Tykerb/Xeloda in England

[Daisypink]

Hi

I'm Jakki and i'm new to these boards. I live in England and i'm 33 years old.

I'm due to start a new trial over here for Tykerb/xeloda and wondered if any of you knowledgeable ladies will be able to offer me any advice and tips on how to cope with any side effects i can expect with the above.

It is difficult to get any info over here in England as the drug is not yet licensed.

Its so good for me to be able to read the encouraging results it is producing with you ladies over there in the U.S.

thanks for taking the time to read my post.

Jakki
xx

[Carolyns]

Hi Jakki,

Welcome. I am not on the combination that you describe but I am certain that someone will come along soon with helpful information.

Regarding Tykerb, I think that diarrhea, rash and fatigue are the most common. I have heard that for the diarrhea some of the gals use imodium (not sure of spelling). Others seem to have very few side effects.

I would suggest to drink lots of water.

Love, Hope, and Peace,

Carolyn

[Odette]

Hi Jakki,

sorry to hear about your case, but you are on the right stuff! Hopefully Tykerb + Xeloda will wipe out any nasty cancer cells that are trying to get a foothold in your body.
Most of us on this regimen take 2 equal doses of Xeloda morning and night with food - I take three 500 mg pills each time, which is based on my weight and height.
The Tykerb usually is 1250 mg which is five 250 mg pills morning OR night without food. Eg. before breakfast or approx. two hours after dinner. This is what I do.
There is a wide range of the side effects of what people are having. Many of us say that it is the easiest chemo which we have ever had. No hair loss, no bad neutropenia, no serious heart problems, no neuropathy, only some nausea, diarrhea, skin issues. Remember YOU might not even have any!
There was a lot of talking about these in the different Tykerb/Xeloda threads that you might find useful. If you have any specific questions, please do not hesitate to ask!

Hugs and prayers,

Odette

[MichelleH]

Hi Jakki,
Glad you found this site. There is a lot of lovely ladies here who are more than to willing to help out on questions we may have. They're all great!

I started Tykerb/Xeloda 2 wks ago. The only side effect I have (& could just be the cancer) is fatigue. Just saw the doc yesterday and he says the hand-foot syndrome is still a possibility. He told me to never go bare foot & always wear comfortable shoes, apply moisturizer (Uddery Smooth, Bag balm, ect...)to hands and feet several times daily (even at bedtime), take 50mg of vitamin B6 daily, avoid the following- tight fitting shoes, sudden stopping and turning with the feet (such as tennis, basketball ect...)and prolonged heat to feet & hands.
Hope this helps.
Take care,

[Daisypink]

Hi odette and Michelle

many thanks for your replies... glad to hear you are tolerating the drugs well..

its so nice to be able to talk to others that are on this combination of drugs.. here in england it is very rare as i have already said.. tykerb is not licenced..

i'll keep in mind the tips you have given me so far and keep you posted on how i'm doing..

much love across the miles

jakki
xx

[Shell]

Jakki-

I was in the clinical trial for xeloda/tykerb, and had the H/F syndrome as well as diarhhea. A great website is www.xeloda.com (http://www.xeloda.com), where they have a treatment diary, that lets you mark down your symptoms - as you are taking pills, you probably won't see your onc as often, and believe me the days start to run together - it was very helpful for me...

Kind regards,

[Daisypink]

Hi

Just an update on me over here in England..

I started taking the Xeloda - 3300mg a day and Tykerb 1250mg a day.. this started last friday.. so far so good..

i have only experienced a little nausea, this is usually a couple of hours after ive taken the morning pills.. i'm very tired by mid afternoon, my recon seems to be sore and tender (that happened with other chemos) but apart from that all is ok.. would the side effects have kicked in by now?? i was expecting worse than this..(not that i want worse!)

dare i say it..this seems by far the easiest of chemos ive had..

I have to be re scanned in 6 weeks to see if my tumours have shrunk in my lungs and my back..

thanks to those who have replied so far....

love to you and keep fighting the fight!

Jakki
xxxxx

[debski]

You go girl- all strength to you.

Love Debbie

[Mykentuckyhome]

hi jacci, I am on that regimen and trying to stay positive. I am on my third cycle and this regimine has kicked my butt- diarrhea, hands and foot syndrome, rash and now I have to take a pill cause every time I eat I get horrible cramps. My onc has the reduced the dose of both drugs to two and two on the xeloda and now down to 2 tykerb a day. My onc said I am probably missing a enzime which would matabalize the drug. I must stress that every persons body reacts differently to each drug.I am praying you will no side effects.Good luck, linda

[hutchibk]

I am glad you are getting what you need Jakki! and that it is reasonably easy for you! I tolerate it really well, too.

I am curious. Do you access your cancer treatments easily through the UK health system, or have you also purchased the individual supplemental insurance to help you with access to what you need? I have dear friend in England who's sister lost her life 4 yrs ago to b/c, and he was telling me that if she had had an individual insurance policy, he feels that she would have had better treatments options and might have survived longer. I don't have any opinion either way, I am just trying to learn a little more about how different health systems work around the world. I don't know that any of them are very efficient, no matter where we live...

[Daisypink]

Hi Brenda

thanks for the reply.. in answer to your question about health care treatments over here.. well we have the NHS and i have been able to have all my treatment through this and funded by them. I have been very lucky in that respect. It is a postcode lottery over here though when it comes to access to drugs.. our NHS leaves decisions about paying for drugs to each areas primary care trusts and some unfortunately will not pay for some drugs - all down to cost and how much debt each trust is in.. very wrong i know but that is how it is.. we also have to wait for NICE (national institute for clinical excellence) approval on drugs before the NHS makes them available, as it stands over here - tykerb isn't licenced so i am have access to it through a clinical trial. We had huge media interest over here when Herceptin was licenced for early breast cancer as the NHS would not fund it and there were a hell of a lot of ladies who desparately needed this drug and couldnt get it. I would guess it will go the same way when Tykerb goes to licence.

I dont have private insurance so i cant really comment on whether treatment is better, i do have a friend who does and she has had the same treatment/drugs as me the only difference made is she gets appointments faster and goes to a private hospital where obviously the surroundings are a lot nicer. We have the same Oncologist. I know certain scans she has to have are not funded by her insurance. As to whether your friend would of got better treatment.. i dont know..

In my experience so far.. i think it all depends on where your being treated over here and the individual oncologist.. i am very fortunate to have an excellent one who has access to all the latest treatments and his specialist subject is breast cancer..

Hope this helps in your query.. i'm sure any others who might be reading this over here in England might be able to share there experiences..

Hope your well

Love jakki
xxxx

[hutchibk]

Thanks Jakki - Like I said, I like to know how it works in other countries. Alot of people complain about our system in the US, and I know it is not perfect, but I feel fortunate to have the care and access to drugs that I have.

[Daisypink]

Think i spoke too soon.....

I seemed to be doing ok with the Tykerb/Xeloda until yesterday when i felt really under the weather was almost sick and had some diarrhhea. i also have had a headache since i started taking it.. some days its bearable but other days feels like i have a major hangover.. the worst part for me now is i have several mouth ulcers and some on my tongue.. its making eating and drinking very painfull. Despite rinsing in my mouthwashes every few hours. The fatigue hits me everyday mid afternoon too.. its day 9 so i am guessing my bloods are dropping now at this stage..

I am assuming all of this is normal?? Have any of you had really bad sores in your mouth and any tips for getting rid of them quickly??

Love Jakki
xxxx

[Muldoonmom]

Hi Jakki,
I do get mouth sores but mainly my tongue gets very patchy and sore. I use something we call Magic Mouthwash - it is a prescription and I have no idea what is in it!! But it really works. Maybe someone else can let you know the formula for magic mouthwash so you can ask your doctor about it.
I started Tykerb by itself in April and have had pretty severe diarrhea. I'm currently giving myself a break until I see my doctor on Tuesday. But like the other gals have said, everyone is different. After nearly 11 years of treatment, I have tolerated all the chemos amazingly well. I think that in my case, I may have had so much chemo that the Tykerb is affecting me more than most.
Hang in there... this drug combo is so promising!

[Daisypink]

Thanks Debbie

I would be interested to know whats in this 'magic mouthwash'.. i could really do with some right now..

Hope you get on ok on tuesday and the doctor can help with the stomach upsets..

thanks so much for your reply..

love Jakki
xxxx

[Daisypink]

Update on me....

well.. my mouth has been so sore all weekend, i decided to call the hospital this morning to ask them for something..

They had me in straight away to check my bloods which were ok but they said my mouth ulcers were too bad and that i have had to withdraw from this cycle of Xeloda.. the dose is too high for me.

They are going to reduce my dose for the next one.. they also gave me some orabase paste to put on the sores so they can heal..

Has anyone else had to have thier xeloda dose reduced on the first cycle?? I'm really scared that this is compromising my treatment and i'm really worried.

Jakki
xxx

[Mykentuckyhome]

Jacci I have had such bad side effects from xeloda and tykerb that i am down to 2 xeloda in the morn and only one at night. the tykerb has been reduced to just 2 pills a day. I too wonder if this dosage is effective at all but my body wont tolerate any more. The side effects come as the drug accumulates in the body so the last few days of the cycle and even days off the xeloda altogether are my worst days.I had mouthsores, but as the dosage dropped so did the mouthsores. The majic mouthwash was a life saver. My scans are at the end of the month so we will see then. Hope you feel better. Hang in there we are all in the same boat with all these questions. linda ps never thought I would be trying to gain weight cause all my life i have had to watch my weight. They are equally hard to do.

[Mykentuckyhome]

For anybody who wants to know magic mouthwash contains tetracycline,hydrocorisone caps, nystatin susp,diphenhydramine, and distilled water whatever all that is.

[Daisypink]

Hi there

thanks for the replies... i had my second dose of xeloda/tykerb prescribed and they decided to try the full dose once more..

Does anyone know if the magic mouthwash is available on prescription only or are you able to buy it over the pharmacy counter over there?

your help would be appreciated on this..

Thanks

Love jakki
xx

[Mykentuckyhome]

JAKKI, In reply to your question, majic mouthwash is by presciption only. Hope you can get some cause it works, good luck, linda

[Daisypink]

Thanks for the info on the magic mouth wash....

Ive just completed my 2nd cycle of xeloda/tykerb and i have had no mouth sores at all!! yippee!!! i hope i wont be needing to ask for this when i go on thursday for my 3rd prescription!!

I have had no side effects at all apart from being tired..

Just hope this stuff is working.... all will be revealed after the 14th august as i have my first CT scan.

Keeping my fingers and toes crossed!!!!!

Love jakki
xxxx

[Daisypink]

hi there

i just thought i would give you an update on me over here in england..

Ive just completed cycle 3.. but have developed the rash!!!

Ive just spotted a thread about this so i am going to join in there..

I have been using the udderly smooth cream on my hands and feet and they appear to be ok.. i have been advised to use it on the areas now where i have a rash along with piriton.

I have been told that i wont be scanned until 12 weeks as they said 6 weeks is too soon so that will be mid september.. will keep you posted..

I got away with out any mouth ulcers on cycle two but they are back on cycle 3 and i'm finding i'm extremely tired..

hope you ladies are all fairing up well..

lots of love jakki
xx

[Muldoonmom]

Hi Jakki,

Sorry I'm so late in getting the magic mouthwash formula to you.... I was away on vacation and am just getting organized again.

Here it is:

Nystatin Oral Suspension: 60 ml
Benadryl Elixir: 50 ml
Lidocaine: 10 ml

Swish and swallow 5 ml - 4 times daily

It works miracles for me!

Debbie

[TerriLynne]

Hi Jakki

I'm new to this website and forum but saw your post regarding taking Tykerb through the UK trial. I am also in the UK and hoping to get approval for the trial having just been told I have brain mets again (had whole brain radio last year and surgery in March). Did you have to wait long before being told that you were in? Does everyone get Tykerb - I did the HERA trial and due to radomising not everyone actually got Herceptin to start with.

The results on Tykerb look good and if I don't get into the trial I would be prepared to pursue it privately especially as otherwise my options are limited. Does anyone know if it is possible to have it prescribed via an oncologist in the US?

I am lucky to have had private health care throughout although under the same oncologist as would have had under NHS. As Jakki says the treatment was probably pretty much the same but everything happenned faster and the hospital was nicer - I didn't have to wait for hours each time I went for chemo which was a big plus.

Hope you are coping with the side effects Jakki - perhaps we can compare notes if I am accepted.

Best wishes & take care

Terri.

[Daisypink]

Update on my treatment here in England...

I have had the results following my scans to see if the tykerb/xeloda is working for my lung mets.. its bad news.. it isnt..

The mets have grown and i have new ones.. i'm devastated..

My oncologist has had to stop the trial.. i dont know where he will go from here.. he says my cancer is proving to resistant to all of the combos ive already tried..

Can anyone suggest anything else to try? I'm so desparate to live.. i dont want to die.. i'm very scared.. any one have any hope for me or encouraging stories..

I currently feel well, hardly breathless just very tired.. am i likely to able to live like this without any treatment for some time? i know no one really knows the answers to my questions but i just need some stories that may help me and bring me out of that darkness that i'm in right now..

Take care

Love jakki
xxx