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In remission or false hope

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

My wife is stage IV colon cancer with 2 suspected metastasize lymph nodes by the aorta.  After 8 chemo cycle with 1 additional cycle thrown in, her 4th Pet scan last Wednesday (in 10 months) finally showed no convincing evidence of FDG-avid malignancy or metastatic disease. She was praying and hoping for this.  Her oncologist said that she is kind of in remission.  Since she was on oxaliplatin infusion with 14 days of xeloda pills, he is taking her off the infusion but keeping her on the xeloda pills regime as her maintenance care. She is really disappointed and devastated.

Any input from others who might be in the similar situation? I know that every one is different but like to know what other maintenance options are out there. We are changing her diet to plant based. I am inclined to encourage her carry on with the current suggestion and work the diet plan for 4 months as we are scheduled for another scan in 4 months as a follow up.  Doesn't remission means no more drugs till the cancer decide to pop up again?  Very confused. 

What does it mean to be NED?  Does it mean that you are still taking some form of cancer drug but test shows not cancer activities, or does it means you are not taking any cancer drugs and yet tested negative for the desiease? 

 

 

 

 

 

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

  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.

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

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

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

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.

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

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

Trubrit's picture
Trubrit
Posts: 5399
Joined: Jan 2013

They do indeed put you on chemo as a 'mop up' just in case there are some cells too small to detect. 

At the end of the day, it is the patients decision wether or not to have the mop up chemo, and it is a hard descision that shuold come after careful thought. Obviously, by reaching out here, you are thinking about this, and that it good. We can all share our stories, thoughts, advice, and you can study up on the computer and ask questions of your wife's Oncologist, and then make the decision.  

I can be of no other help,, becasuse after my liver surgery, my Oncologist decided - with the help from a close friend and Oncolgist - that I would not have mop up chemo.  I am having my blood work done this week, and if all is well, will celebrate FIVE years NED next month. 

I do know that if it were me in your wife's place, I would go for the extra chemo. I think your plan of chemo and healthy diet for four months sounds great. Of course, four extra months of chemo sounds more like four years to your wife. 

NED - No Evidence of Disease means just that. Cancer cells cannot be detected, but they may still be there, just too small to detect (I know all about the Cancer cells that are in every person, but I'm talking about a Cacner patients cells).

I wish you both all the luck in the world. 

Tru

 

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

Thank you Tru,

You hit it on the nail.  The extra "chemo" sounds exactly like a life sentence... her anxiety level went up.  After her surgery to remove the tumor in her colon, the chemo we thought was the "mop up" but now that "mop up" is going to drag on.  Sigh.

Yes, we are praying for the diet and chemo approach works.

Patrick

Kazenmax's picture
Kazenmax
Posts: 447
Joined: Feb 2016

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

 

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I have nothing to add to the great advice you've alredy been given. I chose to do mop up chemo because I was scared that if I didn't and it came back I'd be angry with myself. I did it and it did come back but at least I knew I'd given it my best shot.

NED is like trying to get rid of dandelions in your yard, as they say. You spray and pull and do all the right things but they might come back anyway. If you keep doing the right things eventually they may very well be gone. But you'll always have to be vigilant. It looks like the cancer is gone but we don't know for sure. It's usually best to keep doing things to make the odds of it coming back lower. 

She should be celebrating the good news! 

Jan

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

Thanks Jan.

Your dandelions analogy is spot on, but the wife is struggling in absorbing the good news with a black cloud hanging over her.  Guess I am not doing a good job helping her see the bright side.

Patrick

beaumontdave's picture
beaumontdave
Posts: 1120
Joined: Aug 2013

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

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

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

 

beaumontdave's picture
beaumontdave
Posts: 1120
Joined: Aug 2013

It took awhile to acclimate to this new reality. I too wanted to ignore it as much as possible, figuring surgery got it out, chemo's making sure, and I won't have to think about it much longer. When my CEA numbers started rising, they started biopsying things in my liver[1st 2 were negative] I began to realize this was far from over. I found this blog, and adopted the attitude that things were changed, even if I survived this stuff. Accepting the "long haul" view of things. meant celebrating the good tests, and healing up well from surgeries, taking some joy from milestones and anniversaries, and being a little less devastated by the setbacks. My wife being diagnosed with her brain tumor about the time of my rising numbers, taught us about living in the moment, enjoying the day, because looking down the road was a useless exercise in terrifying ourselves. Life really is about the little things and we squeezed all we could out of sunsets in the front yard, meals out, time with the kids and family, and holding on to each other. I'm 11 1/2 years out from diagnosis, 4 1/2 years clear since my last liver resection, with plenty of reasons to be optimistic. But I'll also always know those two measures of time for the rest of my days, it's just a thing that comes with the new reality. I hope your wife achieves both good outcomes and a degree of peace with this path your both now on..................................................Dave

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

Thank you Dave. 

I guess everyone, including my wife, will have their turning point somewhere along this journey.  She just can't find that peace in her heart at the moment and I need to remind myself not to rush it. 

Patrick

Butt's picture
Butt
Posts: 355
Joined: May 2018

I believe there is a difference between Maintance chemo and a mop up chemo. European protocol is to take a person off any chemo if the person enters remission and if things show up do chemo again. American one is to do Maintance chemo. It is usually FU5 and avastin every 2 weeks. Some use Xeloda pills. Butt.

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

Thanks  for sharing Butt.

Patrick

 

Annabelle41415's picture
Annabelle41415
Posts: 6692
Joined: Feb 2009

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

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

Thank you Kim.

Patrick

NewHere's picture
NewHere
Posts: 1296
Joined: Feb 2015

 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 Laughing

8colon8's picture
8colon8
Posts: 41
Joined: Jan 2019

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...Frown Thanks for the good thoughts.

Patrick

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