• Welcome to our the new and improved forums systems. For tech support (only during May 2020), please email forums-2016@lymphoma.com. Also, please note that no new memberships are being processed for 6 days (5/26/20) as we continue to make upgrades to our systems. Existing members may continue to use all systems freely!

Noobie here ... DLBCL

tbear

Member
Well, I'm a noobie here. Been lurking a good bit, reading stories, worrying, y'all know how it goes.
Trying to keep Wife's spirits up, don't know what I would do without her!

Guess I'll get my feet wet now .... 62 yoa male, non drinker, non smoker, blessed with pretty good health my whole life I rekon.

06-15 find enlarged testicle
06-17 see Dr., / dx as "Epedi ..."10 days Cipro
07-01 no better 10 more days Cipro
07-18 see Dr. for Wellness Chk, referral to see Urologist
08-04 get Ultrasound
08-05 Urol. called me, it's a mass
08-11 Rt Rad Orchiectomy
08-22 Go to meet Urol / it's DLCBL from path report by 3 Pathologists / referral to Oncologists & sched a "PET-CT" Scan
08-29 get PET Scan
09-01 Meet Oncol. ... exam, blood draws, interview, review PET Rpt. he thinks Stg II-AE .... Plan is for 6X R-CHOP with added 3 rounds of IV Metho. in between Chemo 2/3, 4/5, and after 6 ..... all followed by 10 shots RT to good boy left.
09-07 Bard Power Port
09-09 First R-CHOP after "orientation" session
09-12 Echochardio ..... looked great ..... thank goodness
09-16 & 23 levels check
09-28 Second R-CHOP (went well, shorter day)
09-29 Meet with second Oncol & assisting DR at UVA to talk about Metho HD IV treatments
09-30 Neulasta shot in stomach (took Claritin the 29, 30, and 1st)

10-04, .... felt really tired yesterday evening and this morning, wanted to do some car maint but just too beat feeling .... so I rested some more. Finished last day of 5 days of Prednizone yesterday AM .... and this evening I feel pretty good .... even ran to & from mailbox at the road no sweat.

So far I have had minor constipation solved with usually one Colace and one Dulcolax .... a couple times and I ate spaghetti last night and it "went through me" fast. Actually was worse after Orchiectomy I think. I so far have had no "B" symptoms and can do pretty much anything .... just get tired fast some times now. My head is a little chilly at times and my pillow is a mess.

I am more aware of tinnitus in my left ear at times but they tell me it's not to do with DLBCL ..... could be side affect of Prednizone I read. Hope that's all it is.
 
Last edited:

andym

Super Moderator
It's a rough journey and I can never figure out how to add lymphoma to being in good health. I still usually feel healthy but how do I answer that question on forms about my general health. It's a whole new world.

But it sounds like you are handling chemo well and dealing with the side effects. Yes, pred can do lots of things to us. And I get colder than I used to.

For now, I'll be hoping for a smooth road through tx for you and great results at the end.

Welcome to our little corner of the Internet. Even if I wish you didn't need to be here.
 

powersti

New member
I think the hardest thing was trying to keep my patience when my wife tried to do everything for me (especially with the prednisone chewing on my brain). It gets easier if you respond well to chemo (less fatigue, better appetite and weight gain) and start to look healthier, which happened for me.

If you get a chance, on a good day, tell your wife it's a rest day for her, and be her caregiver for a spell. Since we can't predict which days will be good days for us, give her a break when you can. I think the days I could give my wife did more than anything else to convince her I was actually getting better.

Best of luck with the rest of your treatment.

Tim
 

DDurango

New member
Spouses who're coming off of prednisone can be difficult to deal with.

When Hubs got upset because I put peanuts on his ice cream sundae (and he's not allergic to peanuts) I knew that he was not himself.
 

tbear

Member
Thank You all and I wish there was no need for forums like this .... but each of you know well how important a place like this is. A place to come and share the good ... and bad days, the questions, the doubts, the inspiration, the facts, and the news is a wonderful gift to all who visit.
I've read a lot on here, I will read more, it's already my first stop with my morning cup of coffee.
As I learn, as I see how my trip goes, I'll post when I can help.

It's a rough journey and I can never figure out how to add lymphoma to being in good health. I still usually feel healthy but how do I answer that question on forms about my general health. It's a whole new world.
I know what you mean. Dr.told me that it was my health that would allow me to get through this with "just a few bumps" (his words) ... but he said it was gonna be frustrating for the same reason.
... etc ... hardest thing was trying to keep my patience when my wife tried to do everything for me (especially with the prednisone chewing on my brain).

... etc ... tell your wife it's a rest day for her, and be her caregiver for a spell.
Well, it's not my patience so much .... but I understand the "chewing". They tell me it will just rev me up but I don't know that being reved up is so good .... no doubt it beats the alternative. LOL.
I try to pamper the Wife as much as I can .... but one can always try harder.
Thanks.
When Hubs got upset because I put peanuts on his ice cream sundae ... etc ... he was not himself.
Oh WOW .... sounds like Pred really worked a number on him! Peanuts + Ice Cream = GOOD!

Later ........ :)
 

DebbieLynn

New member
Glad to meet you and not glad for the reason. Also glad treatment 2 was easier. It is sometimes hard to find your balance as a couple with a big change like this. I love Tim's idea of giving your caregiver a day off when you are having a good day. Good luck going forward! Debbie
 

andym

Super Moderator
I agree with taking care of our caregivers. This is hitting them hard and I always try to keep a balance of doing things for my wife. That got way out of balance during transplant. I wasn't allowed to do many of my usual things around the house. I think it is just remembering that taking care of each other is what we signed up for and having some drive to keep doing that, as possible.

As for pred anger, I got it really badly once. Someone sent me an email that would have completely pissed me off during normal times but on 100 mg of pred I completely blew up. Fortunately, he wasn't in the office and so I'm not in jail. After that I was able to recognize the feeling and control it.

Recently I was on 20-30mg/day for over a month and didn't have anger but was quite hyper. That was definitely driving my wife crazy. I'm on 10mg/day now and I'm back within the normal range of my hyper nature. I might still drive her nuts but at least it is what she saw before she married me.


Sent from my iPad using Tapatalk
 

tbear

Member
Methotrexate

Just a short update.

Tinnitus in left ear had subsided largely and then on Tuesday the 11th I got the call to come to UVA for my Methotrexate IV treatment, plan on 4 nights they said. Get there, took most of afternoon and into night to get urine PH to where they wanted, above 7 .... but mine went to 8.5 and so at 7AM Wed they started the two hour infusion of Methotrexate.
At 9:00 am it stopped and they did a blood draw .... 24 hours later I needed to be below a level of 10.0 for Methotrexate ....I was at 1.4 and at 48 hours I was at 0.10 and at 54 hours, still just under 0.10 so they let me go home last evening .... a day early. My goal was to get down to 0.05 meth according to a photo I took of "my board" on the wall .... I guess they figured I was not going up.

Water .... and lots of it and a lot of peeing helped.

The worst part of the 4 day / 3 night deal was hospital food and almost no sleep. Last time I was admitted to a hospital was 1977 .... I have visited a lot of people and spent time with my wife when she was a patient there but I always left after my visits. When the wife was there all those times in the late '90s and early '00s, I was working as well and so I made daily drives to visit. Only 1hr 15 minutes each way.

I now have a new appreciation for how important "rest time" is for anyone admitted into a hospital. Nights slow at 10 PM and day starts at 5 AM ..... but then there are the numerous pee runs, bag changes, bubble in line alarms, the TV next door, and ETC.

When I visited, I often tried to stay 1-2 hours .... or more depending. I thought I was providing company, helping to pass time, comforting maybe? Now .... I wonder if I didn't too often overstay my welcome?

I will say my "Wife Unit" stayed the whole time as a "Care Partner" and the staff brought her extra pillows and did all they could to make her comfortable. I told her to go home and that I would call, but she wanted to stay. Thankfully, she didn't get hospital food .... she went to the restaurant or cantina and got some pretty good looking food .... and she brung me coffee that was like 17 times better than the hospital coffee I got with break fast. I know hospital food is "nutricious", maybe it was the "hospital smells" that upset my taste? 1st day was OK, second was tolerable, day three was "yukk" and day four, I only ate the vanilla puddings and drank the orange juices and Sprites and ..... my never ending supply of cold water.

Tinnitus was back all day yesterday ..... but today has been "good".

We got Pizza last night on the way home .... tasted just "mmmm . OK" last night .... but left overs heated up today for lunch were "WONDERFUL". I had developed slight constipation while in that bed (that my butt seemed to grow roots into), and I walked enough that I knew every inch of that short hallway ... but a nurse gave me a special concoction the day before I left ... so all is good now!

Goal for today is 3 liters water and "you know" ..... LOL.
 
Last edited:

tbear

Member
Update .... a few days after my IV Methotrexate deal at UVA (10-11 thru 14) I started feeling really good ... super actually!

Well, Thursday (10-27) I went for R-CHOP # 3 and before I left that evening, I took a Claritin again and they put one of the Neulasta "On Body" injectors on my tummy ... it went off and dosed me Friday evening.
It's Sunday, no bone pain yet .... so gonna take my Claritin once a day until Tuesday anyway.

Couple blood levels checks and then a mid plan CT scan on the 16th and R-CHOP on the 17th .... and results.

Feeling better for sure!
 

zac495

Moderator
Welcome to our friendly forum and sorry you're here.
Tip in hospital - get a mattress topper! It makes the bed so much more comfortable. I brought everything including pillows and a duvet and towels.

My husband never stayed all night. That would have driven me crazy. As lonely and bored as I was, sometimes too much company was worse.

Hang in. This is curable!
Ellen
 

Judy_smile37

New member
I' so glad to hear you are doing ok. May that Claritin keep the bone pain away.

I hope you get great results from your scan. Keep us up to date.

Judy
 

tbear

Member
Thanks ALL y'all!

My mattress had a hospital provided topper on it and I was talking to a nurse about adding some padding .... and she showed me some information on how adding layers between one's butt and the mattress tends to increase the incidence of soreness ..... and redness .... and plain old bed sores. I had to look up a picture of a "duvat" ..... :D

We live a bit over an hour away ... I asked her to go home ... but I understood her desire to stay. She says she's gonna be there next two times as well.

We'll do on the updates.

Praying for all here.

Edited 11-02-16 ..... Neulasta injector did it's thing Friday evening on time, took a Claritin every day including Wednesday, NO real bone pain this time. Had a slight twinge .... maybe, but extremely minor.
 
Last edited:

optimistic1

New member
Hey tbear, that is good news! Keep it up!

I so hear you re: all your hospital observations, lol. My tips also have to do with bringing own pillows, sleep ware, big cups, iced tea mix, etc. but also to take the sodium bicarbonate 24 hrs in advance of admission to help with the pH and also request early check in in morning to get started. I had a couple different delays occur with the MTX and it was frustrating to have to stay more nights due to their delays and impact on timing/measurement.

Good luck!
 

tbear

Member
Hey tbear, that is good news! Keep it up!

... etc ... but also to take the sodium bicarbonate 24 hrs in advance of admission to help with the pH and also request early check in in morning to get started. ... etc ...
Good luck!
Thanks,

And I'm gonna check into that sodium bicarbonate you mention. The way they did me was call the day to let me know for sure I had a bed that day. I don't know that I can do any better .... but it's worth a try.
 

tbear

Member
CT Scan11-16 before RCHOP #4 11-17

Well, Tuesday (the 15th) I had a "Berry Smoothie" just before bed time and a half of a second Wednesday morning early, drove up and had last half just before my "mid term" CAT Scan. I felt like it would be good as I felt great ..... but I was afraid to say as much. I have had 2xRHOPS, 1 Methotrexate IV, and a 3rd RCHOP before today.

Today (Thursday) I got up early again, drank my coffee and a Boost and had a bit of fiber bar and headed north again for what was my 4th RCHOP .... but first the Nurse Practitioner had a session scheduled to give me results of CAT scan. She walked in, huge smile on her face, and she said "OK, I have your results and they were AWESOME!

">>> A right retroperitoneal lymph node that measured 10.6mm back on August 29th is now 1 mm punctate density (gotta look that up?). Others in the aortocaval region that were as large as 12.7 mm are also small punctate densities. No lymphadenopathy is noted. <<<"

I don't yet know exactly what all that means except it sounds AWESOME as she said, what we are doing is working .... and we are gonna do the whole plan (which means a Metho in a couple weeks, two more RCHOPs, and a last Metho after that .... and some radiation likely).

Then I went back to the infusion area, picked out a nice window seat / area, got set and by 10am they were accessing my port. By 3:45 I was done and my Neulasta on body pump was loaded and in place for it's duty Friday afternoon. I took a Claritin today, will take one each day until Wednesday next week anyway. Todays RCHOP went well .... I just barely caught a whiff of the saline solution and I caught the two 50 mg Prednizones just perfect with a slug of water so no taste .....

I'm tired.

Prayers for you all ........ :)
 
Last edited:

josie

Super Moderator
Excellent news! :) I had just a little left by the 3rd infusion, but it was gone after the 6th one.

I was never able to get a prednisone down w/o tasting it. Yuck!
 
Top