Things just keep getting worse

At this point in time, it is likely that everything is overwhelming.  I think we have all experienced that.  His health is no different today than it was yesterday, you only have new information to digest.  I can offer very little help, other than to say take it one day at a time.  Try not to overthink what could happen, and to make the best decisions you can with the help of your research and your medical team.  Perhaps you can both have a good meal, a glass of wine and get out for a walk.  Sometimes a little diversion helps. Sorry, I have little to offer other than a sympathetic ear.  Perhaps others with more similar experiences can offer more.

It's terrifying in the beginning, wondering what is loose in your body, what may pop up and when, but you have to see it as a marathon, a long fight that may have more than one go-round, but still can leave your man clear or contained in time. I had 2 of 17 nodes at diagnosis, but after chemo, years later it finally showed in my liver. My onc/surgeon said it was likely there from the begining, and it popped up once more as a spot in the liver, but they got it in resection and here I am, clear for 5 years in Sep., doing well 12 years after they found it. Mine was moderately differentiated as well, and though it spread, it was slow enough for them to get it all. Have faith and know it's not a decided thing, and can be caught in the longer run, even though it seems so bad now. This is a long fight, set your mind to dealing with it as you need to, educate yourself on the choices, procedures, and what facilities you may want to go to, if your current team doesn't seem on top of things. One other thing, I have a form of dystrophy called CMT, that involves the myelin sheath constantly degrading and reforming around the peripherial nerves so I always had some neuropathy going on. the Folfox made it somewhat worse for awhile and I didn't get back to where I was before for 16-18 months, but I did get back, and chemo[besides all the usual hot-cold stuff and fatigue] wasn't that bad. I even worked through it and I'm a contractor. Have some faith and help your man believe it can be caught, there's many who came hear with worse prognoses, and are still here to tell their stories, so keep reading........................................Dave

Best of luck to you both. This board is a Godsend, so feel free to share your thoughts with these incredible people.

wifetojeff69 said:

Thank you, it is hard to

Thank you, it is hard to digest even though we knew it was at least in one lymph node but now to 5 and lymphvascualr that just sounds bad. Unfortunatley my husband has not wanted to do anything since being home from his surgery, he just doesn't want to be around people. It makes it hard for me because I don't really have much of a support group other than by phone, he even has a hard time if I even leave which has been hard.

My count was three, and I am still alive and thriving 2.5 years later.  I recently read an article about the classification of lymph nodes that said about half the evaluators can make a categorization one way or the other, meaning the exact count from one evaluation to another can be very different.

I have sat in the seat of not knowing if I would survive for days, weeks, or years.  It is difficult, and it kind of sounds like your husband is being pulled down by it all.  But for me, when I got up on any certain day, I would tell myself, "I am good for another day," and I would get out there and make the best of it.

For the down times, some on this board have found help in anti-depressents, medical marijuana, and the good old fashioned male medicine, alcohol.  As for me, I tend to like alcohol and exercise. Best of luck in these tough times and please always feel free to come here for a sympathetic ear and sometimes some valuable information.

Make the oncologist aware of the neuropathy. After 5fu and oxyliplatin in 2003, I have constant issues with numb hands and feet, altho I find keeping active helps massively, fingerwork on guitar etc, and exersize. Second time around with recurrence last year, the oncologist would not give me the oxyliplatin, just the 5fu. She was happy to make a judgement based on my condition, and I was happy to accept her advice. She asked me if I ever dropped things or tripped over my feet, and I said no, as I didn't really think I was affected that much. Promptly left her office with my sister, dropped a cup of coffee in the waiting room, and tripped up going down the steps of the hospital. Had a giggling fit with sister, went back and told the doc, and she made her decision based on that.

Best of luck Monday. For the record, I was given 2 years to live in 2003 with D4 colon cancer and metstases in the liver. Still around, recurrence 15 years on a touch annoying , but its not as bad this time, caught it earlier, so should be a walk in the park

sunbeamtim said:

Meant to mention.

ps diagnosed as C3 this time, surgery 15 months ago, finished chemo december, still clear, and neuropathy no worse then before.

All the best.

Tim

Were you diagnosed with the same primary Cancer or something different.  

I think I would clal it allot more than annoying, especially after 15 NED.

Tru