Primary Colonic Lymphoma

ChemoMan · Posted: Fri Jan 09, 2009 3:57 am Post subject: Re: Primary Colonic Lymphoma

Hi Joe

Its a side effect of the Vincristine, neuropathy. I got it every chemo day mainly in my toes. It should go away after one or two days and if it doesn't your doctor may change you to Vinblastine which is not so damaging to the nerves. Next time you see the Doc explain to him what happened and how long it lasted. The problem is it could be permanent, but if it only lasts a day or two it should not be a problem. I remember vividly the strange tingling in my toes as I walked from the ward to the car after each chemo. Your Doctor will be on top of it as it is a well known risk, hence his concern, but don't worry you just need to accurately report your symptoms to him. BTW I never had it in my fingers only my toes.
Hows the hair going ? By cycle 3 I had not a hair on my body, but hey its only hair and it grows back Smile

keep fighting that good fight Joe and chin up its sounds like you have a great Doc.
_________________
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

Although I had shaved my head on New Years Eve, hair is growing back all over my head. Maybe not as full as before, but definitely there. I have a little less hair in most places, but for the most part still hairy all over. It will not go gentle into that good night!

The funny thing is that most of my side effects happen well after the chemo is administered. The arm pain usually occurs about a week after the IV, and this slight numbness occurred from day 15 of cycle 2 (only thumb and three fingers on each hand, no toes)

My next appointment is the Rituximab on the 14th, so I guess I'll bring it up then.
_________________
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 Jan 09, 2009 3:51 pm Post subject: Re: Primary Colonic Lymphoma

Hi

Interesting. I had the Rituxam and the CHOP on the same day, it sounds like they are giving it on different days to you. The side effect from the vincristine is not the only one. The red stuff Doxyrubicin can do terrible things to your heart, but they have already tested your heart to make sure it is healthy enough to take it, with that one you need to report if you are having palpitations/heart flutters. Doxyrubicin is the H in CHOP and it is the one that is most responsible for hair loss. Don't be to concerned with any of this just report all symptoms as accurately as possible to the Doc. It may help to keep a diary of your symptoms so that you can be sure your info is accurate.
I buzzed my hair twice in 12 months once in the first week of chemo and once a month ago. It has not recovered to its former rampant state and I am starting to think it never will but I don't care one hoot. As your hair is still growing and you are a lot younger, I suspect that you will not have the same issues as me in the hair department 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

Yes, I get Rituximab and CHOP drugs separately. I get 700ml of Vitamin R, which took 10 hours the first time and six hours the second, so I guess they figure it is best to give my body two days to digest everything. I wouldn't object to doing it all at once though...one less hole jabbed into my arm, and perhaps one less day I would need to take off of work. I'm wondering if I should start giving the left arm a rest soon...that area is still a bit tender.
_________________
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 Jan 09, 2009 10:28 pm Post subject: Re: Primary Colonic Lymphoma

Hi
Interesting that the Japanese are still doing that. They stopped doing that here as soon as they found out it made no difference.
I used a different arm each time. I felt like a pin cushion by the end of it all.

Cheers
_________________
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

One of the unique things about the Japanese health care system is that one of its biggest problem is that its residents spend too [i]little[/i] on health care. All prices on everything are set by the government, and it is so cheap for us that over 50% of the hospitals are currently in the red.

This is the only place I know where all of the doctors prescribe antibiotics for a cold. Does a patient need it? Probably not. But the doctors make a little bit of money for prescribing it.

While it may or may not be a factor in the decision, I think that the hospital makes slightly more money for stringing treatment over two days than they would by doing it all at once.

Or maybe I'm reading too much into things, and it's just that the outpatient staff only works from 9 to 5. Who knows?

If you're interested, here is a nice program discussing the differences in various countries medical system, including Japan:

http://www.pbs.org/wgbh/pages/frontline/video/flv/generic.html?s=frol02p101&continuous=1
_________________
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 Jan 10, 2009 4:12 pm Post subject: Re: Primary Colonic Lymphoma

Hi Joe

Thanks for the link, very interesting. I find Japan a fascinating place particularly the youth subcultures which have reached legendary status on the net. Your take on things certainly seems to make sense. Regardless of any problems with the Japanese health system it certainly gets results and with the highest life expectancy in the world they are obviously doing something right.

Cheers and Thanks 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

Though I shaved my head on New Year's Eve, about 20% of it is still growing. It is diffusely spread across my head, so even with two weeks of stubble growth, I still look bald from a meter or more away.

I did mention the tingling in my fingers to my doctor, who basically said "Yeah, the Vincristine will do that to you" and kept the doses as is. They did fail to get a vein in my left arm after four attempts, so they went with the right this time.

WBC still around 3800, so no other shots needed at this time.
_________________
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 19, 2009 1:49 am Post subject: Re: Primary Colonic Lymphoma

It all sounds good Joe Very Happy

If that tingling gets worse do mention it again to the Doctor as the damage vincristine can do is permanent, but I have a feeling you will be OK.

Good Onya Mate glad to here you are doing so well. Cheers 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

Have you had any new scans recently Arthur? (your sig mentions the last confirmation last October) Or has the doc already moved you on to the twice a year plan?
_________________
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: Tue Jan 20, 2009 2:37 am Post subject: Re: Primary Colonic Lymphoma

Hi Joe

my next appointment with the professor is in a few weeks. It's a physical only with blood work, my next scan is due in July. They are very relaxed about followups here they only tend to do it for 2 years after the chemo and the scans are followed by the physical, then the scans again. The Prof said that if it doesn't come back after 2 years then it probably won't. You can request scans to 5 years out but I couldn't be bothered as I have faith in the treatment and the science behind it. I have noticed that my hair is getting thicker and is starting to feel like real hair instead of newborn baby hair Smile

Should be due for my second haircut in 14 months soon Smile

Cheers Joe and thanks for asking Smile

Are you still doing OK ?
_________________
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 for the update, though it is a little funny to hear you mention the words "science" and "faith" in the same breath. Wink

Still fine here...not sweating the "little things" like constipation, inflammation, and chemo brain that go with the territory. Still growing some "baby hair" on my head, but except for the parts directly above my ear you can't even see it from a meter away. I still have to shave my face, though I only bother to lop off the 100 or so hairs that are still growing once a week.

So I should expect about six months after chemo for hair to start returning to normal?
_________________
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 Jan 21, 2009 1:33 am Post subject: Re: Primary Colonic Lymphoma

G'day Joe

Re your hair in your case I would say that it will be back before 6 months out. It may be very different from the hair you had, for instance mine was ash blonde and very curly and now is very straight and red ! From what I have been told it takes about 12+ months out from Chemo before it starts to look like the hair you used to have.
Re chemo brain mine went away very soon after the chemo finished, by 2 months things were back to normal. I had very few other side effects apart from constant nausea, with not to much vomiting thankfully, and debilitating fatigue mainly during cycles 5 and 6. I actually put on a kilo during treatment probably due to fluid accumulation because of the cortisone, so my appetite wasn't too bad considering. I did stay away from green veggies and salads, which I normally enjoy, because they tasted terrible Sad

Oh and soup was not to be mentioned around me , the mere thought would make me sick.
Its all good now Joe as it will be for you when you are finished Very Happy

Cheers

_________________
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

Gaijin · New User Joined: 30 Jan 2009 Posts: 4 Location: Japan

[quote="joepet"]

While it may or may not be a factor in the decision, I think that the hospital makes slightly more money for stringing treatment over two days than they would by doing it all at once.

Or maybe I'm reading too much into things, and it's just that the outpatient staff only works from 9 to 5. Who knows?[/quote]

Damn...FINALLY! Someone actually agrees with me on my 'they-stretch-it-out-to-make-more-money' theory concerning hospitals here in Japan. That is, without a doubt, the BIGGEST reason why I have come to loathe Japanese hospitals...but it seems I am in need of a 'change of heart' seeing as how I will be visiting them quite frequently from here on out.

Hi there, Joe. Don here. I made a new post yesterday in this same section and a member mentioned your name. I did a quick 'search' and found your post here. I'm not glad to see that someone has cancer but I am glad to see that I'm not alone in my particular position. (Please read my post for the details on that http://cancerforums.net/viewtopic.php?t=11719&sid=ae0a210e812f4f29b657cc36b104b62e).

I'm very interested in specific details about how your experiences with the hospitals in general (and the doctors).

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

Something about the fourth cycle...ChemoMan (hope you and your family are safe from the bush fires!) threw up for eight hours straight. and I fell down and sprained both of my arms! I think that his problem was due more to the chemo though, whereas mine was just boneheadness involving running outside in the dark. Embarassed

60 hours later I am still sore, but at least I can feed and clothe myself once more, as even type with both hands. Hopefully I don't make things any harder on myself before the next cycle begins.
_________________
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

	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 2 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