Newly Diagnosed

On 2/28/2007 Gailee wrote:

thanks for your input. what is  oxiplantin?  were you told why more chemo after surgery??

I had chemo and radiation for 6 weeks -before- I had surgery. This was to kill and shrink the tumor for easier removal and to hopefully stop any spread of cancer cells from the rectal area. My surgery went well, with sphincter preservation, and a temp loop ileostomy which is due to be taken down (or reversed) soon so my colon will be in use again.

It has also been recommended for me to have 6 months of chemo after recovering from the ileostomy take down. That woud seem like overkill, but as I understand it, the post-surgical chemo is to attack any remaining cancer cells. Even if the surgical removal of my rectum nearly guarantees I am cancer-free, there is the possibility of micrometastases (very small malignant cells) which cannot be detected by present means.

In other words, post-surgical chemo is generally about preventing recurrence of cancer in the surgical or other areas of the body.

I also note that my preadjuvant chemo was 5-FU via 24/7 infusion pump in a fanny pack. I had very few side effects, vs the usual effects of the bolus (megadose) sort of regimen. And, I've read in several places that the pump infusion is better at 'cleaning' the blood and organs because it's continuous, again, vs megadoses delivered with a week or two in between. The pump was easier on me and supposed to me harder on cancer cells. All good, in my opinion.

Many of us share the same cancer.  I too had a STAGE 3 tumor sitting on my sphinter and had 6 weeks of 5FU in conjunction with radiation.

Following that I was told in Dallas, that I needed a bag.  I went to the Cancer Center at MD Anderson in Houston and had my rectum removed, my sygmoid  and about 6 inches of my colon removed.  Hospitalized for 15 days.  It was a tough time, but do-able.

Following that 6 months of oxyplattin and lukevorin and 5 FU.  My hair did NOT come out and I was never sick from the chemo.  I was tired afterwards, but geez, it was an all-day to-do...who wouldn't be.

The oxyplatin (sp) makes you very sensitive to cold and I had to wear gloves to get anything from the fridge as it was so cold.  For about 10 days after a treatment I could not drink anything cold.  No ice at all....Luke warm drinks are no fun, but beats the alternative.

My last treatment was Feb. 06.  I have now had my iliostomy reversal and I'm getting closer to normal every month.  The reversal was 9 months ago.  Hang in there and keep a positive attitude and tell all your friends to get that colonoscopy EARLY.  No need for anyone to go thru what we have.....Colon/rectal cancer is so preventable.  Let's all save our family/friends from all this.

Best of luck 

I had oral chemo Xeloda (capecitabine) that changes in the body to the equivalent of 5FU.  I took Xeloda twice... both as preadjuvant chemo (with radiation everyday for over 5 weeks before my surgery) as well as adjuvant (after surgery) chemo to prevent recurrence as has been recommended for your husband. 

The advantage of an oral drug is that one doesn't have to suffer the awful side effects that a IV bolus provides when the patient gets a LOT of drug at one time, usually just once a week, NOR do you have to carry about a fanny pack providing 24/7 infusion of 5FU.  I like the idea that taking Xeloda twice a day (lots of pills though and they aren't small) provided almost continuous medication to my body without bombarding it with a huge amount at once... and I had very few side effects this way (the one I did have was diarrhea, but I found ways to control this so I could work).  I worked full time during my treatment and only missed a half day in the six weeks of chemo and radation before my surgery. Working helped me to have a focus every day, and kept me POSITIVE in spirit. 

Good luck to your husband.  I hope he's part way throught his treatment already.  And don't be afraid of chemo after the surgery... as someone else said, it's designed to avoid recurrence.  A certain percentage of individuals have recurrence even after it is believed they are 'cured'... but the problem is that noone can predict who might have a recurrence and who won't have one.  Therefore, the trend is to treat everyone with chemo even after (apparent) successful resection surgery for rectal cancer. It worked for me.  I have been cancer free for nearly 2 years, and here's hoping it continues!

Hi Gailee: I don't know where you live and I certainly won't try to re-direct your chosen course - but being newly diagnosed, as my wife was almost a year ago, I know that you were shocked, horrified, and stunned with your life upside-down in seconds - after hearing the dreaded words. I am, however, going to STRONGLY encourage you to get an immediate 2nd opinion. NOW, before it's too late to change treatment methodology. Your waiting until Feb. to see your oncologist tells me that you are NOT getting what you need!! What we've learned in these past months is that ALL DOCTORS ARE NOT EQUAL!! - and you have nothing to lose - since time is not a factor for you now until Feb.

My wife, Jennifer, being given: "6 months to 5 years maximum" by our original doctor(s), had nothing to lose, either. We heard about and called CTCA (Cancer Treatment Centers of America) and our life changed almost immediately! Really! During the initial phone call, they offer a 2nd opinion (at no cost to you as they deal directly with your ins. co. and take all the $$ consideration away). 2 days later, plane tickets arrive at our door via Fed-Ex and we're gone - to IL where they have a center (1 of 5 in the USA). Needless to say, our prognosis was REVERSED and treatment began IMMEDIATELY after inital tests to verify the original diagnosis - and our life was given back to us - slowly but definitely. As they say, however, TIME is of the utmost importance. EARLY treatment is critical. That's why I think waiting until Feb. for you is absolutely unacceptable - when immediate, world-class treatment is available.

They have everything in one bldg., terriffic food, and never say "no" to a patient. Recreation is a must and, believing in "laughter therapy", they have comedians come in every Friday to entertain. Your are treated like royalty! Off-site accomodations are available at 50% off for both patients and spouses, also. Their doctors are world-class, caring, and available every day to all patients under their care. You stay usually 4-7 days and then they fly you home (or release you) for 2-3 weeks so that your normal life is as uninterrupted as possible while being treated. You never receive a bill and are only responsible for your ins. deductible amount. While at home, your assigned, oncology nurse calls regularly and you are given phone #'s to call, if needed, day or night. Surgery is a last resort with them - if it can be avoided.

CTCA is amazing! We never knew anything like it existed anywhere! Now, 11 months later, we're alive, near being cancer-free, and resuming normal activities - ready to have a wonderful Xmas and thankful we went to IL - from Arizona - 7 times (all her flights were covered and mine were discounted drastically). We're looking forward to our next visit in January and seeing our wonderful doctor and all the friends (staff and patients) that we've met and become friends with. Oh yes, by the way, they pick you up and deliver you to the airport in a beautiful stretch-limo. Really! 

The # to call, (day or night), 7 days a week is 800-FOR-HELP. You have nothing to lose while you wait (unnecessarily) - and possibly your life to gain. WE LOVE and thank God for CTCA!!

Good luck and God bless you both,

Dave & Jennifer in Arizona