Myelodysplastic Syndrome preleukemia

nsilvey

Hello my name is Nancy and I am 38 yrs. old. I was diagnosed with Hogkins Disease in 1996, I did a year of chemo. which put it into remisson, but three months later I was diagnosed with MDS. I eventually had a Allogeneic Stem cell transplant in Sept. 1999. And I basically have been doing pretty good I have not been able to return to work yet. I have ran into other illnesses since the transplant. I really didn't have much trouble with graph viruses host disease but I ran into trouble with alleric reactions to different things that never bothered me before. I also have alot of bone density loss, mainly in my hips. But it does get pretty frustrating, cause it seems that it is never ending. But I will never give up, but I was wondering if there was anyone out there that has come down with the MDS disease? It is really hard to find much info on this disease.

gordon711

Hello, I'm Gordon, aged 70 and I've just signed in to this site today. I have been diagnosed with MDS October 2002. I previously had kidney cancer in 1991 & bladder cancer in 1997. The first thing I found on this site was info about a mulitude of different types of MDS. I've not been told what type I have, so I am totally mystified. Have they given you a specific type of diagnosis? I am on Procrit and holding at 11.5 up from 8.6.

Lalcorn

gordon711 said:

Hello, I'm Gordon, aged 70 and I've just signed in to this site today. I have been diagnosed with MDS October 2002. I previously had kidney cancer in 1991 & bladder cancer in 1997. The first thing I found on this site was info about a mulitude of different types of MDS. I've not been told what type I have, so I am totally mystified. Have they given you a specific type of diagnosis? I am on Procrit and holding at 11.5 up from 8.6.

Hello, my name is Laurie, my father was diagnosed with MDS 1 1/2 years ago. He is currently in a Moderate stage 2 with the disease. Information is hard to find, answers even harder. He lives in Montana in a very small community and needs to travel for medical attention. Procrit is not an option for him per the lastest blood test results. He now has pain in his legs, hips and neck. My father has not had any prior battles with any form of cancer. Blood transfusion are at once a month but the doctors have advise that this will not work much longer and have advised experimental drugs. I have done a lot of research on the Internet but nothing remarkable to report.

cathyking

Hi Nancy. My name is Cathy King and I am also a survivor of MDS. 7 1/2 years post-transplant now. It's rare to find another woman so young to have had this disease. If I can help in any way, even by listening, please don't hesitate to ask. I am now 36. I was 28 when I had the transplant. I still struggle with the most annoying things, but we are alive! I'd love to hear from you. Where are you from? Take care. Cathy

mdsmom

cathyking said:

Hi Nancy. My name is Cathy King and I am also a survivor of MDS. 7 1/2 years post-transplant now. It's rare to find another woman so young to have had this disease. If I can help in any way, even by listening, please don't hesitate to ask. I am now 36. I was 28 when I had the transplant. I still struggle with the most annoying things, but we are alive! I'd love to hear from you. Where are you from? Take care. Cathy

I have searched for someone near my daughters age (23 when diagnosed with RAEB) with MDS. She finished chemo last month and returned to work this week. A suitable donor has not been located YET for a transplant and I really don't know what to expect or when (neither do the doctors). All we hear is that it will come back. The oncologists seemed surprised that she had the disease and that she tolerated the massive dosage of chemo so well. Her WBC is 5.0 and platelet at 260K after 8 months of chemo. Any info is valuable re: your story. She has a 17 month old son. Thanks

AuthorUnknown

mdsmom said:

I have searched for someone near my daughters age (23 when diagnosed with RAEB) with MDS. She finished chemo last month and returned to work this week. A suitable donor has not been located YET for a transplant and I really don't know what to expect or when (neither do the doctors). All we hear is that it will come back. The oncologists seemed surprised that she had the disease and that she tolerated the massive dosage of chemo so well. Her WBC is 5.0 and platelet at 260K after 8 months of chemo. Any info is valuable re: your story. She has a 17 month old son. Thanks

Hi my name is clare. My son was 16 when he was diagnosed with mds(raeb)in 2000. He had one intensive course of idarubicin,cytarabine and etopiside followed by 2 consolidation courses of the same drugs. By the way his cytogenic abnormality was t(3,5). He was in complete remission for 4 years and recently relapsed with the same mds diagnosis as previously. He has just finished a course of chemo (fludarabine,cytarabine and idarubicin)and we are seaching for a donor for bmt.After 4 years I thought he had beaten mds and it was devastating for us all to discover it was back. He was having his regular 6 month blood check up and was feeling great when we got the relapse diagnosis. He had to stop work immediately and start treatment, his friends are also in shock but are very supportive and keep his spirits up. Just one thing, if your daughter is in remission has she had some stem cells harvested and stored for future possible autologous transplant if needed.
Best wishes and enjoy remission as much as you can, my son has had a fabulous 4 years and fingers crossed we can find a donor and eventually beat this disease.

mdsmom

AuthorUnknown said:

Hi my name is clare. My son was 16 when he was diagnosed with mds(raeb)in 2000. He had one intensive course of idarubicin,cytarabine and etopiside followed by 2 consolidation courses of the same drugs. By the way his cytogenic abnormality was t(3,5). He was in complete remission for 4 years and recently relapsed with the same mds diagnosis as previously. He has just finished a course of chemo (fludarabine,cytarabine and idarubicin)and we are seaching for a donor for bmt.After 4 years I thought he had beaten mds and it was devastating for us all to discover it was back. He was having his regular 6 month blood check up and was feeling great when we got the relapse diagnosis. He had to stop work immediately and start treatment, his friends are also in shock but are very supportive and keep his spirits up. Just one thing, if your daughter is in remission has she had some stem cells harvested and stored for future possible autologous transplant if needed.
Best wishes and enjoy remission as much as you can, my son has had a fabulous 4 years and fingers crossed we can find a donor and eventually beat this disease.

Hello Clare,you are the person I've been searching for! I am so sorry about your sons diagnosis. Your message was pretty much what I expected (I'm having a hard time deciding whether I really want to know). I'm just praying we will have a few years too. Did the cancer come back as MDS or AML? His chemo regimen sounds almost exactly like my daughters. Thank you so much for the suggestion about collecting stem cells. The doctors had not even mentioned that to us and it makes perfect sense. I know how hard it must be, but could we communicate by email? My address is posted in my profile. Whenever you want to talk, I'll listen.

crisllane

Nancy, I too am a 36 year old mother of three ( well 2 step and 1 natural) children. I too have MDS. My oncologist sent me to Duke and I have a 12 of 12 match - actually, to be completely blessed I had two but they chose the best of those two. However, I've just finished an "ATG" treatment..which is horse seriulm that is supposed to knock my T-cells and hopefully make my body produce blood. Otherwise, I'm getting transfusions of red blood cells about weekly now. Also, I've been getting platelet transfusions. However, since the ATG for the first time my platelets have hit 37. I have not seen 37 since February, 2004 which is the month I was diagnosed. I'd love to talk to you. Please email me or something. People look at me and think I look perfectly healthy. However, if they spent a day with me they would learn different. There is NO ONE our age out there to talk to and I really need an MDS friend to compare notes with. I'm sure you could use one too. We can beat this - let's just stick together. Hope to hear from you soon! Christine

westexman

crisllane said:

Nancy, I too am a 36 year old mother of three ( well 2 step and 1 natural) children. I too have MDS. My oncologist sent me to Duke and I have a 12 of 12 match - actually, to be completely blessed I had two but they chose the best of those two. However, I've just finished an "ATG" treatment..which is horse seriulm that is supposed to knock my T-cells and hopefully make my body produce blood. Otherwise, I'm getting transfusions of red blood cells about weekly now. Also, I've been getting platelet transfusions. However, since the ATG for the first time my platelets have hit 37. I have not seen 37 since February, 2004 which is the month I was diagnosed. I'd love to talk to you. Please email me or something. People look at me and think I look perfectly healthy. However, if they spent a day with me they would learn different. There is NO ONE our age out there to talk to and I really need an MDS friend to compare notes with. I'm sure you could use one too. We can beat this - let's just stick together. Hope to hear from you soon! Christine

Myelodysplastic syndrome with myelofibrosis
My sister has been diagnosed with Myelodisplastic syndrome with Myelofibrosis. Currently, her liver and spleen are healthy so I guess she is in the early stage of the disease. She is receiving blood transfusions once a month. Her doctor prescribed REVLIMID for treatment for it. I wonder if anyone has ever used this drug and what results they have had. It is a very expensive drug at $5000 a month and she can't afford it if her insurance carrier does not pay for it. Besides me, she has 5 more family members that are willing to donate fro a transplant. I wonder if a transplant if a viable option.

Rahyen

westexman said:

Myelodysplastic syndrome with myelofibrosis
My sister has been diagnosed with Myelodisplastic syndrome with Myelofibrosis. Currently, her liver and spleen are healthy so I guess she is in the early stage of the disease. She is receiving blood transfusions once a month. Her doctor prescribed REVLIMID for treatment for it. I wonder if anyone has ever used this drug and what results they have had. It is a very expensive drug at $5000 a month and she can't afford it if her insurance carrier does not pay for it. Besides me, she has 5 more family members that are willing to donate fro a transplant. I wonder if a transplant if a viable option.

My fiance was just diagnosed with this and he is being put on Revlimid. He has NO insurance and obviously no income so they DO have a program that covers the meds. You just need to go to the website and find the link to the company that actually makes this drug. Its called Celgene, the people that are really super to deal with and they will help you out. By the way this drug eliminates the need for blood transfusions so its a great drug and has has great results. Too many transfusions can cause iron overload which is NOT good because than they need different drugs to deal with that. According to his doctor evetually he will need a transplant. The main thing right now is to get going on this drug so there won't be any need for transfusions. The Revlimid here is 9000.00. Can you tell I have really been reading alot lol. Take care and help her to get going on this drug she needs to take it from everything I have read. Hope I helped. Rahyen

westexman

Rahyen said:

My fiance was just diagnosed with this and he is being put on Revlimid. He has NO insurance and obviously no income so they DO have a program that covers the meds. You just need to go to the website and find the link to the company that actually makes this drug. Its called Celgene, the people that are really super to deal with and they will help you out. By the way this drug eliminates the need for blood transfusions so its a great drug and has has great results. Too many transfusions can cause iron overload which is NOT good because than they need different drugs to deal with that. According to his doctor evetually he will need a transplant. The main thing right now is to get going on this drug so there won't be any need for transfusions. The Revlimid here is 9000.00. Can you tell I have really been reading alot lol. Take care and help her to get going on this drug she needs to take it from everything I have read. Hope I helped. Rahyen

My sister is taking the revlimid and it seems to be helping. She did have an allergic reaction to the drug and the doctor also prescribed benadryl, which for now has stopped the allergic reaction. By the way she has blue cross blue shield and Aetna insurance and the blue cross is paying all but $35 month for the drug and the cost is almost $9000.
I do hope that this puts her disease in remission and she will noonger need monthly blood transfusioins.

Unknown

This comment has been removed by the Moderator

justbychance

westexman said:

My sister is taking the revlimid and it seems to be helping. She did have an allergic reaction to the drug and the doctor also prescribed benadryl, which for now has stopped the allergic reaction. By the way she has blue cross blue shield and Aetna insurance and the blue cross is paying all but $35 month for the drug and the cost is almost $9000.
I do hope that this puts her disease in remission and she will noonger need monthly blood transfusioins.

I was diagnose with myelofibrosis in April of this year 2009. I had to have blood transfusions and a splenectomy. My spleen was over 5lbs, they took a liver and lymph node biopsy and the myelofibrosis has spread to those organs also, they tried a low dosage chemo pill called revlimid and I have so many different allergies to medicines that I couldn’t take it. I got a reaction of dinner plate size hives from it. I was taken off of it for 30 days and now they are going to try a low dose of hydroxyurea and see how I get alone with that. They remove my spleen not only of it size which was taking up all the room form other organs, I was having very high fevers, losing a lot of weight, bad mouth sores, red blood count and platelets very low, but white count high and other different things and had to have blood transfusions. When removing it they found it had attached itself to my diaphragm for more blood supply, which was causing me to be anemia and having breathing problems and heart palliations which didn’t realize how bad they was. Three years ago I was diagnose with breast cancer had an lumpectomy and radiation, then they found I had a factor V deficiency which cause me to have a deep vein blood clot in my leg and is being treated with warfarin, then later start having female bleeding which they done d&c and a procedure called nova sure which none helped which was sure it would,, but they think now the warfarin and the myelofibrosis combined is not helping that problem,it could be causing some of it. The symptoms that I was having with the spleen was coming and going over a year before diagnose with myelofibrosis because they was looking for something with breast cancer. My white blood count and platelets is high right now. The revlimid was helping the platelets but the Eos was extremely high because of the reaction and the white count was getting higher. I was 48 when diagnose with myelofibrosis. Just wondering has anyone experience any symptoms like this and had to get there spleen removed and is close to my age. Also I have bad aches and pains within the ribs and elbows and some of the other joints. Please let me know. Does anyone know if there is a certain age for bone marrow transplant (someone told me some places doesn’t like to do them after age 40) and can you receive one with out a spleen.

JENNACASEY

HI
YES I CAME DOWN WITH IT BUT I GOT IT BEFORE THE CHEMO I AM 37 YRS OLD AND HAVE A 6 YEARS OLD CHILD. YES IT IS HARD TO FIND STUFF ON MDS. I HAVE TO DO ALOT OF TRANSFUTIONS BLOOD AND PLATELTS. ALOT .MY DR.S WANT ME TO DO A BONE MORROW TRANSPLANT COMING THIS FEB. 2010. AND I AM SO SCARED BECAUSE I HAVE TO DO IT BY A DONOR AND THEY ARE TELLING ME THAT ALOT COULD GO WRONG BECAUSE OF IT.I WILL NOT GIVE UP BUT WHY DO WE HAVE TO GO THREW SO MUCH. PLEASE WRITE ME BACK. JENNA CASEY JENNACASEY3@AOL.COM

westexman

Rahyen said:

My fiance was just diagnosed with this and he is being put on Revlimid. He has NO insurance and obviously no income so they DO have a program that covers the meds. You just need to go to the website and find the link to the company that actually makes this drug. Its called Celgene, the people that are really super to deal with and they will help you out. By the way this drug eliminates the need for blood transfusions so its a great drug and has has great results. Too many transfusions can cause iron overload which is NOT good because than they need different drugs to deal with that. According to his doctor evetually he will need a transplant. The main thing right now is to get going on this drug so there won't be any need for transfusions. The Revlimid here is 9000.00. Can you tell I have really been reading alot lol. Take care and help her to get going on this drug she needs to take it from everything I have read. Hope I helped. Rahyen

Here is a Canadaian website that has the drug http://www.northdrugstore.com/buy-Revlimid.html. The prices are a lot cheaper than $9000

MADORMANN

cathyking said:

Hi Nancy. My name is Cathy King and I am also a survivor of MDS. 7 1/2 years post-transplant now. It's rare to find another woman so young to have had this disease. If I can help in any way, even by listening, please don't hesitate to ask. I am now 36. I was 28 when I had the transplant. I still struggle with the most annoying things, but we are alive! I'd love to hear from you. Where are you from? Take care. Cathy

TALK TO CATHY KING
HI CATHY KING I WANT TO TALK TO YOU ABOUT MY SON KGERARD ONLY 46 AND HAS MDS HOW CAN I OPEN UP YOUR NOTE PAPGE AND TALK TO YOU?MARY ON TO MANY TIMES HOW DO I TAKE THEM OFF? WHERE IS CATHY KING LIKE TO FIND HER, MARY

MADORMANN

NANCY 2001 HAVE TO UP DATE
NANCY 2001 HAVE TO UP DATE THIS PAGE AND BRING IT TO CURRENT TIMES. WHERE ARE NANCY AND CAROL KING? MARY

DeborahCalvert

Forme Fruste of a Myelodysplastic Syndrome
I was diagnosed in 2007 with MD, after having pre-cancerous tumor removed from my pancreas. I also had my spleen removed since it shared the same blood supply with the tumor. UCLA stated due to the results of the CD10 expression I had 2 weeks to 2 months before it'd have turned to cancer and there would have been absolutely no hope. Some miracle I'm living. Anyway, since my pancreatic tumor surgery in 2006 I have never felt the same. I tire easy, out of breath, sleep alot, amazing change. Dr diagnosed me with fibromyalgia in 2008. Just in late 2009 I've come to realize I can't continue fooling myself -I'm sick. It's not easy to admit that and seek treatment.
My "numbers" aren't too high yet to warrant treatment for MDS. But my platelets have been 750,000; wbc 18,000; rbc low low low! Anemic low. They say when my platelets hit 1,000,000 they'll treat me.
Anyone else like me out there?

lprestel

Hi, I'm Wen and I am 25
Hi, I'm Wen and I am 25 years old. I was diagnosed with MDS 2 1/2 years ago - the day I found out I was pregnant! They really haven't done much treatment for me yet. I have only had issues with my platelet count right now. I had to have 25+ infusions when I was pregnant and after childbirth but thankfully nothing since. I was also trying to find out some more information on it. My husband and I are considering having another child and we were told that 25% of people diagnosed with the type of MDS that I have get Leukemia within 10 years from diagnosis. I was trying to find out what sort of things to expect in the future as this disease progresses. Good luck with your treatments and keep that chin up!

lprestel

Hi, I'm Wen and I am 25
Hi, I'm Wen and I am 25 years old. I was diagnosed with MDS 2 1/2 years ago - the day I found out I was pregnant! They really haven't done much treatment for me yet. I have only had issues with my platelet count right now. I had to have 25+ infusions when I was pregnant and after childbirth but thankfully nothing since. I was also trying to find out some more information on it. My husband and I are considering having another child and we were told that 25% of people diagnosed with the type of MDS that I have get Leukemia within 10 years from diagnosis. I was trying to find out what sort of things to expect in the future as this disease progresses. Good luck with your treatments and keep that chin up!

Marion58

This reply is for Wen (Ipretel)
Wen,

I believe there is treatment for every type and level of MDS. Are you under the care of a hematologist/oncologist? If not you should consult one and should also do all the research you can yourself. Without treatment MDS normally progresses. If treated in the lowest risk stage progression is sometimes avoided. I know someone who gives himself 2 injections per week. The objective is to prevent progression - it sometimes progresses anyway, but not always.

I have MDS, Refractory Anemia with Excessive Blasts, type 2 - this is a high-risk stage and requires more aggressive treatment. I just finished my fourth month of Vidaza (5-Azacytidine). Although my latest bone marrow aspiration shows that the treatments are working (my blasts are down from 17% to 8%) and although the doctor's are trying to get me to remission, at this stage any remission is only temporary. I'm supposed to have a stem cell transplant after the first of the year. My brother is a match, so I'm blessed to have a sibling donor.

You could also research MDS on the Fred Hutchison (Seattle Cancer Hospital) website and on the MD Anderson web site. My hematologist referred me to a doctor at MD Anderson who is an MDS expert. Since MDS is kind of rare, especially for someone your age, there aren't many doctors who are experts. Please get the best care available - you are very young and an MDS expert can guide you towards your best chance at good health and long life. If you end up needing a stem cell transplant your young age is very much in your favor.

Although I am 58 there are no other health issues and the doctors think I will do well with a transplant. You are less than half my age and would probably do even better if that is something you need.

The Seattle Cancer Center and MD Anderson in Houston probably do more stem cell transplants than any other hospital - In Seattle they claim to have perfected the procedure. At MD Anderson they do approximately 600 per year.

God bless you.