Cheryl,

Welcome to our little world. As Gayle said, some of our members have not posted in a while (don't know why).

I'm not in your mom's 5q category, but I'm in the next best. My Dr said 5q is the best of the various kinds.

I have no personal knowledge about Revlimid, & I believe that it's specifically aimed at 5q folks. I'm on Aranesp, & a few days after my first injection, I had some problems. Turned out to be a coincidence, & I've had no further difficulty. I'm grateful to know that it's helping me, because now I can look forward to more good time before the disease progresses.

As diseases go, it doesn't seem to be an awful one. Tiredness is the greatest complaint by far. I don't know of anyone who is in pain because of it, like some other forms of cancer.

How old is your mom, & did they give her a life expectancy table? I'll bet you have her around a lot longer than you think if she's recently been diagnosed.

Chris, of course, is now into acute leukemia, but he doesn't let that stop him. Those bloody Brits are tough!

Let us know more data on your mom's blood tests.

Hello again and thank you all for responding!

Gayle and Lou, I saw from reading the posts that you seem to be the newest to this group. How are things going for Lou? What treatment is he getting?

Chris, You seem to have a great personality. I've enjoyed your humor along with your educational information!

Birdmom, you asked how old my Mom is. She is 68. A very young 68. She has always been healty and younger than her years. I don't know that she has been given a life expectancy table. If she has, she hasn't told me. She is going to ask for a copy of her next blood test when she goes to the doctors on Nove 2. Her last blood test showed a count of 8.8 and then the lastest was 9 after taking the Revlimid for 2 weeks. Her doctor has mentioned giving her the Aranesp injection along with the Revlimid. Only discussed as of now though.

Thank you again for responding. I will be checking in often and keep you posted on Mom's blood tests and such, and looking to you for your knowledge on this. We are still a little confused and unsure of all of this. The reality of this has just recently set in for me.

Take care,
Cheryl

I was dianosed in July 09, given very little info on MDS! Most of info I've gotten was on internet. Finally asked dr about pronosis and he said 5-10 years. So far only on Procuit, had 3 shots. Haven't told growwn daughter yet! Still kind of dazed about having CANCER! Red about not taking Tylenol. Concerned my dr don't give much information!

Dimples and Cheryl,

You have nothing much to fear. I shall reach heaven or hell long before you, but I'll speak to St Peter and see if there is space for you in years to come.

An MDS sufferer, is often tired, always clotless, and suffers from a deficiency of something white and something red in their circulation. So drink a pint of milk, and a bottle of claret a day, and if nothing else you'll avoid a stomach ulcer and be happy !!!

Don't worry too much, MDS does not kill us, it will be the infection that sends us packing.!!

Christopher.

Just wanted to be the 200th contributor to this column. Got there before you girls. Ha Ha.!!!
Christopher.

Chris - ha, you beat me...I wanted spot #200. Guess I'll have to settle for #200 when we get there.

Dimples1 - what's your age? What testing was done for your doctor to make his diagnosis? Was it a bone marrow biopsy?

My husband hasn't yet told his grown daughter of his diagnosis. We've been waiting for the right time and would prefer to do it in person. Is that wrong?

Gayle

Christopher
So what you are saying is that my Mom needs to be very careful about being aroung sick people. I'm concerned because she smokes (she is trying to quit) and that makes her more prone to upper respitory infections anyway. Is that the type of infection you mean?

By they way, I appreciate the good words to St. Peter :)

Dimples, I understand exactly where you are. We're still trying to figure this thing out too. If you don't mind me saying, I think you should tell your daughter. She would be a great source of support for you.

Cheryl

Hi Gayle. Has Lou had any side effects from the procrit? I don't think wanting to tell Lou's daughter face to face is wrong.

It sounds like you have to be quick to get one over on Christopher, haha.

Chris, you are way too fast for me.

You might talk to St Peter, but I would have you know that I touched St Peter's feet while in the Vatican. So there!

Welcome, Dimples. I still say that as diseases go, this one isn't so bad. I was certain that I would never have cancer, from the core of my being, but cancer of the blood/bone marrow told me differently. But think of other kinds of cancer, & how relatively easy we MDS folks have it. Even Chris, who has reached the acute leukemia stage, is upbeat.

Cheryl, your mom is 68. Well, I'm 70, & otherwise pretty darned healthy. I line dance twice a week, I'm a gardener, & active on various committees. It simply means that you have to know your limits.

My family & close friends know that I have MDS, but the majority of people I deal with have no clue--yet!

Actually, because of the normally long lifespan prognosis, it gives us time to think things through. My original life span, given nearly 2 years ago, was 7-10 years. Now, with Aranesp, I don't subtract years. How 'bout them apples?

I'm always aware of it, & I try to make my everyday decisions based on the fact that life has become more short-term than I'd imagined. But hey--if I kick the bucket tomorrow, I've lived a good life. Look back at your genealogy, if you can, & find that folks didn't live all that long in the Olden Days.

We're doing fine!

Hi everybody! Cheryl glad you are at this site its great! I may not be active talking but I read every new response. Mom was on Revlimid for 2 years and she did great with it. She was transfusion free and a card playing fool! When it stopped working, the transfusions didn't hold and the dr says that was normal for her. She's been gone since June and I miss her every day - reading up on all of you is good for me!

Thanks DenW, appreciate your response.

Birdmom, I understand what you are saying. I am thankful that my Mom is considered low risk. I realize it could have been much worse. I guess I am still trying to figure out what it all means. She seemed to be feeling worse after taking the Revlimid. Is that temporary? Should she have kept taking it anyway? Her count did go up even if it wasn't much. I don't know, maybe after her next doc visit we'll know more.

It's a lot to take in!

DenW, good to hear from you again. Your experiences with your mom could be very valuable to everyone here, so keep posting. Cheryl is particularly in need of you as her mom has the same form.

Cheryl, wish I could help about the Revlimid, but I only have experience with Aranesp, sorry.

That's o.k. Birdmom, I'm probably rambling a little because I still don't know enough about this to feel like I can be of help to my Mom. But anyway, My Mom went to the docs yesterday. You had asked about her test results. Her hemoglobin went from 9.5 to 10.4 compared to her last visit. hematacrit went from 28.8 to 31.1. Granulocyte 45.1 to 30.9. WBC 10.3 to 9.1 (concerned about that one). Red blood count 2.74 to 3.00.

From what I can understand, some things have improved and some have decreased. I'm not sure what some of them mean. The WBC has me a little concerned though. Maybe you all could help me understand what all these counts mean?

Thanks!
Cheryl :)

Cheryl, at least at this point, my Dr is really concerned with only one number: hemoglobin. That figure (anything below 12) determines whether or not I need & can get Medicare to pay for my Aranesp shots ($2K each without).

I'm going to insert my latest results into your paragraph for comparison. You wrote: Her hemoglobin went from 9.5 to 10.4 compared to her last visit (10.5 to 10.9, lowest 9.4). hematacrit went from 28.8 to 31.1 (30.4 to 32.4). Granulocyte 45.1 to 30.9 (don't have that one). WBC 10.3 to 9.1 (concerned about that one) (3.9 to 3.8). Red blood count 2.74 to 3.00 (2.62 to 2.86).

Your mom's WBC is now in the normal range (4.6-10.2). Too low or too high is not good. Your mom's was just over the high range, which could indicate infection. I'm sure her Dr will keep an eye on that figure.

I hope this info puts things into some perspective for you. Her stats don't look too bad to me, especially when compared to Chris's!

After a while, you will settle in for the long haul, & simply appreciate having your mom around for some time to come. There are a heckuva lot worse diseases out there!

Thank you Birdmom. I appreciate your effort to inform me. My sisters and I would like my Mom to go to Cleveland Clinic for another opinion. We just want to make sure she is getting the best care possible. And yes, you are right. There ARE alot worse diseases out there. Take care :)