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Topic Title: High Dose Therapy and Stem Cell Transplantation
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Created On: 03/14/2018 06:21 PM
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 06/05/2018 09:28 AM
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CERTON

Posts: 1821
Joined Forum: 04/22/2011

When in Nashville, we like to go HERE and/or HERE, both of which are less than a mile from Vanderbilt.  

We're thinking about you Howard... Kim and Rydyr ask me for updates on how you're doing and we have your band whenever you're around.



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"Don't count the days, make the days count." -Ali
#rydyrstrong
 06/05/2018 07:58 PM
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surfsail

Posts: 5074
Joined Forum: 07/28/2003

Hope all goes well - def does not sound fun but hang in there.

Our thoughts and prayers are with you.



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There are NO white people at all in the Bible... take all the time you need with that...
Please stop feeding the trolls - they will go away if you do...
 06/08/2018 03:53 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

Week 1 Recap

Monday, 6/4/18:

Check in and get my schedule for the week. Met a few FNGs like me and a lot of folks in various stages of their own multi-month process. Very good group of people! The patients, staff and care givers operate like a big family unit.

First, went down the hall for an EKG, then down to the radiology dept in the "basement" for a chest X-ray. Back to the 2nd floor to the Bone Marrow Transplant dept (BMT) to draw 20 vials of blood for labs. Then down to the first floor for pulmonary testing, then back down to the basement for a nuke med MUGA scan. All-in-all, not too bad of a day. Got back to the hotel about 2:00 PM.

Tuesday, 6/5/18: Off day!

Wednesday, 6/6/18:

Reported to the basement at 7:00 AM for a nuke med PET/CT scan. Then back to the BMT Dept to give a little bit more blood and to talk with the Social Worker. Then my most favorite thing; a bone marrow biopsy!! Lovin it! Hardly felt a thing.

Thursday, 6/7/18:

Reported bright and early to the BMT for a de-brief, and an overview of my upcoming schedule with my nurse. Blood labs; clean with the only thing showing was that I had been exposed to Chicken Pox (had it when I was 6), I'll take med for a year after this and then get a Shingles vaccine. PET scan; clean as a Safeway chitlin! Bone marrow was not back yet and they need to check it to see if I've had any chromosome damage from the prior chemo. Then had a good meeting with my BMT Doctor.

Friday, 6/8/18: Off day.

Next week will start the Stem/White cell collection process.

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Dora Hates You

Edited: 08/09/2018 at 09:13 AM by dingpatch
 06/08/2018 05:38 AM
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Cole

Posts: 68180
Joined Forum: 07/22/2003

Amazing science going down!

Good luck!

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I was right.
 06/08/2018 06:10 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

Quite a group and facility. This location performs more kidney, liver, lung and bone marrow transplants than anywhere else in the country! They do this 365/24/7. Most of the doctors I've seen are from Vanderbilt. No better place in the world to have it done.

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Dora Hates You
 06/09/2018 05:31 PM
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ww

Posts: 16088
Joined Forum: 08/17/2007

Vanderbilt's a solid university.  It seems a bit overshadowed by Duke, but pretty much in the same league.  Nashville's quite a nice town. 

 06/10/2018 02:04 PM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

All the fun stuff starts tomorrow!

Monday, Tuesday and Wednesday I'll be given shots of what is more-or-less the same drug(s) used in Neulasta to rapidly stimulate my production of white cells. The dose will be twice that which is given by the On-Body Injector they used on me after each CHOP chemo session. No Big Deal other than the fact that my bone marrow will start producing white cells faster than they can get out of my bones and into my blood stream. This will result in various levels on "bone pain" as my bones more-or-less swell from the excess load of white cells!!!! They gave me a prescription of straight Oxy for the pain, along with the warning not to take ANY over the counter drugs that could/would hide/mask a fever! Sounds like ecstatic amounts of fun!

Then, on Thursday even more fun! Even though I already have a Power Port hooked into my right jugular vein, I get to go in for out patient surgery to have an external catheter put into my left jugular vein!!!! Oh Boy, Golly! I've wanted that since I was a little boy. Not. But, the fact is that they need to have two (2) access points to perform the collection of white cells and stems; one to suck blood out, and one to pump it back in. I'll be hooked up to something very similar to a dialysis rig for 2 or 3 days, 6 hours a day, for the white cell collection process. CORRECTION: The catheter has two lines/ports (one out, one in), my Power Port is too small for the flow of blood they need (about 100 CC a minute).

I'll have a couple days to recover from the above and then will go in the hospital as inpatient to receive the High Dose chemo that will virtually kill all of my white cell producing bone marrow.

More to follow.


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Dora Hates You

Edited: 06/13/2018 at 10:25 AM by dingpatch
 06/12/2018 05:18 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

Woke up this morning a little "achey" here-and-there. One of the BMT patients that I see everyday here at the hotel told me that, given his experience, I should expect to begin "hurting" this afternoon. He told me to not hesitate to take some pain med as soon as I think it "hurts" and to not make the mistake of thinking that I can get past the pain without the Oxy. He thought he could, and now regrets it.

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Dora Hates You
 06/13/2018 05:10 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

The "belly shot" drug got to me last night. Got very uncomfortable. Some good pain that pulsed with my heart beat, but not too bad, maybe a 4 on the scale. Mostly in my sternum and my lower back (hip bones). It comes and goes and is otherwise not too "constant". The Oxy seems to take care of it pretty good.

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Dora Hates You
 06/13/2018 06:38 AM
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tom

Posts: 8013
Joined Forum: 07/25/2003

Thank for all the updates Ding.

We're not always responding but we're following along and 

sending all possible positives your way.

tom

 



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add a signature since I'm here in profile anyway
 06/13/2018 07:30 AM
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waterlizard25

Posts: 664
Joined Forum: 07/18/2012

Keep fighting Ding! Thinking of you everyday

 06/13/2018 10:17 AM
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Plan B

Posts: 3302
Joined Forum: 03/08/2004

Hang In there man!  Ask the Doc for some good Chronic 

 06/13/2018 10:21 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

Got my last "belly" shots this morning, so far, so good. They made a point of asking me if I had "bone pain" yet, "ya, there were a few rough times last night, , , ". "GOOD, that means everything is working as it should!" Hmmmmmm, first time pain is good and no pain is bad!

But, otherwise, one of the FNGs I checked in with last week has been hurting like MF'r and yet he did not have a high enough white count to start collection. He had to go back Monday night to get the "9 PM super shot" which did the trick. He has a cancer in his kidneys(?).

Lots of guys and gals in various stages, as I said before, but not all is good. Talked in the waiting room with an old Vet who is almost done but has terminal leukemia, he's going through BMT to try to get another 3 years. Shit! What can you say to that when you've already been told that you are A OK?

And, one of the other FNGs I signed in with is on "hold"; his PET scan last week found "something" in his neck that was not there a couple months ago. Shit!

And, as I'm typing this my lower back is going off big time. Time for the Oxy!

Later.

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Dora Hates You

Edited: 08/09/2018 at 09:22 AM by dingpatch
 06/13/2018 04:31 PM
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SunriseSurfer

Posts: 8610
Joined Forum: 07/22/2003

Howard, though I know you'll make it through this,
no matter how tough it will be, ...

... prayers for an easier road.





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Puerto Rico 11 - 24 - 2013
 06/14/2018 08:28 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

Fooking crud! I went through all the blood labs this morning and then went into surgery to have this darn catheter put in my neck, then get back up to BMT to find that my white count is not high enough yet!!!!! I have to go back tonight at 9 PM to get the $7000 shot and be back at the BMT bright and early for collection.



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Dora Hates You

Edited: 08/09/2018 at 09:25 AM by dingpatch
 06/14/2018 08:49 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003



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Dora Hates You
 06/15/2018 06:42 PM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

Fook, 2ndlight won't take any of my photos when posted from "mobile" devices!!!!!!

Why not?

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Dora Hates You
 06/15/2018 09:07 PM
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WG

Posts: 37257
Joined Forum: 03/10/2005

Probably too big, try resizing them to much smaller.

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"The truth is incontrovertible.
malice may attack it,
ignorance may deride it,
but in the end,
there it is." -Sir Winston Churchill
 06/16/2018 04:32 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

No ,my question was incomplete. I'm trying to link to my SmugMug photos. Up front, it looks ok link wise, but preview and reply are blank. When opened to edit it the post does show [IMG][IMG]

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Dora Hates You
 06/16/2018 04:37 AM
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SunriseSurfer

Posts: 8610
Joined Forum: 07/22/2003

...same thing I saw when I went to edit your post.... just [IMG][IMG]

Thought I could fix it for you, but nothing there, no link, no data, nada.




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Puerto Rico 11 - 24 - 2013
FORUMS : NPNR : High Dose Therapy and Stem Cell Transplantation

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