferal? I’m soory , my Engish is not very good

[margota1]

Viola, Lee was started on Desferal after 25 units of RBC’s. The ferritin level should be monitored and that will dictate when to begin. I will say that early on Lee really resented having to do this and would only let me start it at night. Now he understands that in order to protect him from the complications of iron overload this is it or else. At the confer. in Denver last month they had a count down of who had been transfued the most and I believe someone had over 1000 units. Also it looks like the oral iron chelator will be out for phase 3 trails later this year. The results so far is very promising! Once on Desferal it is very important to have regular eye checks. Your English is just great, I wish I could spell it as well as you speak it!

[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

[JulieMarie]

Dear Viola,

My mom also awaits revlimid trial or the approval in October here in the US. Her dr. has her on a wait and see what happens in October right now. There is a open case for Revlimid (at least last month there was) in Scottland. Mom actually talked to the dr. on the phone for 1/2 hour he said she’d be a prime canidate, but US patients going over seas is just about improssible and well it would more than likely be after October before we’d get the ok so only if it’s not approved here in the US would we venture down that road. Don’t stop fighting just because your goverment won’t approve a drug that could cure your dad. we as caregivers have to put the boxing gloves on, stay positive and fight til the end. Our love ones seeing us fight so hard for them will give them more power to fight right along with us.

[VIOLA]

Dear Margota, Bec, JuliMarie!
Thank You very much for Your post and information. I’m very pleased with it!!! It is so difficult. I try read everything about my Dad’s disease and sometimes it seems to me that the more I know, the chance my Fathers will be major. I will don’t stop fighting, because I love my Dad and I’m lucky that I have my family!
JuliMarie! I hope Your Mom will participate in trial with Revlimid and he will be effective for Her! Your Mother is also so young and I believe that You will enjoy life. I wish You and Yours family only wonderful moment!!! I would like share with You my feelings and my thinking, but I have a problem with language.
Bec! Thank You for Your words. Good bless You and Yours.

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