Any stage IV considered delaying chemo?

[done]

Hi all. I have nodal mets, feel good with very minor symptoms at present. I decided not to go on chemo (onc ordered FOLFOX + Avastin immediately) until after this summer so I could spend time in the mountains. Summer is about over and I am still reluctant to go on chemo. Reasoning: no cure ahead, only palliation, so why not wait until symptoms demand it? Plus, as it stands now, we only have 3 tools (FOLFOX, FOLFIRI, ERBITUX--all plus Avastin) and each will run out of steam at some point. Why let it start running out of steam now while the cancer is not well developed? Onc and palliative care doc are on board with me so far, and understand my unwillingness to give up my good time. I think they understand they might not do chemo until symptoms demanded if they faced this. My question: has anyone else taken a similar course? Has anyone considered delaying chemo but rejected that option? I need your experience. Thank you!

[RixInPhx]

What is the nature of your primary tumor, and surgery for it?

I went about 8 years unaware of my cancer, then went full-bore with Folfox + Avastin because there was no choice.
But if it had been discovered say 3 years prior, I could have gone that time without any chemo or complicaions.

I think the big risk of not doing chemo is that OTHER mets (lung, liver) are already in the works and chemo would prevent them getting too large for surgery or chemo.

If you decide on a no-chemo-for-now strategy, make sure you get frequent testing/scanning, and that the insurance company is on-board.

What about a shortened or low-strength regimen of Folfox (or Folfiri) as 'mop-up/ semi-preventative' that still allows great QOL?

Good luck with this tough decision.
-Rick

[done]

Hi Rix. Primary was RCa at rectosigmoidal junction. Resected in 2008. Had para-aortic lymph node mets in 2010, dissected. Did full chemo and radiation regimens both times. Now have inoperable lymph node mets in two places. This will limit surgical options no matter what other mets show up. My CEA has been very sensitive so far, and we have been checking it monthly during my summer off. I will have a petscan next week to see what has happened in the three months. As you can see, we have been keeping a close eye on it. I appreciate your saying you could have gone, say, 3 years without chemo in your history. I guess I don't see how chemo would give added benefit by doing it sooner than later, but I'm sure there are folks here that have worked these questions and have far more info than me. Thanks in advance to all who can share knowledge about the role of chemo at stage IV.

[RixInPhx]

If you have just 2 nodes, perhaps chemo-for-life consisting of a Xeloda pill morning and evening would keep them at bay for years, or decadess.

[jdepp]

Plus, as it stands now, we only have 3 tools (FOLFOX, FOLFIRI, ERBITUX--all plus Avastin) and each will run out of steam at some point. Why let it start running out of steam now while the cancer is not well developed?

A couple of things to think about. First, quantitatively, your tumor burden is low right now and it is easier to 'keep a low tumor burden low' than to bring down a high one. Second, if you leave your tumor untreated you also run the risk of allowing new mutations to pile up. If the tumor gets larger and more variegated at the same time you will be faced with a difficult animal -- you'll be asking your chemo to kill a lot of cells.

I concur with Rick -- a little bit of chemo now might go a long way. Lots of people, including me, have done varying amounts of xeloda (with or without avastin) for quite a long time with few side effects. I'd say give it a whirl - maybe those nodes will clear up & you'll sail smoothly for a long time.

Obviously just my 2 cents, YMMV, etc.

[rp1954]

Some people have delayed chemo due to other conditions, like post op complications, but this is not recommended and many had problems. Although we delayed chemo probably longer than expected at initial diagnosis, say 1-2 months extra because of various delays, heavy integrative use of inhibitors was made.

Some of the alternative groups use inhibitor treatments proposed for commonly occurring tissue biomarkers like COX2 (celecoxib and other natural or generic COX2 inhibitors) and CA19-9 (cimetidine) along with targeted supplements. Some people use maintenance regimes that use lower low doses like 1000-2000 mg of Xeloda daily. Laurettas' doctor Lin uses the COX2 inhibitor Celebrex with Xeloda in a trial after substantial prior successes, other doctors have been using various COX2 inhibitors for over a dozen years.

The real question may be "what [maintenance] formulation might stop or slow the nodes the most at different degrees of growth and spread, the most tolerably without as many side effects."

[SkiFletch]

How bad was folfiri for you? I assume it sucked pretty hard, else we probably wouldn't be having this discussion. I would tend to agree with folks suggesting to TRY a low dose xeloda. Remember, there are no RULES here. You can try and tweak things however you want.

[done]

Thanks for your replies. I will speak to my onc about lower doses, as several have suggested. As to how bad folfiri was for me... Well, it was chemo. I soldiered through both folfox and folfiri pretty well. But I do have to work, I don't have a SO to help out at home, and I like to stay active outdoors. This is hard, because I know what's coming down the road, I just haven't figured out how to balance the treatment benefits and their serious repercussions. It wasn't a hard decision the previous times because there was a chance for a cure. That's out the window now.

One thing my onc told me, by way of encouragement, is that it is being found that no chemo in between the "big" runs of chemo works as well as maintenance chemo in between. Anyone have knowledge or experience with that?

[BrownBagger]

What jdepp said about tumor load. You want to keep it as low as possible. With many types of mets, such as those in the lung, by the time you get "symptoms," it's way too late to save your butt.

IMO, you should be approaching chemo as an opportunity for a cure, however likely or unlikely you think that may be. So what's the hold-up?

[Kathryn in MN]

I don't tolerate chemo well at all, but if I had KNOWN metastasis that can be seen on a scan, I'd do chemo. I always have.

Take my current situation as a possibility...

My original progression - I had no symptoms - I was fine other than still trying to get over the side effects of FOLFOX (only off for 3 months when we found progression). My CEA was elevated. A re-check showed more climb. A PET showed multiple node mets, and biopsy confirmed they were CRC mets.

I had multiple distant node mets. I did FOLFIRI + Avastin for 14 months till I just couldn't take it anymore. The chemo knocked out my periaortic nodes that kept me from other options (no radiologist or surgeon would touch 2 of my mets due to their location). Chemo kept me stable - it got rid of some mets, and kept others from growing - shrinking most of them. I did daily radiation to knock out the remaining multiple nodes in two separate areas last fall.

No treatment since last December. CEA slightly elevated, but not taking off. Scan the end of January clear. Scan in March clear. Complaints since my April oncology appointment, but dismissed as not possibly due to cancer since I just had a clear scan and it wouldn't make sense to have shoulder pain and pain in my upper abdomen from cancer - the shoulder was unrelated, and the abdomen was from the radiation, and the fatigue was just because I won't ever be like I was pre-cancer....

CEA up just a bit in June - still having the same complaints, but - can't be cancer.

My complaints have gotten worse in the last 6 weeks, but couldn't possibly be cancer - so no rush to do anything.
CEA up a little more last week, so that meant time to scan again. I insisted on a PET. I am glad I did, or I'm not sure they would have found that my shoulder complaint was legit- I have a met right in my shoulder.

I do have a LOT of spread. It can happen very quickly and get out of control. Mine has. Hindsight again, but I should have demanded a scan again in April or June - a PET rather than a CT due to my history. I have multiple bone mets - spine, clavical and shoulder. I have multiple node mets all over different areas of my abdomen and chest.

You might feel fine, but while you are feeling fine, the tumor load you have now can seed other tumors. You say you can't not work, but if the cancer takes off, you might not have a choice but to stop work. If you can find a way to keep it in check, you can delay that. I've done treatment of some sort anytime I KNOW of cancer larger enough to see and treat in my body. Unfortunately we didn't stay on top of it enough because of my freak situation...

Everyone has to make the choice that works for them and quality of life vs quantity and more considerations - but don't kid yourself into thinking cancer can't be spreading if you feel fine.

[RixInPhx]

There's no 'cure' for diabetes, either, but millions are on 'chemo-for-life' with pills and/or insulin.
Is this palliative care with no hope off cure? Yes, since most would eventually die of complications to othe rorgans IF they stopped the diabetes meds.

I suggest you stop fixating on "it won't make any difference in the long run since I will never be NED."
You can still hike the Grand Canyon in a few years if you maintain decent body strength, even if you still have these nasty mets.

I have a death sentence; you do NOT, so get over it.

Peace and tough love,
-Rick

[done]

I am appalled by a couple of the responses. "I have a death sentence; you do NOT, so get over it.". Really? My onc says there is no cure for me, and this is an optimistic man. I have fought a very hard fight for four years, each bit of news worse than the last. How DARE you?! Oh, I guess mine just can't be as bad as yours. Not sure why, but you clearly think so.

"Don't kid yourself into thinking cancer can't be spreading if you feel fine." Did I really come off as that stupid?

So sad to find this. I won't be back.

[BrownBagger]

I am appalled by a couple of the responses. "I have a death sentence; you do NOT, so get over it.". Really? My onc says there is no cure for me, and this is an optimistic man. I have fought a very hard fight for four years, each bit of news worse than the last. How DARE you?! Oh, I guess mine just can't be as bad as yours. Not sure why, but you clearly think so.

"Don't kid yourself into thinking cancer can't be spreading if you feel fine." Did I really come off as that stupid?

So sad to find this. I won't be back.

If you spent the summer in the mountains and you're not feeling any symptoms, then you're a lot better off than Rick.

Look, you ask a question in a public forum, and you get answers. Maybe they're not all what you want to hear, but I have to say that your position is likely to evoke some interesting responses, so I don't know why you're offended. You're basically saying, "I want to put off chemo for as long as possible because I don't feel like dealing with it. Somebody want to validate that?" OK. That sounds like a bad idea to some of us. We're not shy about explaining why.

[Suze]

For me, as long as there was a chance of a cure, I was willing to go all out, chemo, surgery, SBRT, etc. Once I knew I was incurable, it became a matter of quality versus quanity. I ran out of chemo options in April, and Kaiser had no suitable trials for me. I had a long talk with a trial oncologist at a large cancer center here in Portland, and he said that as long as I was feeling good, there was no rush to resume chemo. I am feeling well and really enjoying the summer. He said that ideally I should resume treatment the day before I started to be symptomatic. I was really surprised at this, but he seemed quite knowledgeable, and I am inclined to believe him. At this point I am looking to start Regorafinib in the fall. You might run this by your doctor. I am curious to hear what s/he says. Best wishes, Susan

[Be.Here.Now]

Bless your heart, Pam for posting what I HOPE are shared feelings and thoughts of others on this board.AND for actually responding to her request for other people's experiences , not so much their opinion of what she should or shouldn't do.
Thank you.

Do I feel a firestorm brewing. I would hope that some of you would reread your response....posts and feel a tiny bit of shame? I don't care anymore but I will continue coming back.