Primary Colonic Lymphoma

ChemoMan · Posted: Fri Sep 11, 2009 10:21 pm Post subject: Re: Primary Colonic Lymphoma

Hi Joepet

hey I forgot rule number 1 twice after my chemo Laughing

I didn't go to the doctor though I managed to get things into perspective pretty quick. looks like you have nailed it and there is nothing to worry about really, watch and wait would be the sensible thing to do here.

RE the root canal, I never have them anymore I just ask for the tooth to be pulled. The reason is they can never really eradicate the infection and you end up with a small encapsulated abcess under the root. This will usually be OK and may never cause you any overt problem, but can flare up at any time. worse than a flare of the infection however is the the theory these types of sub clinical infections are what caused my Rheumatoid Arthritis, which in turn led to me developing NHL, as soon as I found that out I have insisted on tooth extraction rather the root canal. The choice is yours however so you do what you think is best.

Nice to hear you are feeling so much better now Very Happy

How did your hair end up ? back to normal or is it now different?
_________________
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

"How did your hair end up ? back to normal or is it now different?"

Is that the chemo brain talking again? Wink

"And my hair is pretty freaky. I used to have a big colic that concerned me, but now my hair is all one big colic! Wavy and curly and completely uncontrollable. Haven't decided whether I should get a buzz cut or let it grow down to my shoulders..."
_________________
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: Fri Sep 11, 2009 11:51 pm Post subject: Re: Primary Colonic Lymphoma

Hi joepet

yes probably(RE chemo brain)...having a bad day today Embarassed

My hair is crap....still looks and feels like baby hair, but I am used to it now. I think this will be the way it will stay from now on .
_________________
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

ChemoMan · Posted: Sat Sep 12, 2009 10:45 pm Post subject: Re: Primary Colonic Lymphoma

Hi Joepet

Just to let you know your thread is the most read on the lymphoma forum. You have had over 12,000 reads listed. SD is next with over 9,000.

Your famous Very Happy

_________________
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

Anybody ever have any post R-CHOP dermatological issues? About three weeks back I suddenly got a ton of ache all over my neck (counted 42 spots at the time, doesn't seem like it's any less now) that just isn't going away. Never had anything like this even in my teenage years!

It's certainly not the worst thing that caould happen to me, but it is quite itchy and makes shaving a somewhat painful experience. Confused

Oh, and I'm pretty sure that Aisha will take over the role of "most famous person on the forum" by the end of the year. Razz

_________________
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: Mon Oct 12, 2009 3:16 pm Post subject: Re: Primary Colonic Lymphoma

Hi joepet

Yes I have had skin issues as well. Mainly this horrible dry skin on my legs, the itch drives me nuts some days, and like you I have the crazy itchy nipple Confused

Don't aslk me what thats about. As my treating doctor is a hematologist his speciality is blood and he really can't help much Crying or Very sad

I think I will get some Triamcinalone as vincera suggested in his thread. I have had no acne so I can't really help you, but maybe an antibiotic cream might help or even an acne cream ?

Re your thread since I wrote that you have had another 2000 hits. No way anyone will get close and thats because of the title. You can thank google for that. If you put "primary colonic lymphoma" in google your thread comes up at number 5. Smile

So you are and will be the champ Laughing

In a way you could be described as a shining light to your people Wink

Take care gaijin catch ya soon
_________________
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: Mon Oct 12, 2009 8:36 pm Post subject: Re: Primary Colonic Lymphoma

Wow - my clients must have been interested... Wink

I'm still having some skin issues tho way less.

Nerve endings are sensitive - having a hard time picking up a hot cup of tea.

More sensitive to cold. ( hot tub is welcome both for skin and getting warm )

Generally using aloe and I've started with a scrub to get rid of some of the remaining skin bumps on my arms.

I think it takes a while before body healing gets back to normal.
_________________
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

I see my thread is about to fall off of the first page, so I guess I'll update so as to keep my "times read championship" away from Aisha for a few months longer...

Last month I had my annual physical, this time at a new place that has a relationship with Johns Hopkins. It was a nice place that combined the atmosphere of an American clinic with the assembly line nature of a Japanese clinic. I got the whole day off from work for an exam that lasted only an hour, which was a nice deal.

A week after that I had my regular checkup with my onc. The blood work seemed decent, and so I thought I had nothing else to think about until my next followup in January. But two weeks later, the results of the physical came back, and they claimed that the ultrasound detected an enlarged spleen that I needed to followup on. Naturally, I violated ChemoMan's Two Laws of Lymphoma several times in the following days.

I mailed my onc, but he was away at some kind of symposium, so my wife called the hospital and got another onc. He told her that an enlarged spleen was "no big deal" and was nothing to worry about. A few days later my regular onc finally got around to reading his mail and answering mine. His response was a lot more sensible, saying that of course, without knowing how large the spleen was, he couldn't say anything definite about what it might mean. But the bloodwork taken after the physical showed no indication of the problems that might incur in the later stages of an enlarged spleen (reduced red and white blood cell count), and my LDH was within the normal range (the LDH reading from the physical was 276, which set off another alarm from the Johns Hopkins affiliated people), so it was unlikely that I was in an immediately urgent situation.

What pissed me off was his non-committal response to my question of whether this was something I needed to look into before my January followup. He basically put the ball back in my court and said "if you're worried about it, please make an appointment for an earlier scan." Perhaps he felt a bit emasculated when I refused a second CT scan a week after a previous one he had taken in April when I thought that was overkill. But I think that it is his job to give me a firm recommendation, and my job do determine what to do with it.

I think I will wait until January and do the CT just before my next meeting. From the data I have now, it seems that the spleen enlargement would be in the early stages, so it is probably not a relapse. It is a possible long-term side effect from chemotherapy, and the two months or so that I had an infection might have played a part in it as well. Spleen being the source of an NHL relapse is unusual but not impossible (not unlike my original lymphoma), but even if that is the case, I doubt that it would make a whole lot of difference whether it is discovered in November or in January, and January is a heck of a lot more convenient for me.

Finally, at the risk of hijacking my own thread, I heard through the grapevine that Don recently finished up a hospital stay of his own after an infection. Seems like the R-CHOP is affecting him worse than the previous regimen. Hopefully he will feel up to updating us on his condition soon.
_________________
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

aisha1 · Posted: Sat Nov 07, 2009 7:51 am Post subject: Re: Primary Colonic Lymphoma

Hi Joe,

The doctor obviously put you in a tricky situation, and maybe didn't really know that much of what was going on himself, hence leaving the big job for someone else to consider.

An enlarged spleen could be, as you have pointed out a product of chemo. In which case, you could be feeling a bit tender around that area for a little while. If I were you, I'd keep an eye on things for now.

I'm hoping that you are well. If you have any pain from it, or develop hiccups a lot - go back to the doctor. I guess you will be opting for the January conclusion for the time being.

Look after yourself.

Me.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

ChemoMan · Posted: Sat Nov 07, 2009 2:23 pm Post subject: Re: Primary Colonic Lymphoma

Hi Joe

Wow that was a bit of a scare for you. It should be OK but I can understand how rules 1 and 2 went out the window there for a while. Glad you got a grip on it again. Maybe a PET scan is in order rather than the CT when you go back in January?

When I saw my Doc last he mentioned how tough it must be because even though you have finished and are in remission it never actually leaves your mind that you have had cancer and the fear of relapse never really goes away. I agreed of course and said it is our ( lymphoma patients) sword of Damocles. In time the fear does lessen but it never goes away.

Anyway I reckon all will be well, and the test next year will be NED Very Happy

_________________
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

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