Scan Results - Xeloda not working

Hi
Saw the oncologist today, and my scan results are not good, more progression. My tumour markers have also shot up, it seems that xeloda worked for about 4 cycles but clearly isn’t now. I am just devastated, I had hoped so much for this as I know that many of you have been on it for some time. Have just told the children ,my poor son doesn’t know what to say but is so upset as is my daughter but she is able to talk more and ask questions.
We have discussed either taxotere or weekly taxol with avastin hoping BUPA will pay, Cathy, I think thats what you are on ? My chemo nurse who let me cry all over her says she has other patients who have had good results but at the moment I can’t get any hopes up. Thinking about everyone else going through the mill and looking forward to us organising another meet, the support was great and I feel I need to plan lots of treats to look forward to
Kathryn

oh kathryn

I am sorry to hear this, I know how you feel I do. I hope that xeloda will work for me but my oncologist did not think it would help me, he didn’t rule it out but he thinks that the taxanes are a better bet for me,

BUPA will pay for taxotere for you (obviously i dont know your policy, but I can’t see why not,) avastin is very difficult to say the least. My oncologist is a great fan of taxotere and thinks that it gives really as good results as taxol plus avastin. So i think what I am saying is that if BUPA won’t pay for the avastin but will pay for taxotere, don’t despair its at least as good if not better. It also has the advantage of three weekly- weekly taxol is such a bind.

Sending you a really big hug and hope you can have a nice evening with your family …its totally crap it really is,

love
Cathy

Dear Kathryn

So sorry and sad to hear this news - was really hoping that xeloda would work well for you as it is for me. I think that there is some evidence that the taxanes can work well for those that xeloda doesn’t (and vice versa in my case). Jane (I think) discussed this with the oncologist she saw at the Marsden so perhaps she will be able to confirm this.

I was on weekly taxol and avastin last year and Norwich Union paid without too much protest but only for 6 months.

Thinking of you and your family - for me telling the rest of the family is one of the very worst things. But the whole thing is crap as Cathy says.

Big big hugs

Kay xx

Hello Kathryn

I am really sorry to hear this news. I really feel for you. I havn’t got any experience of Taxol etc so I can’t really offer any advice.
I just wanted to let you know that I was thinkig if you.

love CAroline

Hi Kathryn,
I looked into Avastin earlier on in the year and BUPA will fund it but in my case I wanted it
with Capecitabine and they wouldn’t fund that combination as the studies which have been done are not conclusive
to much improvement.
The taxol family are a very good chemo and I am sure it will have good results for you.

Wishing you all the best,
Bikinggirl

Hi Kathryn

Just so sorry and so pis*** off for you that xeloda isn’t working. It didn’t work for me…I had 6 cycles with vinorilbine which worked well, but it was the vinorilbine cause when I continued on xeloda alone the tumours in my neck grew agian.

I’d say if your onc recommends avastin with taxol and BUPA will fund then OK but equally if BUPA won’t fund don’t fret…the trial results don’t show much if any benefit of avastin with taxol over taxol alone. Weekly taxol is for me much easier than 3 weekly taxotere which I had during primary treatment.

Like Cathy I am on weekly taxol. Side effects not too bad…tiredness but not real knock out stuff. My hair nearly gone but in the scheme of things will cope.

News of progression and treatments faiing is the pits. Thinking of you and hope we can organise another meet soon: as long as you liver girls are happy with a non liver girl joining you.

very best wishes

Jane x

Hi Kathryn

Sorry I missed meetin u last week, as couldnt make the meet in London, due to my daughters appointments.

I had taxotere 3 weekly when I was dx last July with primary and secondary at same time. I had 3 x FEC and 3 x Taxotere. After completing the chemo, i had another ct scan and it showed significant shrinkage, so that is good news, so hopefully if u have taxotere, it will work well for you too. I have to admit though it was hard going for me, after the second dose, but I got through it and would do it again if needed.

Hang in there, and hopefully I will get to meet u one day. As u say, having things to look forward to, do help us cope somedays more than others.

Lots of love
Dawn
xx

Hi Kathryn,
sorry to hear xeloda is not working for you, I am one of the ones that had avastin with taxol. My liver was in a really bad way I have lots of clusters and my function was poor. I had been told I could co-pay and then they changed the rules anyway after alot of fuss and the threat of legal action my trust gave in. After 6 tax 4 avastin I had 50% shrinkage after the next course 10%. I found taxol really hard and so onc took me off it in May. I am still on chemo break but I have avastin and pamidronate for bones every 3 weeks.
I will go back on taxol but just enjoying getting feelings back in fingers and toes and recovering from all the side effects. Some other ladies that have treatment with me have had much better results and the liver tumours have melted away. I feel I would have been in a better position had I been able to have it earlier but who knows.
This disease really isses me off, good luck with BUPA but as others have sais taxol on its own has a good record.

Love Debsxxx

hope I have not wittered on too much

Dear Kathryn

So sorry to hear your news and telling the children is just absolutely terrible its so unfair this rotten disease I just want to scream and shout at times.

If you want to meet locally before we have another meet in london just let me know im available to listen your if you feel like shouting i will join in.

love beli x

no capital letter computer playing up.

I

Thank you all so much for your encouragement, the options seem to be taxotere or taxol and avastin, so I will wait to see what Bupa come up with, I have a copper bottomed policy and they have always paid up, they are just such a pain to deal with but I am leaving that to my oncologist. I have spoken to school who have been really kind and supportive and now going to meet a friend for lunch ,I couldn’t face work as kept bursting into tears. I think once I can get my head round everything I will pick myself up and dust myself down again.
Thanks again everyone,
With Love Kathryn

Kathrynm

yes a mental heath day where you just do something nice and give you a breathing space, I have one friend I can go to for things like this …who always is just a relaxing person, maybe you can get a tiny bit of retail therapy in (although in these times thats a worry as well but enough said there). I am glad school is helping you, my son’s old primary school was fantastic, discretely supportive and very kind it really helps,

come back on when you can .

love
cathy

Hi Kathryn,
I am so sorry to hear your news - what a bugger of a blow. You are bound to need a bit of space to digest it. Telling the children is absolutely the worst thing about this bldy disease, I can identify with that so well.
I really hope your friend got just the right balance of sympathy and ‘normality’ and your lunch did you good.
Big hug and lots of love
Jacquie x

Hi
Just been told that BUPA will pay for Avastin so I am going for that option with weeklt Taxol, I know it’s a drag having to spend one day a week at hospital but my chemo nurse does seem upbeat about it, Cathy are you using the cold cap? I didn’t with FEC but pleased to have my hair back now! The nurse reckons it’s an ordeal with Taxol as it has to be on for a good 3 hours. Thank you all for yor support, it does mean a great deal, I know it’s been said many times but it really is only those of us who have been in that very dark place who can wholly understand. So I start next week, I did buy a new pair of shoes today, that cheered me up!
Love Kathryn

I’m so sorry Kathryn, that xeloda did not work but really glad you have a new option in place already. What with that and new shoes … things must be looking up for you already.

Take care,

Jennyx

And I’m off for retail therapy tomorrow ! Bicester outlet village beckons, credit crunch… what credit crunch!

Hi Katie

Just checked in as you posted,

yes I am using it, every week I look at the damn thing then I look at my hair, I am OK with it except for the first 20 minutes, It is a bit much with taxol as its weekly, but then it does actually really work for me…so I don’t know i will probably persist. I think 3 hours is a modest exaggeration I am glad you have the avastin without some sort of hassle …the first 2 times with avastin take longer as they run it in over longer time in case there is a reaction…I can say I have hardly noticed the avastin and feel reasonably well on taxol, the real problem is the weekly day at the hospital.

take care!
cathy

Hi Kathyrn

Pleased you got your treatment sorted.

I am doing just taxol weekly…3 weeks on, 1 week off. During the three weeks on I had 1/2 very tired days and during the week off actually felt quite drained for several days ( I always get ‘fatigue’ on chemo though) But overall I have found taxol this far easier than any other chemos I’ve had…excpet xeloda…though had a couple of bad diarrhoea sessions on that.

I can’t face the cold cap and my hair has nearly all fallen out now…yesterday wore wig, but just been to London without and OK…have just a half centimetre thin layer (as you know my hair was short anyway…my problem with wigs is they are too long and big!)

best wishes with your treatment

Jane x

Kathryn - being another of the Imelda Marcos club, I’m glad to hear abut the new shoes and I also have the same spelling of your first name, so I hope the taxol has the same miraculous result for you as it has had for me. I can now swallow any food and I haven’t been able to do that for about 14 months although it has only been since march/april when my swallowing became so bad that I was reduced to eating pureed baby food. My lungs have also improved as has my 4cm lump in my armpit which is now 1-1.5cm and my skin mets have improved. With the addition of avastin who knows what improvement you could make. Really pleased for you that the insurance company will pay.
It is a drag going to chemo weekly. I’m now on my 8th weekly taxol and it does feel it is taking over my life but the results have been worth it.
My hair has mainly fallen out now but I’ve had it cut about 2-3 long and looks better shorter and a little shows when I wear a hat/cap thing and it gives the wig something to cling onto if I feel inclined. I just couldn’t bear the thought of the cold cap but often wish I had tried as having no hair makes me feel so ‘cancerous’.
Hope it all goes well
Katex

Am now the proud owner of 2 new pairs of shoes! Wonderful how it boosts the spirits. I will think more about the cold cap, I still have my wig from before but I agree that I’d rather not look like a cancer patient. Am so relieved that the treatment is now organised, went into office with husband to get a few things straight about what I could and couldn’t do and getting me some help so relieved about that as well. Had my flu jab this morning and a photo session, I had been thinking that I needed to update the children’s photos and decided that we should have some family ones done while I still have hair and not looking like an inflated hamster with the steroids, do I remember Cathy you saying that you weren’t having them?
Anyway pleased to have done that, now off to buy new hoover as the old one has given up. Hope you all have a good weekend
Kathryn

Hi Kathryn, I’m sorry Xeloda has stopped working for you…I think I may be in the same boat…perhaps soon…as my markers have never really decreased (stayed stable though) and I’m on the highest dose. My last markers were 40 but on hormonal treatments they were kept in the 20’s. I was told if Xeloda stops working it’ll be Taxol or Vinorelbine next. I love shoes but with puffy ankles :frowning: I’m now living in birkenstock clogs…comfortable but not very elegant! Take Care…Belinda…x