T3cN2a, refusing chemotherapy?

[cancerposse]

I, too, have considered refusing chemo, which I'm supposed to start in another 2 wks. I am still gathering info but this board, along with 3 oncologists and my 2 surgeons (stage IVa cancer mets to liver, all resected, with 4/16 nodes removed having cancer), all say do the chemo. This board is helpful in this debate. The difficulty is that all the cancer we could see is now surgically removed but it can still be in my system. I especially like the idea that if the recommended FOLFOX has too many side effects, I could drop the Oxaliplatin. My oncologist also wants me to take Avastin. Has anyone experienced side effects with this drug?

[GrouseMan]

My wife has been on FOLFOX + Avastin for about 6 months and is now on just the Leucovorin, 5-FU and Avastin. She started getting Avastin on her third FolFox treatment, as they wanted to make sure she was healed well from her resection of the primary. They could not remove the tumors from her liver spleen and lung at that time.

Overall, she handled this treatment very well. Next to no nausea, and limited cold sensitivity. Some hand and foot skin cracking, but not a lot of neuropathy. By her 11th treatment, she was just starting to get some in her big toes. Her worse side effect has been fatigue. Her platelets started to get below the levels they like to see them at so treatments 11 and 12, they reduced the Oxaliplatin some. Her CEA has dropped from 110 before the start of chemo to 3.3 recently. She has seen shrinkage in the spleen and liver mets. Lung mets have always been very small and are unchanged. She is now on the same schedule but without the Oxaliplatin her platelets are back to normal, and will continue this for the next 6 months.

So you see, it's not the HORROR story its made out to be. Some people manage FOLFOX relatively easily. When Avastin was added her BP did rise, but hers had always been low to begin with. So they gave her pretty low dose ACE inhibitor to maintain it in the normal range. She hasn't had any headaches, and and only gets occasional nose bleeds that don't Last but a minute or two. Usually when she blows her nose first thing of a morning.

Hope this helps with you anxiety.

GrouseMan

[KWT]

Grouseman, do you know why the xelox standard is eight rounds and the folfox seems like most people do twelve?

[GrouseMan]

Grouseman, do you know why the xelox standard is eight rounds and the folfox seems like most people do twelve?

Kennyt, off hand I don't know. FOLFOX has been around much longer, and this protocol has been modified several times as the data is continually looked at. Xelox is a relative new comer, and I suspect that the initial phase II trials with it in early testing showed more than 8 rounds not having as significantly increased response rate vs side effects. Phase II in smaller test groups is often how they come up with the dosing schedule. It's likely they may change their mind as time goes on. I have also seemed to notice Xelox seems to be preferred over FOLFOX in patients with rectal cancer in combination with radiation, based on comparing people's treatment history shared on these forums.

Another thing about Xeloda is that it forms 5-FU via a metabolism cascade in the liver, so that the 5-FU seems to me would be in greater concentration and available there than systemic, which might be beneficial given that is the primary organ colon cancer spreads to. So perhaps it's more effective in this regard. Unfortunately much of this is just educated guessing on my part. It would likely take me quite a lot of time and energy to find a definitive answer for you. And I no longer have the resources available I once had to search this out. This is probably best answered by your oncologist, if he or she even knows which is likely not IMHO, but you never know.

GrouseMan

[Staci's team]

Grouseman, do you know why the xelox standard is eight rounds and the folfox seems like most people do twelve?

Kennyt, I've learned over the past few years that a lot of the adjuvant (post-surgery) chemo regimens depend on the type of cancer and whether or not the patient has had any chemotherapy or chemoradiation prior to surgery. In my wife's rectal cancer case, her oncologist gave her "credit" for the Xeloda she took as part of her neoadjuvant chemoradiation, so she only did eight rounds of FOLFOX post-surgery, but her oncologist still considers her to have done twelve rounds of chemo. Since colon cancer patients often have surgery first and then move on to chemo, they generally get all twelve rounds.

Of course, this isn't always the case, but it's the best explanation I've heard as to the "eight rounds versus twelve rounds" question.


Chris

[nkoske]

Grouseman, do you know why the xelox standard is eight rounds and the folfox seems like most people do twelve?

My understanding is...

Standard adjuvant chemo is 6 months long (24 weeks). The Folfox cycle is 2 weeks long. Therefore 6 months of Folfox = 12 cycles. Xelox is a 3 week cycle. Therefore 6 months of Xelox is 8 cycles.

For those of us treated on rectal cancer protocols that were treated with Chemo/Rad. It's not uncommon for your Onc to give you credit for the chemo taken while doing radiation. I was given approximately 2 months credit. So only 4 months (16 weeks) of adjuvant Chemo (this is something that the NCCN guidelines for rectal cancers suggests).

The use of a shorter course of adjuvant FOLFOX in rectal cancer (ie, 4 months) is justified when preoperative chemoRT is administered.

Which meant I did 6 cycles (rounded up) of adjuvant Xelox. It would be 8 cycles of Folfox

[Swede]

I just got the results of my last scans. Everything looks good. So it seems my strategy of only four rounds xeloda, no oxaliplatin and no radiation paid off.

No more follow ups. The hospital considers me cured. Only colonoscopies every five years. Now I am almost down to the same cancer risk as the rest of the population.

[ams5796]

Cured? Amazing and congratulations!



Ann

[NZJay]

I just got the results of my last scans. Everything looks good. So it seems my strategy of only four rounds xeloda, no oxaliplatin and no radiation paid off.

No more follow ups. The hospital considers me cured. Only colonoscopies every five years. Now I am almost down to the same cancer risk as the rest of the population.

Congratulations! Is 3 years NED the standard for "cured" where you live?
Here in nz, we only ct scan stage 3 annually until 3 years post resection and then monitor blood for a further 2 years before calling it "cured".

[Swede]

Yes, 3 years NED with MRI abdomen/liver and CT lungs (although I insisted on conventional X-ray due to radiation risk) is considered "cured" in Sweden, stage 3. No more follow-up except colonoscopies every five years.

Consensus here is that after three years you are down to almost base-line level risk for new cancer.

Blood monitoring is not used here as it is considered low specificity (and low sensitivity as well).

Congratulations! Is 3 years NED the standard for "cured" where you live?
Here in nz, we only ct scan stage 3 annually until 3 years post resection and then monitor blood for a further 2 years before calling it "cured".

[etaylor22]

I realize this is an old thread. I'm yT3bN1. I refused extra chemo. Same reason as you. I applaud your decision as being the one for you. Sticking to your guns. I'm trying to do the same. ANy regrets? You will be at your five year mark. I haven't made one year yet. I don't regret refusing...yet. I hope I won't.

[Atoq]

I am in Norway, stage IV with one lung metastasis, I did not refuse adjuvant chemo, but was not offered it either. So it depends on the protocol and there is no consensus on how useful it is.

Claudia

[Sammy2067]

Guys. Xeloda or Capecitbine (oral FU) by itself is very effective and very tolerable. The potential Benefit is worth the risk. The Oxyplatin is the bigger problem. You may or may not be able to deal with it.

I would do the chemo. Xeloda mono therapy is definitely worth the risk. Its a no brainer actually.

Also, add the right diet and exercise. Triple threat is the way to go. Xeloda, Diet, and exercise.

[rp1954]

My wife has always been mCRC. We have always turned down oxi- and iri- (!) but used an oral 5FU drug with celecoxib and/or targeted cimetidine (let's say CA199 over 18 or 22), with IV vitamin C (best for KRAS/BRAF mutants) and select high potency supplements. We did not include celecoxib long term until we felt we could monitor and attenuate the small cardio risks that come with NSAIDS including coxibs but I have to say celecoxib can be a potent anti-CRC molecule.

Based on others' experience and recent papers, I would suggest that you look at several months highest dose Xeloda (capecitabine, the only US oral 5FU prodrug) that you can stand, and perhaps some nicer extras. The recent conventional papers show that most of chemo's survival benefit is achieved with the first several months treatment if your CRC is not the wrong molecular biology or undiagnosed mCRC, often micrometastatic CRC.

I also agree with Sammy.

[horizon]

Everyone has to come to their own decision that's right for them. For me I could not live with the regret if it came back and I hadn't thrown everything that I could at the cancer when I had the chance. I have no regrets about doing Oxi + Xeloda.