Janet....I think you should be seen now to see how low your counts are. You might need a transfusion to give you the "boost" you need. Please let us know how you are doing.

I hope the terrible weather missed you.

SusanB4, thank you for your advice! It has been so humid here the last few weeks so I think that has something to do with my shortness of breath. We don't normally have all this humidity.
By the way the storms did miss me where I live but unfortunately the tornadoes hit Moore, Ok and that is about 20 miles to the southeast of me. It is so sad. I just hope and pray we don't see anymore big storms this summer. Help to our state has come from all corners of the US and even from other countries. It has been totally amazing how the Lord works in people's heart when tragedy strikes.
hope you are doing good.
Take care and my prayers to all who walk this walk with MDS!
Janet

Hi, leaky boat crew,

I admit to not checking in very often these days. Not much has changed in my status except that Hgb dropped to 7.8. I was ready for a xfusion to boost my energy, but naturally the next two draws showed me at 8.8, altho the red keeps dropping.

I'm very tired every day, as usual with 8's, but my Dr doesn't like to prescribe a xfusion until I'm below 8 on a steady basis. Being tired leads to feeling low in general, as you all know from experience.

But I'm still hanging in there, & shouldn't complain at all when I learn what some of you are going thru.

I do wonder about some of our crew. So glad some of you have checked in. Sharon

I am also a new member,boyfriend was diagnosed 2 years ago and was holding steady until recently. Now his levels are dropping and they are talking chemo/transplant but he is high risk-he is on dialysis,has had heart valves replaced-has anyone out there been in a similiar situation. He is uncertain what to do-risk the transplant or do transfusions and whatever can be done to extend his life. He is 55

Hi everyone,

I saw the doctor yesterday and my platelet count is dropping (54,000) The doctor said I would begin treatment when they reached the 30,000s. Can anyone tell me what kind of treatment we're talking about? What drug? He said it would be 7 consecutive days each month. How long can I live on drugs? Is this the beginning of the end? I guess I'm concerned that once I start the drugs, my life expectancy will diminish and I won't have too many years ahead of me. Any comments with be appreciated GREATLY!
Thank you

Just wanted to take a minute and wish everyone a Happy & Safe 4th of July!!
Hope everyone is doing good. I haven't been on in a bit. I have my check up with the oncologist on July 16th. I will be glad to go to find out if my numbers have dropped. I messaged in May that I was having a harder time with shortness of breath and just being so tired all the time. I opted not to go in for an early check up. Maybe out of fear that things are changing and I am not ready for that. Being in the wait and watch for so many years with out any treatment it is scary to think maybe things are progressing. The doctor did say the last time there that it was progressing but was slowly.
Take care everyone!
Janet

Libraria Deb, If you are in the low risk category of MDS you need not worry too much about a platelet count of 54000. Even 30000 sounds good to me. I have gone 5 years without treatment with a platelet count of less than 30000, though I will say that everybody has a different form of this disease. Some people's platelets work better than others. As long as you are not bleeding at 30000 then watch and wait is a viable option. However, if you also have other risk factors such as high blast #, chromosomal abnormalities or severe anemia or neutropenia than you might need treatment which would most likely be Vidaza or Dacogen for 5-7 days once a month or perhaps transplant if you are in the high risk category. So try not to worry and live life now, just take all the preventive measures to avoid injury and bleeding. If you want to tell us more about your other counts and bone marrow results, please do so. The more knowledge you have about your disease, the better.
Birdmom, I hope you are doing OK as we have not heard from you in awhile. Janet, am I correct in thinking that you have been on long term Vidaza. I hope your check up goes well.

Hi Flyonawall
No I haven't been on any medications yet. I think there is another Janet on here or at least there used to be. Thanks for the good thoughts on my next checkup. I always feel like a nervous wreck for a couple of weeks leading up to it. Just the fear of the unknown.

Take care all!
Janet

Just checking in to see how everyone is doing! I really should pop in more often. hi to the leaky boat crew!

hi all!
Went yesterday for my 6th month checkup. All my counts dropped some but my doctor said I am still doing fine. No need for treatment still so he will recheck in 6 months. I talked to him about how tired I am and how my shortness of breath is getting really troublesome. I added that the past couple of months I have started what I call a smokers cough but I don't smoke. He said I wasn't anemic so I should not be this tired. After checking my oxygen level he opted to do chest xray's. The xray's came back showing that I have what is called infiltrates. He said that I could have some sort of infection or even pnuemonia. Although I don't feel like I do. He called a lung doctor that he is an associate with and they have scheduled me for a CT scan with infusion for Friday the 19th. After that test is done then I will be seeing the lung specialist. My mother had emphysema when she passed away but she was a heavy smoker and one of my older brothers passed away from a lung disease when he was 53 but all I knew about it was that he had been around asbestos in his job. He smoked when he was a teenager but quit in his 20's. Needless to say this has definitely added some stress to my life the last couple of days. I keep telling my husband who is worried sick that just a good dose of steriod's should take care of it. I sure hope I am right. His Father is in the late stages of lung cancer and it not expected to live too much longer. So my husband is definitely stressed out.
Has anyone else had infiltrates in their lungs? I had never heard of them before.
Take care and I will update when I know more.
Thanks for letting me rattle on today :)
Janet

Hi everyone! It has been awhile since I last posted. Sorry I continue to do very well on the Revlimid. My counts are all normal. Thank God! It has been three years since I was diagnosed and I have been in remission for 2 1/2 years. I always forget that I am sick until I need to go have my monthly blood draw ( something you need to so for the Revlimid prescription). I find myself getting annoyed at these monthly excursions until I remind myself just how sick I was and how lucky I am to be well right now because we all know how quickly MDS can change. I think of you all often and hope that everyone is hanging in there. I was wondering if anyone has heard from AussieRachel? She and I were diagnosed about the same time and vein the same age (36) at diagnosis, she was great source of strength. You are all in my prayers. Stay healthy.

Hi Jeanine,
It's great to hear your doing well and are healthy. I've been on Revlimid for over three years, but never have reached cytogenic remission. My white cell and neutrophil counts vary, but mainly hold just below normal levels. Platelets are low but only because of the medication. We have had some news that the del 5q is getting worse, and I've had some additional testing on a gateway gene. Revlimid still keeps my Hbg count in the normal range. Even with the news we received I still believe I will be far off ever having a BMT. We have moved to another state so I now have a new specialist who stated unless the MDS looks like transforming to AML he won't want me to have a transplant. My previous specialist was considering to do it this year because of my inability to achieve remission and the gateway gene aberration.

I'm still active, but have not worked for awhile due to fatigue and ongoing side effects from the drug. I'm very grateful to have had the success I have had on Revlimid. I understand how you feeI about the monthly hospital visits! I stay positive and do visit this site to check in to make sure everyone is ok.

Sharon you are so wonderful and your posts always make me feel a little less alone in having MDS. I hope everyone on this thread are doing ok.

Cheers
Rachael

Hi everyone!

Haven`t been on in a while but felt the need to see how everyone is doing.
As for me, blood counts are slowly dropping....... but has been for 7 yrs.
Having RA is certainly not as bad as some of you but makes me very tired. I have just learned too , that I have COPD and never smoked. I go to bed exhausted and get up very tired. I rest for a while and work for a while. I think most of you know what I`m saying.
The biggest thing I have to deal with is....I don`t look nor act sick ......therefore,..... family and friends don`t understand when I just want .....to stay home or need to stay home.
I`m almost 80 and have no energy to do a lot. I do still paint and love it!
I`ve learned that keeping a good attitude, resting all I need to, and just leaning into where God has allowed me to be is best for me.
I hope all of you are taking care to do what is right for you too!

Till next time..........................

Pegg

Hi everyone!
Hope that everyone is doing okay. It has been a busy past couple of months. When I last posted, I was scheduled for a ct scan on my lungs. I had that done and a few days later on Aug 2nd, I had a bronchoscopy to have tissue taken out for biopsies. Within a couple of days of that I was told that part of the biopsies tested showed no malignacy (spelling?) but that the other tissue samples would need to be cultured which would take 6-8 weeks for results. So I am closing on week 8 and still have not heard back from my doctor. I am hoping that no news is good news, but if I don't hear from him soon I will call.
In my last post, I wrote that my Father-in-law was in his last stages of lung cancer. It breaks my heart to say that he passed away on Sept. 15th. He fought such a hard battle and I am so proud of him. He has always been more like a Dad to me than my own Dad. As heartbreaking as it is, I am just so thankful that he no longer suffers and is at peace. Cancer is such a horrible disease and I hope and pray that someday all cancers will be non-existant but I am sure I will never see that in my lifetime.
Take care,
Janet