Looking For MDS People Who Are In Their 40s!

[alicat4790]

I am 47 years old and I have High Blasts MDS. Would love to talk with you.

Thanks,
Caroline

[katherineann59]

Hi Caroline,
I recently turned 49 and am in my 3rd year of treatment for MDS. I have good days and some not so good and then there are those when all I do is take a long "time out" to take care of myself. I've been through many different emotions in dealing with this disease. I suppose the "moment of truth" came to me when my kidney doc (I also have PKD - a kidney disease which has me extremely close to dialysis with no hope of a transplant due to MDS) told me that the PKD wasn't what was going to kill me! Anyway, the best way I cope with this disease is to recognize and not become too overly concerned with how it limits me; instead, I try to focus on what I can do to make the disease more manageable. I focus on taking care of myself and doing what works for me. I've always been athletic and even though I am no longer able to do the same amount of exercizing/competing as I could in the past, it's a great day when I can get out for a run or a swim at whatever distance works. On those days when I don't feel good, I just take it easy. I give myself a "pity party" day once every so often. On these days, I may cry, stay in bed for a lot of the day, take a day off work and just rest. I don't allow myself to dive into the gulf that seems forever just ahead. It may sound overly simple, but it works for me. I guess I would just recommend that you be as kind to yourself and your body as you can. Find a way that helps you to feel better and create a routine that works for you with allowances for the days when you just don't feel good at all. My oncology nurses are a great help as well as are the folks that write in to this forum. I've found so much support from them as they understand a lot more about what you are going through than other family and friends. If I can be of any help, please don't hesitate to contact me.

[LynnI]

Hi
47 here, MDS RA, dx this past April, my Dr. thinks I have had the MDS for a couple of years at least.
I too have always been very active and fit, he figures that is why my body was adjusting for so long and I didn't notice or stop to notice which is more likely. I just figured it was my age, lots of old injuries catching up with me and doing to much.
Agreed I have good days and bad, on those bad days I just have to manage myself and try not to do anything silly to make it worst for the following days.
Right now I am having more great days bc my meds are working awesome, so I take it and run with it.
I am also thankful, I could have this disease much worse as many others on here do or their loved ones. And my heart breaks for them, because I know their fight is so much worse than mine is at this time.
And I am thankful that it is me, instead of my 16 yr old son...........
PM me anytime if you want to talk or vent, we all understand.

[Zoe's Life]

Caroline,

Hello. I am 49, was 47 at diagnosis. I have 5q- and am stable on Aranesp. Hemoglobin sitting around 10, though at times it bounces up to 10.5ish. My disease feels more like a chronic disease that I can expect to have for some time, while struggling with medical bills and fatigue. Your struggles may be different with the high blast count (My blasts are only 4%), but I am here if you want to talk.

Zoe

[Jill2008]

Caroline,

I was diagnosed with MDS in July, at the age of 47. After 6 months of numerous tests I was referred to a Hematologist at Stanford. Because I am considered to be in the Intermediate 2 risk group, both my Hematologist and Transplant Doctor feel it is best to go forward with the BMT while I am still young and in otherwise good health. Two unrelated donors were located in just 2 1/2 months-both a perfect 10 out of 10 match. I know there are risks, but there are risks by waiting too. I will have a BMB done next week to see if there has been any progression in the disease. My last one was done almost 10 months ago. I wish you all the best!
Jill

[txplumber]

I started a website to gather more information on this disease at www.IhaveMDS.com you might find some useful information there

[Beth I]

Hi,

It was first suspected that I had MDS in July of 2007. MDS, RA, monosomy 7 (kind of) and myelofibrosis (which makes BMBs unbelievably difficult and almost impossible to get the aspiration). I've been seen at Dana Farber primarily and they recommend SCT based on, as you say, Jill, the fact that I am young and healthy (both of those are relative terms). The fact is, I feel pretty great. I am on the maximum weekly Procrit dosage. My counts are relatively stable (WBC ~ 3.5; Crit ~28; platelets in the 70s). So, why would I voluntarily go through a SCT? That is what I have been struggling with. The fibrosis scares me. The monosomy 7 is seen in a relatively small number of cells. So far the only thing that I have heard consistently from the docs that I have seen (and I have had several "second" opinions now, looking for consensus) is that there are too few people like me to figure out the optimal course of action. Wait too long, you risk AML, or the fibrosis worsens. Too soon and give up a quality of life that I can't get back. Or worse. My sister is s perfect match, so that is something in my favor.
Anyway, Caroline, I am also out here and would love to be part of a group of "peers" dealing with this.

Thanks,

Beth

[Neil Cuadra]

Beth,

It's both a blessing and a curse to be faced with the choice you have. It's a blessing that you are otherwise healthy, doing well with stable counts, are at an excellent care facility, have gotten multiple opinions, have a matched sibling, and have a choice of treatment. It's a curse that you and your doctors have to make such an important decision, about whether or not to have the stem cell transplant, without having enough information to make it clear to you what's best.

My wife and I faced something similar. Even though we had three doctors' opinions favoring a transplant, we could have said no, so the final decision was ours. We decided the transplant was the better option and in hindsight that turned out to be the right choice for us (because it was successful). But it's hard to deny that either choice was a calculated gamble.

[Beth I]

Thanks, Neil. It helps to hear that others made the right choice. Stinks that you can't know that until it's too late to go back. Consequently I change my mind every day. Sometimes dozens of times a day!

Anyway, I appreciate the outreach.

Beth

[MichelleD]

Hi,

I was diagnosed with SAA in Dec 2003. I've gone through 2 rounds of ATG and will be on cyclosporin for life. In May I found out that I have MDS and PNH. My MDS blast is small, but my PNH clone is 47%. My chromosomes have mutated, but not the normal MDS mutations. We have found an unrelated donor (10/10), but are waiting to transplant until my counts go out of remission and we have to. We aren't willing to risk the odds at this time. I have a 10 & 11 yr. old and I pray everyday that I get to be around long enough to watch them grow up. I'm here if you need me.

Michelle

[Jill2008]

Hi Caroline,
I forgot that I had posted to this thread one year ago. At that time, my doctor recommended going ahead with a SCT because my ANC was dropping. I stopped working to go through pre-transplant testing and to get things in order at home. Suddenly my counts stabilized and have been stable ever since. Now we just wait and watch. I have blood work done once a month and follow-up visits every three months. When the time comes, my transplant doctor feels we could try Revlimid and buy a little more time. For now, I'm doing pretty good but without a job. My husband feels if I go back to work, my counts will start to drop again. I hope you are doing well.
Jill

[SheWhoKnits]

Hello,

I was diagnosed with MDS at the age of 47.