CMML

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RE: CMML

by Meg100 on Thu Aug 23, 2018 11:15 PM

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You are fortunate. 

And, yes, we are international at this point.  There is an Australian group that has their own group as well.

We have seen members who have started down the path for BMT become too sick during the initial chemo, and cannot finish the process.  We have seen members die from just that initial chemo.  We have had a few that made it through to the BMT, but then have passed within the first year.  We have had a few that were successful for quite a few months, and then the CMML returned, and now they are contemplating if they want to try a second round.

Personally, I feel as though the odds are stacked against me.  I am 62 and strong otherwise, but my immune system has been severely weakened by the combo of multiple myeloma (MM) and CMML.  I won't do a BMT, but will probably eventually be willing to try some of the chemos for maintenance or to help bring my immune system back.  The doctors are considering that for me now on the MM side.

And, yes, the group has shown us how different each person responds.  Even on the maintenance chemos, one person will be so ill and another gets the same chemo and goes back to work.  We are all unique, and as Bob likes to remind us, no one can predict our futures, not even the docs!

It is a tough disease, so that is why I celebrate hearing your story.

RE: CMML

by edsana on Wed Nov 21, 2018 04:52 AM

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Update - I had my third "new birthday" and three year post transplant labs last week. All labs (blood, pulminary, etc.) were good. I don't have to go back for followup labs for a year. I'm very fortunate. Ed

RE: CMML

by Shanlo on Wed Nov 21, 2018 03:58 PM

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Oh Ed...so very happy for you!!!  What a nice gift...you have so much to be thankful for this holiday season.  May there be many many more for you!!!

RE: CMML

by bobspez on Wed Nov 21, 2018 04:13 PM

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Hi Ed. Thanks for sharing your updates with us and now this great news. Happy Thanksgiving!

RE: CMML

by Meg100 on Wed Nov 21, 2018 04:16 PM

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Wonderful news, Ed!!!

RE: CMML

by Missyjoy on Fri Dec 21, 2018 03:16 AM

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Hi Nancy. I live in Cleveland too, and use The Clinic. My husband was just diagnosed.

RE: CMML

by edsana on Mon Jan 27, 2020 05:11 PM

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Had my 4th "new birthday" on November10th and four year labs on the 11th. All lab results were good/normal. I have one minor lingering GVHD issue which is dry eyes. My eye doctor gave me a prescription for "serum" eyedrops which are made out of the plasma in my blood. They extracted 12 vials of blood and several hours later the eyedrops were ready to be pick-up. Cost $300. The drops are not red, but clear like plasma. The vials have to be kept frozen and one vial is thawed out each week and kept refrigerated. I use the drops several times a day. They have helped with my eye issues. Funny note one blood test caled a FISH test shows that I am female (eat your heart out Bruce Jenner), this is because my sister was my stem cell donor. I am 69 years old and thankful and fortunate to be alive. Ed

RE: CMML

by bobspez on Mon Jan 27, 2020 08:38 PM

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Congratulations Ed. Best wishes for continued health and recovery.

RE: CMML

by Meg100 on Mon Jan 27, 2020 10:20 PM

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Such great news!  I am so happy for you!!!

RE: CMML

by Captnike on Tue Jan 28, 2020 01:06 AM

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Hey Ed, So glad you are doing well, Chica. Too funny. My blood type changed to my sister’s and then changed back. Glad the high dollar eye drops are doing the trick!! Well worth what they cost!! Stay healthy! I’m so glad for the good news! Kim
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