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Decision Point - any thoughts or experience welcomed

kuastoi
Posts: 63
Joined: Apr 2009

I have posted here a couple of times - surfed often. A bit shy I suppose. I greatly appreciate this forum and all who contribute, there is so much experience and wisdom available to us all through this board. I now have reached a point where I feel I could use some more input.... don't hold back any thoughts - I am very thick skinned.

I am stage IV, Dx in March started FOLFOX/Avastin in May after R hemi-colectomy. Have tolerated it well for the most part, keeping up my weight, biking 10-12 miles a day, juicing, using the Budwig diet in addition. Some suplements - mostly immune supporters.

Now after #'s 8 and 9 treatments I have begun to have more neuropathy. Decreased the Oxali 20% on #9.

As to my status - I have nodes in my neck, chest and abdomin stable to slightly decreased in size at the mid-way point but not significantly changed. CEA came down from 37 as a high to 12-13 at this point but not dropping much on the last 2 treatments. No surgical options as all my disease is in the lymph nodes, no lung or liver involvement.

I am discussing the following with my Onc and Dana Farber:

1. continue as present, maybe further reduction in Oxali
2. drop the oxali and continue
3. switch to folfiri
4. switch to other - xeloda, erbitux, irinotecan

not sure what to do - how much more or less toxic is folfiri? Some say all the benefit of the Oxali is in the 1st 7-8 treatments - have you heard this? I suspect others here have wrestled with this type of situation before, your experience is appreciated.

To make matters more complicated, my wife is more akin to the diet/holistic approach and hates me being on any chemo - causes some stress, but she is concerned and caring and only trying to help. I am just not able to forgo western medicine at this stage of the game.

My outlook remains positive thanks to all your postings, any thoughts or knocks on the head would be greatly appreciated.

Tom K

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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

kuastoi
Posts: 63
Joined: Apr 2009

Thanks for the incite Craig. I will talk to my Onc about the Mag they stopped doing is while back at this treatment center due to the concern of inhibiting the Oxi though now that seems uncertain., discussed before with her - but the data/research seemed inconclusive. Might give it a try though. Not sure I want to go with the xeloda based on what I have heard from you and other postings, I really need my exercise to keep my head balanced - we'll see. A little afraid to jump to CPT-11 right now cause I am not sure what is left after that if it does not go well, but who can predict?...

Again thanks

TK

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

I think you can quit the platin. Your body gets saturated and you really won't need anymore. My onc wouldn't have any problem finishing me off with camptosar (irinotecan). In fact, I've even heard of some Drs alternating three cycles of each. Who knows. I really think you should check out some clinical trials. I'm planning on enrolling in the fostamatanib trial after my ablations. It was very effective in fighting lymphoma. Check it out.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

As an alternative to Xeloda, checking into doing the 5fu pump...I did it when I first started and I did radiation the whole time so my doc put me on it in the first and last week of the treatment...left it on 7 days 24 hours a day....most people here are doing it for 46 hours now and disconnecting...but my new doc said it was because I was doing radiation was why my regimen was different.

My new onc and I have talked about post op chemo options. And Folfiri is an option if the Folfox bombs out...Folfox hurt me before badly so I don't think I would go too long with that and a switch would have to be made. And instead of Xeloda, he would move me to the 5fu pump too.

So keep the pump in mind...if Xeloda is not the way to go. Xeloda turns into 5fu when it encounters cancer cells in the body....when swallowed it is of a certain compound(s) and when it comes across cancer cells, it metabolizes to 5fu...don't know how, but that's the word.

That's all I can think of right now...keep me in the loop.

-Craig

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Tom,

Could you please educate me on the Budwig Diet. I am always on the lookout for new info on the whole colon cancer curing gig.

For info you may want to try this website.

www.cancerdecisions.com

He does research into all sorts of chemotherapies and complementary medicines.

I'm a fellow juicer! yea!

peace, emily the juice chick

kuastoi
Posts: 63
Joined: Apr 2009

Johanna Budwig was a German scientist (chemist, pharmacist) who specialized in the role of fats in the body. Developed a diet in which she claimed great success in treating chronic illnesses and cancer. Uses slot of Flax oil/seeds. I do not propose any particular diet "expert" has ever cornered the market, but hers made sense. Its is easy to do, is veggie and mixes with juicing approach well and has helped me keep on the weight while on treatment. Overall, very palatable with lots of fruits and veggies.

FYI: check out FlaxSeedOil2 group on Yahoo.com
http://groups.yahoo.com/?ch=web&pub=fp-us&t=fp&sec=link&slk=adaptivetrough

or check out http://www.budwigvideos.com/

If you just search her name you get many other additional hits too.

I feel good on it plus the juicing (with many of your juicing suggestions, thanks)

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Tom,

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

*hugs*
Gail

kuastoi
Posts: 63
Joined: Apr 2009

Amy other thoughts or personal experience to share?

Tom

Faith88
Posts: 55
Joined: Sep 2007

Hi Tom-
your story very similar to my husbands, with right hemicolectormy for Stage 3 CC in lymph nodes only. Why are you stage 4? (i thought that was in other organs like liver or lung?)

He has also suffered and still suffering from neuropathy after finishing all 12 treatments of Folfox. As a wife, supporter, I too am more along the lines of holistic support and treatment although I agreed with his oncologist and to go forward with the chemo, didn't want to be leaving any stoned unturned.

I ask again, why are you considered Stage 4 at this point instead of stage 3? Maybe I didn't get all the info at the time but I understood stage 3 was in the lymph nodes and chemo was recommended treatment including the Oxaliplatin. Neither of us is sorry he took that route but he has been disabled since treatment due to severe neuropathy (going on 2 years now) which doesn't look like it's improving (maybe 5-10%?)

That's my story and wanted to share, and hope that you find the answers to best help you on your road to recovery. This Board is such a mine field and wealth of information and support so take care and God Bless.
Faith 88

mom_2_3
Posts: 964
Joined: Nov 2008

As I understand it, if there is lymph node involvement out of the immediate colon tumor area then it is considered Stage IV.

kuastoi
Posts: 63
Joined: Apr 2009

Since my nodes are in the chest and neck - I am a IV. If it was just the nodes in close proximity to the bowel or in the omentum, I would be a III of some sort.

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

Hello.

My husband was treated with Avastin and Camptosar. He had minimal side effects--diarrhea, nosebleeds, minor loss of hair.

His situation was that he had a major surgery in 2006, was diagnosed with colon cancer stage III (later stage IV) and the original surgeon did not remove all of the primary tumor. My husband had a second surgery a year later and the remainder of the tumor was removed. He had an additional successful surgery with an abdominal wall tumor at he incision site. He is doing very well.

While I can't sort out which side effects came from which drugs, it might interest you that my husband was a perky 88 when he had the chemotherapy. We were pretty terrified at the prospect of chemotherapy but my husband handled the challenges like a trooper.

The worst of our experience was dealing with Anthem/Blue Cross when they refused to cover the considerable cost of Avastin therapy. Fortunately, we had the Public Employees Retirement System on our side (my husband's medical coverage is purchased through that agency) and his bills were eventually paid.

Hatshepsut

mom_2_3
Posts: 964
Joined: Nov 2008

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

kuastoi
Posts: 63
Joined: Apr 2009

Hatshepsut,

I am leaning towards CPT, am glad to hear that it was reasonably well tolerated. Gives me more comfort with the option. May well go there soon, will discuss with my Onc on Monday at time of next Rx. So far the only complaint I have is numbness with the Oxi, no pain - so I am not sure when/if I'll go with the change.

mom_2_3,

Wow, thanks for the story about your friend. It really gives me hope. Wish him well from me. I have been making progress, now I know I must be more patient based on his experience.

Thanks again,

Tom

emrose's picture
emrose
Posts: 137
Joined: Dec 2008

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!!

kuastoi
Posts: 63
Joined: Apr 2009

It is good to hear that FOFIRI has been well tolerable for so many. I hear it does have some more risk for lower white blood cell counts - have most people ended up on neulasta?
Off to TX in the AM, we'll flip the coin then about folfox with reduced Oxi or folfiri...I am still up in the air myself. It sounds as though I won't be finished at #12, but I have got my head around that already.

Tom

emrose's picture
emrose
Posts: 137
Joined: Dec 2008

Yes, since switching to folfiri my husband has had to get Neulasta a few times. He never had that issue with folfox. He usually only needs it every other infusion. He did not get it this time so it just depends. My husband is an otherwise healthy 34 year old, so even if his counts are low as long as they are not TOO low, then our oncologist lets him skip it. He's never had any issue with infections or anything along those lines. It was 6.something this time. (I can't totally remember what normal is) The Neulasta does seem to make the recovery period a little longer and he does deal with the bone pain, but overall - even with the Neulasta - he's had a much better experience than when he was on the folfox along. Let us know what you decide to do!

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Hi Tom K:

I too have stage IV colon cancer, however, I have extensive liver involvement. You sound like you are getting along good, with the biking, etc. I have been through FOLFOX, FOLFIRI and have just stopped Vectibix (it's very similar to Erbitux). Irinotecan (Camptosar) caused me to have a lot of diarrhea for which I took Lomotil and immodium - I also developed C. difficele (a bacterial infection in my gut that contributed to the diarrhea - had to be treated with antibiotics twice - this was last summer and fall (2008). I also lost a good bit of my hair. After I got off this I underwent chemoembolizaton twice in the hospital. We are now looking at a clinical trial somewhere. I also had Avastin along with the firi and may go back on that temporarily. I don't have experience with Xeloda. I wanted to share my experiences with you. You can always try folfiri and see how you tolerate it. Best of luck to you. Keep me/us posted on your future treatment. Roy

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

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

kuastoi
Posts: 63
Joined: Apr 2009

Went with CPT - so now finished 9 of Folfox and switched to FOFIRI, went that way primarily becuse my concern for the progression of neuropthy and the fact that FOLFOX has seemed to knock the CEA back from 37 to 12, but has not gone further. Here's to FOLFIRI and me kicking down further.

Kimby,
right now it seems too many nodes involved, would require a large field of radiation (nearly whole torso). They might consider it in future if only a few localized spots left on PET with low CEA leftover. I am still considering a second opinion in this regard if the FOLFIRI does not kick it enough.. we'll see. Thanks.

Tom

SSmith25
Posts: 11
Joined: Aug 2006

I went almost the full cycle of Oxali. Four years later the neuropathy in my hands has pretty much disappeared, but is still very present in my feet. I figure it is a small price to pay.

bigCrandy
Posts: 75
Joined: Sep 2008

Hey Tom, I've been through both, 6-months folfox, 6-months folfiri plus avastin, then 3-months 5-FU plus avastin. The oxaliplatin was a real booger, I still have neuropathy on bottoms of feet and some on figertips. The mouth thing with the tastebuds and the cold stuff was really bad. The stuff must really work cause it is a hard chemo drug. I went 9 months ned after folfox but it came back in my lymph nodes so I did the folfiri. Irinotecan can cause severe diarrhea but they give you a shot to nip it before giving the irinotecan, I can't remember what it's called but please ask for it cause it works. Other than that, folfiri was a breeze compared to folfox. I would let the onc decide this one. Good Luck and God Bless, Randy p.s. the anti-diarrhea drug is called atropine

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