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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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 01/08/2021 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 sthe skine 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 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: 01/17/2021 at 04:30 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.
 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?
 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!
 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.
FORUMS : NPNR : PHASE 2 of my consolidated Bone Marrow Transplant ...

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