age 34, just diagnosed with MDS

[Marcus]

I was diagnosed with MDS a couple of weeks ago. Mentally I'm completely fine and not fine at the same time. I'm very low risk at the moment so I'm embarrassed to be sounding worried when so many people on this site have more advanced conditions. I'm not sure what to do. I don't need any treatment yet but MDS is on my mind 75% of the time. My wife who I love very much, is 18 weeks pregnant and I don't want to tell her. In fact, I don't want to tell anyone, because I don't want to be treated differently, or with pity.

I meeting my brother tomorrow evening for a beer and have to ask him if he will have a bone marrow test to see if he might be a suitable donor. The risk of him being suitable is only 30% and because I'm a crazy mixture of races, the chances of finding a match on a register is low. I'm not sure how he will cope with the news.

I've read everything I can find on the web and am slightly obsessing with survival rates. In fact, I think I may be in slight shock at the moment. I have a great life and everything is going really well, apart from this disease.

Not telling anyone is difficult. I think that's why I'm writing this.

[Neil Cuadra]

Marcus,

You have good reason to feel shocked. With your life going great and a baby on the way, it's hard to accept an MDS diagnosis. There will always be somebody worse off, so don't feel embarrassed for asking about a "less serious" case. All MDS cases are serious, and perhaps we can help you.

Once you tell your wife, she'll be part of your support team, and you'll need that. It's hard to overestimate how important the help of your family can be. Doesn't she already sense that you are worried about something? It may soften the shock for your family if you can explain the basic treatment choices and who will be treating you. When it comes to confidence and optimism, people will take their cue from you.

Let's hope that your brother gets tested and is found to match you. The initial search of the bone marrow registry shouldn't take long. Sometimes people of differing backgrounds turn out to be matches.

My wife and I also read survival statistics right after her diagnosis. It was almost all bad news, and very scary. Only later did we realize that things weren't quite that dire. Many of the reports were for only a few patients, not a big enough population to base predictions on. Every patient is unique in some way, and none of the case studies were for patients matching my wife's age, condition, and general health. Finally, most of the studies were a few years old (some up to a decade old) and the advances in treatment had made leaps since those reports were published. I understand the urge to look for survival statistics, but it's very hard to find information that applies to you. I think that finding the best MDS doctors and studying treatment choices should be the priority.

[kmiller]

Marcus, I think I can understand a little of what you're going through. I'm 42 and recently diagnosed - going tomorrow to see a specialist to get it confirmed and talk about treatment options. I hope you'll soon include your wife and family in the discussion. I know, though, it was hard for me to say the words out loud. We still haven't told our 11 and 8 yr old boys. We plan to figure that out after we decide on a treatment approach. What type of MDS do they think you have. So far it looks like I have RAEB, type 2 (approx. 10% blasts), with trisomy 8. This stuff is all so technical, but I'm trying to learn all I can.

I thought Neil's words were very encouraging; I've been focusing on the fact that I'm relatively young and healthy, so theoretically better able to take this on.

Best of luck to you and your family. Feel free to contact me anytime. Kelly

[usaf1125]

Don't hold it in. Let people know, this isn't something to be ashamed of. You have a decease that is very treatable.

[koyotekathy]

We have all been where you are now, the only difference is the varying types of MDS/AA we or our spouses may have. There was little tact when we were first told. The doc had been playing the "wait and see" thing for several years, but I had been keeping Paul's blood test reports on a spread sheet and could see them declining. After we saw the hematologist and got the news that Paul had MDS, our doc announced this by declaring Paul should have been dead twice over by that time.

Turns out the original diagnosis was not correct. It is now three years later and after reading everything we could find and attending the Foundations wonderful annual meetings, we asked for a true second opinion (meaning completely new blood and bone marrow testing). The outcome is that Paul has a much milder form of MDS - RARS, and could coast along for the rest of his life (he's 69 now) or for at least 5 to 10 more years, with no deterioration in his condition.

The good thing (if you want to call it that) that came out of the original shock was that we immediately took stock of our total life situtation and took care of many things that we had let just coast along for another day. We also value each day far more than we did before. When you think about it, the only difference between those who know their diagnosis and have to acknowledge we are not immortal, and the rest who still have not considered their own demise, is that we got a wake up call so we wouldn't waste time on things that don't matter. This situation can draw you and your wife so much closer, so please don't leave her out.

Best wishes from Arizona.

[Steve P]

Hi Marcus,
You are certainly not alone in feeling "shocked" by your recent diagnosis. I was pretty much the same way 2 months ago when I was told that I had MDS. This forum is certainly a good place to get information, support and knowledge all of which you will need so use it. There are a lot of knowledgeable people here that can help answer your questions - just ask.
One thing I have learned over the last 2 months is that this condition really requires your effort to become as knowledgeable as you can. You will have to ultimately make decisions about your treatment options - so become informed, seek out the best doctors that you can, ask a lot of questions, and be demanding of those doctors.
There is a lot of work being done on MDS in the US and they have come a long way in a very short time - so who knows what the future will bring. As far as your wife and family I would bring them into the picture ASAP because they are going to be involved eventually anyway. No time like the present.
It's your life and in fact it's your illness - so my best advice is to take charge of it - the sooner the better!

[Kitty]

Hi Marcus,

I was just diagnosed this past June with MDS and I felt I had been given a death sentence! I was in shock and didn't know what to do. At first I didn't tell my family, but after doing lots of research online and finding this site, I went ahead and told them. They have all been very supportive and I have someone to talk to on the days I breakdown. (Less and less now.)

Now I found a great Hematologist (I dropped the first two because they wouldn't take the time to explain things to me and I just plain didn't like them) and she works together with the people at Stanford Medical Center where I go for consultation and to get ready for a bone marrow transplant when and if needed.

For the symptoms I had, my doctor thinks that I probably had this for the last ten years. I was just used to working with low energy and I didn't go to a doctor for a long time. And now she tells me she believes I have probably another ten. So maybe they caught yours at the very beginning and you have many years ahead of you. And like someone said in one of the messages they are finding new drugs and treatments for MDS they did not have before. So, I imagine that in the next few years they'll come up with better and better ways to deal with this disease.

The first few months after my diagnose were very difficult. That's all I could think about, I was scared and confussed.

Now, six months later, I went back to work and I decided I am going to enjoy every day as they come. I think about the "disease" less and less these days. The trick is to learn to live with it. You are much younger but you might have lots of good years ahead of you.

You'll hear this over and over. Become well informed because there will be decisions you'll have to make. This is a great site for that! There is always someone here that can offer information. So, feel free to ask away!
And "pick" a good doctor and a Center of Excellence. I don't know the ones in the UK but I am sure someone here will.

Find out your exact diagnose so you start getting more specific information.

Good luck to you and hung in there!

Kitty

[Tom M]

Hi Marcus - It is always a shock to find out you have a disease that can change the quality of your life. I was in shock for months, and this site really helped me gather so much information about my disease. You will find a lot of knowledgeable people here willing and ready to offer suggestions and information. All you have to do is ask.

You should enlist the support of your family members. This is not a disease one should face alone. Support is very important, and you will find your family eager to help you through the ups and downs of this disease. Secondly, learn all you can, and do not be afraid to ask your doctor questions. Knowledge is power. Lastly, do not pay attention to numbers and statistics. Everyone is affected differently, so the numbers don't really mean a whole lot.

For me, I have been reconverted back to my faith. I have the support of family and friends, and my church has been very supportive. I must admit, I didn't realize how much power there was in prayer until I was hit with this disease, but that is what works for me. I just wanted to let you know there are all kinds of support available to you, including the people on this site. You are among friends.

Stay positive.

[Marcus]

Hi,

I just thought I would write this brief note to thank you all for your kind words.

It was a while ago that I posted my previous message and although I haven't replied until now, (as odd as it may sound) I've actually looked back at your comments many times since. I don't think of myself as a particularly sentimental person (I know you Americans are far more into 'sharing' ;-) than us Brits!) but your comments really gave me some strength when I was feeling a little sorry for myself!

This is a great website! Thanks,

Marcus

[Neil Cuadra]

Marcus, it's good to hear from you again. We can't help but feel a bit worried when we don't hear from somebody for a while, even when it's a low risk case like yours. On the other hand, if you don't need to use a forum system like this because you have in-person support, family members on your team, or because your health issues are under control, that's great!

Can you give us an update on your MDS situation? We Americans are just naturally curious.

[Marcus]

Hi,

I was diagnosed with very low risk MDS about 6 months ago. My routine blood test yesterday has shown that my platelet count has plummeted from about 105 to 9. I had a BMB today and am seeing the doctor tomorrow. I'm worried that with such a sudden drop, tomorrow's news will be bad.

Because I was low risk, I was only scheduled to have blood tests every 3 months. Is this usual? I worry that our national health service's cost cutting has impacted on potential early detection, but I suppose what's done is done.

I have a twelve week old son and I am now worried that I won't see much of his life. Also, because this condition was potentially supposed to be stable for many years, I decided not to tell my wife for the time being. I will now probably have to, as she's going to spot the dressing on my back from today's BMB.

I'm slightly reeling from the potential consequences of this latest development and so apologise for this self pitying post...

On the up side, the weather in London is quite sunny.

[julie]

hi my name is julie and i live in kent i also have MDS RA , i wanted to let you know about a mds forum taking place in london on the 26 th september at the Institute of physics , 76 portland place london. you can get more information from jenny by calling her on 01844 275650 or emailing her at jenny@hartleytaylor.co.uk.
Hope you are keeping well ,as you may have found out by now, there is not much information about mds here ,as there seems to be in the US
julie x