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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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 01/16/2020 08:19 AM
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dingpatch

Posts: 14194
Joined Forum: 07/24/2003

It's Deja Vu all over again!!!

To recap recent activity, , , , ,

FOOK Me!!!!

>>>. I had blood labs 12/19/19 to check to see if my "counts" had come up after all the B12 and Folic acid. After the chemo in 2018, my blood "counts" will never be as high as they once were, OK, knew that, , , , ,!

BUT NOW, , , , they are still low; too low for my Oncologist to be happy, , , , ,!

So, I'm going to have the pleasure of having another bone marrow biopsy (my 4th, they are so easy to forget, , , ,)! The Lake Nona VA does bone marrow biopsies on Wednesdays but, that is Christmas and New Years Day, and my Docotor wants it done ASAP so they have made special arrangements and scheduled my biopsy for the 30th. So cool, I just can not wait, , , , , NOT!!! LOL

My Oncologist also told me to keep close track of my temperature; if I get a fever, GO to the ER ASAP because I have a very weak immune system.

>>>. Bone marrow biopsy results are in and I have a case of Myelodysplastic Syndrome. Not too big of a deal, considering that it could have been Acute Leukemia!!!

Going to start rounds of a light chemo. No "infusions", just little shots in the belly.

BUT, good possibility of another free vacation (LOL) in Nashville for a "bone marrow transplant".

>>>. The "ball" has already started rolling, , , , , ALL of my counts are low, and my White Count is Critically Low. IF I get a fever, I am to go to the ER.

My VA Oncologist called me shortly after I got home yesterday afternoon. I start chemo this Monday (1-13-20), and then every day after that for the rest of the week. Rinse-and-repeat again for 5 days every following month until there is an improvement in my blood counts.

BUT, it will not stop there. The Director of the Bone Marrow Transplant unit in Nashville has already placed orders to have me start the process of returning to Nashville for a new transplant! Although, this time, I will need a compatible bone marrow/stem cell donor. My own bone marrow is No Fucking Good.

My brother will be the first donor candidate. If he is not a "match", I'm open to suggestions. Who here would like to be my BFF and get a free trip to Nashville? Oh, and, , , , the down side for you would be the blood tests for "substances": NO THC, NO nicotine (no smoke, dip, gum or patches!), NO NICOTINE.

YEP! Got the call this morning (1-16-20), I have my first appointment with "Transplant" on Febuary 7 and after that, the ball will be in full motion!!

Edited: 01/17/2020 at 05:37 AM by dingpatch
 01/18/2020 04:48 AM
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dingpatch

Posts: 14194
Joined Forum: 07/24/2003

Had my last "belly shot" chemo for the month yesterday (Azacitidine). No problems there, I did take the steroid pills but, not the anti-nausea. They had been giving me constipation. BIG mistake! I ate two (2) small left over pieces of pizza at around 3:30 and by 5:00 it was "No Holds Barred". I have not been sick like that in many, many, years. The heavy-duty R-CHOP chemo and the "Close To Death" bone marrow killing chemo were Never as bad. Much mo betta now, finally got to the point where I could hold down some double-strength ginger tea.

I did get to talk with the Transplant Coordinator's lead nurse yesterday. Yes, my brother is my primary donor candidate, pending testing of his blood and bone marrow. If not, there will be a "casting call" for possible donors. I had assumed that any 1st cousins would also be acceptable. NOPE, no other relatives are acceptable. I'll keep ya'll posted.

Edited: 01/18/2020 at 05:38 AM by dingpatch
 01/18/2020 04:57 AM
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SunriseSurfer

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Damn Howard.... prayers going out for you.




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Puerto Rico 11 - 24 - 2013
 01/18/2020 05:46 AM
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dingpatch

Posts: 14194
Joined Forum: 07/24/2003

For now, I "presume" that we will be put up at the same Homewood Suites as last time. Right across the street from the middle of the Vanderbilt University campus. Less 1/2 mile from the VA/Vandy medical centers. The new, Big Bonus Plus, is that Martin's BBQ Joint is now open right behind the hotel. Pretty much The Best Whole Hog BBQ anywhere in this country!!! Their brisket rocks for sure but, their Whole Hog will change your world view.

https://martinsbbqjoint.square...midtown-nashville-menu

Edited: 01/27/2020 at 05:41 AM by dingpatch
 01/20/2020 05:19 AM
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dingpatch

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The azacitidine is kicking my ass, , , , ,:

Vidaza (azacitidine for injection) is a cancer medication used to treat certain types of bone marrow cancers and blood cell disorders. Common side effects of Vidaza include:

injection site reactions (redness, pain, bruising, irritation),
tiredness,
weakness,
diarrhea,
headache,
dizziness,
anxiety,
trouble sleeping (insomnia),
constipation,
stomach pain,
nausea and vomiting (may be severe),
loss of appetite,
joint or muscle pain, or
cold symptoms such as stuffy nose, sneezing, or sore throat.

Tell your doctor if you have serious side effects of Vidaza including:

easy bleeding or bruising,
chest pain,
muscle cramps,
irregular heartbeat,
swollen ankles or feet,
mental/mood changes (e.g., anxiety, depression),
changes in the amount of urine,
dark urine, or
yellowing eyes or skin.

The recommended starting dose of Vidaza for the first treatment cycle, for all patients regardless of baseline hematology laboratory values, is 75 mg/m² subcutaneously or intravenously, daily for 7 days. Cycles should be repeated every 4 weeks. Other drugs may interact with Vidaza. Tell your doctor all prescription and over-the-counter medications and supplements you use. Vidaza is not recommended for use during pregnancy. Men using this medication should avoid causing pregnancy during treatment. It is recommended that men and women use 2 forms of birth control (e.g., condoms and birth control pills) while using this medication and for some time afterward. Consult your doctor to discuss birth control. It is unknown if this drug passes into breast milk. Because of the possible risk to the infant, breastfeeding while using this drug is not recommended.

Our Vidaza (azacitidine for injection) Side Effects Drug Center provides a comprehensive view of available drug information on the potential side effects when taking this medication.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
 01/21/2020 11:32 AM
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dingpatch

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Joined Forum: 07/24/2003

Well, , , , it "officially" started today! Just got the first call. Blood labs and chest X-rays on Friday (1-24-20). Then, they will call me for appointments for Pulmonary, Cardiology, Dental, Psych, Drug screening, etc, etc, etc. . . .
 01/22/2020 05:54 AM
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waterlizard25

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Praying for you Ding!
 01/22/2020 07:03 AM
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Central Floridave

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B.U.M.M.E.R. Thanks for keeping us updated. Stay positive (as best you can). !
 01/22/2020 07:05 AM
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dingpatch

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I'm hoping to be in Nashville during CMA Fan Fest like I was two years ago, , , , I had loads of fun before they "cracked down" on me and started putting me through their "paces" at the hospital!!

All those Country Cow Girls were just about too much to see!! Bare, 40 inch legs, with the smallest, shortest, most tattered pairs of Levi Daisy Dukes you can imagine. Tiny little tank tops with leather vests. $3000 boots, Cowboy Hats and big, big, Broadway smiles!!!
 01/22/2020 09:44 PM
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ww

Posts: 14815
Joined Forum: 08/17/2007

    Yuk. My neighbor across the street just lost a year to a less nasty cancer, and is expected to be free of it.
    I've been to the Vandy campus once, spent the day in a basement with a prof. Nashville's a resilient city, survived horrible flooding that happened without the country not much noticing.


Edited: 01/22/2020 at 09:45 PM by ww
 01/22/2020 09:45 PM
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ww

Posts: 14815
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Not to mention there's some beautiful natural areas around Nashville. Cedar glades with almost no soil.

Edited: 01/22/2020 at 09:46 PM by ww
 01/25/2020 04:47 AM
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dingpatch

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Yesterday was not too bad; a couple chest X-Rays and only 18 vials of blood were taken.
 01/27/2020 05:39 AM
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wtf

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Wow man - hang in there. Sending positive vibes your way.

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trump - putting the 'con' in conservative
 02/01/2020 04:07 PM
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dingpatch

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Joined Forum: 07/24/2003

Yesterday was an echocardiogram (and had my chemo port flushed).

Today was a 2 hour "Mental Health Screening" for transplant clearance. The shrink was pretty nice and all went well. Also deposited a little pee-pee for them.

Still have plenty of tests and evaluations to go through. Between Lake Nona and Viera the ONLY thing I do not get checked is my eyes! Otherwise, EVERY specialty clinic gets to "see" me!!!

On the bright side, I do not need another P.E.T. scan; I've had plenty and have recently had CAT scans and x-rays. I do not need a colonoscopy because my previous one is still "fresh".
 02/04/2020 01:09 PM
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waterlizard25

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Keep trucking Ding!!!
 02/05/2020 06:48 AM
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dingpatch

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Yay!!

My pee was clean! Some "bad" pee could have led to delays in getting up to Nashville.

I want to get this moving because, this Myelodysplastic Syndrome is some BAD SHIT!!!

Oh, and, , , , my first meeting with "transplant" has been moved out so more testing can be completed before they add "2 plus 2"

Edited: 02/05/2020 at 06:50 AM by dingpatch
 02/06/2020 08:42 PM
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ww

Posts: 14815
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I think I've had my last colonoscopy. Or next to last. People normally don't need them frequently. The amount of tech is amazing. Are you sure no one needs to see your eyes? Teeth?
 02/07/2020 05:34 AM
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dingpatch

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No eyes but, a full dental exam, , , , for any infection risks
 02/07/2020 07:51 AM
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steveholloway

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God Bless You Howard
 02/07/2020 01:11 PM
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Greensleeves

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Stay tough ding!


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