I'm so afraid.

[Lori Patrick 14]

Hi kilti. I was diagnosed yesterday with MDS RAEB-II. It is overwhelming to look it all up on the internet. I keep telling myself to stop,,, but curiosity gets the best of me. I am glad I found this site. Best to hear from people amidst this disease and here first hand information.

I am scared too. And I worry so about my family. I hope you are doing well and hang in there. Together, a lot of us will be fighting this nasty disease. Lori

[Smurf]

Hi Kiltie,

My Hemotologist is Dr. Lee. I had a bone marrow biospy on Nov. 18/10.

My husband and I met with Dr. Lee on Dec. 9/10 to go over the results of the bone marrow.

He explained that he had to converse with a team of Hemotologist because he was quit sure. They stated that it looks like it is leaning towards the makings of MDS, but there wasn’t anything to do right now as far as treatments. Just wait and see.

My counts are not low enough, so he wants to see me in 6 mths. There still is the cytogenics results to come back, and I guess that will determine where things are at.

I’ve been dealing with low blood counts since 2000 and think even longer then that. I had a bone marrow done back then, but was never diagnosed with MDS, so I just kept getting my bloodwork done every 6 mths.

It wasn’t until this Fall that they started to drop.

I know how you feel about being afraid, I am too, but I have read that may people can live long and happy lives with MDS, and they have certaily come a long way since 2000 with treatments and clinical trials.

It’s nice to know that there is someone else that lives in Kingston, it’s just unfortunate under these circumstances.

Take Care.

[simplistic007]

Hi Smurf,

I understand your fears very much. I was diagnosed with MDS back in July. The bone marrow came back with beginning of MDS, but then I had a repeat bone marrow in August and it came back normal. They diagnosed me with Chronic Anemia and at this time the doctor stated that I had no MDS. There is still some abnormality on the bone marrow but not enough to classify it as MDS. It is scary because this could change at any given time in my life. Just to know that the bone marrow was abnormal in July and I had a 2nd opinion state the same scares me. Although I have been diagnosed as of now with chronic anemia, it still scares me to think that the abnormal bone marrow gene is lingering waiting to see what happens. My blood levels are always low and I am always anemic but platelets are good so I guess that is good news. I had the biggest scare this past Summer. I was actually suppose to be in transplantation process right now, but thank the good Lord he spared me this process. Please pray and have a lot of faith because it is the only thing that keeps you sane and able to cope with this situation. Best of luck to you and let’s pray for all on this forum that we continue to battle and beat this illness. Merry Christmas and a healthier New Year. God Bless.
Simplistic007

[Mary4Mike]

Simplistic,
Glad to read that you are still out there reading the forum. I am thankful to hear that you have no MDS. Are they treating the chronic anemia? Do you have to have lab drawn quite often to keep an eye on things?
Again, all the best to you and I will pray for you and everyone on this forum for the healthiest new year and to all a very Merry Christmas.

Mary

[simplistic007]

Mary4Mike,

Thank you for your kind words. I have to go every 3 months for blood work. I am still anemic but platelets are good so they are not too concern as far as MDS. They just continue to diagnose it as chronic anemia. The only thing I do notice is that although I am very active, I do run out of energy and find myself tired. Even if I nap, I still feel tired later but not sure if this has to do with my fibromylgia and the lack of not sleeping through the night. I always keep in touch with this forum because a part of me still belongs here. I learn from each and one of you. This is something I could have been going through at this moment, but God has spared me this time. My heart and prayers still go out to all that are living this experience on this forum and I pray for a speedy successful recovery. Thank you for your support. God Bless and Merry Christmas and a prosperous and healthier New Year’s.
Simplistic007

[lindajo]

Stable is great. I have been called Static,( not getting better, not getting worse) for 20 years. Stable is one step up from Static. A minute step but still a step up.

Try not to worry too much. Go on with your life. Our disease is rapidly becoming manageable and even when it isn’t we have the best people working on treatments and cures. I will be praying for you.

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