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Postby delue » Tue Aug 31, 2010 3:39 pm

My husband will be taking Xeloda pills -- 4 pills twice a day (8 per day) for two weeks then one week off, etc., etc. He wrote us the prescription for 224 pills which will cover the first round (2 weeks on 1 week off) and the second round (same). Now I know that 212 pills (8 pills a day) is a lot; however, the cost of these pills exceeds $7,000. We have insurance so our co-pay is almost $800 (gee, lucky us). Is this normal ????????? Is it because of the amount of pills he'll be taking?????? Even the onc was shocked.
Hub 58 CC-7/09
Genetic Liver cond. excludes certain chemos
Colon/Liver Resection - chemo
PET 1/10 - mets-liver, abdomen
Folfiri, Avastin, Oxi 1/10
CT 3/10-spread
Bile Duct Stent 8/10
CT 8/10-spread
Xeloda pills
Out of options
Peace at Last 10/5/2010

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Postby kbrown2b » Tue Aug 31, 2010 4:06 pm

I take 4 in the morning and 4 at night.. i pay $40 copay /per round... yours sounds really really expensive... ugh .... whyy do we have to worry about financial shit during all of this cancer stuff.??? Good luck..
Kelley 38
mommy to Dalton(14),Raegan (11),and Ella (5)
stage IIIC 5/26/10
Xelox 6/30
ovarian mass 12/16
moved to Stage III.5
Folfiri /erb 1/25/11
hyster./abcess /temp illeo 9/11
reversal 11/11
back in abdomen Folfox and Avastin 8/12

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Postby betsydoglover » Tue Aug 31, 2010 4:58 pm

My copay for 112 pills (1 cycle) was only $25 - the insurance company paid about $2300. So the number of pills you are getting would have cost about $5000 through my insurance co. It's sad - it all depends upon your insurance and what they have negotiated.

Retail price for 200 pills at is $6000+.

diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 11/17

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Postby BrownBagger » Tue Aug 31, 2010 5:25 pm

I hate to pile on, but my copay was $35 for 98 pills this time around. You might ask your onc about getting part or all of your prescription for free through the mfg., Roche. I know they do that for people who don't have insurance & can't afford the pills in some cases, but since you do and your copay is relatively modest, it's probably not happening. Not that I think $850 is a modest amount, by any means, but I bet they think it is.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Postby weisssoccermom » Tue Aug 31, 2010 5:30 pm

Yep unfortunately Xeloda is expensive. Did you fill the entire Rx? If not, contact the onc's office ASAP and have him/her get in touch with Roche. They have programs for people who have no insurance OR who have high deductibles. They can most likely help - it certainly is worth the phone call. Also, go to their website ... -help.aspx

There are other options here as well but click on the link pertaining to high copays, etc.

For me, my primary insurance did have a 20% copay (20% of the negotiated rate) which was rather pricey but my secondary picked up the rest so I had no out of pocket.

Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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Postby NMS » Tue Aug 31, 2010 6:00 pm

It's a monopoly, built on exclusion, partly maintained by the patent system, partly maintained by the FDA registration system. Not based on cost or performance.

Most other industrialized countries offer other oral 5-FU chemos, usually ones with tegafur (usually UFT) or low dose, oral 5-FU tablets (really cheap but rough). Not the US. Our FDA has for some hypothetically legalistic reasons NOT accepted tegafur (much similar prodrug to Xeldoa) or UFT, the next generation combo with uracil.

We considered metronomic Xeloda + cimetidine, but I am more satisfied with the accumulated (Asian) data on metronomic UFT + cimetidine, and decided on UFT + cimetidine, as a kinder, more gentle treatment, and, according our interpretation of the data, for CA19-9 [+++], a much more effective treatment than any others mentioned here. And frankly, I did not like the supplier-oncologist interactions and conflicts of interest that I was seeing where I live.

We do not use medical insurance as a matter of policy and practicality, we pay for EVERYTHING. Those who really are financially stuck should be aware that we pay about $4/day for UFT + cimetidine, outside the US, of course.
Spouse dx'd March with obstructive colon cancer, stage III/IV, possible lung mets <1 cm. Start cimetidine 1600 mg/d, bid.
1 month of alt chemo, nutritional fortification before surgery (initially a marginal surgical candidate, KP score 60-70%).
Highly experienced CRC surgeon laid in multiple metal clips for radiation on non-resectable invaded area. However, pathology showed most invasive material outside colon [peritoneum] necrosed before surgery, obstructed channel opened slightly, 2 lymph nodes remained positive.
April, post op: begin IV vitamin C + K3 [declined Folfox, Xelox+Av+Erb]
June: continue cimetidine+high dose nutrients, begin Metronomic UFT, an oral chemo with tegafur
Pre-op CEA: 20+, now<2; CA19-9 down 42% and declining.

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Postby kimmercans » Tue Aug 31, 2010 7:23 pm

Editing post and stand corrected with my tail between my legs because OUCH...that was harsh Liz! Intent was to help not harm. I am well aware of prescribing laws and it was wrong of me to try and salvage $2000 dollars worth of chemo vs throwing it away.

As always, my best to you all:)!
Last edited by kimmercans on Wed Sep 01, 2010 8:08 pm, edited 1 time in total.
Kimberly Age 50. Diagnosed at 44
Dx'd rectal ca 10/12/09
LAR,TME 10/14/2009 Stage 2a
Opted out of Folfox.
4/19/12 CT scan clear NED CEA<0.5
9/2015 still NED
Taking curcumin, Celebrex, vitamin d, digestive enzymes, bio identical hormone replacement.
2015 to present. Stopped all surveillance. Living life one glorious day at a time.

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Postby jmarie » Wed Sep 01, 2010 12:45 am

My first round was $210 for 84 pills, then my ins switched to a mail pharmecy for the more high priced drugs or long term drugs. When this switched my co_pay went down to $90 per round. $800 seems rediculas. With Aetna I have a pharmecy deductable, $200 for the year I think. Then it goes down to a tier pricing, $90 is the highest tier I believe. Is the $800 a deductable? I wish you luck in figuring this out.

DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

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Postby Surroundedbylove » Wed Sep 01, 2010 9:24 am

They are expensive. Do shop around - different pharamacies, see if your insurance has a preferred pharamacy and it may be cheaper. Also, your insurance policy may have a "cap" after which it pays 100%. My insurance had just changed from a percentage based to a specific dollar amount for preferred formulary drugs (which Xeloda was) - I went from having to pay something like 50% of the cost to paying $50 each cycle - huge difference.

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
Ileo Takedown '09
SIL Dx 2014 - Rectal T3

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Postby CRguy » Wed Sep 01, 2010 10:45 am

Trying not to hijack, but maybe a bit of a perspective from the Canuck side of things (in BC anyway)

Xeloda was free to me during neoadjuvant chemoradiation (28 treatments plus continuous oral meds including weekends)...BUT..gotta love this...NOT covered at all for adjuvant chemo post-op.

So the government would rather pay for a couple of nurses, an infusion bed, an onsite oncologist and all the support staff & equipment etc., than have me go home with a vial of pills and see the doc every 2 weeks for blood tests !!! ???
Gotta love tax dollars at work !

The problem was that, at that time, Xeloda alone was not funded as a stand alone protocol for folks with complete pathologiocal response to neoadjuvant chemoradiation...or so the Insurance Providers said (don't get me started on those a-holes :evil: ) SO I chose Xeloda anyway, paid my own ($3,000.00), got about $500.00 back through Roche Patient assisatnce, and claimed the rest on my annual income tax medical expenses.

Update to 2010 : so now I am on FOLFOX (could have chosen XELOX... BUT would have had to pay again because...yup..Xeloda is not funded for "pseudoadjuvant" chemo following a single isolated lung met !!!
whoopee, lucky me !
Again, I could have paid but chose 5-FU infusion +Oxaliplatin instead, because in my mind I have had the Xeloda and still got a now I'll give 5-FU a try. YMMV..everyone is different.

Cheers all
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Postby tammylayne » Wed Sep 01, 2010 11:00 am

To add more Canadian flavor - in Ontario Xeloda is not covered AT ALL, no matter when you take it, however infusion chemo - no problem. I am taking the pills, and the cost for 3 weeks, I get no breaks in my treatment , I take it every day, 7 days a week for the entire radiation, is $800. My insurance covers all of it, luckily.

Doesn't seem fair, but when on this journey did fair come into play....

51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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Postby juliej » Wed Sep 01, 2010 11:02 am

My copay is $53 a cycle. Like the others, I'm wondering if the $800 includes some kind of annual deductible. I'd call them and find out. The only odd thing about mine is that it comes from a specialty pharmacy which means it has to be mailed to me. I get a little nervous about such a valuable package being left on my doorstep.
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 3/19/2018, CEA<1

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Postby eitter » Wed Sep 01, 2010 1:11 pm

kimmercans wrote:PM me if you want the rest of mine...probably have about 75 pills and I would be happy to send them to you. I know its not legal and against the rules....but cancer has taught me not to give a shit sometimes;)

Well actually as a Moderator I give a shit and we can't have this turn into a drug swapping forum or to be known as one. So I want that to be clear to everyone! Swapping meds without a prescription in the US is a crime and being caught with meds you do not have a prescription for is a crime and you can do jail time at the harshest end of it and could also get a felony.

So this type of conversation can get you banned from the forum and let this be a warning to EVERYONE!

It is one thing to talk about costs and telling people how you get your prescriptions cheaper etc and steering someone in the direction of getting help, but NO MORE solicitations of swapping drugs!

Thank You and I hope you all understand!
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy

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Postby Terry » Wed Sep 01, 2010 4:22 pm

If you contact the drug company (I know this for a fact, I've done it) and tell them your situation they will most likely give you the drug for a lesser cost and you may not have to pay anything.
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

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