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Good news -- and differing treatments

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

Haven't posted much lately, but pop in to keep up with everyone when I can. Wanted to share some good news -- I've had 4 scans since dx in February, and all have shown improvement, and CEA has dropped from 44 to 1, and stayed in that range for months. Which is nice for a stage IV, terminal dx. Scan results last week showed the liver mets to only show remnants of the lesions, and my local oncologist described them as "burnt out." He seemed very pleased and somewhat flabbergasted. I also see an oncologist an hour away at an NCI facility and I saw her the same day. She was equally pleased and surprised. I'm on folfiri, irinotecan and vectibix. This is where it diverges -- he (the local guy) suggested putting me on the pump for 5 straight weeks and doing radiation. The NCI onc. disagreed thinking that going oral with xeloda could be the way to go. She's presenting my case to a board next week and I'll see her again with a final recommendation a week after that, so for the time being I'm on the same stuff. At each turn I've sided with the NCI recommendation, but I receive treatment locally, and I'm wondering when the local onc. will tire of me never going with his recommendation. Doesn't seem to be a problem, but human nature is what it is. The NCI joint isn't too bad of a drive, but it's nice to stay in town for treatment. They also want to take me off vectibix, at least for awhile, because my fingers are a cracked up mess and hurt like hell. Any thoughts on these differing treatment ideas, and/or information on xeloda -- good, bad, or otherwise -- is appreciated.

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

that's great! I suppose it's not how your doc meant it, but I'm suddenly envisioning a cancer cell coming home after a hard day's work, kicking off its shoes, getting a drink, then saying "Screw this. I'm exhausted. I quit". If only all of our cancer cells would get burned out in a similar fashion. And making an oncologist "flabbergasted" is a good thing, so congratulations! Ann Alexandria

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

That's funny stuff! Chemo burns me out, so it's nice to return the favor. Makes me wonder if describing tumors as "burnt out" is common. Not common enough, of course, but has anyone heard that? Don't really know what it means long term, but I'll take it for now.

Phil64's picture
Phil64
Posts: 476
Joined: Apr 2012

I love the visualization you painted. :-)

jjaj133's picture
jjaj133
Posts: 857
Joined: Mar 2011

No advice, just a hearty CONGRATULATIONS!
Hugs,
Judy

Sundanceh's picture
Sundanceh
Posts: 4302
Joined: Jun 2009

The difference between Xeloda and 5fu pump efficacy is hard to debate...I've done both and would be hard pressed to tell you which is the way to go for results based action.

The side effects from each could be a difference maker...if you're hands are already gummed up with the Vectibix, then Xeloda could further erode your fingertips...and it's really hard on the feet as well...you would need to start creaming your feet right now before starting Xeloda...

I found both to upset the stomach as well - but neither above the other.

The bigger question to me is the radiation that your local is suggesting - but that your NCI has not indicated. I'd flesh out this area between the two approaches.

Radiation is effective but permanent...whatever it touches, it dies. It has helped me in the past, but it has hurt me too...and left me with life-long ramifications that can never be changed.

On the other hand, it's another good grenade to be able to toss out there as well...and its effective as well.

Good luck with your decision.

-Craig

Heart76
Posts: 26
Joined: Sep 2012

Whatever treatment ends up being what they do, here's hoping it keeps that stuff 'burnt out'!! Cancer needs to give up because we won't!

My hubby is on Xeloda - 3500 mg daily - along with radiation. He takes four 500 mg. tablets after breakfast and three after dinner. He's had 14 days of it so far with no side effects. They do ask him about his hands and feet fairly often, but so far, so good.

Dan, what dose were you on and how long after you started taking it did you begin having the hand and foot issues? J's feet crack in cold weather anyway so we are putting cream on them nightly. We were told not use anything that had any type of alcohol in its ingredients' list, b/c it is 'drying'. Surprised at how many 'moisturizing' creams have alcohol in them! We're using a 'shea foot moisturizing souffle' from Avon.

C

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

You know, I don't know what dose of vectibix I'm on. But that's what my NCI onc is blaming on my cracked skin. Good to hear the hubby does ok on Xeloda, because I think that is probably where I'm headed. But I'm always amazed at what a preliminary thought is, because it always seems to change. I don't care much for the pump for 2 days, I can't imagine carrying the "dark passenger" (any Dexter fans out there?) for 5 weeks. But, as always, I'll do what I have to do.

Craig -- thanks for the info. I think the lasting effects of radiation is why my NCI onc is wanting to hold off for now. I'll know soon what she recommends, but tomorrow I'm back on the regular stuff. Fun journey, isn't it! Dan

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

And I do feel like murdering people on occasion, especially when driving in Seattle traffic. Maybe I can start blaming that on the cancer...

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

Are you watching the current season? I can't believe how many plot lines they have going. Anyway, I call my pump my "dark passenger." Hopefully it's murdering the damn cancer.

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

so probably won't see it for a while. My favorite so far was the one with John Lithgow. Couldn't view the bathtub with the same equanimity ever again.

Heart76
Posts: 26
Joined: Sep 2012

Hmmm! How did I post twice?

C

Heart76
Posts: 26
Joined: Sep 2012

Meant to ask Craig that question, Dan! Sorry, I'm kinda new at this message board stuff.

I know who Dexter is, but haven't seen the show. No cable here in the wilds. LOL

I hadn't ever heard that radiation caused permanent damage. The area of the colon that is being treated in my guy will be removed during surgery.

C

jen2012
Posts: 1208
Joined: Aug 2012

my husband had radiation 13 yrs ago for a stage 1 testicular cancer. Some of the doctors (including a radiology onc) think this rectal cancer could have been caused by the radiation. I'm not sure he would have done radiation if he knew then....it would have been nice to have known the possibility so at the very least he could have been checked earlier - before it got to a stage 4.

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

Sounds familiar... though I have lung not liver... though no real symptoms just know the nodules are there...
Well I was doing the Folfiri(10 treatments) and last 2 treatments have removed the 5FU and this last treatment removed the Vectibix for exactly the same reason.. cracked hands... so I am down to Irenotican... probably will restart vectibix next week as hands have heeled up pretty nicely. my doc says Irenotecan can work alone without the others.. which may be the route I will be taking but I don't really know.. I am not dealing with the hair loss so well lately.. and I really want my hair back..
Unfortunately my CEA never registers so I only really know the degree of cancer I have from a scan or biopsy.. next scan 1st week of November.
well. your news is great and I hope for the same...

YoVita's picture
YoVita
Posts: 545
Joined: Mar 2010

Keep telling yourself: my hair will come back, my hair will come back. And it will :) I found wearing hats easier than a wig.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 455
Joined: May 2012

Great news, and we sure need some positive news now and again. Hope you're feeling good along with the good news. How is the grand baby doing? Love the picture.
Sandy :)

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Great news! Thanks so much for sharing your amazing story.

I took Xeloda while I had daily radiation treatments for 5 weeks a year ago. No real noticable side effects except that I was tired all the time. Not sure if that was Xeloda or radiation. I did have a good experience with radiation (I'm pain free) and no residual side effects that I know of.

Cancer is such an individual experience that what works for one of us, may or may not work for the other. I, like you, receive my chemo locally but travel to a cancer center for primary opinion and review by their tumor board. I love my local onc but I feel the cancer center sees more cases and has a wider base of knowledge to draw upon.

Whatever your decision, I know it will be the right one for you.
Be well,
Ron

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I'm trilled that everything is staying so stable or going away. It's nice that you have several options and treatments. Your onc should be okay since you are doing the treatments there. Pray everything remain cool calm and collected. Jeff

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

Thanks for the comments, and for your personal experience with Xeloda, Jeff. I had my regular infusion today and saw my local onc. He's on board with whatever the NCI onc recommends, which is nice. And they pulled the vectibix today, so hopefuly I can start healing up these cracked fingers soon! Dan

smokeyjoe
Posts: 1428
Joined: Feb 2011

I've been on xeloda for three months now.....get scan results on Friday at onc. appt. so don't know if it's working or not. I absolutely have no hand or foot issues at all, went hiking for miles in a gorge....have been using jet ski a lot, where hand and feet get wet...no issues. The only thing I have is fatigue will hit from time to time...no major tummy issues....the odd time a slight "off" feeling ..... has me worried that I'm not having major side effects wondering if that's an indicator as to efficacy. If this stuff was effective and effective for a long time I have no issues staying on it.....

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

and that chemo did absolutely nothing to my tumors, so I kind of wonder if this is something of an oncological wive's tale. I also wonder why we say "sick as a dog"...most of the dogs I know are relatively healthy. Will be keeping you in my thoughts on Friday, Smokeyjoe. Ann Alexandria

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

I had six months of folfox6 w/ erbitux. It totally kicked my butt, but it also kick the crap out of cancer. I went from nearly 100 spots on the liver with a large tumor in the colon. to about 5 spots in the liver and after surgery... NO tumor in the colon.

had two months off around surgery, and now am in week 4 of Xeloda and have had 2 treatments of Avastin. like others have said... no side effects to these new drugs, yet.

my tignling in the hands and feet is worse than it was, but manageable.
no cracking hands and feet yet, but i lotion regularly... and I'm not a "lotion guy".

but overall... its going well and haven't had any of the listed side effects.

i actually feel better than I have felt in over 4 years.

Heart76
Posts: 26
Joined: Sep 2012

That's awesome, Joe!

Annabelle41415's picture
Annabelle41415
Posts: 4275
Joined: Feb 2009

Sounds like you have gotten some good news and the doctors concur. As far the difference in the doctors and their direction on how they want to proceed you should ask them each the effectivness of why rad/no rad or pump no pump or whatever. Its ultimately going to be your decision but that is going to be a hard one to make. Hope all continues to go well for you and you get the answers you are seeking.

Kim

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

And that grandson is adorable! So glad your results are so good. That's great! As far as the "terminal" thing, we are all terminal. Try to think of yourself having a chronic disease that you just might be able to get rid of or live with. I didn't know that was possible until I came on here and met these people who are beating or living with colon cancer. Great news! So happy for you.

Sandy

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