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Topic Title: PHASE 2 of my consolidated Bone Marrow Transplant blog
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Created On: 01/16/2020 08:19 AM
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 05/19/2020 06:00 AM
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Greensleeves

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Go ding!

 05/19/2020 07:34 AM
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dingpatch

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Ya!!! Greensleeves, I used to be a FSU Seminole but, I am now a Vandy Commodore!!!!!!!


And, Dave, as I said before, , , , you get REAL used to all the needles!!!! Just for you, Dave, , , , ,:





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Dora Hates You
 05/19/2020 08:15 AM
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Central Floridave

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ugh, squirm, wiggle-in-seat, quickly closing browser tab. Yes, I'm needle shy, but my time is coming eventually I'm sure.

Good Luck!
 05/19/2020 12:24 PM
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HAPDigital

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"They'll fix you. They fix everything."

 05/20/2020 06:08 AM
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dingpatch

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GOD WORKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

More to follow!!!!!!!!!!!!!!!!!!!!!!!

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Dora Hates You
 05/20/2020 09:37 AM
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dingpatch

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OK, SO!!!!!!!

Got a call from the Nashville VA this morning. The results of the "deep dive" that the experts at Vanderbilt did into my bone marrow biopsy of 5/5/20 came back Monday (5/18/20). The transplant team had a meeting yesterday and it HAS BEEN DETERMINED that I DO NOT have to have a bone marrow transplant!!!!!!

Total OMG! I was in tears. Time for some serious Day Drinking!!!!!!

There are some "anomalies" with the genetics of my bone marrow but, no more treatments required. I'm stopping the "belly shots" chemo and I'm going to go on a course of vitamins that they are going to prescribe. I'll have blood labs done the first week of July and we will go from there, , , , ,! OMG!!!

But, without Vanderbilt's "Deep Dive", everything would still point to me having "MDS". I am so F'ing lucky to be able to be treated by such World Leading Experts!!!

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Dora Hates You

Edited: 05/20/2020 at 12:22 PM by dingpatch
 05/20/2020 11:14 AM
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HAPDigital

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Grats! Free fins all around???
 05/20/2020 11:16 AM
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HAPDigital

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Really though, that's great news. WTF wants a bone marrow transplant. F that noise!!
 05/20/2020 11:45 AM
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Cole

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Score! Epic news.

Free fins all around!

Sorry, had to do it. lol

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I was right.
 05/20/2020 12:19 PM
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dingpatch

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Dora Hates You
 05/22/2020 04:39 AM
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dingpatch

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But now, , , , I may still have a problem with my bone marrow. No MDS or Leukemia but, the VA is digging into it to see if it is a singularly diagnosable "malady". But, it may be "just one of those things, , , ,".

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Dora Hates You
 06/03/2020 12:52 PM
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dingpatch

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Vanderbilt had reviewed the original biopsy slides and pathology report from my December 2019 bone marrow biopsy at Lake Nona and they found a couple things of "interest" and, as such, that is why they needed/wanted to do the "Deep Dive" into my marrow. I am off of the "belly shot" chemo! Just following the oncologist's orders to continue with my vitamins. It seems that the "lack" of certain vitamins can have some detrimental effects on bone marrow. The VA found that I have a autoimmune kinda thingy that prevents me from fully taking in dietary vitamin B-12 so, I will continue to have a B-12 shot once a month, , , ,. The "big 3" vitamins for this is D, folic acid and B-12. I'm still going to get blood labs drawn the first week of July and, , , , we'll go from there. For now, it could go into another course of treatments, maybe not.

Last night while I was eating my All You Can Eat Tacos at Tracy's Lounge (they make The Best tacos you will find anywhere around here. Their shrimp tacos are what dreams are made of, , , ,!) anyway, one of the regulars told me that I should get a "second opinion"? I guess he wasn't listening too good to my story or, he just did not "get it"? I told him ", , , , No, the cancer and bone marrow folks at VA/Vanderbilt gave me their best Biopsy Pathology study and report. Vanderbilt is The Opinion!

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Dora Hates You

Edited: 07/05/2020 at 05:25 AM by dingpatch
 07/05/2020 05:28 AM
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dingpatch

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Yay!!!!!!!!!

Today is my second Second Birthday! I had my Bone Marrow Transplant on July 5th, 2018.

Nothing new to report, at least not until I get the results of the blood work that will be drawn tomorrow in Viera.

Will advise.

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Dora Hates You
 07/05/2020 02:19 PM
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Cole

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Nothing new to report

And keep it that way. No news is good news.

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I was right.
 07/05/2020 03:07 PM
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fishkller

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Congrats Ding-

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When America was "great"
 09/16/2020 11:52 AM
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dingpatch

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So, , , , I've been getting monthly blood labs and will continue to do so, , , , , along with vitamins.

But, the first week of August I had another bone marrow biopsy at the Lake Nona VA. The folks at Vanderbilt looked it all over and got with my Lake Nona VA Oncologist and she called me yesterday morning. No MDS or leukemia but, there are still "genetic abnormalities" in my marrow, etc. No Change from previous analysis.

The Nashville VA will put my folder "back in the filing cabinet" on October 1st. The Nashville VA/Vanderbilt will still be my "official" bone marrow transplant team for the rest of my life.

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Dora Hates You

Edited: 10/17/2020 at 10:19 AM by dingpatch
 09/21/2020 07:38 AM
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waterlizard25

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Great news Ding! You have a great team in Nashville. Praying for you every day
 09/28/2020 08:39 PM
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ww

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I've turned into a fan of New York University-Langone Medical Center's "Doctor Radio" on XM. They've found some talkative real MDs around NYU. Some of their best friends are at Vanderbilt. I haven't been to the Viera clinic for years. My father was a regular patient. Have a happy Thursday.
 10/17/2020 10:26 AM
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dingpatch

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I had my more-or-less last appointment with the Lake Nona VA Transplant office yesterday. They are there if I need them again.

I went there to get the last of my vaccinations but, did not get any! First, my platelets are too low and I would bruise and have other "effects" from any injections. And, more importantly, my immune system is border-line critically low and, as such, a vaccination won't work on me. My immune system will not react to it very much and, as such, I would not produce many of the intended antibodies!!! Maybe later, , , , Big If. But, last year and earlier this year I did get all of the important ones so, I'm good-to-go.

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Dora Hates You
 01/08/2021 12:52 PM
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dingpatch

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BUT NOW! FUCK ME ONCE AGAIN!

I had my 11th bone marrow bipsy on Wednesday. My Oncologist just called me. The results are No Fucking Good. No Leukemia, but they are now pretty certain that I do have MDS.

I start the "belly shot" chemo this Monday morning. I may be able to get by with just the chemo because it did work very well last year.

We'll "go from there" but, Nashville is once again going to call me. I am totally Not Happy but, as before, I am so grateful that I will be treated by the top doctors at a National Center of Excellence.

"Would you rather get treated here today by the Doctors who wrote the Paper, or would you rather get treated somewhere else next week by Doctors who are reading the instructions?"

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Dora Hates You
FORUMS : NPNR : PHASE 2 of my consolidated Bone Marrow Transplant ...

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