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Noobie here ... DLBCL

tbear

Member
06-24-2019

Congrats on the deporting. I was glad to be free of devices.
I'll bet you were.

I can't begin to express how much you and so many others here helped me these last 3 years ….THREE YEARS?!? WOW, it has been just that long. Hard to believe. I still recall my first visit here one night, full of despair and questions in mind.

But enough.

No more pain at port site, it was bothering me the second day or so, but is fine now. Here it is, 3:35AM and I'm wide awake. I don't know why.

Anyway, Take Care,
Les
 

zaraide

New member
My port has been a blessing but I will sure be happy when I can get rid of it. Glad to know your deportation went well. :)
 

tbear

Member
09-08-19 update

My port has been a blessing but I will sure be happy when I can get rid of it. Glad to know your deportation went well. :)
Yes, I'm already "used to it" being GONE! :) You are right, it went very well. I was awake talking to a nurse the whole time.

Just an added note to say I'm still here. Back a few months ago I did get set up with a new regular doctor for non lymphoma stuff. His dad and I know each other I guess near 40 years. I'm doing well as I can expect to. Still some nerve issues in that left side. On a every 4 month schedule now for MRIs and seeing my Neuro Oncologist or Regular Oncologist, …. and I'll see my Stem Cell Boss Oncologist in January 2020.

Was just catching up my personal log that I keep and got to reading some pages of posts and y'all's responses, encouragement, good tidings, well wishes, tips, etc …. and it hit me again the long road this has been. Would have seemed much harder, much longer without y'all.

Early on, after my relapse started in May 2017, I sold my old Triumph Trident MC which I had one time planned to keep forever. Wife was surprised. I just really didn't want her to have to deal with it.
This past June, I sold our Gold Wing MC as a short ride near the house let me know, it was time. My balance was FUBAR.
This past week, we took our Gold Wing trike (yeah, we had 2 MCs and a trike at same time) for inspection and a 50+ mile ride after I had checked it over really well. First time it had been on the road since July 2016. I had offered it for sale last year when my left side Shingles legacy was so bad, but we had a blast, and "Wife Unit" got to see her 6th bear … just this year. She was ecstatic. Called her brother asap we got home to tell him.
Just posted all that to say "looking up".

I wish the very best to you all …. tbear ;)

(ps …. still will be around)
 
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chuck15

New member
Sounds like a hard road, thanks for update, sorry you needed to trade in some of the things you enjoyed in life, maybe you trade them in for something you can like in the future. stay well....one door closes another opens.....
 

tbear

Member
Sounds like a hard road, thanks for update, sorry you needed to trade in some of the things you enjoyed in life, maybe you trade them in for something you can like in the future. stay well....one door closes another opens.....
For sure. No complaints here.
The road didn't look as hard or long as it looks on paper, it is easier to walk even a long road just taking it one step at a time.

Take care …. tbear
 

tbear

Member
09-17-2019 & 10-02-2019

Just so happy to see your posts and hear your smile! Yes I hear smiles
Thank you, Yes, you hear smiles. I still have the occasional dizzy feeling after turning my body suddenly, still feel that left eye trying to shut it feels like, but I can deal with this.

10-02-2019 just notes so I borrowed an edit:
Well, my Neuro-Onc will be out this week. I was scheduled for Post A-SCT MRI#7 and visit … today, Oct 2nd, but now I'll do it on the 22nd instead. Still have blood work and visit with regular Onc next week though.

Wow, I just realized … again, I have three Guru Onc Drs and so many wonderful support folk. So blessed I am! I sort-of look forwards to seeing them (did I say that?), they are near like family, even if distant kin at best. I'll see my A-SCT Onc in January.
 
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tbear

Member
Three Years?

Three years ago I started this thread … just WOW!

Thank you ALL!

Edited 10-08-2019:
Not really a big update, just notes.
Today I went to see "regular" Oncologist, not neuro, not stem cell head, but my "regular" one. Also blood work, she (lab nurse) was a good stick she said … and so she was. All looks great. BP 130/77 @ 64 bpm. No vertigo. I had not lost all the weight I gained in last 18 months, but I did stop the gain. :D
Oct 22 I go for rescheduled MRI #7 and see Neuro-Oncologist. Go back to see this one in April 2020, still set to see Stem Cell Oncologist head in January 2020. Glad there's a 7-11 nearby on the way home.
Also met new person "fellowing" there, super nice, and on her tippy toes maybe 4'6". Gave her some actors and old movie titles to look up, she never heard of Betty Davis or "The Forbidden Planet" movie?? Shock! I told her there was a whole world to explore in black & white.
 
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tbear

Member
102219 ... Post SCT MRI #7

Glad to hear about you.
Thank You!

Today I had my 7th MRI since my A-SCT, my Neuro Onc thought it looked OK, but there was a small slight shadow looking blurb of white near the spot where scar tissue shows up near cerebellum. He will see me in 4 more months unless needed before, said he was waiting on Radiologist's (or was it Pathologist's) report. He didn't seem too concerned, but it did catch his attention. He said there was like 500 or more images or slices to look through. We had a great talk, and I'm feeling great, and my "takeaway" was if he sees something in the report or analysis, he'll call. No call = Great.

The spot was just a faint dash of white looking sortof hazy to me, it was just next to the other spot that hasn't changed and is thought by them as scar tissue.

Anyway, I'll see a report soon.

He also explained after I asked, about the Gamma Knife & Biopsy in June 2017. The GK was used to reduce much of that tumor, the biopsy was where they could cut, then remainder was removed via the treatments. I could see the void near the scar tissue. So, now I know.
 
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tbear

Member
Post A-SCT MRI #7 was 102219

Let’s not hear from that guy again for another 4 months then!
Seems so! Thanks for them good vibes. :)

MRI was done on 22nd, report from pathology posted in "My Chart" two days ago, reads "boring", boring is good, no phone calls.
I did "open" the MRI, found it will let me look at ALL images, and there's a bunch in a report. I dare say like 500+ in different sets. But, in the reading of details, says same as past 6 since A-SCT.

Take Care All! :)

Update 11-05-19:
No phone calls yet, so it must be A-OK for now. Next is a yearly check up with my Stem Cell lead Oncologist in January, then I see my neuro Oncologist again in February with another MRI, then in April, I'll see my regular Oncologist.
 
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frankhond

Member
Great. One does think that a better procedure would be to either call irregardless, or just not mention any hazes until there is reason to. I’m sure that caused some unnecessary worry.
 

tbear

Member
11/11/19

Great. One does think that a better procedure would be to either call irregardless, or just not mention any hazes until there is reason to. I’m sure that caused some unnecessary worry.
More so for my wife I think. I took him at his word, still good we are.

Take Care All y'alls! :)
 

andym

Super Moderator
No change from wonderful is wonderful!! So happy for you.

BTW, if you want a really fantastic scan viewer and use a Mac then check out https://www.osirix-viewer.com . It is a professional grade viewer but is available for free with only slight limitations.

And if you really get fancy with it you can take a torso scan, color the bones white, the blood vessels red, make a video of the torso spinning in space, rear project it onto a sheet over your front window on Halloween and scare the kids so much that they don't come up your walk to get candy. Wonder how I know that!?! :)

But without a viewer, there are a mind boggling number of images to get through. My first scans were on film. There weren't so many images but you just had to look at them one by one.
 

tbear

Member
Shingrix shot 11-23-19

Thank Y'all!

Yesterday, on advice of my Stem Cell team leader, I and my wife went and got our first Shingrix shots (the new dead virus) and she did well she said, just soreness in her arm. I had soreness, headache, and I could not get warm enough last night it seemed, I shivered all night, …
… and today, I'm beat but feeling a little better now, no shivering anyway.
Cold rain, but wife said she was burning up when I was shivering. Puts us both on list for #2 in 2 to 6 months, Oh Boy!
 
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