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Chemo/rad- my experience and advice

Bee bee
Posts: 27
Joined: Jul 2013

I recently finished chemo & radiation for stage IIIB rectal cancer. The forum has been incredibly helpful for me so I’d like to share my experience and what I learned in hopes it may help someone, particularly the newly diagnosed.  I love to do research so bear with me if this is lengthy but I know there are others like me who may find this info useful or interesting.

I learned that for me, while it is good to be hopeful and optimistic about treatment side effects and prognosis, I also need to be extremely pragmatic and realistic. I had optimistically hoped that I would breeze through radiation as my dad did and others have.  I feel I would have been better off had I anticipated more of the side effects. When I say anticipate, I don’t mean worry needlessly. I am a true believer that stress and worrying is extremely harmful and useless.  I need to be prepared for worst-case scenarios so I can be mentally and emotionally prepared to fight with everything I have.  I realized I would rather think, “Gee, that wasn’t as bad as I thought it would be, rather than OMG that was so much worse than I ever imagined.”

When I first introduced myself, I wrote about my dad’s lost battle with metastatic prostate cancer. He passed away about one month before I was diagnosed with cancer. I believe there are no do-overs with cancer.  I need to do everything I can to not only beat this, but as importantly, to have an excellent quality of life.  

Now that I have finished chemorad, I have about 2 months until surgery. I plan on trying supplemental therapies in the meantime, particularly some of what Tanstaafl has written about (cimetidine), TCM (I looked at your blog, John23) and other alternatives to boost my immune system and keep the cancer at bay until surgery. My dad actually did immunotherapy for his prostate cancer (provenge), so I am a believer in this too and will be exploring other alternatives after surgery before deciding if FOLFOX really is for me.  

Details follow on my experience with chemorad.

Chemo: Xeloda oral pill (Capecitabine) vs 5-FU IV infusion (Fluorouracil)

I took Xeloda orally (7 days/week during radiation), but only because I did my own research and insisted to my med onc that it was what I wanted. He originally only offered the 5-FU to me and tried to scare me with increased possibility of permanent side effects from Xeloda for hand foot (h/f) syndrome and neuropathy but I decided that was a chance I was willing to take based on input from this forum and others. I am very happy with my choice as I had none of those side effects. I only had mild intermittent headaches, nausea and stomaches.  I learned:

1)      The efficacy of Xeloda or 5-FU is the same; many studies have shown this. My father’s onc confirmed (he’s a family friend I also consulted with to make my decision) and my med onc grudgingly admitted it too. Any doc who tells you otherwise may not have read the latest studies or is biased. Why?

2)     For docs in the U.S., there may be a financial incentive for 5-FU. They can charge for administering 5-FU whereas for Xeloda, the $ goes to the pharmacy & drug company. My own research showed that this can be a sensitive topic in the U.S.  and my dad’s onc confided the same to me speaking as a friend, not as a doc.

3)     While studies indicate there may be a higher chance of h/f and neuropathy, there is speculation this may be related to folic acid-enriched foods in the U.S. that may increase toxicity. So, I just avoided those foods while on Xeloda. I also religiously used Udderly Smooth cream. Great stuff.

4)     IMO, the convenience of taking pills in the comfort and leisure of my home cannot be underestimated or overvalued. With the 5-FU, I was going to have to have surgery to install a port (delaying treatment I was eager to start), weekly office visits for infusions, & carry a chemo fanny pack for consecutive days that could be a nuisance when showering or sleeping. My dad’s onc said his patients’ experiences confirmed all this. Also not to be underestimated is the psychological benefit of not having additional reminders that I was battling cancer. Popping the pills was just so easy.

5)      I asked my dad’s onc point blank what would he choose if he was the patient. His answer was a no brainer- Xeloda.

6)      I think the only reason a patient may choose 5-FU over Xeloda is if the pill is too expensive, depending on your insurance or where you live. However, Genentech has a co-pay assistance program that covers some out-of-pocket costs up to an annual maximum. I signed up for the card over the internet. It was quick and easy and my co-pay will only be $20 for each scrip. Be sure to sign up before you fill your scrip.  

7)      Most of all, you shouldn’t always just do what your doc tells you. Many of you already know this. You must be your own best advocate. Your life, and your overall health, is on the line.   

 

Radiation (28 rad, 5-days a week)

I was so focused on my chemo “dilemma” and what my med onc scared me about, that the radiation side effects really snuck up and did a number on me. My skin is literally black down there and I am a fair-skinned woman. I suffered radiation burns, bleeding, lesions, sores, peeling, painful urination, bowel movements that felt like crapping barbed wire, unpredictable constipation alternating with diarrhea, “accidents” where even an extra set of clothes wasn’t enough. It was demoralizing. I was on a liquid diet for a bit as I was so afraid to go to the bathroom. I lost 12 pounds. I am a petite woman so this was a lot for me.  

 

I used pure aloe vera, aquaphor, calazime & lidocaine for the radiation burns. I don’t know that any of it significantly helped me but that’s what I used for whatever it’s worth. I would have tried others but the side effects started at the end of my 3rd week of radiation and I was depressed at the time so I didn’t have the energy to buy other things midway through. However, my research revealed ointments that may help others (none of these were suggested by my rad onc or nurses so it just goes to show how more helpful our own fellow cancer fighters can be). These include: RX- miaderm, biafine, silver sulfadiazine; non RX- domeboro soaks, desitin, etc.  Had I been more prepared in advance instead of letting the burns sneak up on me, I would have asked for scrips from my doctor earlier or had some of these on hand at the ready.

 

Good luck to all of you newly diagnosed or getting ready for this treatment!

     

 

 

 

Trubrit's picture
Trubrit
Posts: 1292
Joined: Jan 2013

That will be very informative for those who will be travelling the same road. 

I am seven weeks out from my 30 rounds of radiation and 5FU, and can just say one thing, raditation was BRUTAL.

I had posted before all I had my treatment as I had a gut feeling that I was going to have problems, and I got a long, detailed post from -I think it was Craig- who laid it out plain and clear. I was grateful for him doing that, though I was hoping to be one of those who breezed through. No such luck. 

dchisholm5
Posts: 5
Joined: Jan 2012

So far "clean" scans - only problem seems arthritis much worse in hip, top of legs, etc. area.  I fully believe the extreme rad does

the damage.  I feel guilty taking 300 mg of Tramadol daily but otherwise my life would be very grim.  The mornings and getting up

are bad  but that is so with a lot of us 60s and 70s-year-olds.   My families have had long lives and I don't want to spoil the record

so just stay away big "C"!!!

lp1964's picture
lp1964
Posts: 833
Joined: Jun 2013

I'm glad you got through your first phase ok, although those skin burns sound pretty aweful. I finished my radiation and chemo about 5 weeks ago and I have 3 surgeon consultations lined up in the middle of September, because I still haven't decided where I'm gonna have my surgery done. I think it's gonna be mid October. According to the articles I read the tumor shrinks to its smallest size after 8-10 weeks after radiation. This is critical for me, because mine isitting right on the sphincter and if it shrank maybe it would be possible to save my butt. We will have to see what the MRI shows on the 16th. My oncologist is working with me postponing the surgery a little, because the surgeon wanted to do it sooner. So he put me on Folfox 3 times that I just finished. I took the pump the first two times but for the third time I went back to Xeloda. I'll take this for ten more days and then nothing till surgery. 

I think if I found a reasonable assuring surgeon who could save my sphincter I would go with that, but if the risk of recurrence or incontinence is too high, I'll just go with the full resection.

Did you talk to your surgeon about any possible options?

Laz

Bee bee
Posts: 27
Joined: Jul 2013

Trubrit, you and others did tell me about the radiation effects and I read some of your previous posts so I was forewarned, but I had hoped for the best and it just wasn't meant to be. I'm starting to heal now so except for permanent side effects, it will be just a bad memory soon.

Laz, I read the same about radiation continuing to shrink the tumor for weeks afterwards. I will be getting a CT scan in about 4 weeks and aiming for surgery at the end of Oct. I did meet with my surgeon agaiin recently. He said it really depends on my response to the chemoradiation so I won't know more until after the CT scan. But I do feel that my tumor has shrunk, at least a little. 

Although I was initially upset at the possibility of the colostomy bag, I've really gotten over it. I have 5 lymph nodes involved so I am much more concerned now about spread, recurrence & survival. Of course you need an excellent surgeon but I also think the bottom line is that you need to feel that you trust your surgeon and not that he'll tell you what he thinks you want to hear just so you will do the surgery with him. For me, it is also important to have a good surgeon not just for the surgery, but also the follow-up and if you have complications. 

Coppercent
Posts: 142
Joined: Jan 2012

My chemo/rad experience went really well but I believe that is because I had a great medical team. My oncologist sat down with me and explained the pros and cons for the options for chemo. He then directed me to the medical journals where I could do my own research. At the next visit I asked his choice and he said Xeloda which I was glad because that is what I had chosen as well.  My radiologist gave me a list of proactive things to prevent issues. I am pretty type A so I did them all.  But I was slack on the lemon juice toward the end and when the burning started I jumped in full force with the lemon juice and the burning stopped.  Except for the inconvenience of stopping by for radiation every day after work I had no issues. I met with surgeons the same week I met with my oncologist for the first time.   I wanted to make sure I was on my surgeons schedule ahead of time. I didn't want to prolong my surgery because I was waiting on a slot. I had my surgery date set a few weeks into my chemo/rad. 

Lori314
Posts: 1
Joined: Sep 2013

I'm in my first week of chem/rad. Tell me about the lemon juice, please.

Coppercent
Posts: 142
Joined: Jan 2012

The lemon juice keeps you from burning when you urinate. Something about acid, etc. My rad onc told me to drink fresh lemonade every day. I don't like the sweetness of lemonade so I would buy bags of lemons and squeeze the juice in my water bottle. I drank lemon water everyday and I didn't have any burning when I urinated. Toward the end when I got lazy and didn't do the juice it started burning. Jumped right back in with the juice and it stopped. I know a few people who had the burning issue and they did the lemonade and it stopped. You can use meds to help but I don't do meds so I always try to find alternatives. I also drank cranberry juice some of the time. Can't recall the purpose of that but he told me to drink it so I did.  

Gavin63
Posts: 98
Joined: Aug 2013

Hello Friend,

I started my Chemo (Xeloda)/Rad 6 days ago and taking the 2 days off Smile after 5 days of rad. By going through most of the posts I can see that the side effects of Radiation starts to show up after 3 weeks of treatment fractions. 

Since you had gone through the rad without much of an issue after following all what your radiologist had asked you to do, I am very keen to know the contents of list of things your Radiologist gave you to prevent issues arising from Radiation. Also how often & how much of lemon juice you had during your treatment ? After reading your post I started to have around 1 litre of lemon juice (extract of 1 whole juicy lemon) a day from the day 1 of my treament.  Would love to have your feedback.

Gavin   

YoVita's picture
YoVita
Posts: 539
Joined: Mar 2010

So much information and suggestions.  My memory of all this is fairly hazy - I did take great notes so I refer to them when I make suggestions about side effects, etc.  Although everyone's experience is different - many will find your suggestions helpful. 

Lovekitties's picture
Lovekitties
Posts: 2886
Joined: Jan 2010

I just wanted to add another perspective regarding the  5-FU versus Xeloda.

In the United States,  insurance companies pay for the 5-FU administered in onc office under the deductible/co-pay portion of the coverage,  while the Xeloda is covered as a prescription where the costs can be considerably more depending on the plan.

So the patient's choice may also be impacted by their own financial resources and their particular insuance plan.

Unfortunately, many of us have to take personal financial circumstances into consideration when determining our treatment plan.

Marie who loves kitties

djohnst
Posts: 5
Joined: Sep 2013

This drug is so expensive that my co-pay was going to be $400 for each 2 weeks of tablets.  However, the pharmacist enrolled me in the program with the company who makes Xeloda.  They took care of all but $50 of my co-pay.

djohnst
Posts: 5
Joined: Sep 2013

This drug is so expensive that my co-pay was going to be $400 for each 2 weeks of tablets.  However, the pharmacist enrolled me in the program with the company who makes Xeloda.  They took care of all but $50 of my co-pay.

Bee bee
Posts: 27
Joined: Jul 2013

And glad you were able to get the pills at a reasonable price.

Bee bee
Posts: 27
Joined: Jul 2013

I agree that cost is a critical factor. That's why I mentioned the copay card - just wanted to spread the news that others before me shared that sometimes there are financial resources or support available. In my case, the xeloda was far cheaper than the IV so that was another good reason for me. But i completely agree that each person's situation is different. 

djohnst
Posts: 5
Joined: Sep 2013

I am on a similar path with Stage II colorectal cancer.  Diagnosed in March 2013,  5 /12 weeks of radiation and chemo (Xeloda).  By week 3 I was very sick from the radiation....so much so...that I am not sure how the Xeloda affected me.  Finally got through the 5 1/2 weeks and rested for 2 months.  On July 19th, I had surgery to remove a section of colon and create a ileostomy so that my colon resection had time to heal.  The pathology showed complete ellimination of the 7cm tumor.  Awesome news!  2 weeks ago I was started back on the Xeloda...14 dyas on and 7 dyas off.  By the end of the off week I began having problems with extreme dehydration and confusion.  Now I am wondering if I should the stop thechemo or continue.

lp1964's picture
lp1964
Posts: 833
Joined: Jun 2013

Obviously you have to talk to your oncologist about your medication. Instead of stopping, you two should address the side effects And the remedies for them. Also the dosage may need to be adjusted for you.

Laz

Bee bee
Posts: 27
Joined: Jul 2013

Great news on the complete response to the initial chemo and radiation.  my tumor is 5cm so I am hoping for good news too.

i agree with Laz that you should discuss with your onc about addressing side effects and decreasing dose. 

djohnst
Posts: 5
Joined: Sep 2013

Thanks for the advice.   The more research I do the closer I am to starting back on the chemo...just to be sure.  We are now thinking the side effects were mostly due to extreme dehydration from the ileostomy. I now go in once a week for a liter of fluids via IV.  Makes all the differnece.  Bee bee...if this is your course of treatment for surgery, be sure to stay on top of the hydration issues.  I was so focused on getting through the surgery that it caught me by surprize.  I am hoping for a great outcome to your surgery as well.  It was the best news ever when my Dr. gave me the pathology report that said my tumor sight had zero viable tumor left.  All the heavy lifting you have done so far is worth every minute!  I am 8 weeks out from surgery and managing the ileo pretty well.  Not as bad as I thought it would be.  Good thing is...compared to the pain you experienced from the RADS...the stoma has no nerve endings and is painless.

tanstaafl's picture
tanstaafl
Posts: 940
Joined: Oct 2010

Keep on reading and researching, Beebee.  Each improvement, carefully integrated, is important.

A generic version of xeloda was approved last month.    For those in Asia, So America and parts of Europe, tegafur-uracil with low dose leucovorin, is nicer and potentially cheaper for low residuals after curative surgery.

People need more knowledgeable medical support for the immune part.  Long term, post surgical cimetidine after the first few weeks probably works best with "non-low" (< 2) CA19-9 and CEA values at/near diagnosis (higher values may roughly type the cancer to match cimetidine need most).   Also I am not sure about interaction during/how near to radiation or oxaliplatin and high dose cimetidine.   The Japanese, who do not use radiation for rectal cancer, their researchers used cimetidine near surgery by at least a few days.   For highly biomarked colon cancer, I'm pretty sure that on the first day of diagnosis, cimetidine is a godsend, as well as long term.  Ditto rectal, if 5FU-LV only, no rads like the Japanese.

PSK, WGP, vit D3+Mk4, modified pectin, IV C are important immune modulators.  Oral Mk4 is a vitamin K2 so some doctors may get excited about that, but my wife went through two surgeries with Mk4.  She never has had an implanted injection port though, since we were able to beef up 5FU orally and IV C.   

 

 

 

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