Hi everyone.
I just learned on Wednesday that I will be starting Vidaza in November. What kind of side effects can I expect? I still work full time and I'm concerned about making it to work every day. Is this going to be a problem?
I'm off to Mayo on Tuesday to get further info. Not sure what to expect.
Any insights will be appreciated.

Thanks everyone!

Hi:

Looking for any First Responders to The WTC on 9/11/01 that have been diagnosed with MDS. I am a retired Firefighter diagnosed in 2003 transplanted in 2005.

Thanks

Hello!
Well I finally had a followup appt with the lung specialist regarding my biopsies. All the cultures showed negative for whatever they were looking for. That is the good news but then there is always the bad. Since my last chest xray and breathing tests they did in July, my lungs have gotten worse. I am being scheduled for another ct scan and then I will have a surgical lung biopsy done by a thoratic surgeon. With having a bone marrow disease the pulmonolgist says it will be harder to treat whatever is wrong with my lungs when they do find out what the problem is. Over the past couple of years I kept telling my oncologist about my shortness of breath and he always seemed to brush it off. That it shouldn't be bad because some of my counts weren't low enough to have shortness of breath but yet everything I read about MDS that is a big thing. So I just kept thinking it must just be the MDS that was causing it and now to find out that I have lung problems and that is the real issue. I have to wonder how much damage has been done to my lungs because I didn't push my oncologist harder over the past years to listen to me when I said I just couldn't breathe when walking up a few stairs. I am upset with myself for not being more proactive about the breathing problems but at the same time I am upset with my oncologist for not listening to me. Now I wait for my upcoming tests to get those results to see what if anything can be done to help. My next followup with my oncologist isn't until January so depending on the lung test results, I think him and I may have alot to talk about.
Your comments and advice are always welcomed. I appreciate you letting me vent about my health!
Take care everyone,
Janet

Thanks guys for thinking of me. It's nice to know you are missed. I'm sorry for the long delay in checking in and so thankful to Millie D. for putting me back on track. It seems that the gray cells are now joining the bone marrow in not functioning. This journey isn't easy as all of you know. I've become dependent on blood transfusions. The bone marrow is not recovering as quickly from the Dacogen (5days) treatment. The good doctor gave me time off for the holidays so that we could travel to Alabama in Nov & Dec. for the holidays. I'm sure he'll start me on chemo again the first of the year. I've told him Quality time out weighs Quantity anytime.

I'm having a tough time this weekend. So short of breath, managed to make brunch for my fella but still have cleanup. Blood tests from Friday really low and a transfusion is scheduled for Monday. Transfusion should bring HGB up 8-9 hopefully. Only problem I'm having difficulty with iron, and as you know each transfusion spikes the iron. I have Heredity Hemochromatosis which makes this so much more difficult to deal with.

I see the good doctor again the first week of November so promise to check back in with you at that time. Until then my best to all of you. Hugs! Becky Jean

I have not been on here for a long time and things were going along fine until about three months ago. A short recall.....I was on Vidaza for a little over 4 years when it quit working and I needed transfusion blood transfusions more frequently. It took the Vidaza about a year before I went into remission with transfusions about every 15 weeks. After the Vidaza quit working, I was put on Arie 614. This is a new chemo that showed home for transfusion dependent MDS/Cmml patients. I have been on Arie for about 5 weeks and have needed transfusions about every 10 days to two weeks. I have been seeing a transplant doctor since my diagnosis in March 2009. It was determined that now is the time for a transplant. I have two sisters who were not a match but I have a perfect bone marrow donor who is a 34 yr. old male. I will have the transplant in November. I have an appt. Nov. 5 at MD Anderson and the transplant will take place as soon as the donor can commit to a date. I will be in the hospital and highly dosed with chemo until my marrow is depleted of any cancer cells. I will rest for 2-3 days and then will receive my donors bone marrow. I don't know a lot but will be able to find out more Nov. 5. I know the risks are high but my choices are very limited. I will try to keep in touch while I can to let you know the process of a bone marrow transplant.
Betty Jean, it sounds like you are having a rough time right now. I feel for you knowing how tough it is when our blood gets low. I will pray for you and hope this chemo is just taking its good old time to start working for you.
To everyone else, I know we are all here for the same reason. We have to live life to the fullest and hope for the best results no matter what the treatment plan. I am still in pretty good health and plan and my doctors think this is the best time to pursue the transplant.

SusanB4; you are in my prayers and I hope & pray that all goes well with your transplant and you are back on here posting about your recovery. Just know that alot of people who you don't even know are keeping you in their thoughts and prayers! Best of luck to you and God Bless your donor!!
Praying all goes well!!
Janet

I'm back! Glad to see that some of my ol' friends are still posting.

I'm still okay, was on Aranesp & have had two xfusions so far. But what has driven me back is the bad news I got when I went for my blood draw & shot yesterday.

It seems that the ground rules under Obamacare have changed. I was told that I could only have the shot if my Hgb was between 10 & 12. My Drs would never give me Aranesp unless my Hgb was under 10, so I don't exactly see the reasoning. Hgb yesterday was 8.9.

Has anyone else run into this? Sharon

Hi everyone,
I went yesterday for my pre-op testing for my surgical lung biopsy. Not looking forward to having it done on Thursday. KInda scared of what the Doctors say afterwards regarding any treatment. One doctor said that even having this done they may still not know what is causing my lung scarring. Treatment if any will be coordinated with my oncologist so whatever they decide to do will not affect my MDS to progress.
I will update when I am able. Thanks in advance for your prayers!
Hope everyone is doing good.
Take Care
Janet

Where is everyone, last posting my computer lists for this group was November. Maybe my computer needs updating. Trust all is well with everyone. Hugs!

Hi Becky Jean,

Thought I'd check in and was delighted that you are still posting. Be well my friend.

Millie

Hi everyone happy 2014 well let me update spoke with my moms doctor she told me my mom was in the last stage and gave her 2 years at most that was back in the summer of 2013 my mom is now blood transfusion dependent with a port put in seems as she is starting to get them pretty regular now which scares me ...could this really be coming to a end she is tired a lot....Can someone tell me what the end signs are????

Hi everyone, I haven't been here for soooo long. Can't believe it's still going. I've come here to talk about my platelet problem. Not really having issues with bleeding. My counts between 10-30 usually. I live pretty well & have done for a few years. But recently started to get the little red dots where my bra strap goes. I have a permanent mark there now. No health worries just bruise easily. And just wish my platelets worked better in case I really need them one day!

Sorry to hear that Tecia. I really don't know an answer. Each situation is different I think. Love & hugs to you xo

Tecia good to see you again. I think the end is different for most people. My dad was transfusion dependent for a year, until ti just stopped working. He was both blood and platelet dependent.

Tecia, I've been wondering how your Mom was doing. It's true that all MDS patients are different. How often are her transfusions? I think it helps to follow her blood counts, which are probably done every couple weeks, also to know results of her last bone marrow biopsy. What are the blasts, has it progressed to Leukemia? The doctor probably wanted to prepare you but Mom doesn't have to follow the doctor's time frame.

I've become transfusion dependent, receiving 2 units every 2 weeks. My HGB (hemoglobin) ranges 6-7 and yes, I am tired. I can't function without a transfusion which brings it up to 9, HGB still low but tolerable.

My system couldn't tolerate chemo so it has been discontinued. However, that may change if transfusions become more frequent
or if it progresses to Leukemia.

Sharon, I have no problem with Medicare for any of my services at this time. Blood units costs $2,000, half of that is to have the units irradiated. Will have to deal with changes, especially regarding drugs as the costs could be over $1,000, if and when it happens.

Tecia, try to focus on day to day, see your Mom as often as possible, be there for her and let her know how much you love her.

Hang in there Tecia, Hugs!