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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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 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/16/2020 08:19 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/18/2020 04:48 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - SunriseSurfer - 01/18/2020 04:57 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/18/2020 05:46 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/20/2020 05:19 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/21/2020 11:32 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - waterlizard25 - 01/22/2020 05:54 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Central Floridave - 01/22/2020 07:03 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/22/2020 07:05 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - ww - 01/22/2020 09:44 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - ww - 01/22/2020 09:45 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/25/2020 04:47 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - wtf - 01/27/2020 05:39 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 02/01/2020 04:07 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - waterlizard25 - 02/04/2020 01:09 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 02/05/2020 06:48 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - ww - 02/06/2020 08:42 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 02/07/2020 05:34 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - steveholloway - 02/07/2020 07:51 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Greensleeves - 02/07/2020 01:11 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 02/11/2020 03:26 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Cole - 02/20/2020 07:52 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 02/26/2020 02:41 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 03/08/2020 02:24 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Cole - 03/08/2020 06:44 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 03/09/2020 02:22 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 03/19/2020 12:46 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 03/25/2020 09:37 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 04/02/2020 11:37 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 04/06/2020 01:04 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 04/10/2020 07:28 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 04/22/2020 09:16 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/06/2020 04:20 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/08/2020 04:13 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/14/2020 06:39 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Cole - 05/15/2020 02:04 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/15/2020 02:22 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/18/2020 02:14 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - theglide - 02/07/2020 05:14 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Central Floridave - 05/19/2020 05:31 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Greensleeves - 05/19/2020 06:00 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/19/2020 07:34 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Central Floridave - 05/19/2020 08:15 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - HAPDigital - 05/19/2020 12:24 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/20/2020 06:08 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/20/2020 09:37 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - HAPDigital - 05/20/2020 11:14 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - HAPDigital - 05/20/2020 11:16 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Cole - 05/20/2020 11:45 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/20/2020 12:19 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 05/22/2020 04:39 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 06/03/2020 12:52 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 07/05/2020 05:28 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Cole - 07/05/2020 02:19 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - fishkller - 07/05/2020 03:07 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 09/16/2020 11:52 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - waterlizard25 - 09/21/2020 07:38 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - ww - 09/28/2020 08:39 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 10/17/2020 10:26 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/08/2021 12:52 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Greensleeves - 01/08/2021 01:10 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - ww - 01/08/2021 05:06 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/13/2021 03:25 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/14/2021 03:40 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/17/2021 04:44 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Central Floridave - 01/17/2021 06:02 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Greensleeves - 01/18/2021 06:00 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Cole - 01/18/2021 06:28 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 01/18/2021 08:12 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 02/10/2021 03:23 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Cole - 02/11/2021 04:10 PM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 02/12/2021 03:17 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - Cole - 02/12/2021 04:31 AM  
 PHASE 2 of my consolidated Bone Marrow Transplant blog   - dingpatch - 02/12/2021 02:45 PM  
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 01/16/2020 08:19 AM
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dingpatch

Posts: 16534
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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? Nope, my Brother is No F'ing Good. He is "too old" and he has had Melanoma! The VA will look at "Be The Match" for a donor.

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: 05/18/2020 at 02:02 PM by dingpatch
 01/18/2020 04:48 AM
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dingpatch

Posts: 16534
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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 BIG 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: 05/18/2020 at 02:04 PM 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: 16534
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

Posts: 16534
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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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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: 15198
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    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

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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.

-------------------------
The Biden admin has more accomplishment in 2 months than trump could muster in 48 months. trump basically quit - he' a loser that bankrupts/fails everything he touches.
 02/01/2020 04:07 PM
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dingpatch

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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

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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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 02/11/2020 03:26 AM
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dingpatch

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Friday (2/7) was more blood labs for Oncology, , , , . Some good! Some a little worse. More labs tomorrow morning (2/12). If there is no improvement, I'll probably get two (2) units of "packed" blood on Thursday (2/13) !!

On another note, , , , yesterday's chemo made me Sick As A Dog. Gonna need extra anti-nausea meds today!

Edited: 02/28/2020 at 05:49 AM by dingpatch
 02/20/2020 07:52 AM
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Cole

Posts: 51826
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What doesn't kill us makes us stronger, but you don't have to like the fucking process.

You sound good and positive ding, keep swinging for those fences.

-------------------------
So long and thanks for all the fish.
 02/26/2020 02:41 PM
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dingpatch

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No more problem with the chemo; the "anti-nausea" pre-meds did their job.

I've been getting blood labs done every week and they've been so-so BUT, yesterday's labs showed a hemoglobin count of only 6.7; the "cut off" is 7.0. So, I had to go to Lake Nona this morning to get a unit (pint) of blood! More labs next Tuesday, , , , ,.

The transfusion did in fact "perk me up" a bit.

Edited: 02/28/2020 at 05:50 AM by dingpatch
 03/08/2020 02:24 PM
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dingpatch

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Went to Lake Nona this past Friday (3/6/20) for my dental screening, which was my last "pre-Nashville" check-up. No problems found and, a such, I should be finally cleared for the transplant. At least, by Lake Nona VA standards. Lake Nona will put my "package" together and forward it to the Nashville VA for review and final clearance.

Tomorrow morning I start another week's worth of "belly shot" chemo.

Edited: 03/08/2020 at 02:25 PM by dingpatch
 03/08/2020 06:44 PM
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Cole

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The transfusion did in fact "perk me up" a bit.

Does the sun burn you more these day?

Eyes getting light sensitive?


-------------------------
So long and thanks for all the fish.
 03/09/2020 02:22 PM
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dingpatch

Posts: 16534
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Cole, I can't tell that I got any "side effects", other than the "boost.

I did see my Oncologist before chemo this morning. "Most" of my blood numbers are "up" to a more "acceptable" range! My total white count is still "critically low" but it is lots better than it was the other week. Up, and onward!
 03/19/2020 12:46 PM
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dingpatch

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The VA just called. They will do a phone "Transplant" interview with me tomorrow morning so that I do not have to travel to Lake Nona and be "exposed"!! Yay! It has not been too big of a deal riding the shuttle over there for chemo but, I have to be at Viera by 8 AM and then I don't get home until about 3 PM.

Edited: 05/18/2020 at 02:09 PM by dingpatch
 03/25/2020 09:37 AM
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dingpatch

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The "phone interview" went well and was otherwise pretty much a compusorary "Name, Rank and Serial Number" thing. The VA Transplant Coordinator, Heather, and I have met and talked somewhat frequently over the past 28 months.

I am "approved" by the Lake Nona VA and, as such, they forwarded my "package" to the Nashville VA Friday afternoon.

Now, the ball is rolling and I already have an initial, video, appointment with the Director and Team in Nashville on April 2nd. I should have abetter idea about me needing a bone marrow donor and such, and also a pretty good idea of what the schedule will be.

I'll keep you posted.

Edited: 03/27/2020 at 06:27 PM by dingpatch
 04/02/2020 11:37 AM
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dingpatch

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I had the video conference this afternoon with my "Team" (Doctor and Nurse Practitioner) at the VA in Nashville. Nothing really to add at this time, other than; they will proceed to find me a donor "match", even without "COVID" it would be months away and, in any case, nothing much will proceed until "COVID" is no longer an issue. Wait and see.
 04/06/2020 01:04 PM
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dingpatch

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Started my 4th monthly (week long) chemo at the Lake Nona VA this morning. I thought it was unusual when they took me to a room other than the regular "infusion center". From what I could see, there were open seats. The nurse said that I was getting a "private room" because they did not want me "mixing" with the other folks. Hmmmmmm!? Most of the other "folks" are no better off then I am. While I was sitting in "my" room waiting for the chemo meds to get there from the pharmacy, one of the Transplant people who was working from home called me. She asked me how I was feeling, etc. . . . and that she had seen the recent communications between Lake Nona and Nashville regarding my upcoming Transplant, etc. But then she asked me about how/what I was doing about meals and such. No problems, I know how to cook pretty darn good, etc. She asked if I was doing my own shopping. Yes, Walmart and Publix, quickly in-and-out. Well, you know that you are in the Very High Risk group (not just plain old "high risk" but VERY HIGH RISK!) and you SHOULD NOT be going into ANY stores! She told me to do "pickup" at Walmart or have Publix deliver and, again that I SHOULD NOT be going into any stores! Hmmmmmm, , , , , OK, I get it. The Fear OF God has been instilled into me.

Then, a Lake Nona Transplant nurse came in. There had been some email from Nashville concerning some additional testing they wanted done but, no hurry. Oh Boy, Goody. I get to have another Bone Marrow Biopsy (which is normally done somewhere between the 4th and 8th chemo cycle). They want me to see Dermatology for a skin check and also have a MUGU Scan (nuclear medicine heart stress test). They gave me the little "smear of poop kit" to do and turn in. And, the most very best part of it all is they want me to see the Urologist again for another "Greasy Finger" up the butt examine!!!

Today started my 4th month of this chemo and it does seem to be taking effect. My platelets are up to a "normal" range! My hemoglobin is up to "almost" a normal level, but my white count is better but still "Low" and, as such, I really do not have much of an immune system.

Edited: 04/10/2020 at 07:21 PM by dingpatch
 04/10/2020 07:28 PM
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dingpatch

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Finished my 4th month of 1 week chemo today. No Problems.

The VA Nashville/Vanderbilt want some more tests done. ANOTHER Bone Marrow Biopsy (my 5th!), which would be done in any case sometime between the 4th and 8th rounds of this chemo. Dermatology "Skin Check", Nuclear Medicine heart stress test (MUGA Scan), and my most very favorite, , , , Urology. Lots more blood labs, ect. once I get the "typing" kit for the donor search.
 04/22/2020 09:16 AM
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dingpatch

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Going to drive to Nashville on May 4th and have appointments and tests and such on the 5th, 6th and 7th as part of the "donor activation visit" They reportedly have found multiple matches for me but, the VA needs to see me and lay their hands upon me before they can move forward.

Initial indications are that "the real stuff" would be 6, or so, weeks after this visit.
 05/06/2020 04:20 PM
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dingpatch

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Uneventful drive Tuesday. Set the cruise control on 84 and flowed along with traffic. Drove 95, 528, Turnpike, 75, 475, 75, 24 to Nashville.

Started bright and early Tuesday (5/5/20) morning at 7am. Went to Pulmonary first for a Pulmonary Function breathing and O2 and CO2 test. Then back to BMT where they took more vials of blood than I could count. Peed in the bottle. Then had a pleasant bone marrow biopsy, LOL LOL. Then an EKG, then a chest X-ray, then a MUGA scan. Got back to the hotel room sooner than I expected.

Wednesday started bright and early at 7am with a PET scan. Then up to the BMT clinic for vitals, a good talk with my Nurse Practitioner (NP) Case Manager, then an in-depth talk with the NP and my Transplant Doctor; why I need a Transplant, the good things, and the Bad things, etc. All went well. All of my tests were good, except that they had not got back the results of the PET scan, and the bone marrow would take a little longer because they were doing a very deep dive into the genetics of my marrow. And, , , , my White Count was up to 2.2 from 1.8!!! I will be inpatient at the VA Medical Center during the Transplant process (about 3 weeks) but for a period of time after the transplant, my immune system will be rated as "0.00%"!!!!!

After the discussions with the NP and Doctor, I asked what was next for Thursday. They were happy to report that I was done for now and that I could go home Thursday and not wait until Friday as originaly scheduled!! YAY!!.

IF, all is OKAY, the BMT department will start the donor process. From there it will be 6 to 8 weeks before I go back to Nashville for the Really Big Show!! But, it could be a longer wait if they find that my bone marrow can "wait". They are very hesitant to put me through the "wringer" if not immediately needed due to the threats of that little "COVID" thingy.

The drive home was, again, uneventful. Drove 24, 75, 475, 75, 10, 275, 95. Set the cruise on 85 and kept up with traffic all the way home. We had more than a few idiots pass us like we were sitting still!! Speed on Brother, Hell aint half full. It was a 10.5 hour drive each way.

Edited: 05/08/2020 at 04:12 PM by dingpatch
 05/08/2020 04:13 PM
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dingpatch

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If anything is not OK with my bone marrow, or the PET scan, I figure that my Oncologist will talk to me about it during my visit with her Monday morning.
 05/14/2020 06:39 PM
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dingpatch

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Timeline:
1st week testing and review results
2nd week get line, admitted and start chemo
3rd week finish chemo and transplant: Day 0
In hopstial probably for another 14 days til blood count recovery

You will be in Nashville for at least 100 days after Day 0
during your inpatient stay, you do not have to have a support person there the whole time. We encourage, but not required.

You listen very well. Damn near perfect!!



AND, , , , the chemo is starting to work a little bit better, , , , my White Count is "up" to 3.9!! 4.2 is the minimum of the "normal range.

And, the VA NP and Doctor made it very clear to me last week that after this Transplant, I WILL BE THEIR PATIENT for the rest of eternity in regard to anything to do with the transplant. Anything in regard to "check ups", "follow ups", "problems", etc will be done in Nashville. The Lake Nona location will only be a starting "reference" point. Lots of travel coming up over the 12 months after the Transplant.

Edited: 05/14/2020 at 07:00 PM by dingpatch
 05/15/2020 02:04 PM
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Cole

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Thank the Maker you have the VA. Just imagine trying to do this as a regular person. Treatment has to be in the millions.

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So long and thanks for all the fish.
 05/15/2020 02:22 PM
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dingpatch

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Not quite "millions" but last time they told me it was really close to 1/4! (BUT, I did do a search and found that "Joe Public of my age would end up creating "billings" of over $1 million!!!!

But the VA and Vanderbilt have a symbiotic relationship on this:

The VA Medical Center is located in the middle of Vandy's campus and it is physically connected to the Vandy Medical Center and Cancer Institute. The VA gets to have access to all of Vandy's "state of the art" treatments and stem cell research/specialists (along with many other organ transplant disciplines). Vandy gets to have access to the large VA pool of patients and the Vandy doctors work at the VA, for the VA, and as such, Vandy does not have to cover any "liability insurance costs" for their efforts at the VA!!! It works to everyone's best interests.

Between the VA and Vandy, that location performs more bone marrow/stem cell, kidney, liver and lung transplants that any other place in the country!

Again, I had previously been upset about being sent to a VA facility in Tennessee (before I knew what really goes on there). "Why can't you send me to somewhere good here in Florida like Moffitt?" "Well, would you rather get treated here by the doctors that wrote the paper or, do you want to get treated somewhere else where the doctors are reading the instructions?" !!!!!!

Edited: 05/19/2020 at 07:39 AM by dingpatch
 05/18/2020 02:14 PM
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dingpatch

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Finished the 5th round of "belly shot chemo" this past Friday (5/15/20). Same old but, my little belly is pretty darn tender right now. Not too tired or such but, my "taste" aint no good. Oh well, could be worse.

Edited: 05/18/2020 at 02:21 PM by dingpatch
 02/07/2020 05:14 PM
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theglide

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Hang tough Ding.

You have all of us praying and supporting you!

You WILL win this fight!
 05/19/2020 05:31 AM
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Central Floridave

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Ugh. I'm needle shy so reading this hurts me, but obviously not as bad as it hurts you. Hope it works. Hang in there.
 05/19/2020 06:00 AM
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Greensleeves

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Go ding!



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 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, , , , ,:



 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."



-------------------------
I’VE SWORN AN OATH OF SOLITUDE UNTIL THE PESTILENCE IS PURGED FROM THESE LANDS.
 05/20/2020 06:08 AM
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dingpatch

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

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

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???

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I’VE SWORN AN OATH OF SOLITUDE UNTIL THE PESTILENCE IS PURGED FROM THESE LANDS.
 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!!

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I’VE SWORN AN OATH OF SOLITUDE UNTIL THE PESTILENCE IS PURGED FROM THESE LANDS.
 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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So long and thanks for all the fish.
 05/20/2020 12:19 PM
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dingpatch

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 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, , , ,".
 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!

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.
 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.

-------------------------
So long and thanks for all the fish.
 07/05/2020 03:07 PM
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fishkller

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Congrats Ding-

-------------------------

 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.

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.
 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?"
 01/08/2021 01:10 PM
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Greensleeves

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Damn. Hoping for you ding. You definitely come across as smart and tough. You can do it!

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 01/08/2021 05:06 PM
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ww

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Yuck. My neighbor finsished her chemo just before Christmas.
 01/13/2021 03:25 AM
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dingpatch

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The "belly shot" chemo is not too bad; two shots under the skin for 5 days in a row, once a month.

Got up Monday morning, felt like pure shit. Took a shower but had to sit down before I could finish drying off. Felt totally wasted. Got to the the VA and was ready to lay down on the floor. I had planned to ask about getting a unit of blood but before I even saw my Oncologist the infusion nurse came to tell me that I was "critically" anemic and that my Doctor could not let me go home without it. Downside was that I had to go to the Emergency Department to get it. CRAP! OK, so they wheeled me down after chemo and started to give me a pint. But, the ED Doc came back in and said that they were giving me 2 units and, as such, it all would take over 4 hours and that she could not keep me in the ED exposed to all the COVID that was coming in so, I was admitted to the hostpital to get the second pint and so that they could monitor me overnight. No problems. I was discharged Tuesday morning and wheeled back to Oncology Infusion for my daily chemo. I still don't feel up-tp-speed but, I feel OUTSTANDING compared to how I was Monday morning. Getting ready to go back and get more chemo this morning.

Edited: 03/07/2021 at 04:58 AM by dingpatch
 01/14/2021 03:40 AM
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dingpatch

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Lots more to follow but, for now, , , , , as of yesterday morning the Lake Nona VA Transplant Coordinator put in the orders to send me to Nashville for my second bone Marrow/Stem Cell Transplant. I start this morning when they will take 25 vils of blood for just the "beginning" labs.
 01/17/2021 04:44 AM
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dingpatch

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To bring you up-to-speed, , , , , please do not hesitate to tell me if it gets to be Too Much Information!

First off, I do not expect to actually ask anybody to do anything for me in regard to my "care"; the VA just wants to be sure that I'll have a good local "support" network after I get back from Nashville.

So, yes, I have once again been diagnosed with MDS (MyeloDysplastic Syndromes), which is considered to be a cancer of the bone marrow. The "belly shot" chemo has previously worked on improving my blood counts but, the chemo is not a cure. And, there is always a possibility of the MDS changing into AML (Acute Myeloid Leukemia). The Bone Marrow/Stem Cell Transplant will be the "cure". My last Bone Marrow Transplant could be considered to be "preventive" to keep me from getting Diffuse Large B Cell Lymphoma for a third time!. This one will be considered to be "life saving". My MDS is considered to be "treatment induced" from all of my previous chemos and such. No worries, I'm good.

Since Thanksgiving my hemoglobin has been so low that the anemia kept me in bed most of the day. My Springer Spaniel Carlee had no problems with that at all; she had me all to herself in the "big bed"!! LOL!

In early December I had had my 10th bone marrow biopsy at the Lake Nona VA and it was sent to my Team in Nashville. My Transplant Doctor at Vanderbilt got back to my Oncology Doctor at Lake Nona and told her that the biopsy sample was Crap and that she wanted good samples. So, my brother took me to the Lake Nona VA on the Morning of January 6th. I checked into Surgery and they got me prepped, took me downstairs to a special CT Scan room and the surgeon looked at the the CT for a good spot to dig into my hip for the biopsies. OK, good to go, the nurse prepped the site, the surgeon gave me some pretty heavy shots of local lidocaine, and the Nurse gave me a big Shot of "I Don't Care" sedative and the Surgeon got two good samples. No problems and I did not feel a thing.

Sure enough, my Lake Nona Oncology Doc called me last Friday afternoon, , , , , yep as expected, MDS. She had already scheduled me to start chemo on the 25th but she said that we would not wait and she wanted me to start ASAP. So, I started this past Monday (11th). Last Saturday and Sunday I felt like Pure Shit. On Monday morning it was all I could do to take care of Carlee and make some coffee. I got a shower without a problem but I was so tired that I had to sit on the bed to dry off. By the time I got to Lake Nona I was ready to lay down on the floor there. I was sure that I needed a transfusion and was going to let my Chemo nurse know. But before anyone else saw me my Oncologist's nurse came out to the waiting room and told me that my hemoglobin was critically low and they could not let me go home without a transfusion. OK, let's get it done. Well no, there was no room in the Chemo Infusion Clinic's schedule until Thursday so, after chemo they wheeled me down to the Emergency Department (ED) for the transfusion. I required two units of "packed" blood. It took a couple hours but the ED did get the first unit pumping into me. Then the ED Doctor came in and told me that it would be quite a few more hours (the blood itself took over 2 hours per unit to get into me and after the first unit was done they would still have to request the second unit) so, and as such, she Could Not and Would Not keep me in her COVID dirty ED so, she had admitted me to the hospital. They took me to my room pretty quickly but it was Midnight before the second unit of blood was done. They discharged me first thing Tuesday morning and wheeled me down to Oncology for my daily chemo.

So, I'm in my chair waiting for "vitals" and pre-meds, etc. before chemo and I see my Lake Nona Transplant nurse coming down the hall. She is the Lake Nona Transplant Coordinator's nurse assistant. I've known both of them for over 3 years now. Well, yep, she comes straight to me. They were putting in the orders to start my journey to Nashville and, as such, all of my local VA testing would start Thursday morning. My Thursday chemo session started with drawing 25 vials of blood labs, urine sample, and a special blood lab to see if I needed more blood. Then downstairs for a chest Xray. Then I got a call from the Transplant Surgery Psychologist and the Transplant Social Worker. Then while I'm getting chemo Friday I got my schedules for Cardiology and Pulmonary testing. Lots more testing to come. The only department at Lake Nona that I will not see is "vision". I have to pass all of my local testing, then Lake Nona will submit my file to the VA/Vanderbilt for review and final approval. Once approved, The Full Monty will begin. Eventually, I will be in Nashville for 4 months!

In the meantime I am to get blood tests every Wednesday in Viera and if needed I will go to Lake Nona for blood transfusions on Thursdays. Oh Goody! My next week of chemo (Monday thru Friday) starts on Feb 8th.

I know that I am being treated by the world's leading experts at the Nashville VA/Vanderbilt; they are nationally ranked and are one of the very first Nation Centers of Stem Cell Excellence. As the one Nurse Practitioner there told me last May; do you want to get treated here by the Doctors who Wrote The Book or, do you want to get treated somewhere else next week by Doctors who are reading the instructions??!!?? I used to be a FSU Seminole but I am now a Vanderbilt Commodore!!

Edited: 01/17/2021 at 05:26 AM by dingpatch
 01/17/2021 06:02 AM
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Central Floridave

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Go Vandy and Go Dingpatch. Hope you get over this bout.
 01/18/2021 06:00 AM
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Greensleeves

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Wishing the best for you ding! Get yourself some hot chicken!

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 01/18/2021 06:28 AM
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Cole

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Sorry Ding, what a fucking nightmare!

Keep up the fight and kick it's ass again.

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So long and thanks for all the fish.
 01/18/2021 08:12 AM
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dingpatch

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I do like the hot chicken but, some of it is hotter than Hell!! If you've never had it I solidly recomend that you chew on a raw Scotch Bonnet prior so that you can "condition" your mouth for what's to come!!

Edited: 01/18/2021 at 11:54 AM by dingpatch
 02/10/2021 03:23 AM
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dingpatch

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Been getting a transfusion of blood and/or Platelets every week since Jan 11th. Blood labs every Wednesday and if needed blood and/or platelets on Thursdays.

Started a heavy duty anti-bacterial med (Levofloxacin) and a anti-fungal (Fluconazole) med yesterday, along with a new chemo pill (Venclexta); it is for Lukemia but Vanderbilt likes how it helps MDS symptoms. My white count is sticking to around 1.1 for now; the belly chemo and the new pill will start to bring it up by March.

Edited: 02/13/2021 at 01:14 PM by dingpatch
 02/11/2021 04:10 PM
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Cole

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What is a healthy white count number?

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So long and thanks for all the fish.
 02/12/2021 03:17 AM
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dingpatch

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4.5 is "low", 10.5 is high, mine has been running around 1.2

And, Yey! The chemo might already be starting to work; no blood transfusion(s) needed this week!
 02/12/2021 04:31 AM
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Cole

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Good to hear on the no transfusion.

As the English say: Keep your pecker up!

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So long and thanks for all the fish.
 02/12/2021 02:45 PM
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dingpatch

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Got my first "official" call about it all this afternoon, , , ,

Just from Lake None and not Nashville yet but, I expect to hear from them next week.

I go to the Lake Baldwin VA on the 5th to have my face-to-face with my Transplant Coordinator and start all of the labs that Nashville requires; about 22 vials for all the "standard" labs, a pretty special drawn for Nashville to send to "Be The Match" to select posibble stem cell donars, etc. Then I get to "pee in the cup" with a Zero Tolerance policy, i.e. THC will be 0.00%, and then a special blood lab for nicotine; it will also be Zero Tolerance with a 0.00% (I have not smoked cigs since 1982. Some of those poor Vets smoke constantly and they are absolutely freaked out about "Zero" nicotine.

It begins.
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