I came on here because I am sad today thinking of my mom that passed this May as a result of this disorder....how i watched as she suffered through bi weekly dr visits and monthly transfusions for a year and a half and all i could do was be with her. The arenesp treatment was the worst causing her liver to swell to an unbearable size and pain for her and ultimately she bled to death as a result of a what should have been a routine procedure to withdraw fluid. I hope and pray all of you suffering with this awful disease have someone in your life to help see you through it. I had never heard of this until mom was diagnosed 2 years ago and I wish I had seen this site for inspiration to her. I apologize if my comment upsets anyone

Dear JA - I too am sorry you didn't find this site earlier...I've found it to be a wonderful support system. My husband was diagnosed with MDS in late July so this is all new to us also. My husband is currently receiving Procrit injections and his stamina is increasing each week. I don't know when this will change...but I'm assuming it will change when they stop the injections. I just hope he stays stable for awhile and he doesn't slip back too quickly. I lost my mother three years ago and it was very difficult - we were great friends. I'm sorry for your loss and hope that you might find comfort sharing your mother's experiences with us from time to time. Life is precious - enjoy each day!

Gayle Najera
Bend, Oregon

Welcome, JA. I'm so sorry about your dear mother. Why don't you tell us about her?

I find it shocking that the aranesp caused her so much grief. Was your mom under the care of a hema/oncologist? If the drug caused such harm to her liver, I'm wondering why she was receiving it?

My father had MDS also, and in his case, he had a giant-sized spleen at the end of his life. He was never under treatment, as he did not understand what was wrong with him (and his family wasn't aware either). Perhaps the disease led to his mental confusion?

We're all first-timers going thru the stages of this disease. I just had my first Aranesp injection, & will have another next Monday. I will ask about the liver problem when I next see my Dr.

Good Morning and thank you for your comments..I miss her very much she was my best friend..Yes she was seeing a hemo/oncologist for almost 2 years he was supposed to be the best in this area. He used the injections in combination with a chemo pill after trying injected iron supplements with regular transfusions and was unable to stabilize her red counts for an extended period. The transfusion would hold her Red counts around 9 or high 8`s for about a month to 6 weeks if we were lucky as she was usually in the 7`s. When he advised and started regular therapy on the chemo/injection after about 4 treatments is when she started to retain extreme fluid in her stomach, feet & legs with an enlarged spleen as well. The dr insisted the shots had nothing to do with the swelling that no studies were showing that side effect, however she had NO swelling prior to that. Next came a double daily dose of water pills to reduce swelling and she was told to drink lots of fluid daily only for us to find out months later that she should have reduced intake of ALL fluids to 1 liter per day. In hind site mom and I both agreed that the transfusion regiment worked the best, although the dr insisted on the chemical treatments. She would have forgone the injections and chemo as all it seemed to do was make her sleep, miserable and swollen to the point of looking 9 months pregnant. After 6 months of this treatment the dr did a bone marrow biopsy and although the MDS had not progressed it had not improved either. That is when the liver became a concern for the dr as the water pills and reduced fluid did not improve the swollen stomach area.

JA, Your mother's MDS experience sounds a little offbeat. Do you know what kind of MDS she had? There are about 5 classes. When she first was diagnosed, what kind of hemoglobin count did she have? And how did she come to be diagnosed? Also how old was she?

I'm just full of questions, but I need as much knowledge as I can get so that I can make good decisions in future. Wish me luck--another blood test & another shot tomorrow, then Wed I'm leaving for my cruise. I'm already worrying that I'm going to be very, very tired because of all the activity, but in my heart I know it will work out.

Had my blood drawn yesterday (hemoglobin up from 9.4 to 10.5!) & my second Aranesp shot.

I'll be off tomorrow on my Mediterranean cruise, ending with a few days in Rome. I'll be back Oct 20.

Birdmom - have a great trip. Your great blood test should set the tone for a wonderful trip. Just pace yourself....and live for the moment!

I hope you have a magnificent time!
Gayle & Lou

Hello Birdmom,

Your cruise should be over, and now a happy memory. You should be home.

How did it all go, any problems?

Chris.

Ditto Birdmom - let's have an update!

Hi Chris - hope all is well with you.

Lou is a bit frustrated. Blood count remains at 10.5 even after 3 weeks of 60,000 units of Procrit. Next test is in another 2 weeks. We're hoping for an improved score.

Good thought and wishes for everyone who reads our postings!

Lou & Gayle Najera (Bend, Oregon)

I thought I'd added a reply, Chris & Gayle, but something went awry. I'll start again.

Thanks to the two Aranesp shots, I did rather well on my trip, which was nonetheless quite tiring and lengthy (especially the flights over & back). I've determined that this jaunt was my last big hurrah, I can tell you that. Not just because of MDS, but at 70, I discovered that extended travel is just more stress than I care to deal with.

I have tons of great memories and awesome pictures, plus more to come from my girlfriends.

My dear husband had a heart attack before I even got out of the country, but as he didn't realize what it was until I was already flying away, I didn't know until I returned. They put in a stent (100% blocked artery) & increased his meds. He's doing all right, altho has little energy.

I'm busy catching up & returning to the role of housewife, as well as trying to get my body on the proper western time.

Birdmom,
You are a young rascal. No wonder the old man had a heart attack, with the prospect of you being away, and gadding it up with Italian Stallions.! My golly, if Judith had done that I 'd have had the divorce papers signed before she could call a taxi to the Airport.!!!!

All well here. Well I think so, though the Haemos, say I have lots and lots of Leukaemia Cells floating around. I feel fine, but it is now definite that I have Acute Myloid Leukaemia, so I must be slipping up and going down hill.

We are planning a trip to Bogota, Colombia, beginning of December returning home just before New Year. However Judith is going with me.!!! Only problem is infection and the altitude in Bogota of 8,600 ft. though at present my hemoglobin is up at 10.00, though platelets down at 17! Could'nt even serve a cocktail serving on that size of plate.....!!

We are having a family get together in November, with my children flying in from Australia, Hong Kong and Dubai for 3 or 4 days. Lots to look forward to, and hopefully those in the UK will also come along.

So I am fairly relaxed about life, and working hard. But then I, I Birdmom am only 74. You youngsters......grrrrrrrhhhh!

Cheers
Chris.

ps. Did you read that Lou has a hemoglobin of over 10. Lucky man!

Youngster! That from an old man of 74, a whole 4 years older than me.

Saw the vampire today, & I'm proud to say that my hemoglobin is 10.9! Aranesp is working for me, that's for sure. My new Dr is Indian, & encourages me to eat more curry & tumeric. Says that Indians don't have MDS!!! But interestingly, dark-skinned folks have low levels of Vitamin D, which is all over the news right now as being a real problem. He takes massive doses to bring his up.

My new schedule is an Aranesp shot every 4 weeks, with the dosage bumped up to cover the wider time range, & a Dr visit every 3 months. Yay!!!

I'm floored by your platelet count, Chris. Mine is 263! You don't have enough platelets to bother counting them. Maybe the lab techs ran out of fingers & toes....

Now that I think back on it, H's heart attack was timed quite nicely so that it didn't interfere with my cruise/Roma. Sadly, no Italian stallions gave me a pinch, but I came across some great-looking young studs. Hump doesn't have much pep, but time will tell if he improves some over the next few weeks (now that I'm around to make sure he straightens up & flies right).

Your trip to Bogota tires me out just thinking about it. That's a heckuva high altitude for you to handle. How's your oxygen level?

You have many nice things in your future to look forward to. Remember, it's quality, not quantity. (You can toss those words back at me any time, young man.)

Hello, my name is Cheryl. I found this support group last night and read through all of the comments and then came back tonight and read them again! My Mom has been recently diagnosed with MDS. I told her I found this support group and she was very interested in finding out what others who have MDS are going through. She does not have a computer, so I told her I would ask some questions. We are still learning about all this, so please bare with me. I'm pretty sure my Mom is in the same category as dizzygal(Anne). 5q. The oncologist said she was low risk.

Mom started taking Revlimid about 3 weeks ago. She was supposed to take it for 3 weeks then stop for 1 week and then back on for 3 and so on. She got through about 2 weeks and was feeling so tired and was having some problems with constipation so her doctor told her to stop taking if for a week. She was supposed to start back on it yesterday, but she decided to wait until she goes back to the doctors on Nov 2. She started out at 10 mg. She is going to ask if she can just take 5 mg.

dizzygal? How long after starting Revlimid did you start feeling better and your counts go up? Did you feel worse when you first started taking it? What dosage have you been taking?

DenW? How long had your mother taken Revlimid before it stopped working for her?

Thank you for any answers you can give me and thank you for being here. I think this will be very helpful. My Mom is going to be moving in with me sometime next year, probably in the spring. (She lives an hour away) When she gets here, I plan to get her "aquainted" with the world of computers! Haha.
Cheryl

Hi Cheryl,

Welcome to our discussion group! I've been online here for a couple of months and have really enjoyed it. Unfortunately the people you're hoping to get responses from haven't been active participants. Of course, maybe that's because they haven't been directly been asked questions. I suppose they may be checking in periodically.

Chris and Birdmom are the continuing strength of this discussion group. You'll probably hear from both soon.

Gayle & Lou

P.S. Lou was diagnosed with MDS July 22...early stages like your mom. Stay strong!

Since Lou and Gayle, say I am active, then I had better prove them right. Sounds like our newest recruit has a Mother in the very early stages.

Lets recap.

I was diagnosed in August 2008, and given 1.2 years to live. However since then, working backwards to two incidents one that concerns Hemaglobin, when I went to Colombia in December 2007, I had a devils own time deasling with the altitude. MDS probably. Low Hemaglobin means shortage of Oxygen in the blood. Another was in April 2008, when I had a tooth extraction, and my mouth filled up with blood. MDS? Yes probably. Blood won't clot, means low platelet counts.

When I was diagnosed they put me in risk category 3, Refractory Anaemia with excess blasts. Now they reckon I have Acute Myloid Leukaemia, and on August 7th & 8th, two separate haemos at two different hospitals gave me 3 to 6 months to live. But though they say I have a severe problems with lots of leukaemic cells in my blood, I feel fine, apart from getting tired quite easily, and falling asleep in the middle of doing things. But I feel well, I am working, well of course I am only 74, (75 on May 30th 2010), if you want to send me presents, or cheques in lieue. It is not too good wondering when that big incurable infection will come, as it will, with bad WBC, platelets at 17, and Hemoglobin at 10.00 and lots and lots of Leukaemic cells, and no immune system to boot. But I've been going two years, and feel like going a few more. So do not spend too much emotion worrying,
it never was worth while,
so pack up your worries in your old kitbag and smile, smile smile.
Good luck to all, and love from me.
ps. The good looking one in the photo is me, the beauty is Judith with whom I have enjoyed 22 years of marriage, and SHE really looks after me.!!
Christopher.