Primary Colonic Lymphoma

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

Hi everyone. Short time reader, first time poster. Please allow me to share my somewhat unusual lymphoma story.

At the beginning of August, I began noticing some blood in my stools. Thinking it was just hemorrhoids or something not so serious that would go away on its own I just kept an eye on it, but after a month with the bleeding only increasing I finally went to a proctologist. A rectal exam confirmed the blood, but not the source of the blood, so I scheduled a colonoscopy that I had to wait another month for because I wanted to do it on a Saturday so as not to miss work (which is funny, given how many days of work I would go on to miss...) I was also still secretly hoping that the problem would go away on its own and that I wouldn't have to do this, but the bleeding kept increasing to the point where a small stream would come out of me, so I finally realized that I would have to actually go through with it.

The colonoscopy itself at the Yokohama clinic (oh yeah, I'm an American living in Japan!) was actually mostly painless, but near my rectum, they did find a very large, bleeding lump, far too big to take out. He did take a biopsy, told my wife and I that it was very likely colon cancer, and said that we should not await the biopsy results and immediately see a doctor that he knew at the University of Tokyo Medical Research Center.

The doctor did a digital exam and said that, if this cancer had spread, we would be talking about how to improve the quality of life for the few months I had remaining. Two very long days later I went through a battery of tests that included a CAT scan and barium enema. A little while later, he gave us the good news that the cancer had not spread, and was most likely a Stage 2. Given the difficult location of surgery near my rectum, he suggested a month of radiation treatments to shrink the tumor before surgery, at which point he said he could improve my chances of not needing a stoma (artificial anus, ie, doing number two in a bag for the rest of my life) to 50%. This was scheduled to start at the end of October, before which he also wanted to take some additional biopsies to confirm the diagnosis.

On the day of the biopsy and the day I was to begin radiation treatment, the doctor called us into a room again and apologized, saying that there had been a change in my diagnosis. The results of my original biopsy had come back, and they said that the results said that the lump was [i]not[/i] colon cancer, but Diffuse Large B-Cell lymphoma. This, he said, would change everything, and there would be no radiation or surgery. Having finally gotten used to the idea of having colon cancer, and knowing nothing about non-Hodgkins lymphoma, this threw me for an even bigger loop than my colon cancer diagnosis. "Good grief, [i]now[/i] what do I have!?"

After scanning the internet a bit, I eventually came to understood that this wa, in fact, good news. This condition could not only be treated with chemotherapy, but actually [i]cured[/i]! But extra-nodal lymphoma, especially in the colon, is apparently quite rare. And I was again surprised when the results of the second, more extensive biopsies came back "inconclusive". What? You poked me seven times and couldn't confirm the diagnosis from the previous one!? So November passed with attempts to get the original Yokohama sample and confirm from that. Meanwhile, all the biopsies had increased the bleeding to the point where I had to go to the bathroom literally every two hours to spit blood out of my arse. A good night's sleep was of course out of the question, and the blood loss was starting to make me anemic. So when they still couldn't confirm the original diagnosis, I was hospitalized for observation and for another battery of tests to confirm that the lymphoma was nowhere else to be found while the issue was taken up at a monthly meeting of lymphoma specialists.

At the end of November, the specialists and doctors were finally convinced that this was indeed NHL. A couple of days later, the doctors were also finally satisfied that the lymphoma was nowhere to be found in any of the other suspicious places like, um, [i]the lymph nodes[/i] Confused

At last, after months of uncertainty, I had a diagnosis of Stage 1E DLBCL. So I was perhaps the happiest person to ever hear a confirmed diagnosis of lymphoma!

R-CHOP treatment began on December 3rd. It was my hope that the bleeding would slow down and I would be able to sleep normally by the end of the year. But by December 5th, the bleeding had completely stopped! I still don't know how much the lump has decreased in size, but the fact that the other day I passed by far the largest, thickest stool in recent memory seems to be a good sign.

Although they wanted to keep me for observation through the second cycle, I was able to convince them to let me out two days ago, once they saw that my white blood cell count after Day 14 was around 2900. Side effects of the chemo have been fairly mild thusfar, but I noticed some clumps of hair on my pillow this morning, so I'm having to come to grips with being a bald Santa this year. But that's a small price to pay if I may become another of the growing number of DLBCL survivors in the new year!

Sorry for the very long post, but as I found very little information on the internet regarding primary colonic lymphoma, I write this in the hopes that someday, someone else in a similar situation may learn what to expect. I'll keep this thread posted with my progress! Smile

_________________
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 Dec 19, 2008 8:26 pm Post subject: Re: Primary Colonic Lymphoma

Hi Joepet

A very interesting post. I'm glad you responded so well to the chemo that is a very good sign. Thank you for posting as your post could come in handy for someone.

I take it you are on R CHOP 21 and not R CHOP 14. 21 is fairly mild as you actually get to recover between sessions. That being said by cycle 6 you will be feeling it pretty bad. Take the anti nausea medication you have religiously, especially during the first week of the cycle, even if you don't feel sick. if you leave it and you start vomiting you wont be able to stop for several hours and that is not pleasant, but that only happened to me once after cycle 4. Take care to avoid crowded places during your chemo and be very very careful with your hygiene , wash your hands a lot especially after handling animals. Ask friends and family to stay away if they have colds and you should be right. The worst side effect I had was fatigue which was pretty severe.

You have a very good attitude and you have obviously been doing your home work, which is very good as the more you know the less you fear. Good luck with it all and keep us posted.

merry Christmas and happy new year !
_________________
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

Thanks Chemoman (please call me Joe. Smile

)

Yes, I am on R CHOP 21 (I had assumed that 21 days was the default...I'll update my sig with that info). One of the nice things about Japan is that the doctors and nurses are very thorough. They explained everything to me in detail, and one nurse even went so far as to create for me a customized 15 page Japanese/English hybrid pamphlet explaining the possible side effects and how/when to consult a doctor. Masks and mouthwash are now woven into my daily routine, and the only person more anal about cleanliness is my wife.

At this point, that is probably the most frustrating part of my experience. I feel better than I have in months, but I can't take my daughter to a movie or go Christmas shopping or a bunch of other things, and it is hard to reconcile that with my general feeling of wellness. Maybe the oncoming loss of hair will help me to accept this situation. On another note, why am I only losing the hair that I want to keep? Losing the hair in my nose is annoying, and "down there" I am on my way to becoming as clean as an eight year old. But the unsightly back hair and the hair on my arms that I must shave for the catheter are as good as new! Confused

Oh well, it is all temporary I suppose. Might as well have some fun with this...anyone know where I can find a really bad toupee? Wink

_________________
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 Dec 19, 2008 9:10 pm Post subject: Re: Primary Colonic Lymphoma

Hi Joe
I lost every hair on my body. Those pesky hairs that grow out your ears and nose were the last to go unfortunately and the first to grow back ! you may or may lose it all as everyone's response to the chemo is different. its all back now but the hair on my head is taking its time, for some reason it is growing much slower than anywhere else. I now have a huge collection of beanies and hats. To tell the truth it didn't bother me much, I took it as a sign the chemo was working Smile

Interesting that you are under the Japanese health system. Since the Japanese have the highest life expectancy on the planet I reckon the heath system there must be top notch. In other words you are in very good hands.

if you pick a movie session time where it is not busy you could go anyway. its only big crowds you should avoid , but that would be difficult in Japan I imagine. The effects on your immune system are not as critical as some of the leukemia treatments but you do need to take some care.

I had tumors the size of small apples under my arm and 4 days after I had my first Chemo they had shrunk to pea size, they literally melted away. R CHOP is awesome I rekon Smile

Keep that attitude up Joe I have a very good feeling about your prognosis Smile

Till next time and take care .
_________________
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

Hi Chemoman,

I could fill an entire forum with posts on my experiences with Japanese health care. Suffice to say, I think that they have found a way to keep costs down and make excellent health care available for nearly everyone. I cannot lose my job over this, and I will receive 2/3 of my salary as long as I need to be away from work. My company is also very supportive, and they tell me that I can take off as much time as I need. It is a relief to not have the external distractions of worrying about money or employment.

Despite the fact that I don't _have_ to do so, I am still planning to return to work as a financial programmer at the start of the new year. The hardest part about this will probably be the 75 minute bicycle/train commute to work (one-way). I'll pay extra money for the good seats so I don't have to stand in a crowd, and if that still isn't enough...well, I'll cross that bridge when I come to it.

Though I have no immediate plans to do so, I wonder if I will ever be able to move back to the US. NHL is a rather big prior condition for a health insurance provider to consider...I hope HMO reform comes 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

ChemoMan · Posted: Sat Dec 20, 2008 6:36 pm Post subject: Re: Primary Colonic Lymphoma

Hi Joe

If you return to work it may be best to do it in the second or third week of your cycle. This will minimize you chances of getting infections and you will also will feel stronger and better able to cope. By day 14 your blood counts should be approaching normal parameters and that is the rationale behind this. Most people I know who went to work do this and it was also recommended to me by my Hematologist. Towards the end of your treatment Fatigue will become an issue. I did not work and I took annual leave and long service leave for the entire time and then some. We get a lot of leave In Oz compared to the US.

The Japanese are awesome and I totally expected their Health system to be superlative and efficient and you have confirmed that for me. it seems that you were very lucky to be there when this happened.

Thanks for all your posts Joe they have been very informative. I look forward to reading about your spectacular recovery 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

Hi Chemoman,

January 5th would be Day 13 of the second cycle. Actually, Day 14 was the lowest of my white blood cell counts recorded, but it capped the end of an unusual week. I had 4070 on Day 7 and Day 9 it dropped to 3590. On Day 10, my mother-in-law suddenly passed away, an event that was a great shock to my family. Day 12 saw my count rise to 4410, and I thought the worst was behind me, but on Day 14 I was all the way down to 2940. The doctor said it wasn't too unusual for the number to jump around in the second week and still discharged me (I was actually out of the hospital almost all of the time after her death), but it was still a bit disconcerting to see it fall again so dramatically. Might the stresses of the occasion have had something to do with that?

I do enjoy my work...after six years in management (the stress of which may have brought this upon me for all I know) I downsized into a more individual contributor role early this year. Almost no meetings; just stimulating programming challenges, and occasionally surfing around places like cancerforums.net Wink

So I think that this would be good for my mental well-being as well.
_________________
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 Dec 20, 2008 8:01 pm Post subject: Re: Primary Colonic Lymphoma

Hello Joe

lymphoma is caused by a spontaneous translocation of a gene from one chromosome onto another. This is probably the case with all cancers. Stress as far as I know has never been shown to do this. There are a number of pathogens, virus and bacteria, that can do this as well as chemicals which are found in the environment and radiation from various sources. Also if you have an autoimmune disease your chances of NHL skyrocket ! Its all very interesting. As one gets older the chances of these translocation's happening increase. Having said all that it is possible that stress leaves one more susceptible to being infected by the implicated pathogens so there may be something to it.

This web page
http://www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=1574367#
has some very informative webcasts, if you haven't done so you might want to look at some of them.

If you can find a way to log onto medline fulltext a few well worded searches will find you a wealth of interesting stuff. The Cochrane review database is also useful for looking at clinical trials and there is always Google scholar. Don't be put off by the medical jargon, Wikipedia will help you with that.

My theory is the more you know the less you fear so go for it Joe!
_________________
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

Hi Arthur,

I finally got around to reading the link in your sigfile. I do notice from your story that your problems as well seemed to begin after an extended period of stress in your life. While I also don't believe in stress causing cancer directly, I do believe that stress weakens the body to the point where it is easier to become sick.

I admit to having gone through a phase of not wanting to know the details of my illness and just wanting to leave everything to doctors. But eventually came a feeling that I needed to double check the things that the doctors were saying. While I didn't unearth any grave mistakes in my treatment, independently confirming these things did give me the confidence that my doctors know what they are doing, and that I am doing all the things that I need to do.

It was good to read about your chemo experience, as it helps me realize that just because the first cycle is going well doesn't necessarily mean that the others will. I'm not going to live the next three months in fear of what might happen, but I will also remember to be careful and not overextend myself. It did make me jealous about the Australian accumulated sick leave though! Razz

I will check out the webcasts soon...right now I'm going out to see that movie my daughter wanted to see...the theater should only be out a quarter full for this one. Smile

_________________
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 Dec 20, 2008 11:26 pm Post subject: Re: Primary Colonic Lymphoma

Hi Joe

Now that you mention it I did have a crap year before my diagnosis, both Physical and mental stress almost killed me. But at the end of the day my experience and yours are only anecdotal evidence.

Don't be too jealous, not everyone has such generous long service leave, I work for the government here in SA and apart from federal employee's we probably have the best LSL. Some don't get any at all.

Enjoy the Movie !
_________________
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 is day 12 of the 2nd cycle. Went in for a checkup; WBC is 4100, and no other problems noted. Side effects are lighter than the first time, which was fairly light already. Only discomfort worth noting is that the area around where the chemo IV (not the rituximab IV) went in gets sore about a week after the treatment, but that goes away after a couple of days. My hair became mangy to the point where I shaved it all off on New Years Eve, but some of it is still growing back. One of the things I looked forward to about hair loss was not having to shave, but now it looks like I'll just have more places to shave. Twisted Evil

At this point my only worry is my lack of things to worry about. Even though my doctor says it is not a problem, I keep thinking that if I'm not "suffering enough" that the treatment is not effective. I've stopped bleeding and stool circumference suggests that the lump has greatly decreased, but that still doesn't stop me from wishing I was double dosing with R-CHOP 14.

Does that make any sense?
_________________
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 Jan 05, 2009 2:57 am Post subject: Re: Primary Colonic Lymphoma

Hi Joe

yes it does make sense. Don't worry by the end you will have had enough suffering to say,"It must be working" the fatigue will do that for you. Apart from my 8 hour bout of vomiting at cycle 4 and the extreme fatigue at cycle 6 my chemo treatment went as easy as. If it wasn't for the fact that you could literally see the tumours shrinking I would have felt like you. Be careful though Joe, don't take it all for granted and take extra risks, your body will not cope well with illness of the contagious variety.

All the best Mate its really good to hear you are coping so well. Good luck.
_________________
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

Thanks Arthur. I definitely need to stay humble and not get cocky until I'm finished!

Regarding your cycle 4 vomiting spell, was that a result of not taking the anti-nausea meds, or in spite of them? I had a bout of food poisoning about two years ago in a Chicago hotel that was a lot like you described, only with the desire to both sit and kneel at the toilet simultaneously. I don't look forward to ever repeating that incident again. Sad

_________________
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 Jan 05, 2009 3:26 pm Post subject: Re: Primary Colonic Lymphoma

Hi

It was in spite of them. It was terrible I really thought I was going to Kick it then and there Sad

They put me on another anti nausea med called aprepitant which worked a treat and I did not have any more problems after that. I always felt sick on week 1 of all my cycles apart from the first one.

You are doing very well Joe I hope it continues and you find all your cycles as easy as the first, it does happen. And don't worry this stuff really works Smile

Onya mate 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

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

Well I finally have a noticable side-effect, some numbness in the tips of all but my little fingers, as well as my right big toe. Not completely numb, but definitely a noticable loss of feeling. It's one of the very long list of potential side effects of R-CHOP, and it's said that it almost always goes away after treatment is discontinued, so I'm not particularly concerned about that as much as I'm concerned that the doctor may use this as an excuse to delay the rest of treatment.

Anyone know what level of "numbness" would be of such concern to a doctor?
_________________
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

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