Diffuse Large B cell Lymphoma Feb/09 and CHOP+R diary

[SingleDad]

This was pulled out of a another thread so it may not read all that smoothly.
Part of this is for my own diary and for those not yet in the know for me can follow what I'm going through.....

Posted: Tue Mar 03, 2009 9:39 pm

Hey all - glad to find this place.

Been quite a couple of weeks from finding lump in testicle now a ridgeback I'm told is the term, to diagnosis of diffuse large B cell.

Damn only 3 weeks from lump to to surgery to scan to diagnosis to 5th day into CHOP+R. ..and a long weekend in the middle plus learning curve.

Still a bit in fast forward shock but not feeling too bad tho it was a very long first day in chemo ( brand regional cancer centre just opened - that's nice - only a long block away ).

12 hours first day as accidentally there was 5 first time patients for 5 stations....got a good book read, learned a lot.
Damn deep veins were the worst part - still black and blue.

Tired from the long day - slept okay - no nausea thanks to Ondan ( damn $$ but it works ) tho I could feel it working.....forgot to take the last dose yesterday and tried ginger pill - worked fine.

Big appetite I guess is the steroids. Coped much better with them splitting them up. Lots of energy as a result - got a lot done despite a low period in late afternoon.

Headache was a issue first day but I suspect it was partially caffeine withdrawal - like my latte's - still lurking a bit but controllable. Glad I was okayed for Acetaminophen.

I guess overall - less impact than I anticipated. The steroid energy spike was unexpected and timing happened to be good as I had a lot to get done. House sure is tidy.

Steroids are a trip....talk about energizer bunny...split them apart next day. Wondering about falling off that.

Cotton mouth a bit - rinses help - keeping it moist. No real taste issues except a bit of adversion to coffee first day.....which was a shock.

So I've finished the first 5 day pill and infusion cycle now I come off everything for the next 2 weeks...what to expect??

I seem to have digestion etc controlled with food choice. The minor after affects of day surgery are clearing up fast and that helps - it was awkward earlier...just healing pain and knitting. Spirits good once I cleared the headaches. ( I'm migraine prone and they really enervate me ).

Any heads up for this cycle now I'm off the upfront hit???

Feedback on what to expect in subsequent cycles??? I know it varies but maybe there is a pattern.

Tips tricks all welcome for a "still in shock newbie"
TIA
Location .Just outside Toronto.

�����
Posted: Wed Mar 04, 2009 6:48 am

Joepet - ChemoMan - thanks for taking the time. Some fast initiation into this club damn it feels likes months not weeks.

Joepet..still uncertain about origin - waiting on some more tests..there is one node near the testicle.....this annoyed me as I went in to complain 2 years ago about my testicle - now departed - being slightly larger and no tests were ordered.....might have caught it then.

There is one node on the other side of the diaphragm he could not assess - he said it was slightly affected by something but it could be an old infection scar as well but will be treating me as if I'm a 3 just for safety. Given my tolerance so far I'd rqther be on the safe side.

I have good longevity genes - mum still alive tho batty at 95 and dad walked himslef to ambulance at 95 last year and was gone in 2 days.
Still had his drivers licence and used it in the daytime and lived in the house he built himself in the depression with his wife of 70 years !!!!

Not sure how he put up with her all that long ....so I'd rather put this behind me thoroughly with the extra treatment.
I guess due to my dads death ( THAT was a learning curve ) it was a stressful year but I'm not convinced it had anything to do with the cancer occurring - anyways water under the bridge.

The doc will be able to tell from the treatment how the suspect node responds.
No bone marrow info yet.

This is first morning no steroids - mouth is dry but had a long sleep and it's cold and dry outside. Excellent sleep once I shook off a low headache. Woke normally decent energy - apetite down and no steroids to take......damn those things are brutal - I'm a big guy and they kicked like a mule - I can't imagine a small boned person getting hammered with those.

Joe I'm scheduled for 6 rounds plus radiation

12 hours was accidental because all the new patients so prepping etc took longer. Treatment time was about 8 hours - no reactions so next will be much shorter as long as they can find my veins.....I knew that was going to an issue.

I agree with the chemo brain - no question it's a factor - I'm 21 day cycle.

So far I'm tolerating it with less side affects than you - maybe the type since yours is colonic.
Staff have been supportive and the only real impact has been a late afternoon slump when I usually nap anyways - out cold now so body is demanding a break.
I work from home so no issue - I didn't even drive for a couple days after chemo..

I have excellent support network in staff and clients and a few friends so no depression - more sort of getting my head around it. The stats are good for the type for an outright cure and I'll work hard to achieve that.

My tech is pretty solid for understanding what's going on and I view it as an an auto-immune situation - it's my body gone off track on signaling- not some sort of invader so the cancer is internalized and I visualize getting dealt with and job 1 is to make that possible.

Chemo - thanks for the eating warning - I asked about it and they said eat - It's not so much I want a lot but savoury things more often than I'm used to....so I'll do up a couple eggs and oyster mushrooms as a late snack instead of toast and tea.
My body seems to be looking for protein..that's what it feels like. No upset or feeling over fed - I get headaches if I'm not fed on time so I'm eating smaller more frequent and seeing how my body is dealing with it - fine so far.

You are correct about the superman - I made use of it - we'll see today - the doc said I could use pseudoephridine in small dose - I find is helps - I have dust allergy anyways and it gives me a boost so I'll try that.
No need so far this morning.

I'd tell anyone to split the steroid over 6 hours for sanity sake. That first round was a scary rush.

Breakfast time....thanks for the support....much appreciated. I'm in Canada BTW.


Posted: Wed Mar 04, 2009 2:46 pm
So far so good.....drug free - good appetite and energy l levels - enjoyable lunch out.

�����

Posted: Wed Mar 04, 2009 7:22 pm
Yeah I'll gather them.
Since I posted I hit my late afternoon wall just a bit later than usual - out cold for a couple of hours - feeling okay now.

Appetite down and tummy a bit queasy tho that might just have been the Mediterranean lunch. I'll have to watch the late day coffee it sometimes unsettles me too.

Now I'm off the steroids I'll have to resettle the digestion/eating pattern away from them.

Feel okay - always gets better around 8 - that was long before I got diagnosed...almost feels like low sugar but my son is diabetic and I test once in a while and never find anything of any significance.

I was two 60 mg of pred in the morning - that's what hammered me.
Split them up and it was fine. Learning experience for sure.

Is there ANY pattern to which cycles are better or worse??

Do the 5 day symptoms tend to repeat about the same level.

I was warned off the anti- oxidants as well.

Ginger is very good for traditional nausea from motion - we knew it from car trips with kids and sail plane taking up passengers. A little prevention.

I took the expensive stuff after it was explained how it worked....and it did.

My tongue is a bit sore but I thinki chewed it up gnawing on a end of beef roast
Mouth okay otherwise.

Tummy a tad uncertain - nothing uncomfortable.

I think I'm coming down with the cold my kid brought home

Any advice???

[joepet]

Wash your hands often and gargle. First about 10 seconds to get the germs out of your throat, then once again to rinse the remainder out of your mouth.

Lots of people wear surgical masks in Japan when they are catching a cold, when they are trying to avoid a cold, and when their allergies begin to kick in. So I wear them daily as well on the train and at work, and even at home when someone is sick. Of course, it might be easier to do this when 20% of the population does it, but if you don't feel weird doing it, that would be a good precaution as well.

My daughter had a bad flu during my third cycle, but thanks perhaps to those precautions and my wife (who fortunately got a flu shot this year) keeping her away from me, I never caught it myself.

[SingleDad]

Tummy still just a little unsettled - a bit of active yogurt seems to have it sorted.

I've been cramping a bit - sore muscles tonight. Potassium short?? Also a few aches in unexpected places.

Have to hit the banana store tomorrow..cold has laid off for the moment.

[joepet]

Must be having sympathy pains...just had a bad bit of diarrhea. Then I bought some apple juice to drink, only to later read online that apple juice is bad for diarrhea. Doh! Perhaps I'll get some Gatorade for the ride home from work.

[SingleDad]

Apple juice is good for increasing appetite.
I get low acid.

Not too bad this am now I have eaten.
Weather is changing so I always get lazy when that shift happens.

Need to get out and get more banana's.

Took a pseudoephridine and acetominophen - feeling a bit less achy now as a result.
Staying off coffee.
Back to my book - no energizer bunny today....

••

snoozed - quiet morning nice sun and spring is arriving - up to 13 tomorrow - might get the Silverwing out if I feel bouncy.

Risked some coffee - very small latte - can feel it zing....

Good energy now midday - no appetite.

••••••

Slept a lot - generally felt lumpy but that comes with a weather change and we are getting a major one - rainy and warm from high pressure and cold....almost 30 C swing in a couple of days.

Not sure where the aches are coming from.....broke down took a aceto tonight.

Tummy uncertain but nothing annoying. Had a small coffee damn it hits hard..seems to make me sweat for a 1/2 hour. No tummy upset from it.
Keeps the headache off.

Still feels like a cold coming on rather than chemo

[SingleDad]

Day 7

Well not sure why the energy returned at 3 AM ???

Maybe it's spring......damn nice to go outside and it's at least tolerable +8.

Woke up rested and peckish - figured I'd just go with it and make use of the energy when it shows up.

Question -
when people talk mouth sores I assumed it was internal - I have a potential cold sore starting up - same mechanism at work??

I sometimes get boils and I can feel them stirring tho so far kept at bay with topical antibiotics.
Is this all part of the immune system change???
TIA

....

also is there another relevant thread where others have their tales to tell of CHOP-R?? thanks

Chemo - you're confidence in the treatment regime is very re-assuring.

[SingleDad]

Day 8 - lots of energy early in the morning - then an interrupted nap.

Decent appetite and most things feel normal.

Really the first day that feels like spring - - hauled the Silverwing out and it started first try so a short ride.

Glad the surgery is healed enough ......big mental boost to have the bike available and kid does not need ride to school either.

So far so good.

[SingleDad]

40 years + on a mcycle - never dropped except in winter as a kid ( I rode all year in university - you get good or dead.

Yes the S/wing is a big scooter - my hands were getting sore clutching and such and the Kawi has NO storage.
This I can go shopping with - 55 liter storage under the seat, ABS brakes and fully automatic and dry riding even in the rain. I almost bought a Burg but glad I got the Honda - it's a bit smaller.

It sips gas - it's a slippery 550 that can clock 170 kph - not that I'm interested.

I took it easy - only the last 10 minutes I rode a bit harder ....mostly was just enjoying an amazing day bopping about at 80kph on the escarpment roads.

Bit stiff......not sure about the hot tub yet.....any thoughts from a chemo standpoint??

Good appetite and bouncy even this afternoon when I usually hit a low.

Lots going on in the Mac Universe so it's keeping me busy.

Off coffee today - no craving at all but had a bit to keep headache away....1/2 a small latte did just fine.

Still achy but riding will do it - reallllllllly wanna hot tub.

Thin I will break down and treat self to acetominiphen.

This is one time I'm sorry they banned my Celebrex.

Mouth a bit weird - but I can feel shedding from the roof then a few hours later it clears up....major battle going on I guess.
Funny metallic taste from time to time.

Definitely in a positive mood, biz good , weather superb for this time of year in Canada and the sun was out all day.
AND my first ride of the year

[SingleDad]

"If you had RA it will go away and you can expect at the very least 2 years of remission from it and maybe it will never come back !"

Yippee - that's good news tho I wonder what was making me achy coming off the steroids. It's not so bad tonight.

I only took Celebrex maybe 2-3 times a month just for a "feel good" boost.

Came home tired from the ride and slept til now after playing catch up with clients - kids are being noisy having a lan party so working a bit.

So - got rid of the low level infection

May get rid of the low level arthritis

( that likely accounts for the good energy levels - both were draining my energy )

Providing the CHOP-R is successful with a outright cure...I'll come out of this healthier than going in.....go figure...

Bed soon - good energy tho and good appetite.

••

JoePet - I know about sore arms, my veins are deep and I'm still bruised on my left from the first attempts.

[SingleDad]

Hmmm skipped a day or two here. Day 10 - woke up at normal time despitie late night.

Good energy, good appetite....much cooler and grey outside - might stay off the Swing until Tuesday when warm and sunny again. ( we broke all time records yesterday )

Combination of factors -
spring, mcycle ride, some fixed things health wise
getting past the first crunch of chemo,
recognizing I did not have it two years ago and that it's a random breakdown in the body - no ones fault including mine and that the fix is very good if enervating
......all those are positives..

Decent biz and some exciting product helps - the new Mini is incredible.

Odd energy spikes mean I get a lot done then crash. That's the norm for me anyways.
If the arthritis is gone that's a HUGE boost....once the surgery is completely healed I shall have much more mobility - I can feel that already.

Coffee hits with a ton of bricks - have to be careful. Could feel a headache lurking ( weather change - gonna rain ) and had just a couple of sips and could feel it....( mind you it was strong just made ).

But like 1/4 of my latte and I can feel the hit. Little flush from the caffeine

Appetite still good but funny tastes and metallic at times. Baking soda rinses help a bunch.
I've been hydrating like crazy - dry mouth is a bad risk for problems and you need to flush the dead cells out as the drugs kill the defectives.
I have to be careful not burn my mouth or eat stuff that might make cuts as healing as mucous is a problem.

It's a neat mechanism tho your body sort of gets all het about what's going on.

I'm too much a tech head not to be intensely interested in the mechanics and science of it all

Read and loaf for a bit.

[SingleDad]

Finally crawled in the hot tub - felt terrific but did not linger.

Felt a little weak and sleepy after but all the knots gone...- napped and watched a movie - my usual afternoon low.

Not motivated to work motivate to laze

[SingleDad]

Day 8 ended with an upset digestive system - not a surprise given I strayed over the line on food types.....won't do that again.

Day 9

Lots of sleep - woke up early refreshed - daylite savings time shift so feel early.

Good energy level, good appetite.

Early shopping trip in order.

Mouth issues seem to have abated. No metallic taste. Still no desire for coffee tho......probably a good thing.

••••

When my blood work gets done at the beginning of the next cycle what is the doc looking for????

[brainman]

SingleDad, I spit off some of your replies to start a topic of your own in order to avoid hijacking joepet's story. I hope you don't mind.

[SingleDad]

Not at all...

err where is it ???

[joepet]

Hi SingleDad.
It looks like your posts are over here now.

http://cancerforums.net/viewtopic.php?t=12003