Primary Colonic Lymphoma

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

The problem with R-CHOP side effects is that they really are particular to the individual. What happens to one person may not happen at all to someone else, but may happen doubly hard to another person. Furthermore, for me at least, the effects also seem to vary each cycle. Maybe it's possible to eventually figure out a pattern, but I'll probably finish up before I ever really figure out what's happening with me. Of course, if you try something and find that it seems to help you, by all means keep doing it!

I forgot to mention that I have been taking ginger supplemental pills off and on. I asked my doctor beforehand, and like most docs giving advice on alternativee medicine he said "it probably couldn't hurt". My white blood cell counts have always been good, so take that for what its worth. I have recently become iron deficient, but that may be more the result of my sprains and poor dietary choices (though the doc is concerned enough that I'm getting a CT scan on the 11th as a result of that and recently elevated LDH levels) You may want to avoid things like soybeans, acai, and other things high in antioxidents during treatment. Recent studies have shown concern that they may have a detrimental impact on chemotherapy, as it is the goal of chemotherapy to destroy cells, while antioxidents work to repair them.

Whereabouts in Canada do you live? I'm most familiar with Windsor and Toronto, though I definitely want to check out Vancouver someday...I imagine it's getting even more spruced up in preparation for next year's Olympics?
_________________
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 Mar 06, 2009 4:33 pm Post subject: Re: Primary Colonic Lymphoma

Hello

Your sounding positive this is good Laughing

Silverwing is one of those big bore scooters is it not ? A mate of mine has a Burgman and its an impressive piece of kit. Take care hey, the last thing you want to do is take a spill, mainly because it probably will be the last thing you do Crying or Very sad

Your immune system is taking a hammering and all the immunities you built up over the years are being compromised, which is why you are getting the cold sores. It would be wise to avoid the high risk activities until you have finished the chemo.

RE the mouth ulcers they are caused by the CHOP drugs. Each works differently but basically they interfere with the growth of rapidly growing cells in the body like cancer but also all the cells in the gastrointestinal tract and hair follicles as well as others than rapidly grow, hence the mouth sores and hair loss. This is also another reason to avoid getting injured in high risk activities as you will not heal properly. I didn't have to many issues with mouth sores in the beginning, that started about halfway through, but I was on a clinical trial from nestle with a preparation to help this. I never knew if I was getting the real stuff anyway as it was a proper double blind study and on top of that, I dropped out because the stuff tasted like crap and did nothing for the nausea. I found that a reputable brand of multi vitamin capsule once per day fixed things up real quick. I checked with the Prof and he said it was fine to take. The dose I took was half the recommended one on the packet. Eating greens helped but I had trouble with that as my taste altered and I found them nauseating.

I hope that helps take care and keep posting Wink

_________________
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: Fri Mar 06, 2009 6:38 pm Post subject: Re: Primary Colonic Lymphoma

Hi

Interested in hearing about Celebrex. I was taking up to 400mg per day for my Rheumatoid as well as 2 grams of Salazopirine (Sulphasalazine) and 30 mgs per week of methotrexate. I had RA pretty bad. RA is a high risk factor for NHL

Since I finished the R CHOP I have not had to take anything and the Rheumatoid had disappeared. It turns out Rituxam is the best thing for RA, it was actually developed with RA in mind but it turned out that it works really well for DLBCL. These days it is only used for very severe RA and of course is the gold standard for DLBCL.

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 ! The other good thing is that RA associated NHL is very responsive to treatment.

Take extra care on the scoot, remember the chemo brain effect Exclamation

Safe journeys Cool

_________________
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 regular post-IV arm inflammation is a lot worse this time around. I have very tender lumps the size of golf balls sticking out. Perhaps the sprains had something to do with it be worse this time around? Compounding this is the fact that I had my Rituxan IV in my left arm, and the CHOP IV the next day in my right arm, so both arms are affected, though the left arm is worse.

Will definitely limit the damage to one arm in cycle 6!
_________________
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 Mar 07, 2009 2:47 am Post subject: Re: Primary Colonic Lymphoma

Hi Joepet

Crikey that's bloody awful Sad

is there anything they can give to stop it ? Does it clear quickly with the prednisone? You are going through the wars big time, I hope you are keeping your spirits up.
I don't really know what to say other than I hope it clears real soon. You must be nearly through your 6 cycles , that light at the end of the tunnel is getting bigger, it won't be long now.

Chin up 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

(though the doc is concerned enough that I'm getting a CT scan on the 11th as a result of that and recently elevated LDH levels)

Unfortunately, I started developing a cough a few day before this CT. This manifest itself in a cloudy shadow appearing in my lungs that didn't appear in the October scan. I'm pretty sure it is just the cold I caught from my daughter (my CRP is up to 2.64 mg/dl), but the onc says that damage from R-CHOP can also cause something that looks like this in the lungs. So he took a chest X-ray and a another blood sample to check for viruses, and wants me to come back to get another X-ray on Tuesday to compare. If he's not satisfied things are getting better, he'll postpone the 6th cycle until we figure out what this is.

Not the news I wanted to hear, but it is what it is. On the plus side, the area around the colon is much smaller than before, but that is already obvious to me by simply going to the bathroom. I kind of wish I could have a PET scan earlier so I can be sure that the 6th cycle will be the end of this.
_________________
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

My cough is all but gone, and my CRP is down to 1.2. Today's chest x-ray also shows nothing of major concern. But my LDH is over 400, and even though the doc thinks the inflammation was likely the result of the cold, he still thinks there is a very small chance it could be the result of a bad reaction to the chemo. Because of that very small chance, cycle #6 of R-CHOP has been delayed a week. Sad

Monday I get to go back in and give more blood, and if CRP is down more and he likes the other numbers, I'll start up again on the 25th.

Now I remember why I hate doctors...their refusal to use the common sense they were born with. Mad

_________________
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 Mar 17, 2009 2:30 am Post subject: Re: Primary Colonic Lymphoma

Hi Joe

The high LDH and the clinical picture you gave seems to indicate the possibility that you may have had pneumonia. The high LDH at cycle 4 was probably due to your injuries that you sustained. LDH can also be elevated because of R CHOP but the 400 figure is a bit high for that.
The prognostic value of LDH is of use before you start chemo, after chemo commences the picture painted by this marker gets very murky.
You need to get over this chest infection and hopefully the LDH levels will drop.
You said in the beginning that you could get time off work. Now is the time to take advantage of this Joe. Isolate yourself and eat well and get plenty of rest, I can't stress the importance of this enough.

You are very much in my thoughts Joe, I hope this resolves very quickly. Rest up and take care. Go with the flow and don't get too cranky with the Doc, he seems on the ball to me.

Good luck mate I'm rootin' for ya
_________________
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,

The signs pointing against pneumonia in the traditional sense:

* no fever
* no "white patches" on X-ray or CT, just a very faint, diffuse cloud.
* oxygen levels are normal

He said it looked a bit like Pneumocystis pneumonia, but that almost always manifests in the lower lung, and my "clouds" appear in the upper regions. My oxygen levels also wouldn't be nearly as high as they are now if I had that.

Of course, the very definition of pneumonia is an "inflamation of the lung", and there is no doubt that I have (or had) that. My beef is that a very mild pneumonia with evidence of recovery (CRP less than half of a week ago) and recovering immune system (WBC is about 5300) should not be enough to delay the last chemotherapy treatment of an otherwise healthy young male. The risk that a delay in treatment would result in a relapse is, to me, higher than the risk of chemotherapy significantly exacerbating whatever this condition is that I have (though I believe that both are quite small).

But, no use bitching and moaning any more about it...what's done is done. I will take it easy at work, rest up during the upcoming three day weekend, and hopefully get to put this behind me next week.
_________________
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 Mar 17, 2009 4:11 am Post subject: Re: Primary Colonic Lymphoma

Hi Joe

Can't discount a slight heart attack either.....Doxyrubicin will do that. I suspect during the 'cold' you had, you experienced chest pains. It is a distinct possibility, it would explain the high LDH and was a major reason I suggested you rest up. Some tests may be in order.

Hang in there Joe almost finished, things will get better quickly.
_________________
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

As if that alone isn't bad enough, now we've got this blowing in from China:
http://www.etaiwannews.com/etn/news_content.php?id=893441&lang=eng_news
_________________
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 18, 2009 2:21 am Post subject: Re: Primary Colonic Lymphoma

Hi Joepet

What do you get that in Japan? I cant help thinking the wheels have fallen off, everyone is trying to stop global warming, but its too late we should have done that 20 years ago when the population was 5 billion. Its 7 billion now and nothing is going to stop it getting to 15 billion in 50 years. We should start planning to cope with the change rather than doing a fruitless King Canute impersonation, and we should start seeing the forest instead of the trees.

Anyway thats for the lounge. I hope you are feeling chipper today Smile

Dont feel too bad about my last post, the truth is I'm worried for you and have been for some time, I'm sure everything will get back to normal once the chemo is over. The reason for my concern was not so much your tests but rather the distressing tone of your posts, it seemed to be getting the better of you. Don't let it do that have a laugh Laughing

Ive seen some of those crazy japanese games shows they look a real hoot, would love to see them on a regular basis.....any links you could suggest Smile

Ive got issues as well, I'm starting to feel the nodes come up again but I really don't care one bit. Jane has hassled me to go back to the Doc but I'm refusing to panic and I suppose I'm being stubborn about it all. I have my scans due in June and unless they go beserk I will wait till then. I had reason to panic in January but I hung in there and it was all OK. If it comes back it will be DHAP and stem cells and I am ready to fight one more time but once more only. Death is no big deal for me, everybody gets to do it eventually Wink

_________________
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

Hey, what's with the mixed messages? Aren't you the one who told me I didn't have to be positive all of the time? Razz

Seriously, I'm feeling better today. The cold seems to be going away, and I've resigned myself to the delay, so I might as well take advantage of it and enjoy the three day weekend more than I could have under the influence of R-CHOP. Perhaps my melancholy had more to do with issues other than lymphoma. It seems that having cancer doesn't provide one with a bubble that shuts out all of the other problems that occur in life (Though I think that it should. Maybe President Obama can pass a law on that as well?)

Given all I've heard from you in the past, your fear of the doctor surprises me a bit, though I suppose it shouldn't. The fear of relapse in cancer survivors is very real, and it manifests itself in many ways. Some people go back to the doctor at the very slightest twinge of pain or the faintest of coughs. Other people go to the other extreme, ignoring very clear warning signs that need to be addressed.

I'm sure you're aware that stem cell treatment is useless unless remission is achieved. If it's your intent to continue fighting, you obviously need to bring up noticable changes to your lymph nodes to your doctor at once. If you have relapsed, then the smaller the relapse, the greater your chances of achieving full remission once more. If it's something else (and it probably is) then you and your family get some peace of mind. So get out there and follow your own advice! Wink

Sand can be carried thousands of kilometers with a strong enough wind, and they usually start blowing across the Chinese/Mongolian desert in March. China and South Korea usually get it worse, but it's bad enough in Japan that my wife has been unable to hang clothes out to dray despite the 20C temps and sunny skies we've had.

(Some more background and a video: http://news.bbc.co.uk/2/hi/asia-pacific/7274718.stm )
_________________
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

The improvement in blood work results today were enough to satisfy the doctor and allow me to continue treatment. Last scheduled R-CHOP is on the 25th and 26th...hope that will be the end of it! Laughing

_________________
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 Mar 23, 2009 3:11 am Post subject: Re: Primary Colonic Lymphoma

Hi Joepet

Excellent news....It will soon be over.

Don't read anything into what I said other than concern for you, and yes I did say you don't have to be positive all the time in fact its impossible as you can tell from my reply to you Wink

I have been doing a lot of thinking lately and I'm afraid I was thinking out aloud Smile

I have my scans in June and I will wait till then, I refuse to panic, I have done that once too often. BTW I have no fear what so ever of Doctor's and I have absolute confidence in modern medicine.

Anyways once again good news it will all soon be behind you. Laughing

_________________
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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