The Colon Club

Hi to all,

I was wondering if there are many of you that are in a similar situation as myself. I was diagnosed 14 months ago, stage 4, multiple lymph nodes, incurable.

No options for radiotherapy and or any type of surgery due to multiple lymph node involvement.

My chemo so far has been almost constant and so far has worked in keeping my tumour in check and shrinking my nodes.
Most days I feel OK, yes for me the chemo has been and continues to be tough. I've come to terms a long time ago with the fact that I'm incurable but it would be nice to hear from others in my situation.
Maybe I'm just having a bit of a down day!!!

I do draw inspiration from this site and I wish you all the best in your journeys.
Nick

That was my situation, too, for several years, though eventually my liver became involved. Good news about the LN mets is that from the few of us on the board with LN-only mets, it seems to be an indolent path for the cancer to take. Everyone I can think of got some good symptom-free years and periods of chemo breaks. You might talk to your onc about taking a chemo vacation if the side effects are getting tough.

If you do a search on the term "olymphian" here on the site, you will find posts from others like us. Be forewarned, though, most of those members have passed on.

Feel free to PM me if I can be of help.

The biggest risk with any LN involvement is it a prime way to spread to other organs. Though it sounds like you are keeping them in check.

Nick there are a lot of new treatments. If you are doing chemo I high suggest looking into ADAPT which is basically adding Celebrex to the chemo. It has shown some positive early results and is now going through trials. If anything it could buy yourself some serious time. The Celebrex seems to make the chemo a lot more affective.
I definitely would be taking at least Celebrex, if you don't have a contraindication for that (like heart problems, or tendency to strokes), during the next year. It's usually prescribed for arthritis and joint pain, so if you insist you have that, maybe...
This is old but, if you have the chance, hear this interview to Lin http://www.patientpower.info/audio/meta ... 0/player/0 (or read the transcript: http://cdn.patientpower.info/p2docs/tra ... 091008.pdf ), if you have the chance

Don't take it if your platelets are low. The prescribing Dr should be aware if they are low but you need to watch as well.

@nick49

Sorry if you already gave this information. But about many nodes were positive? 10, 50, 100+?

Nick,
I have had multiple lymph nodes involvement and much chemo but I have had a2 year remission and a couple of 1 year remission. Though I still have involvement at this point the cancer is very slow growing at this point and I have been of chemo for 11 months. I was told initially that I would be on chemo with only short breaks but after 2 clear scans I told my first of that I was staying off chemo until something showed up. That was the beginning of my 2 year remission and finding a new oncologist.
I consider myself incredibility blessed to have close to six years since diagnosis.
Pm me if you have more questions.
Pollo 65

My dad had 1 met to node and still they want to do chemo first and no radiation etc yet

Tina x

At what point does a positive LN become a met?

Thanks to all your responses!
I'm not 100 percent sure of my number of affected lymph nodes, all it know is that they are in my neck, chest, groin, armpits, stomach...most were the size of a quarter...and I didn't even feel them!
At the moment they all shrunk....I'm trying to get through two to three more cycles, then the dreaded scan...and hopefully a chemo break!
Thinking positive!
Good luck to all on here.
Nick