Hi all,
It seems like forever since I posted anything. Have been under the weather alot the last few months. I got the results from lung biospy (vats procedure) that was done in Nov. I was told by my lung dr that I have hypersensitivity pnuemonitits. Lung disease caused by an unknown enviromental factor. We had our house ducts cleaned and air quaility done but all was fine. He put me on prednisone 20mg per day and Qvar inhaler 4 puffs a day. I was put on that the 1st of January. I went the following week to my oncologist for my 6 month checkup. My platelets were 87000, wbc 4.2 and hgb 13.3. Since I had only been on the prednisone for a week he said that it had made a difference and didn't feel the need to see me again for 6 months. Not sure if I agreed with that since all my counts had been on a steady decline.
I haven't had alot of the terrible side effects of the prednisone yet. With the exception of 3 bouts of thrush and then I came down with the flu at the end of February. I am just now starting to feel better from that. I even had a flu shot in October but my husband contracted it first and passed it on. This week a new effect from that wonderful drug. I have fever blisters that are on my top lip from one side to the other. I have read that prednisione reduces a person's immune system. Just what I need with already having a low immune system. Since having the flu, I have a bloody nose every morning when I wake up..
I get the feeling since I have this lung disease my oncologist will not be as involved when it comes to my MDS. My lung doctor seems concerned about it but after the last visit with the oncologist I got the feeling like I was now someone else's problem. I would of thought he would of wanted to monitor me a little more closely since prednisone can affect a person blood counts not distance himself from me.
Has anyone else had this type of issue with their oncologist? I just feel put off by him.
I guess maybe I just needed to vent a little. I go back to my lung doctor April 24th for a 3 month checkup and will be reevaluated with meds he has me on.
Hope everyone is doing well.
Take care,
Janet

Hello everyone! I'm so glad there is a group like this cause I have been feeling very depressed and need others who have MDS to talk with. I'm Jill, 61 years old and diagnosed with Myelodysplasia Syndrome Unspecified. I was diagnosed at a routine CBC back in the fall of 2010. At that point my platelet count was 745,000....after being put on Hydrea twice a day, 500 mg the platelets got under control at 300,000. Last summer my RBC and Hemoglobin began to go down and my hematologist tried changing the dosage of the Hydrea to get my RBC and Hemoglobin numbers up to 10 and higher.....it didn't work, Hemoglobin is still wavering between 7-10. Thing is I'm not unusually tired and show no signs of fatigue. So at my last appointment last week, he suggested I see a bone marrow transplant doctor and discuss if Iam a good candidate. I AM SCARED....this is the first time I have seen a serious concern on his face. I don't wanna die...Iam so scared now.....My hematologist says this could be my only chance for a cure.....I would like everyone's feedback on transplants and other forms of treatment.....thank you

Hello...Hard to believe that this group has almost two thousand posts.
My MDS morphed into AML some years ago and I'm almost three and a half years post transplant. Sadly, I opened my friend listoday and saw the captain. A great inspiration.

Hello Dear people. Today we found out that my cousin has Myelodysplastic syndrome. And she needs marrow bone transplantant.
I didin't know where to start. And found this website as I searched.
She is from Uzbekistan. I asked her to come over to Singapore for a check ups as she having anemia and low trombocites since April. And doctor suggested her to remove her spleen as it could help. I sensed there should something more to it and asked her to come to Singapore to check it properly. Here doctors found out she has healthy spleen. however she needs marrow bone transpalnt and chemo to slow down AML transformation.
The problem is that it could cost up to 200,000SGD to do all in Singapore.
She is 44 years old. Her youngest child 15 years old, oldest girl is 18, still not married. Husband doesn't support them at all. She is scared if something happend to her, kids will get lost in their lives at such a tender age.
There is no chance to do treatment back in Uzbekistan as there is no such a thing. So she needs to do treatment overseas. I really don't know what to do. Maybe someone knows in which country it is the best to do treatment, also cheapest also good. Maybe someone has an idea of any organizations that could help to raise money. I am really lost and full of tears for her and her children.
Thank you

To all my old friends and hopefully new ones,

I haven't posted in such a long time, but I see some familiar names.

To recap, I'm 75, diagnosed at 69 with low-level MDS. It's not so low-level any more! I had Aranesp shots for quite a while, but they no longer work, and I get xfusions every 3-4 weeks now. Dr told me to start thinking chemo. Unfortunately, it's a 35-mile mountainous drive if I have to go for shots every day, altho I understand I can switch to pills after a while. Has anybody else done this? It's probably Revlimid he's talking about, but I'm not sure.

I'd sure like to catch up on news. I see Janet's post below, & she's sure having a rough time. Sharon

Hi,
I am new here. I have had low red and white blood cell counts for a couple of years. I also had low b12 levels, so my family doctor tried b12 shots to see if that would bring my counts up. He finally referred me to a hematologist and I am scheduled for a bone marrow test next week. How bad is the bone marrow test? I am very scared of the test itself, I have heard that it is quite painful, and even more scared of what the results will be. I have been researching myelodysplasia online and everything that I have read is pretty grim. It is reassuring to see that lots of members here have survived for years and seem to be living fairly normal lives.

Hi i am new I am here because my mom has this and was just told a month ago. She has had it for three years and are just finding it. She is not doing very well and I just want to understand this type of cancer and need support

To ms 2852 and Gmarkman,

Welcome. I hope you find some of the answers you need here. MDS is a large umbrella of related diseases, so almost everyone has a different set of problems.

I've just had my second BMB in 6 years. Yes, they are painful; I wouldn't lie about that. I planned to be knocked out for the second, but things didn't go according to plan. The Dr told me it's not good to have an unconscious patient during the procedure for many reasons. Well, too bad. Next one, I'm bringing a brick.

The good news is that nothing untoward showed up in the results. I don't understand how I can keep going downhill bloodwise, yet have a "stable" condition of low-grade MDS.

I did Aranesp shots for a long time, then RBC xfusions (ongoing), & next will be Exjade to rid my body of the excess iron from the xfusions. I will probably have chemo before very long. What that will do for me is cut down the number of xfusions, at least hopefully so. I've been falling into the 6s for Hgb recently.

Lots of us lead reasonably normal lives for years. Much depends on the class of MDS you have. Complaints vary; mine center around needing lots of sleep, tiredness, & loss of appetite/weight.

ms, you may well have a different kind of anemia (rather than MDS), being that you are low on B12.

G, what are your mom's counts, diagnoses? What sort of difficulty is she having, & how old is she?

Merry Christmas to both of you, and any other posters who might read this. We can hope for a better 2015, right? Sharon

i hope everyone had a wonderful Christmas! My prayer is that you all have a very Happy New Year!
Life with MDS can be very difficult regardless your stage. Thankfully I am in the low risk but it is complicated with lung disease. So between the two of them my energy level gets very low. I had a checkup on Dec. 15th with the lung doctor because I had been sick for a couple of weeks with an upper respiratory virus. He wanted to be sure I didn't have pneumonia. Thankfully I didn't but whatever it is I am having a really rough time getting rid of it. He upped my prednisone for a few days to help me get through it. He said he spoke with my oncologist in August regarding the prednisone because he doesn't want to keep me on it very much longer. As he says it is not a long term therapy for lung disease. But the other medications I could take the oncologist says no because it would hurt the bone marrow too much and the risk it too great. Hard to hear that because the prednisone side effects are hard for me to deal with but I do have to breathe.
Welcome to the new posters! Hopefully you can gain some insight to this disease although everyone is different. I have had 2 BMB and they do hurt but I just took a deep breath and my husband held my hand each time.
Best of wishes to all!
Janet

Just checking in with everyone to see how they are doing. I have had 2 trips to the pulmonary doctor in the last month and going back next week for checkup. After 4 rounds of antibiodics, I think he finally has me feeling better from whatever was invading my lungs. He did several blood tests and sputum tests and all came back negative for what he thought might be the problem. Which is great news. Although being on the prednisone my white blood count sure has shot up in the past year. In January of 2014 before going on it my white blood count was 3.0 and when I had blood tests done in Dec. it was 6.0. The hgb has stayed about the same and my platelets are staying in the low 80's. I really dislike the prednisone though. Seems like my face gets bigger everyday and the dark circles under my eyes and the puffiness there is getting worse. The longer I stay on it I continue to see a physical difference. I have to use alot of coverup to disguise my blood red cheeks and if I scratch my arms or legs I have red bruising so I try not to scratch when I have an itch. Prednisone makes the skin thinner and more likely to show bruising. Not that the low platelets don't do that on their own.
Oh well I do know I have it so much better than others when I look around at a doctors office. I am still able to work and I do my best to clean my house but that does take a back seat to just sitting and resting sometimes.
Hope all of you are well. I will continue to check back and post anything new.
Take Care!
Janet

Hi Everyone!
It's been awhile since I last posted. It's been 5 years since my diagnosis. It's hard to believe that 5 years ago at this time, I praying for a HGB of 7,. now I constantly at a HGB of 14.3! I have been very blessed in that I was started on Revlimid, and I responded beautifully. My transplant was put off, my bone marrow is not showing any sign of the disease, and I have been quite healthy. In fact, I have an appointment with my oncologist and hematologist this month where we will discuss taking me of the Revlimid to see how I react. I know, intellectually that only a transplant can cure MDS, but what if.....?

Hi Jeanine, So good to hear you're doing so well. Did the specialist take you off Revlimid?Cheers Rachael

has everyone stopped coming here? kind of sad to see no posts since September. I lost my husband Oct 11 to copd.

Hi. I was wondering if anyone had any answers. My dad has MDS and has been going for monthly treatments of Vidaza & Procrit for a few months now. But this past month he has been battling fevers ranging between 99 - 102.00 every single day. He has gone to the hospital for antibiotics in case of infection and many tests, but he has no infection. He is home now but still has fever everyday. Is this a normal symptom from his illness? Has anyone experienced these fevers and do they go away? Is this something he will have to deal with everyday?

How can we join an active MDS support group. Everywhere we look, the threads appear quite old.