Well, to start with, , , , this seems to be a pretty good take on what I currently understand about the process I'll go through. Although, , , , I still need to do some book-learnin and some question asking, , , , This is from an older WEB site, so a bunch has probably changed since then, , , , ,

PEOPLE'S EXPERIENCES with the process

High dose therapy and stem cell transplantation

Higher than normal doses of chemotherapy (and sometimes radiotherapy) are often used to treat people whose lymphoma has relapsed or has not responded adequately to other treatments. While chemotherapy at normal doses causes transient damage to the bone marrow, which makes blood cells (see 'Blood cell counts and infection risk'), high dose therapy suppresses the bone marrow for longer, and it then needs help to recover. This is achieved by transplanting (or grafting) stem cells (primitive cells that can develop into all the different types of cells in the body), which can repopulate the bone marrow.

The transplanted cells are most commonly the patient's own (an autologous transplant) or taken from a donor, either a close relative or an unrelated donor who is a close genetic match (an allogenic transplant). Cells for transplantation used to be taken directly from the bone marrow by inserting a needle into the hip bone under anaesthetic, but nowadays stem cells are usually 'harvested' from the blood using a cell separator machine. A man who had a transplant long ago had cells taken from his bone marrow, and another had this done in case the harvesting did not work.

Before harvesting, the number of stem cells in the blood is boosted by a series of daily injections of Granulocyte Colony Stimulating Factor (G-CSF) for between 5 and 10 days. Many people were taught to inject themselves; one was given them by a friend who was a nurse. During the procedure a machine takes blood from the arm, removes the stem cells, then gives the blood back through the other arm. This is repeated until enough cells are collected, which may take several hours over a few days. The cells are then frozen.

Some people said the G-CSF injections made their bones ache and one man experienced a pumping feeling in his body. The prospect of being connected to the machine could be scary, though the experience itself was not particularly unpleasant. Producing enough stem cells was sometimes a problem and one woman's transplant was abandoned for this reason. Although most people had their stem cells harvested for an immediate, planned transplant, a few had theirs harvested when they were in remission in case their disease relapsed in future.

Brothers or sisters were sometimes asked whether they would be tested to see if their stem cells would provide a suitable match for an allogenic transplant and, if so, they also had a series of G-CSF injections and their stem cells harvested on the cell separator machine. One man said the experience brought him and his sister closer together for a while. The sisters of a woman whose stem cells were harvested for a possible future transplant were also tested. One was a perfect match so she now has the option of an auto- or an allogenic transplant.

High dose chemotherapy is given daily for about a week in hospital and one man also had whole body radiotherapy. High dose chemotherapy is given in the same way as normal chemotherapy, often through a central line, and produces the same side effects. After the chemotherapy the frozen stem cells are thawed and given back via a drip. Some people said that although this was a vital part of the treatment it seemed insignificant as it was just another drip. Two people had reduced intensity transplantation, which involved being given a lower level of chemotherapy before receiving their donor's stem cells. This was an experimental treatment at the time they had it but is now standard.

After the transplant people had to stay in hospital for three or more weeks while their blood cells recovered to normal levels, during which time they were very vulnerable to infection and some needed transfusions of red blood cells and platelets. Many people had their own room in hospital equipped with filtration equipment to clean the air to reduce the risk of infection. Some had private bathrooms, but others had to share toilets with other patients and visitors. Staff and visitors were expected to wash their hands before entering the room; one man said his visitors had to wear an apron.

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Dora Hates You

Random Notes, , , ,

"High dose chemotherapeutic agents, such as Cytoxan (cyclophoshamide), will be used to prepare your body for transplant"

Short-term side effects are: You will feel messed up.

Long-term side effects could include: Being messed up!!

Oh and, I still have to get a few "things" done at the VA Lake Nona Medical Center before I can get scheduled for Nashville but, they are supposed to let me know this week what they think my total time there will be.

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Dora Hates You

Edited: 08/11/2018 at 08:44 AM by dingpatch

"Preliminary" Schedule, , , , , ,

5/13/18 - Fly to Nashville

5/14/18 - Begin out-patient labs, tests, etc., and then collection of stem cells and whites

5/28/18 - Begin in-patient ICU for High Dose Chemo

6/6/18 - Begin transplant, and stay in ICU until I am "recovered"

7/1/18 - Fly home.

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Dora Hates You

Good luck, man!

Oh, and, , , , forgot to add that I will be sterile after this! No problems because wife and girl friends won't mind! LOL

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Dora Hates You

Had four broken teeth pulled today at the VA in Lake Nona. This was the final step I needed to be able to formalize the trip to Nashville.

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Dora Hates You

Well, sort of back to square one. My "support person" can't go with me, so my trip is on hold until I can find someone else who can burn 7 weeks in Nashville with me.

VA covers all travel and lodging.

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Dora Hates You

Edited: 05/08/2018 at 03:27 PM by dingpatch

Im sorry your trip is being delayed Ding. Im thinking and praying for you brother. Keep fighting!

My case in regard to not having a support person will be one of the talking points at tomorrow's team meeting in Nashville.

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Dora Hates You

Edited: 08/11/2018 at 08:46 AM by dingpatch

Seven weeks!  My yard would turn into a summer rain forest.

Good luck dingpatch.

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“It is the heart of US policy to use fascism to preserve capitalism while claiming to be saving democracy from communism “ - Michael Parenti

I'm in!

The Veterans Administration's Nashville Medical Center has certified me as Having My Complete Stuff Together and, as such, I will not need a "support person". Although, it will mean that I May have to spend extra time as inpatient after the Death Chemo.

I'll fly to Nashville on June 3rd and return on/about Aug 3

Mrs. Dingpatch is on her feet and cleaning the 9 Mike Mike.

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Dora Hates You

Edited: 08/11/2018 at 08:47 AM by dingpatch

Good to hear H
Thoughts and Prayers go with you.

Come back strong!!! and healthy!!





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Puerto Rico 11 - 24 - 2013

Now, in regard to my place of employment, , , , ,

Never mind

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Dora Hates You

Edited: 05/24/2018 at 09:29 AM by dingpatch

Have not yet received any air travel or hotel confirmations yet, , , ,the Government works at its own pace. But my "dance card" is already filled up for my first week there. All the testing that I had done here at Lake Nona was just to physically qualify as being able to endure the process. Now, all the same tests, labs, etc, to actually start. Any previous testing goes "stale" after 30 days. No big deal. Although I am assuming that they will want to do a "new" bone marrow biopsy! Oh Boy!

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Dora Hates You

Edited: 06/08/2018 at 03:05 AM by dingpatch

Got my travel itinerary. Will be staying at the Homewood Suites across the street from Vanderbilt's campus. About 1/4 mile North East of the Parthenon, and just less than a 1/2 mile NW across campus from the VA Medical Center.

So, now, any suggestions about things to do and/or see in that area? I'll be able to walk.

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Dora Hates You

Edited: 08/11/2018 at 08:48 AM by dingpatch

Made it to Nashville with no problems. The initial blood labs and alien rectal probes start first thing in the morning.

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Dora Hates You

There's a lot of good live music in Nashville.

Supposedly not much of it is Nashville country, which is saccharine crap IMO.

Prayers, and wishing you the best.




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Puerto Rico 11 - 24 - 2013

Hoping all goes well and that the aliens have very very small hands.

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add a signature since I'm here in profile anyway

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

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...

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

Amazing science going down!

Good luck!

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I was right.

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

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. 

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

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

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

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

Keep fighting Ding! Thinking of you everyday

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

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

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

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

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Dora Hates You

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

Why not?

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Dora Hates You

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

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

...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

I thought that the link did not copy correctly from SmugMug but, I pasted into my browser and it went to the correct photo. I'm at the VAMC right now but, when I get back to the hotel I'll use one of their desktops. I'm just dieing to show ya'll my stem cell collection photos.

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Dora Hates You

Got the stem cells collected yesterday. Sat in a recliner for 5 hours while my blood was pumped, filtered and recirculated at 100CC a minute. Everything is good. They needed 2 million cells minimum, they got 4.6! Plenty left if they need to double me up during the transplant and, otherwise, I have donated any excess to Vanderbilt.

This is the dual catheter they stuck 4 inched down my right jugular vein:



This is the machine:



This is me all hooked up:







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Dora Hates You

Edited: 08/09/2018 at 09:35 AM by dingpatch

Stem cells on the left, plasma on the right.



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Dora Hates You

Ketchup and mustard! Glad to hear the good news.

Yeaaah, you're coming home.

I'm sure no matter how bad the "Mother F'ing BAD" was,
it's a damn good feeling to be coming home.

Damn...missed your last text too. Sorry, but this is much better news.




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Puerto Rico 11 - 24 - 2013

Yee Haw!

Had my "Departure Conference" with "The Doctor" and I am free! No need to come back to Nashville unless I start having "problems" (which Are Not expected because of my dirty surfer life style).

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Dora Hates You

Oops, double post.

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Dora Hates You

Edited: 07/30/2018 at 11:47 AM by dingpatch

Yay! I am done and will fly home Friday. I have made an "exceptional recovery".

I will fill in all the blanks in the story when I get home; the good, the bad, and the Mother F'ing BAD.

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Dora Hates You

Welcome back!

We're glad all is well.......good fight man!

^What he said. Great outcome and good to have you back.

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add a signature since I'm here in profile anyway

Got home last night a little after 6, , , , , kissed Mrs. Dingpatch and did some good lovin with my girl friend Carlee Ann (Springer Spaniel). She was squealing and crying and otherwise "slapping" me for being gone so long! She would not let me go until she was satisfied that I was really home. We all cuddled up together and slept for 9 hours!

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Dora Hates You