thats fantastic to hear Sue
long may it continue
Louise
Excellent news Sue - makes me feel hopeful for my results on Wednesday as liver does feel much better and energy not too bad. Am still annnoyed about having CT Scan over 2 weeks ago straight after last out patient appt so when I go on Wed the scan is missing out of evidence of this 3rd course of chemo… Will certainly mention my concerns about this timing and length of anxiety about resutls
I can understand you wanted to stick with what is working - my Onc has said she’s someone on Capecitabine for 2 years so staying on the drug is clearly an option; like you I had no success with hormone treatment before and afterwards was told I’d only a 40% chance of success so I can understand your position…
I forgot to say that when I go walking I’m a great one for looking at views (to have a rest) and given any chance will lie down in dry heather etc and rest horizontally and take in the Vit D - just great to have feet recovered enough from the Capecitabine! But certainly have more energy than when on FEC or TAX.
Best wishes all
Fran
x
Hi all, well…a week into taking capecitabine I started having strange sensations in my arms and chest, and actually became a bit breathless which panicked me a bit. My community macmillan nurse paid me a visit and rang the Oncology Unit who suggested I go straight to the hospital where I had to have an ECG and blood tests. To cut a long story short, my heart and blood were totally normal (what? some good news???) however the nurse in the unit said I should come off the capecitabine immediately. My hospital is without a resident Oncologist AGAIN (waiting for a new one AGAIN), but she did say she would speak to one today to find out if my dose should be reduced. I hope so…I don’t like the thought of being off this drug especially as most of you have good news to report about it. Just wondering if anyone else has had the same thing happen???
I am on day 8 of Capecitabine with Lapatanib. I hope they restart you on a lower dose Wannee. I don’t think that stopping cape is unusual as they start us off on the highest dose they can ( maybe I am wrong but this is the impression I got from my nurse). The one Se I have noticed is that my skin itches occasionally. I have noticed this when I go to bed at night. Its ok at the moment, but I am keeping an eye on it so to speak. Anyone else had this?
x sarah
Hi Cromercrab,
I have just been taken of capecitabine, and I am about to start vinorelbene with Lapatanib. Yous is the first post that I have seen that mentions Lapatanib… how is it for you? Have you had many side effects?
I have got lung mets diagnosed in December but feel fantastically well. The Cape’ didn’t work too well for me, no side effects and no extra tumours but the ones that I have got have grown a little.
SallySpoons5 x
The word “stable” from the mouth of Onc today sounded so good - so feeling great!!! Seems the Capecitabine is holding the liver mets and they are just going to monitor the bones so finally after 9 months of Arimidex and Docetaxel not working we’re feeling we’ve “found” something that suits me. I keep thinking of “our” Xeloda Queen and hoping we can all be exceptional like her!
Thanks so much for your encouragement - I asked about the timing of CT Scan over 2 weeks ago at start of new cycle of chemo and was told that was when it needed to be in relation to when I was registered on the research trial - I strongly expressed the view that having today’s appt over 2 and half weeks after the scan didn’t seem to be very valuable as data was already nearly 3 weeks old and the anxiety it placed on me was not good (eyes did a good welling up but kept composure -phew!). So they know I’m not happy with this -seems trial timing is ruling rather than patient care… Anyway will probably move off of the trial as just want some stability and will then “go for” more aggressive radiotherapy to get rid of tumours since I’m thinking the stereostastic radiographic treatments would help strengthen my body. Have found out about a new stereostatic radiotherapy (don’t think it’s in UK yet but in is US, France and Switzerland) - Triliogy - it sounds less strong in radiation and can work on many tumours so worth us keeping an eye on as they can use it even if we’ve had loads of radiation from conventional methods…
Hope others are doing ok - even feet and hands feel good today (start next cycle tonight…) and am now being prescribed Vit B6 to help skin - has anyone else found this useful? So a day now for relaxing and planning much needed holiday.
All good wishes
Fran
x
xxx
Great news Fran. I finished my Capecitabine & Vinorelbine 6 weeks ago now and am just waiting for the word from my Onc to restart the Capecitabine as it is working well. Yes, I am hoping for long term gains with htis drug as it appears from some users that their tumours have continued to slowly reduce on this drug.
Hi Sallyspoons, Sorry to hear that you have had to come off Capecitabine. What works for some clearly doesn’t for others. I am only slightly hormone positive. Maybe that has something to do with it? I don’t know. I hope that something else suits you better and does the same job.
Hi Sarah, the only side effects I have had are the sore feet and occasional fatigue. Othersie I have kept very well on the peachie pills.
Best wishes to you all Sue x
Hey,
Susie I am so happy for you. Just reading your posts makes me feel so good - despite everything. Vinorelbine has been mentioned for me as a switch from Capecitabine (that I also take with Lapatinib Sallyspoons). Did the Vinorelbine make you immuno-suppressed? As you know Susie, I feel like I need to stay in work part time for another 6 months if I can and this might stop me.
Thinking about you especially Wannee.
Annie
Hi Fran - what wonderful news! I’m so pleased for you. It is such a relief when you are told that a treatment seems to be working for you.
Long may it continue! Hope you book a wonderful holiday!
Dugsy x
Fran n Sue so pleased for you and your good news!! Thanks Annie for your good wishes, I am still in limbo-land without any drugs, worrying me a bit when I’m not taking anything but also its great not having to pill-pop every day, but still I’d rather be taking something. Got my blood test at the Onc unit on Friday before I get my Zometa and Zoladex jab on Monday so will talk to the girls there about my worries, again. They must be sick of me. Can I just check -is Vinorelbine just for lung mets or does it apply to liver too?? Best wishes to one and all, Joanne xx
I just have spine mets, no lung or liver…
I’ll let you know if they do switch me. A x x x
Sounds like good news Annie - and spine mets can often be zapped by Cyberknife/Tomotherapy now so that opens up new treatment options.
Hope the appointment on Friday addresses your worries - I saw a new doctor today and she was sooo helpful (it really does make a difference doesn’t it…) - we had 35 mins with her discussing lots of issues and even got her to refer me back to maxilofacial to have root canals looked as since my NHS dentist agrees after lots of research on his part that “the jury is out” on whether they can contribute to BC - having had lots done in the 1960s in the US when the approach was quite new I’m thinking it might be a good time to have them removed in case there is infection lurking that’s compromising my ability to tackle the cancer cells.
Hi Annie and all
I only had two occasions over the eight cycles of drugs when I had to delay treatment by a week. The first time with an infected little toe/toe nail and the second time because my neutrophils were down to 1.4. So I did quite well overall with the Vinorelbine. It has similar SE’s as the Capecitabine so when I am just taking that it will be interesting to see what SE’s I get. Hopefully not many, especially the sore feet as I like walking so much.
But…GUESS WHAT??? My sister’s friend isn’t well enough to go out tomorrow night so guess who was first reserve for the ticket to see TAKE THAT in Manchester tomorrow night? YES…ME, still in a state of shock at the news!
Sue x
Thanks for that Sue, I’m going on Thursday to see what they’ll switch me to (if at all). I’m certain I’m the only person in the world who hasn’t been to see take that. Enjoy! x
Wow Sue that’s great news!!! (obviously not for your sister’s friend) have a wonderful evening.
Sorry I missed your call earlier. Speak soon!
Hugs xx
OMG I saw Take That in Sunderland and it was the best therapy EVER, stuff the chemo!!! Enjoy , Joanne xxxx
Yes, it was FAB…although I thought Robbie Williams solos was fantastic!!!
Sue x
Yes Mr Williams was indeed a true superstar. How is everyone doing today, the sun is shining, its actually quite, dare I say it, warm here on the North East coast. I have my appt with Onc tomorrow to discuss what will replace the capecitabine, or if they will reduce my dose due to my strange side effects I got (heavy arms, funny chest sensation, bit breathless). Had zoladex jab and zometa yesterday, think I need to take up residence at that hospital…
Hope appts go well for those of you going this week. Feeling more in control of Capecitabine SEs now with GP prescribing large tubes of Flexitol (200ml) since hospital couldn’t do this - so “cooked” them in clingfilm overnight and they really are feeling better so can keep walking. Also on vit B6 tablets and hoping they help with foot/hand sydromre. Must keep walking since for a month I didn’t do much and hip pain got worse - think it’s because I was not doing my 30min walk first thing in the morning post-Bondronet to help get drug absorbed ( walk recommended by Onc) - back on that routine and pain decreasing. Has anyone else noticed this difference in Bondronet?
Wish I was going to Take That … glad it’s been so uplifted for those who have been. Will just have to turn up the sound on The Circus CD!!
Loving today’s weather - hope you are too.
I’ve posted under “research and diet” thread some info on sugar in diet and livers that you might be interested in. It’s about the liver and glucose production and diet/medication that might suppress the production of glucose and therefore not provide the sugar that can feed cancer cells.
Would be very interested if anyone has any more info on this.
Have to admit to loving my new way of eating and don’t get the hunger urges I used to get - even love the taste of 85% chocolate now and it used to taste like horrid medicine to me.
Anything holistic to help the Capecitamine that seems to be doing its job at the moment. Feet are not so bad now - could be the B6 tablets or wraping feet in clingfilm with the Flexitol at night… Hope others are ok
x