I'm 46 and have diagnosed with MDS RA

[jules]

I’m so pleased i found this site have searching the Internet to find anyone with the same illness and now i have at last found somewhere. i have so many questions..it’s hard to know where to begin ,so maybe I’ll start with my story. In February this year I had continuous colds and felt really run down then a gland in my neck got so large my husband thought i had mumps ,so off i went to the doctor’s thought it was possible i had glandular fever and took a blood test was called back to repeat the blood test but not told why, then 5 days later i got a phone call from my GP to say he wanted me to see a haematologist not being too concerned at this time I went to the hospital they ran a lot of tests and i was told i had a MVC of 115 and he wasn’t sure what was causing it.he then booked me to have a biopsy of the gland in my neck which he told me could be hodgkinsons and to prepare for the worse was.I horrified, but when I went to have the biopsy the consultant assured me the biopsy from what he could see was fine I felt happy.then a week later I went back to the haematologist who then arranged for me to have a bone marrow biopsy, and was diagnosed with MDS RA. He gave me a leaflet on MDS which explained my life expectancy to be between 3 to 5 years and my life has been turned upside down ever since.no one i know has ever herd of this illness.what makes things worse is I’m on a wait watch policy so i wont go back to see him until January.has any one else had infections before they were diagnosed?in fact i still am getting cold after cold.I’ve noticed most people on this site are American and i wonder if your treatments are any different to those in England?

[Zoe]

Jules,

Welcome to the forum. I would not be ready to accept the 3-5 year life expectancy. There are many factors affecting MDS. Do you have any chromosome abnormallities? What is your hemoglobin? How about your white counts and platelets? Sounds like you may have problems with your white counts if you are frequently getting sick. Do you have excess blasts? I ask for copies of everything.

Statistics show that as a patient under 60 with 5q- (my chromosome abnormality) I have a median life expectancy of about 12 years. However, there are many people on this board who have outlived expectations. My doctor recently told me about a patient of hers who is still alive after 30 years with 5q-. There was a study done in Germany which showed that low risk patients under 50 years old had not met median life expectancy at 20 years (in fact 86% were still alive and kicking).

There are a lot of new treatments coming out all the time. You are young and that is definately in your favor. Research and learn all you can. Ask questions. Find out how familiar your doctor is with MDS. It is worth having one who is familiar with the disease.

I am glad you found us,
Zoe

[626eer]

Jules,
Many resources available here and on the internet. Do not read too much into statistics as they are often outdated and newer treatment modalities are out there. MDS and each subtype are different and their progression is different with each individual. Best thing to do is learn. The better you know your opponent, the better you will do in fighting it.

[Bec]

Hey Jules, My Dad was diagnoised 7 years ago with RA. Do not beleive the stats. He is doing better today than he was when he was first diagnoised. Ignore the gloom and doom Drs can tell you but sift through the valuable info on this site. FIND a GREAT DR. This would be a Dr. that knows MDS but if you can not find one near then look for Dr that is willing to try new things and willing to accept your suggestions. I contribute this web site to my Dad being still alive and healthy ( and of course much prayer). The comments on this site have lifted him up at times and given him hope when he was down.

Remember, this is all overwelming at first. But for specific questions, put them in this search engine and it will help. Dumb me did not find search for a year so I tell all to check it out.

Also remember that everyone with MDS is different. Hopefully, your Dr. can start you on a regiment that will keep you tx free forever. There is so much research going on.
I will pray for you.
Bec

[Ira N.]

Hi Jules,

I was also diagnosed RA in November 06. I was serverely anemic and needed tx of 2 units every week. My counts were HGB 6-7, WBC 1-1.5, Platelets 20K. I was told that there is no known cure for MDS. In Feb 07 I started a clinical trial involving 2 drugs – Vidaza and an experimental drug called Vorinistat or SAHA. After the 2nd cycle my counts started to improve and I was having fewer tx’s. By the end of the 4th cycle ( 4 months) my levels reached “normal” and I stopped needing txs. At the end of 7 cycles my levels were all well into the normal ranges, my doctor advised me that I’d had a “complete response”, and I stopped taking the medications. That was 10 weeks ago and my levels have all maintained so far and I feel GREAT! THERE IS HOPE, and I do not believe that I have an expiration date! Jules, see thread “latest Vorinistat results” to see my story so far.

My doctor told me the first time I met with him
“you are going to get better”. He never mentioned an expiration date. He told me “there are many new treatment possibilities and we will find one that works for you”. I believe him.

Wishing you Peace, Love, and Health,

Ira

[DonUK]

Hi Jules,

It may be worth getting a referral to an MDS centre of excellence. There are a few in the UK (I think there is a link on this site somewhere).

I’m in Kent too, and I believe the two closest are one in Southampton and Kings College Hospital

Are you needing transfusions or anything ?

Take care,
Don

[Louise71]

Hi there Jules. I have also been recently diagnosed with MDS-RA. I am 36 years old, and haven’t experienced any infections prior to my diagnosis. I am also on watch and wait, but am planning to push my hematologist and an MDS specialist to see if there’s anything else I might do–diet, exercise, clinical trials, etc.

I have heard lots of conflicting information about MDS-RA. The 3-5 years is definitely the worst, and on the other side of the spectrum is this information on the leukemia website. (see below)
http://www.leukemia-lymphoma.org/all_page?item_id=55445
The information here seems rather optimistic compared to other official stats I have read. Does anyone have thoughts on this?

Thanks again, and best to you Jules. It’s terribly hard to receive this info, but on the brighter side, it feels better (for me at least) to know as much as I can and to be prepared.

Louise

[paml]

Dear Jules and Louise,

Hi my name is Pam. I wanted to write to let you know that there are significant variations to the disease MDS-RA. MDS is not one disease that it is a collection of diseases with many symptoms, outcomes and treatment efficacies. RA patients, as is with other categories are lumped into the same disease only because of our bone marrow profiles, which may or may not remain stable through time and/or disease progression.

As new patients we must rely on our physicians, second opinions, treatment options, and the experiences of others that have come before us. I empathize with the difficulty with the “watch and wait” philosophy that many doctors propose. With that said, “watch and wait” can be sound advise under certain conditions such as, but not limited to, patient stability, symptoms, quality of life, treatment options (do no harm), etc. For each of us there are pros and cons to each of these variables. This is particularly difficult because in the end we do what is right at the time without the benefit of clairvoyance. As patients, as I’m sure as it is for caregivers, nothing is more disheartening to hear than “I wish I had …”.

I’ve been a hematology patient since 1989. I was one of those patients where detection was made very early, prior to the ability to definitively diagnose MDS, though suspected. My treatment, for the duration has been “watch and wait”. I’ve been on growth factors but am now and have been treatment free since 4/2005. For me, after the initial emotional upheaval of the diagnosis and going through the ups and downs of being symptomatic then not and so on, I’m comfortable it. I am one of the lucky ones no doubt. This is not to say that when I get sick that I don’t worry or that before blood draws that I don’t fret – I still do. MDS is not who I am – for me it’s a chronic illness, there are days that I no longer even think about it. It’s taken a long time to get to this place, but I’ve also been at this for 18 years. I started at age 31 and am now 49. It’s a life of one foot in front of the other, and one day at a time.

Hoping that my (another patients) perspective is helpful and hopeful. Arm yourselves, learn all you can educate – educate.

Best Wishes,
Pam L.

[Louise71]

Hi Pam and thank you so much for your response and for sharing your experience. It’s really hopeful to know that there’s the possibility of living with this and not letting it define your life. I’m hoping that I might get to that stage, and it’s good to know that presently feeling knee-deep in the worry and anxiety of it all may not last forever!

I have about a dozen other questions I’d like to ask you if you don’t mind, but for now I just wanted to say thanks for your supportive words and for taking the time to write. Your perspective on both the physical and emotional aspects of dealing with MDS are much appreciated!

All the Best,
Louise

[Anne G]

Jules

I have been diagnosed at 39 as having RCMD.(that was 3 yrs ago). You will see on this site(which is a god send, so much experience and expertise) that there are various types of mds and not one every type is treated the same way or has a specific pattern and that some people have had chronic disease for many years.(agree with Paml)

Initally when your are diagnosed you have MDS it hits home hard.

Everyone’s life expectancy is different too. Live life to the max. Do lots of things on the good days and rest on the bad. Think of yourself as being fortunate and having a window in your life to do the things that you would normally have put off. There are other people who are less fortuate than ourselves. When they are told months rather than years.

It is very difficult to get information and books in the UK and you will probably find that you end up educating your GP. That is why this site is invaluable.

regards
Anne

[Anne G]

jules

what I have written does not tie up with my foot note. I was diagnosed as having RCMD in june 2005 after a 2nd bone marrow. had attended hospital from jan 05 and had been diagnosed as having RAEB-1 (hospital made an error) hence the reason for saying 3yrs.

anne

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