Primary Colonic Lymphoma

ChemoMan · Posted: Fri Feb 13, 2009 9:44 pm Post subject: Re: Primary Colonic Lymphoma

Hi joepet

Ive got no idea at what point the Doctor would be concerned. I imagine they would test your peripheral nerves and make a decision from there. I don't know if they would delay your treatment but they might change your vincristine to vinblastine which does not cause the same problems.

I hope it goes away Joe and you continue on your path to recovery
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

joepet · Senior User Joined: 18 Dec 2008 Posts: 286 Location: Japan

My falling had everything to do with me being an idiot and nothing to do with the chemo, so I can't imagine they will change the meds over this. But I'll talk with him on Wednesday, and we'll see where we go from here.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

ChemoMan · Posted: Sat Feb 14, 2009 2:33 am Post subject: Re: Primary Colonic Lymphoma

Hi Joe

my concentration is not what it used to be.... I missed the bit about your fall !!

That 4th cycle is a killer is it not ! I bet you felt like it was your last day, I know I did. Try and get your anti nausea meds changed, I can vouch for Aprepitant (Emend) it was fantastic. I took it for 4 days starting on chemo day and after that I took maxalon every 4 hours from day 5 onwards and I had no further troubles. I found I could take it easy after day 8 out from chemo and I only needed maxalon on the odd occasion I felt sick. I also developed a rabid appetite due to the cortisone and after cycle 4 I was real careful not to eat too much and I think that helped as well. Its the CHOP that makes you sick not the Rituxam by the way.

I really hope cycle 5 and 6 are not as dramatic for you. Hang in there you are almost finished Smile

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

joepet · Senior User Joined: 18 Dec 2008 Posts: 286 Location: Japan

Today's blood test, on Day 15 of Cycle 4 of R-CHOP, saw the highest LDH I've ever recorded (223), and the first time it has ever risen above the normal limit. Doc is a little concerned, but says that there are cases when LDH rises during the second half of R-CHOP irrespective of disease progression, or lack thereof. He noticed nothing unusual in my lymph nodes, and the bleeding that signified my extranodal lymphoma has still not returned since the first cycle. So he says based on the results of next week's tests he'll determine whether I should get a scan sooner than planned.

Anyone have any experience with LDH counts rising during the R-CHOP, and if so, what that ultimately meant?
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

joepet · Senior User Joined: 18 Dec 2008 Posts: 286 Location: Japan

Reading up more on LDH, it is a monitor of tissue damage, something that spraining ones arm would certainly cause. So I don't think I will lost any sleep about that number just yet.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

ChemoMan · Posted: Wed Feb 18, 2009 4:10 am Post subject: Re: Primary Colonic Lymphoma

Hi Joepet

Your right in not worrying. Its much to early for that. Hope your feeling a bit brighter.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

SingleDad · Posted: Tue Mar 03, 2009 9:39 pm Post subject: Re: Primary Colonic Lymphoma

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. Shocked

..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. Mr. Green

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
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

joepet · Senior User Joined: 18 Dec 2008 Posts: 286 Location: Japan

Hi SingleDad. My condolences on joining the club. Let me whomp out a post while taking a break at work...sorry if it sounds a bit disjointed as a result.

I'm honored that you plucked this post out for making your debut. Embarassed

Hopefully your DLBCL was found nowhere else, and you're just another weirdo getting lymphoma outside of the lymph nodes. I've not heard about any specific extranodal stats, but overall the prospects of recovery from Stage 1 DLBCL are excellent. If you had to get cancer, you picked a good one.

Are you scheduled for a full six rounds of R-CHOP, or will you be doing three followed by radiation? The onc doesn't like the location of my tumor for radiation, so I'm going with just chemo.

12 hours is a long time...I get mine done over two days, Rituximab on Day 1, and everything else on Day 2. Maybe not as grueling, but I'd personally rather get it done all at once with half the vein jabs and half the three hour round trips to the hospital.

I'm in day 8 of my fifth cycle now. There's not too much I can say that's all encompassing about the experience. Generally the first week I fight various levels of nausea and depression...the steroids don't seem to do much for me, but I notice their absence when I stop taking them. Constipation gets pretty bad in the first week, but usually improves in the second week. Keeping myself hydrated seems to help...try getting those 2 liters of water in a day. About the only thing that seems to get worse in the second week is arm pain...I get some kind of inflamation that takes a week to make itself known. There's also the phenomenon known as "chemo brain", where you feel as if the world is moving 30% faster and thoughts kind of blur together in an impenetrable haze of delusion that leads you talking about strange stuff, and you forget things a bit as well. Then there's also the phenomenon known as "chemo brain", that I'll touch upon at a later time.

(OK, that's not really stream-of-consciousness typing, but perhaps it gives you a sample of the feeling. Wink

)

Not sure if you are doing 14 or 21 day cycles...if you're not getting any shots out of the gate to boost your blood counts I will guess 21. I start to feel a bit more normal around the 16th day, and just about completely normal by the time it is time to repeat the process all over again, with the start of the second cycle bringing about the additional bonus of massive hair loss. I didn't think six cycles would be so long, but even at the next to last one, it still feels like something that will never end.

My family tells me I'm harder to deal with. I don't really notice that so much myself, but I trust their judgement over mine on the matter. Do trust your judgement on over-exerting yourself though. When you feel tired, rest. Try not to nap too much though unless that's already a part of your routine...when I nap I render myself unable to sleep normally at night, and end up making myself more tired.

So I guess for me, the physical discomforts are there, but it's more of a mental depression that I have to keep on top of. Hopefully ChemoMan will grace this post once more with his comments...he is proof that the end of the road does exist, and I'm pretty sure that we'll all get there too.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

ChemoMan · Posted: Wed Mar 04, 2009 2:53 am Post subject: Re: Primary Colonic Lymphoma

Hi SingleDad

Sorry to hear you have joined the club. The good news is they picked it early so you should do OK.
I read your post with interest and it seems you have things in control. The only thing I have any concerns with is the steroid appetite, watch that as you progress it will catch you out. Nothing worse the chucking your toenails up for 8 hours Crying or Very sad

Try not to eat too much during the steroid rush as hard as it is. Also watch the crash when you stop taking the steroids its a bit of a shock if you are not prepared, you might need to warn any loved ones you live with, but maybe not if you are properly prepared. I felt like superman for the 5 days then felt like stringing myself up 2 days after the last dose, but I knew it was coming so I didnt Laughing

Both Joepet and I had a hard time on the 4th cycle so watch that one, remember to take the anti nausea pills religiously, and good onya for having those ginger pills handy.
I have one question for you. Did you have a particularly stressful year prior to this? I have always been a bit skeptical about the role of stress in cancer but after communications with Joe I'm not so sure anymore.
Anyway mate keep fighting the good fight, you should do OK, keep us posted we will always be here and you can PM anyone at anytime if you feel like it.
Good luck and I'm hoping you have an easy road.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

SingleDad · Posted: Wed Mar 04, 2009 6:48 am Post subject: Re: Primary Colonic Lymphoma

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.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

SingleDad · Posted: Wed Mar 04, 2009 2:46 pm Post subject: Re: Primary Colonic Lymphoma

So far so good.....drug free - good appetite and energy l levels - enjoyable lunch out.

BTW is this the correct thread??? I do not have colonic.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

ChemoMan · Posted: Wed Mar 04, 2009 3:26 pm Post subject: Re: Primary Colonic Lymphoma

Hi Singledad

I doesn't matter about the thread. You can sit down and write your story to link to your Sig if you want to. That way others have easy access to your story when they come here for the first time and you respond to them, if you chose to stick around. You can also start a new thread if you like. There are no rules other than the ones posted in stickies around the place.

DLBCL is very aggressive so I don't think you had it 2 years ago, untreated it would have killed you before now. Don't worry about that by the way the chemo will fix you up. My understanding of the origins of this is that it is a spontaneous translocation of a gene from one chromosome to another, the causes of which are varied. I posted a link to an interesting webcast about the origins of lymphoma that you might want to look at if you are interested, its on this board.

About eating. Your Docs were right in saying just eat, my warning was really about overeating. I ate like a horse and I really over did it in cycle 4 hence my 8+ hours of vomiting. I actually put on weight during chemo which really surprised me.

Anyways stick around if you feel like it, we could use all the extra help we get. Good luck and keep fighting the good fight.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

SingleDad · Posted: Wed Mar 04, 2009 3:54 pm Post subject: Re: Primary Colonic Lymphoma

Okay good...this is as good a diary as any and good idea about the links. I'm an experienced poster so it's easy.

No afternoon low so far and lots of energy - partly a socialized lunch...I don't do it enough.

Thanks for the help and also insight into the "aggressive" - it's hard to know what that means.....I'll pass it along to someone who it will be useful for ( another doc who felt bad about his "referral". )

I shall be diligent in warning others not to let symptoms do unchecked now I've heard your warning.

My madcap rush now seems all that more correct....

I understand the translocation.....I accept nothing I did was the cause and it's not an "invader" - it's a busted important part of the machinery that the chemo fixes most often.

All those are very positive mindsets.

Oddly I probably feel healthier today than I have in a while - partly - I had a low level urinary infection that for whatever reason the docs did not bother to treat.

I finally nudged the urologist and said since I'm having surgery maybe a good idea.....oh yeah okay.... Rolling Eyes

Gone a few days and it helped - clearly it was tiring my body.

Oh yeah - is a bit ginseng okay in the morning??? Find it's a pick me up. I'm going to try it over the pseudoephridine.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

joepet · Senior User Joined: 18 Dec 2008 Posts: 286 Location: Japan

Hi SingleDad,

No problem with posting here. But if you ever want to write up your particular Primary Testicular Lymphoma experiences in another post, it might help someone in a similar situation who is Googling around trying to figure out what is going on with themselves (this post is now #3 for the title search)

6 rounds + rads...sounds like they are really going to obliterate this sucker. Wouldn't worry too much about the bone marrow...if it hasn't been found elsewhere, it's pretty unlikely it will be found there.

My doc has me take 60mg of prednisone (12 little pills) after breakfast, and 40mg (8 pills) after lunch. Not sure if spacing out the dosage helps, but I never really noticed the "roid rage" so much, though I do feel the "down" part afterward.

It's great that you are not suffering much now, but remember that the effects of chemo are cumulative, so they may creep up on you over time. Also try not to over exert yourself no matter how well you feel...I ended up tripping and spraining both my arms very badly...couldn't move them for three days, and even now three weeks later my elbows can't really support much weight. R-CHOP is hard enough without making things more difficult for yourself!

And I'm glad that you are in Canada, so you don't have to deal with all of the insurance BS that Americans do!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

SingleDad · Posted: Wed Mar 04, 2009 7:22 pm Post subject: Re: Primary Colonic Lymphoma

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.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

	Cancer Forums Forum Index -> Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum	All times are GMT - 5 Hours Goto page Previous 1, 2, 3, 4, 5, 6, 7, 8, 9 Next
Page 3 of 9

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others