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help please re chemo suggestions ? any relevant clinical references

pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

folfox for rectal or just 5fu ??

whats world best practice ??

My friend , a dad , with kids under 50 just had his t3 rectal tumour out with clear margins.

7 local nodes found positive. no other spread.

his onc recommended 5fu only chemo and suggested 30-60% of being here 5 years.

so I said we are pretty similair cancers and I prefer my odds than yours.

both were adenocarcemo.

so I said suggested a second and third opinion and gave him my onc numbers.

I explained about folfox6 and specifically the joys and benefits of oxali, and have left
him to make a difficult decision.

I am so glad my onc suggested we do oxal even though no trial has been done on rectal cancer only colon cancer. but you know the story, move the cancer up a few centimeters its colon, and down a few and its rectal. my onc describes oxali and folfox as world best practice in treatment of t3 rectal cancer. this is my understanding. I have invited my friend to join the forum and will email a link to this thread for him.

Its just the time pressures after dx and surgery are so tight. I would hate him to miss out on what I have been told offers the best chance of surviving.

he is two weeks post surgery, and has a two week window both he can start chemo.
the standard 4 week wait after surgery.

any thoughts and papers that specifically advise oxali in folfox6 for rectal cancer.

then my friend can read and consider and make the best decision for himself.
sometimes our treatment decisions are based on what our governments fund and old recommendations that can take years to be updated. they don't get updated becuase no one does a trial and that because no money in it. Unfortunately I see that happening here downunder and its tragic that many bowel cancer deaths maybe avoided . maybe thats why we have so few real life support groups for bowel cancer.



Buzzard's picture
Posts: 3073
Joined: Aug 2008

Rectal cancer and colon cancers are both "pain in the azzes" but there is a short distance between the two but major differences in treatment regimens or where they metastasize if in fact they do......
Rectal cancer normally mets to the lung area where colon normally mets to the liver. Not 100% but most of the time.....that is if it does met
Rectal cancer in 2008 I was given the speech about how the survival rates were and they were dependant on whether or not I did the Folfox or not...
Bottom Line....I was Stage 2 thought I was Stage 1 but found that so many of my nodes were fried by radiation that they could not confirm that none were affected so lets go with a Stage 2 DX....
OK, Stage 2 without Folfox...60% living for 5 years with he said that medical fields says another 5% with the Folfox, He says that it is higher than that..more like 15-20 increase of survival rates by doing the chemo...That leaves you at 65-80% depending how you want to believe....
Honestly, If it gave me a 1% higher chance of survival rate then I would have done it...My reasoning, first my family, if I won't do it for myself then I would for them...Secondly, all we want is to survive long enough to be able to find a cure for this, and anything we can do to accomplish this seems minute' to the possibility of dying.
Chemo, especially Folfox chemo, is hard...some do it easier than others but its still hard..its chemical warfare made legal through the use of medicine. During the World War they found that it killed off cancer cells among other things, but it was made useful in the defense of cancer cells and thus marketed and approved...it is highly toxic to the body and has numerable side effects, some of which are neuropathy, muscle fatique, temporary dementia or what we call "chemo brain"...
Is it worth it ? Ask my wife and kids........Im still around....... In hopes of making the right decision for yourself.........buzz

Lori-S's picture
Posts: 1287
Joined: Sep 2010

I can't speak to rectal cancer but, I know a lot of rectal cancer patients who do or did FOLFOX .

I understand the time pressure. I couldn't even get treatment until 5 months after my dx and then they told me that I had missed the best window of opportunity by waiting (not my idea ... just the way things worked out financially). One onc said that he wouldn't even give me chemo because of the length of time since dx. I was fortunate to have found an onc that listened to me and took into account all the other things ... like rising CEA and aggressiveness of the original tumor. As it turns out ... having to wait that 5 months may be the reason I now have additional growths. But, it is what it is.

So, I would tell your friend if possible to get another opinion or 2. But, do watch the time table.

pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

I have got a couple of real life close by rectal cancer buddies. I showed my mate this post and he appreciated your comments and so do I.

I cannot say what I think of his onc, and in my mind the many he represents. Its just so sad that you have to be pushy and demanding to get the best care, and heaps are not like that and they just get second rate care and advice. When you see it happening to someone close to you it makes more of an impact. despite my comments and those of our bowel cancer support group leader my mate still has not made calls for second and third opinions and time is on the march and I hope his little micrometasties are not.



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