Decision Point - any thoughts or experience welcomed

Sundanceh said:

Hi Tom
Welcome to the board!

Yours is a very interesting case alright. Good news that there is nothing in the liver or lung, that's sure a good sign. I've read on the board too that Oxy can be effective maybe up to 10 treatments and 11 and 12 offer marginal difference, and you can run the risk of the neruopathy becoming permanent the more doses that you take.

For myself, my body had enough on #8 and I finished up with Xeloda and Avasatin.

If you stay on Oxy another round or 2, you can ask your onc about Magnesium Sulfate by IV. This helped me tremendously with the neuropathy and cold sensations, especially in the throat. I could literally drink cold drinks the very night of infusion, where normally it's a 5-7 day wait each cycle.

I've talked to my new onc about it, because I may have to start up again myself. I read on the board where there were some posts that this lessened the effectiveness of the Oxaliplatin. My onc told me there is no real scientific evidence that it hinders the effectiveness of chemo. And believe me, it will definitely improve your quality of life when doing the Oxy.

It's great that your CEA level is dropping - again very encouraging.

If you stay on option #1 - check on the Mag as I said above.

I have no experience yet with irinotecan, it's also called CPT-11 and Camptosar. Those may be my options too, because the Oxy lowered my platelet count permanently and compromised my immunue system permananetly as well...so we may start there and switch. But I've not taken, so don't know personally. I've heard your hair thins and/or falls out...and diahrrea is a common complaint with this drug.

I've done Xeloda as high as 4000 mgs a day and as low as 3000 mgs a day. We tried 14 days on and 7 off but adjusted the dosage over time down to 7 days on and 7 days off.

Toxicity builds up quickly with Xeloda and your feet could begin to crack and split and blister and peel. It can be hard to stand or walk too. What will help is Bag Balm from your pharmacy. It is an udder cream with excellent emollient properties. You slather it all over your feet and put socks on over them to retain the moisture. Do this 3x a day....in the morning, in the evening, and at bedtime. If you start early on it, you may head off problems before they develope...at leaset you would ease it before it got bad. I did not know about it and my feelt got terrible...I always tell people taking Xeloda about this one. It does work.

As far as the Holistic approach...I know what you mean. That takes a great leap of faith and I've talked to a few people who did that and it worked for them. But I don't the extent of their disease and such. I don't discount it, but I decided to go the way of western medicine myself - I took the chemical route.

I'm still going now into my 6th year. So, I don't know, so far so good.

It's a pleasure to meet you...you sound like you are a fighter and a strong man and I'm looking forward to hearing more of what you find out. Please keep me/us posted.

Again, welcome and the best of luck
-Craig

tootsie1 said:

Hi
Tom,

Don't be shy about posting here. Ask away, vent away, whatever you need to do.

*hugs*
Gail

mom_2_3 said:

Friend of ours
Tom,

Our best friend's father was diagnosed about 6 years ago with Stage IV colon cancer. He had no lung or liver involvement but had all his lymph nodes throughout the chest and neck affected. He had one in his neck biopsied to confirm diagnosis. He went through almost a year of FOLFOX and Avastin. They basically disappeared off his scans. He had surgery on the primary and never had those nodes removed. He just had his 5 year NED celebration.

I have no input as to your decision but wanted to share this particular story with you.

All the best,
Amy

emrose said:

folfiri
my husband had to switch from folfox to folfiri after 3 treatments and it has been MUCH MUCH MUCH more tolerable. He still gets nauseous and tired, but its so much more manageable. I don't know how we would have continued otherwise... and now he only has 1 left! When talking with our oncologist he felt like the evidence suggests both are equally effective at fighting this beast. He was stage 3, but wanted to share this experience with you. Good luck!!

kimby said:

Treatments
Tom,

I'm also stage IV with liver and celiac lymph node involvement (nodes between stomach and liver). I've had both Folfox and Folfori and the side effects are significantly different. I did better on Folfori, but as you can see, we are all very different and our bodies tolerate things so differently. There is no way of knowing how your body will react.

Currently I'm having my celiac lymph nodes radiated, as systemic chemo didn't work on them FOR ME. I'm also on systemic chemo for the liver and to prevent further spread. Has anyone spoken to you about treating the nodes? If not, ASK. Most patients need to self-advocate to get treatments that don't fit in "the box". I recently had a doctor (at a conference) that kept reciting stats. He is worried about his statistical outcomes more than his patients, in my opinion. He referred to those of us that were statistical anomalies, including me, as 'outliers'. Yep, that's me. So, I need to know what my treatment options are and ask my doctors about them. I need to push for the next thing. If it buys me time there will be more treatment options come available. Research, ask, and push when necessary. There are no do-overs in this game.


Kimby
Queen of the Outliers