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Noobie here ... DLBCL

Sue B

Active member
All the vaccines you will get after the transplant wont bother you much, just swelling at the site and some warmth sounds like Shingles vaccine has more side effects.
 

tbear

Member
11-25-19

Looking forward to all those vaccines in four months or so myself. Middle school revisited. Oh boy!
I forget how many I have had Frank (maybe 15+ now), but I know I got as many as 7 in one sitting. None of those had the effect that the one Shingrix (dead virus) shot had.

I knew it was gonna be something after feeling it go in, but it was quick. :D

All the vaccines you will get after the transplant wont bother you much, just swelling at the site and some warmth sounds like Shingles vaccine has more side effects.
I never noticed anything from them other vaccines actually. Usually, pulling the band aid off at home later hurt worse (a fast jerk is best).

Having said that, the Shingrix shot is still way easier on one than shingles, and only last a number of hours or a day, maybe 2 at most. I'm told by several that the second shot usually does not have the effects of the first.

Later …… tbear ;)
 
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tbear

Member
01-03-2020

Happy New Years to you All!

Well, yesterday the 2nd, I made a visit to UVA for blood work and follow up with my stem cell team leader, "Dr. K-K" as I refer to her. Questions, checked a bunch of nodes, good report. She explained some in depth about my last MRI, that fuzzy spot, and the terms used. Wife & I really like he. Also got my "Mumps, Measles, & Rubella shot (makes 18 now), I already got my flue shot and first of two shingrex shots. She said I could stop with the Acyclovire (spl) I'm taking for the shingles I had, but wife and I decided to keep on until I get the second one. "Dr. K-K" said if I got off of it and ever had a sign of shingles, I'd probably go back on Acyclovire for good. I told her of scheduled visits with neuro oncology, MRI in late Feb, regular oncologist in March, etc, she said I'll see her again in Jan 2021.

It was December 22, 2017 I got the A-SCT, so two years out now. Yeah!

Later ………… tbear
 
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frankhond

Member
And happy new year to you and your wife! Sounds like you are coasting along, really happy for you. So what was the explanation for that fuzzy spot, did someone sit on that slide?
 

earthling

New member
Go tbear!!! I'm so glad you're doing good. Your attitude has really helped keep our spirits up during the peaks of fearing relapse. So thanks :) wishing you dozens and dozens and dozens of happy transplant anniversaries
 

zac495

Moderator
SO happy for you, tbear!!! 2 years is a huge milestone. Yeah they say 5 years - but my onc explained that 2 years is a glittery silver milestone and it's not half of 4. It's more than half, if that makes sense.

Happy New Year and New Life!
Love,
Ellen
 

tbear

Member
01-20-2020

Just a short update, nothing huge.

Took wife out to supper, was talking, and recalling …

… that it was 2 years and 2 days ago that we were still holed up in a 3rd floor motel room at Charlottesville with daily trips to UVA for blood checks. My A-SCT "0" day was Dec 22nd,'17 and I left the hospital Jan. 5th, '18 to check into a nice nearby motel. Every morning for near two weeks, we used the motel's shuttle bus to and from UVA for that day's tests. The shuttle bus driver always had the little bus warm and we were always his only passengers while we were on it, just by chance. We even had his cell number in our phones.

We had thought we'd be in that motel several weeks longer as they had told us to expect it. It was after a morning test that they suddenly took me to get that 3 line pic line out and told me to go on home about 3pm., what a great surprise. We went back to the motel, stayed that night to rest-up as we knew we'd be in the dark getting home to a cool house with minimal heat going, so we headed out in the morning of January 19th, '18 and warmed up the house & settled in during mid day, my first post A-SCT wakeup at home was on January 20th, 2018.

So today was an anniversary of sorts. :)

Sure have come a long way.
Would have been harder if not for the folks here …. BEST to you all!

Later y'all, Take Care, ….. Les
 
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andym

Super Moderator
It's good to have those memories and have them be further and further into the past. Note that I didn't say fade into the past because it is good to hold onto the people that helped us get through it all.

Here's to many more happy years at home.
 

tbear

Member
01-25-2020

Thank Y'all.

Andy, I'll never forget those whose help eased my or my wife's burden, nurses, docs, friends, strangers (like here) I never met, even some I just encountered in similar straights in waiting rooms.

Best again to ALL!

:)
 
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tbear

Member
02-26-2020 Scan-ziety again???

Dang it ... I should be asleep.

Early AM hours: Due for MRI #8 at 10:40AM, then to see Neuro-Oncologist about 12:40PM, no reason to worry that I can think of, but the mind wanders. Tried for Scan-ticipation, it works until near bed time tonight.

Later same day: Well, sure wished I had slept better. Awoke, coffee, dress, drive up, getv MRI done, get over to Neuro-Oncologist visit, MRI already read and report in, looks great, going from 4 month to 6 month visit next, see him in August again.

Take Care ALL! :)
 
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earthling

New member
Wonderful news T-Bear. Congratulations!!! To many more perfect scans!

On your scanxiety, I agree - the night is the worst. Ever since my husband got diagnosed and for months and months on, I used to wake in the middle of the night with dread and worry. I've learned NOT to trust my gut feeling when it comes to big issues like this one ;) I guess it will get better with time for all of us
 

tbear

Member
03-10-2020 second shingrex shot

Sorry to hear about the sleeping issue, but now you can sleep well for six months at least!
I wish, but Thank You, hope things are looking up for you as well.

Second Shingrex shot today, Mar. 9th. First was Nov. 22nd. Here I am, early AM on the 10th, chills, headache, achy, sleepless too ... but not as bad as first shot. Took a 10 mg Melatonin. It's well worth it as long as NO shingles visit again.

Best to you all, g'night.

Edited 03-11-20:

I guess I was wrong, felt awful nearly all day the 10th, never did sleep after above was posted . It was might near as bad as the first shot in November, my wife also had some chills like in Nov too, delayed like then too. Like I said, might near as bad, but not quite as bad. For me, took a couple Tylenol yesterday, by late evening headache had eased, chills were gone, aching less, looked over at wife, she had a blanket on, minor chills. She's been good today.

Edited 03-17-20:

My heart really goes out to those facing postponed transplants & even operations due to Coronovirus Outbreak.

Take Care! :)
 
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tbear

Member
04-06-2020 Relief

Well, due to Covid 19 and the fact that I had an appointment with my oncologist today over across the mountain, last week it was decided that I should get my blood draws more locally so test would be available today so he could call me instead of bringing me into the hospital for visit.

On Mar 31st we drove up to their satellite location on this side of the mountain, blood was drawn, in & out in 20 minutes. Saturday night … more like Sunday AM actually … I saw the tests had been posted in my chart, so I looked. There were three tests, the first two looked good with all the various levels, etc … but then I opened the LDH test, my mistake. Level had spiked up 350, I went to bed worried about what it meant. I know the reference ranges, my levels have been tracking under 200 for over a year. I could not sleep that night (morning?)or the next (last night), was nothing I could do to get it off my mind.

This morning I get the call, resident said she and oncologist were pleased with my blood tests. Asked me all sorts of questions about how I feel, etc, symptom like questions. Then LDH test was mentioned. I said "Yeah, I saw that too" … and it was explained that it was not uncommon for the samples to get shook in transport from over here to Charlottesville (near an hour's drive from Hope Center to UVA), that often actually, that test and some others get affected by shaking in transport. I was assured that in view of other tests, they were pretty sure that was all it meant.

I said that they could talk it over and if they'd like, I'd drive over to UVA for a draw. Then I was told they'd likely see me in 6 months, but to call if I notice anything. They know I have MRI and visit with Neuro-oncologist scheduled in August anyway. After the call and explanation, I looked it up … and found that sure enough … time and transport methods can lead to high erroneous LDH results … and low potassium levels too I found? Then I recalled that back in 2017 I was told almost exactly the same when a test draw was transported via car to a lab.

Suddenly, I feel so much better. I did get really wore out Saturday moving a dead tree, spent Sunday doing taxes, I'll sleep tonight though.

Thank you Lord! :)
 
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andym

Super Moderator
Very interesting about shaking them tubes of blood!! And I'm really glad that knowledge gave you good news and no reason to drive your blood in vivo over the mountain.

And yeah, I did my taxes on Sunday too.

So good to have time off for a few more months. I have an appointment next week but expect that it will be delayed.
 

tbear

Member
Very interesting about shaking them tubes of blood!!
I accepted what those who see this a lot tell me, I put a lot of confidence in their expertise, but I like to see it … and so I used some several terms or questions to find there have been studies in this regards. I don't fully understand "why" yet, but it even matters if tubes are full vs half full, vac tubes, padded tubes, jostling, sudden stops or bumps, those pneumatic transport systems vs hand carried, etc. Some test seem unaffected, but others not so?
 
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