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Pills or Port?

dj1968
Posts: 1
Joined: Dec 2011

So I was told today that I have to recieve chemo I am a stage two never reached my lympnodes but it is just to make sure I get all the cancer cells out of my body. Question my doctor said I either go with the pills or the port. I don't know what to do, with the pills it will be a minimal treatment and the port will def. make sure everything is out of my body. If anyone has been through this please help me out... I don't know what to do. My family all says to do the port just to get it all out of my system I am just so confused please if any infomation let me know.

neons356
Posts: 58
Joined: Dec 2010

Most go with the port,but as a stage 2 you may not need the maximum. I'm not sure though that either method will guarantee everything is out of your body, but if you feel that the port will maximize your chances then why not go with it.

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

Hey there

The 'pills' are Xeloda, which is 5fu chemo in a pill form. It is not harmless and does come up with some side effects....like blistering and peeling of the feet, which can make it hard to stand up or walk or put shoes on. Some bag balm applied to the feet can help keep them moisturized. There could also be some nausea from this drug.

The effects are cumulative and the toxicity will add up quickly.

A port just means you can take chemo drugs intravenously without having an IV put in each time. It sounds like they plan to give you 5fu by IV if you choose this route. Nausea and fatigue can be a factor but the blistering of the feet is not nearly as bad with this way.

But in no way, should either be considered 'getting everything out of your body.' All the port does is allow better introduction of the various chemos into your body with the least amount of infusion pain.

I was a stage IIb once - I'm now a stage 4 and have had cancer on 3 different occasions, but have successfully treated the disease to where it can not be currently seen by scan BUT it does not mean it is out of my body.

The body is systemic and there are miles of vessels in us....that's what makes cancer so hard to treat. I've been at this for 7.5 years with 3 recurrences......51x chemo / 55x radiation / 4-major surgeries.

The issue seems to me to be whether to do the 5fu by pill (Xeloda) or by IV, which is Flouracil. If harder chemo is needed now or down the road, you would be glad that you had a port put in, because the heavy stuff is murder on your veins.

Talk your plan over with your doc and then decide what is best. If you get a port, it has to be medically flushed every 4-6 weeks to prevent clotting, but it makes the administration of chemo so much easier.

I would steer clear of "family doctors." They mean well, but unfortunately do not have the knowledge or experience to counsel you with this decision. The players here will give you their experience - 1st hand experience not theories. From those, you can discuss with your onc to reach the decision that you feel is right for you.

The best of luck!

-Craig

northernlites
Posts: 96
Joined: Jun 2011

Hi Craig,
I didn't realize you started at stage IIb. Does that mean you had lymph node involvement?
I am stage IIa. i chose not to do chemo... i am thinking maybe I should have... I go for my 3 month blood work tommorow...

Tessa

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

Did you do chemo or radiation after your initial diagnosis? Just curious. I was diagnosed with stageII,T3NoMo (stage IIa). I chose to do radiation/chemo. I sometimes question my decision; although,I'm pretty confident that I made the right decision for me.
Karen

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

Yes I did. I did the 5fu pump when I first started. Then we did 25x radiation to both hips and up the tailpipe and up about 1/3 of the way in my back.

The idea was to shrink the tumor enough to allow a rectal resection with no colostomy. We did not have much room for the resect - I believe only a few centimeters to work with that separated me.

I know we always question our decisions. It's hard not to sometimes. At the beginning, it is all so new to us and we don't have the background to understand all the terminology and treatments we're going to be involved with. We want to trust someone so badly and we blindly follow whatever path they lead us to.

And if we don't think we did it right the first time, we ask if we can do it again:)

I've run this scenario through my mind for over 7-years now...and I keep coming back to the same fork in the road TODAY as I did YESTERDAY..."What choice did I really have?"

I don't think even knowing what I do now, if I would change that course of action. The only thing I would do differently would have been to get post-op chemo...it's a coin toss now on whether it would have been successful or not. I might be in exactly the same boat or not.

It's maddening, isn't it?

I think it is always good to question - it's important to be able to see things from as many sides as possible. Back in those days, I did not have all of you in my life with all of your stories, that I've learned so much about.

I'm sure you made the right decision for yourself. Each of us has to walk to the very edge with our decisions on what we think is right. We roll the dice and take our chances - and we learn to live with the outcome of those decisions.

It's never easy - and as I go forward, I don't see it getting any easier...if anything, the decisions being made now are even more paramount than the original ones....and that could be because we are left to deal with the fallout of those original decisions from our early days in the fight.

But, it's not an exact science by any means....and there will be always be forks in the road where we will look back and ponder those decisions - and wonder if they were right.

And the truth is, they were probably right at the time for every one of us.

Take care, Karen

DJ: Sorry one more time...I just wanted to answer these queries.

-Craig

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

If I recall, I don't believe I had lymph node involvement... we didn't do chemo after the rectal surgery...I knew nothing then and when the onc let me off the hook, I happily agreed.

My onc said he would not give me chemo "If I Were His Own Son."

At the time, that was good enough for me. In retrospect, some 7.5 years later, I realize that this was the first major mistake that was made with my case. I've often wondered if doing chemo would have changed the outcome, or made any difference?

I try not too dwell on this too long though - I was new and naive then - I was trusting - and I went along with the decision, because I thought if he didn't think I needed it, then I must not.

So, I understand you 'thinking' about this one. I think it's helpful to remember, fron the standpoint of if it comes down to a crucial journey somewhere down the line of our journeys, we'll look back and pause for reflection - and then try and make the best decision that we can today.

I hope your bloodwork is good:)

DJ, sorry to step into your thread, but I wanted to answer these questions. They might be relevant for other members in the community.

-Craig

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Please keep in mind, that some of us that did Xeloda, experienced NO peeling of skin or nausea, I had virtually no side effects with the pill Xeloda. The other stuff on the other hand, cold problems, jaw chewing pain, muscle spasms was a whole different story. Definitely the pill if you have the choice to try out first.
And as Craig said, the port is simply for easier infusion of the IV chemo instead of being stuck with a needle everytime and having pain from the infusion, so if you decide of the infusion, you really, really want the port.
Winter Marie

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

Hi dj1968,
I'm curious, as to why you believe that the pill (xeloda) is the minimal treatment when compared to that of the port(5fu). Xeloda is the pill form of 5fu (the port)
Karen

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

With a different perspective?

Start by asking your Oncologist how much doing either chemo will reduce the odds of recurrence for YOUR flavor of Stage 2, and to once again go over the likely/unlikely permanent side effects of those chemo's, as well as the chances of each of those effects occurring.

After that, find another oncologist, from a different medical group (maybe an NIH Cancer Center), so there is no conflict of interest, and ask the same questions.

Even then you may choose chemo, but it will be a fully informed choice, made by you, rather than a potentially life altering choice made for you.

Bottom line; This is a perfect case for a second opinion.

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

with the Xeloda? If so, I'd go for the port - oxali is nasty stuff, and can be a problem when infused via a standard IV. I know that my veins became painful from chemo, and I couldn't tolerate an IV. A port gets around that.

I think another advantage to getting chemo through a port, rather than through pills is that there can be no temptation to skip a pill; the chemo is done for you.

They mentioned Xeloda for me as well, but my drs preferred systemic, as they felt there was better control of the dosage of 5FU, as they couldn't be sure how much was actually absorbed from the pills. That being said, I know that other oncologists feel that the pill form is better. Just citing my experience.

Good luck.

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

Hi DJ,
Sorry,the hijacking of your thread was not my intention. I just wanted to make you aware that not all stageII crc survivors do adjuvant chemotherapy. Some of these survivors go on to never have a recurrence and some do. Not all doctors even agree if all stageII survivors should do adjuvant chemotherapy and those that do agree, don't always agree on which stageII survivors should do it. I, personally chose to do the adjuvant chemo. The stats on recurrence don't decrease much with this option, but nevertheless, it's one I chose for myself. It's a personal decision. You shouldn't feel that you have to do anything. Much can be debated so much should be researched. A word of caution,not everything that you read on the internet, especially stats are not up to date. Be diligent in your research. Blake's suggestion of getting a second opinion is something to consider.
Ah,as for your original post, I just re-read it. I think I know exactly what you are asking but instead of assuming, I think it's best that you come back with more specific info on the two different types of treatment that were offered to you, this should get you better responses.
Karen

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

My wife uses a somewhat different set of oral 5FU chemo, click "Tanstaafl" for our story. We almost used Xeloda, UFT overseas appeared to have long term advantages for our multi therapeutic approach. Xeloda is the sole oral chemo for colorectal cancer in the US.

Many CRC patients seem to be vitamin D3 deficient, might look around at previous posts here at CSN. Cimetidine and CA19-9 stains or other related tests for long term use is an important story, see Life Extenison and the seminal paper, Masumoto (2002) for biomarked stage II and III patients that were critical issues.

Here's an independent view of cimetidine (2007), ppt cites 5 studies where survival increased 30-34% extra.

taraHK
Posts: 1961
Joined: Aug 2003

This is an excellent question. And the second question is: pills or port for what? Pills or port are a METHOD for delivering a medication. You need to ask exactly which medication they are thinking of giving you, with each method. And then ask for evidence (scientific studies) -- if you wish -- to support one over the other. For example, there have been some studies which have shown than Xeloda (given by pill) is as effective as 5FU (given by port) -- depending on exact dose, schedule, etc. If your doctors are thinking of giving you FOLFOX (5FU plus oxaliplatin) -- by port -- would they be considering oxalplatin (by port) together with pills (Xeloda).

As others have said, the question of whether or not to have chemo at all for Stage II is another question. Generally speaking (and this is a huge generalization) chemo seems to be not recommended for Stage 1, recommended for Stage III, and debatable for Stage II. Which puts you in a difficult position!

I agree that that may be an excellent time to seek a second opinion.

Good luck to you as you face these difficult decisions

Tara

coloCan
Posts: 1956
Joined: Oct 2009

consider a PICC intead of a port---you don't want your veins used, whatever you decide....steve

Coppercent
Posts: 158
Joined: Jan 2012

I would ask your oncologist for the research studies on the difference of the pills or the port. Yes it is both 5FU but they get into your system differently and react a little different too. Wish I could remember the details but I can't. There is a different success rate.

As for the Xeloda, I did Xeloda with my radiation prior to surgery. Which is one of the standard protocols. I had no side effects with the exception of fatigue and I was able to push through it. Question is was the fatigue from the radiation, Xeloda or both. I just started my adjuvant chemo therapy and it is Folfox through IV and take home pump. Only had one treatment so too early to tell what the side effects will be for this one.

Good Luck and remember your gut instinct is the best!

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