In remission or false hope

ron50 said:

hi 8colon8

  When I was diagnosed they decided eventually due to the aggressive nature of my stage 3c tumour that tey would put me on a weekly regime of 5Fu infusions for 48 weeks. I was ned the whole time after my surgery but they administerred the whole 48 week regime. It is was virtually impossible to say if it worked of not ,but I have remained cancer free for 21 years. f i had not gone the distance with the chemo and the cancer came back at least I knew I'd given it my best shot. Best wishes to your wife for a full recovery. Ron.

Ron, Thank you for sharing. Did you have any maintenance treatment after your 48 weeks?  Her oncologist put her on an aggressive regime of Oxaliplatin infusion with 14 days of Xeloda pills with 7 days off and repeat for 9 cycle. Now he wants to put her on the same regime without the Oxaliplatin forever or until her body cannot take it anymore. 

Thanks also for you wishes.

Patrick

Kazenmax said:

Kind of remission

It sounds to me that the chemo did it’s job. It killed the existing cancer. Looks like the onc is removing one drug at a time to see what happens. Maintenance sounds like it’s to keep the cancer from growing if there’s any stray cells. I’ve heard of people being on maintenance drugs for years.

I’m sure it was disappointing to hear that one drug remains. remission is the same as no evidence of disease, whether or not you are still on chemo. I was considered NED after my surgery and went on chemo. They must believe xeloda will keep whatever may be left from growing. If you want more answers, call the onc. They have to understand that sometimes you need more solid answers than “kind of”.

sending love and energy to deal with the future.

k

 

Thanks K.

That is exactly what her oncologist told us, the maintenance is to keep the hidden cancer cell from growing.

Appreciate the love and energy sent this way.

Patrick

beaumontdave said:

It's frustrating, I know, to

It's frustrating, I know, to feel when they're using words like remission and NED, that they act so cautiously, but this stuff is too tenacious to ease off of, when one gets clear. I started writing my rollercoaster ride, but then figured you didn't need all that to hear my point that you both are in a marathon. We all count time from diagnosis and last treatment, some like Ron, in terms of decades. We celebrate good reports and anniversaries regularly, we celebrate cautious hope. Jan's NED analogy is spot on, NED is great but it guarantees nothing. Remission is a nice word but it may only express a pause, no advancement of disease. Do all the things you want to change, diet, exercise, some suppliments, but I'd follow the program as much as she can handle it, to keep any weed seeds from popping up...................................................Dave

Thanks Dave.

From day one, I knew that it's going to be a marathon but the wife is not really sold.  She just want all this to go away.  I am caught in this dilemma of either making decisions for her or letting her decide. When was your turning point in accepting the situation and starts to celebrate small good news? She can't seem to be able to feel the joy for all the good news resulting from her treatment. 

Thanks for letting me rant.

Patrick

Annabelle41415 said:

Mop up Chemo

That is used often even when someone has clear margines, no spread and the surgeon is confident of good results.  Like others said, cells can get loose and spread and they are trying to avoid that so the mop up treatment is good.  I'm here 10 years later and believe that the extra treatment helped me.  Tell your wife not to be disappointed as it's just like an insurance policy that helps clean things up.  Hope she continues to do well.

Kim

Thank you Kim.

Patrick

ron50 said:

No Patrick

After i finished up my chemo I was cut loose apart from cea and ca19 checks every three months , regular scopes and an occassional scan. At seven years my surgeon told me I was cured of THAT cancer but stay vigilant for new primaries. I have followed their advice and still have regular scopes and my cea remains <0.5.   My last scope produced 4 tubular adenomas @ 4-11 mm . None were cancerous just mild displaysia. Ron.

Thank you Ron.  Your situation is encouraging.  We will be seeing her oncologist later today.  Will pray for sound and sensible decision going forward.

Patrick

NewHere said:

If she has tolerated Xeloda so far

 It sucks of course to have cancer and be saddled with the daily drug, but if NED and all clear, and particualry if Xeloda was tolerated well, then really try to focus on the positive as much as possible.  All of us have different stories and treatments, and different thresholds, but compared to what Stage IV is and what may have happened/outcome, it is not a bad place to be.  That is the attitude I even have now despite my situation.  I have not had any major complications from the chemotherapy or surgeries (fistulas, GI bleeds etc), no major infections, and many other things that could have gone wrong.  Of course I do get bummed out now and again, but shaking it off ultimately works better for me.   Otherwise I probably would be in the fetal position in the corner all the time, instead of still doing as much as I can, including exercising a lot.

My cancer stuff - I had 12 rounds of FOLFOX after surgery in 2015, but something in my lung which was suspect at the beginning (was small) then grew.  Had portion of lung removed, then a year later it came back as inoperable for me in spine, lymph nodes and dozens of places in lungs.  I had radiation and now on FOLFORI -FOLFOX was easier for me by far. There is no end date for FOLFORI for me.  It will keep on going until it is clear it is not working.  As of last two scans it looks iffy at best with some things still growing.  But I keep on going to chemo and hoping.  I started exercising a lot after the second recurrance and my cardio has kept me going despite what is going on in my lungs.  Exercise is something that will help overall and can prevent recurrances (I was never truly NED it looks like going back through things).  So exercise is something I would highly recommend if possible in addition to diet.

If there is a intergrative doctor, you may want to speak with them about dietary supplements, such as Turkey Tail, Vitamins, etc.  Some are low risk/rewards that can help.  But make sure to check out that it does not interfere with the Xeolda.

Good thoughts for the Xeloda keeping the cancer away and that your wife is able to deal with the Xeloda just like popping a Flintstone's vitamin once a day 

Thank you for sharing. 

Yes, her body is tolerating Xeloda and it seems to have successess here.  She just can't find that peace in herself after the dx.  We are looking into exercises that can help her gain strength.  She is doing some form of stretching for 45 minutes daily and started walking again last month. She developed blister on her toes from walking after she started chemo, a side effects from the thinning of the feet from Xeloda and neuropathy from Oxaliplatin.  She wouldn't have mind taking Xeloda forever if it wasn't for the gazillion possible side effects that goes with them. And the fear that the oncologist gave when he said that she will be on xeloda till it doesn't work... Thanks for the good thoughts.

Patrick