Dissapointing scan results

Hi everyone.

Well went for my ct scan resuts this mornning. I finished weekly taxol 5 weeks ago and had tha ct scan 2 weeks after that. liver mets have increased in size by 30% and there is evidence of node involvement in my upper abdomen. The ct scan I had half way through my treatment showed a significant reduction in number and size of mets so I dont know whats gone wrong since then. On a positive note the mets in my lungs are still not evident. My Onc thinks that the pain and stiffness in my hips is due to further spread in my bones. so pretty p…d of as you can imagine.

Plan of action is to start capecitabine on thurs so any hints on how best to take it and any experiences of this drug would be much appreciated.

Trying to keep this development low key as both my sons have exams in a few weeks. so hopefully I wont be too bad on this regime.

Maddison

Hi Maddison
I was on capecitabine for two years had really good shrinkage firstyear and it held it for second year some of the girls on here have been on it several years so good luck. It is one of the kinder chemos and it gives you your life back just get hubby to rub your feet with vit e cream. My hair grew back really strong and shiny.
i was on 2300 mg twice a day 2 weeks on 1 off so you can plan hols etc.

Love Debsxxx

Sorry to hear your news. I start capecitabine in a couple of weeks. I’ve some friends who’ve been on it a long while, with good results. It’ll be my first chemo and I’ve been told it shouldn’t floor me like others can. Like Debs has already advised I’ve got some good creams in case of hand, foot problems, a couple of people have said Vit B6 may help hands, feet as well.
Good Luck…xx

oh maddison

Sorry to hear that, thats really annoying to say the least, I am glad that your lungs are still fine This disease is such a bastard. I think you have written this before but are you on bone strengtheners as well ? Has your onc looked at that ?
I hope that you get on ok with the capecitibine and get your dosage right. I have read about this and seems people can get on really well with this once they get whats right for them.

love
cathy

Hi Maddison,
I’m so sorry to hear your crummy news. What could have changed between the first scan and this one? It’s so unfair.
You poor love. Hope the capecitibine is trouble-free for you and does the business.
Big hug
Jacquie x

Hi Maddison,

Sorry to hear your news, it’s devestating when you hear that there is progression. Not on this treatment, yet, (it is a possibiltiy if my own scan comes back cr**y). But I have been told that it can work well, and the chemo nurse telling me of it said that she has ladies who have been on it for 3 to 4 years so that is a positive.

kiwi

So sorry to hear your news. It is devastating isn’t it.
There are lots of threads here on capecetabine so worth researching here on site.
From my experience, they start off on the max dose and then see what happens and then reduce it to your needs. It almost seems to be common practice so don’t get upset if you have to reduce dose fairly quickly.
Other things

Take the tablets within 15-30 mins of food - otherwise I got terrible diarhoea
Use loads of cream on hands and feet - udderly smooth is good, E45
Take Vit B6 (pyridoxine) which reduces the rsik and side effects of hand/foot syndrome
I did get very tired after the 4th cycle and took it for 9 cycles when i had loads of infections and had to stop and then my bc spread very rapidly again so changed chemos. On retrospect, I shouldn’t have stopped taking them so soon.

Hope it all goes well
kate

thankyou everyone for your replies and support. it’s great to hear tthat it is working so well for alot of you. I had been hoping for a bit of time in between treatments especially after having such a good result half way through.

jacksy - yes I take bondranat to strengthen bones. supposed to take calcium as well but that’s the one I keep forgetting as it makes me a bit nauseaous but will take today. I havnt changed anything so dont know why my liver has decided to play up. sometimes I think it’s the role of the dice, just luck or bad luck in this case.

Kate - thanks for the tips. whixh chemo are you on now? could you not go back on it?

will get som B6 and foor cream - love my feet played with so now I’ve got a good excuse.

will keep you informed.

Love Maddison

I get the tablets tomorrow and see my Onc again on tues so she is keeping a close eye on me.

Hi Maddison,

I did weekly taxol in '06. I finished it around Xmas and then began to take Femara. Within 11 weeks I was told my liver mets were on the move again so began Xeloda in early '07. I had a scan yesterday to see if it is still working. It has been so easy for me to tolerate (apart from some hand/foot issues) that I forget I have cancer! There are some cases where it can be effective for years - hope you will fall into this bracket.

All the best with your new regime.

Jenny
x

The Marsden reccomend Zometa IV for bone mets every 3 weeks. They say the results are better. See waht ONC says
Love and hugs
Colette x

Hi Maddison

Sorry to hear about your results - a huge disappointment for you particularly after the half way scan was so promising. However hopefully you will be encouraged by the comments your’ve had from others about capecitabine and you will tolerate the new treatment without too many problems.

Thinking of you

Kay x

Some really positive things. Jenny let me know the reults of your scan. Fingers crossed. Colette will mention about Zometa whem I see onc on Tue - thanks for your e mail. Great to hear you are feeling a little better. picking up my tablets this afternoon and wil also ask for my blood results so I can compare them to those I had at the end of my treatment. back very achey today.

Love maddison (Jill)

Hi everyone

Just to let you know I have completed my first course of capecitabine with little side effects. Kept waiting for the runs but they didn’t appear. Since finishing tablets last thurs have had avery sore mouth and today a runny nose and sore eyes. Because of this my Onc has decided to reduce my dose slightly. I ahve also been having a lot of hip and thigh pain and shoulder pain (prior to starting this treatment)so I am going to have a bone scan to see if the buggers have spread to my pelvis/shoulders or if it is referred pain from my spine. Have been taking oral biphosphinates for 3 years now but swapping to iv from thurs as supposed to be more effective although my onc not convinced. it will mean that I can take pain killers though during the night if I need them.

Maddison

Hi Jjill,

I sometimes get teary eyes and a slightly runny nose for a couple of days, but it doesn’t happen on every cycle. It sounds as though you are going to tolerate it pretty well! Hope the boney bits have not spread.

My scan results showed stable, so carrying on with xeloda for another 3-4 cycles until we repeat the nerve wracking process over again.

Fingers crossed that you continue to do well on it!

Jenny
x