Oh my goodness, I hadn't realised the thread has progressed so much since I last posted! I usually get an email when someone posts on this thread, but I don't seem to have had any for a few days - I hope my settings haven't changed!
Traz - well done on your fifth cycle. Please try and stay positive (hard, I know). Many ladies have had a long time on Cape - I believe one lady who used to post on the Forum had 9 years on Cape. I myself have had 3 years so far. All the indications at the moment (just had a CT scan on Tuesday, so will know more when I get the results of that) are that it is still working.
Linda, Jane and George, I hope you are all doing OK.
Hugs, and I hope everyone else is OK.
Really encouraged that Cap has had some positive results for you. I'm on my 5 cycle and have my first scan on Monday, I've been feeling very negative but after reading your post on I'm feeling a lot more positive. Thank you.
I know how you feel after the dog walk, my feet burn and I've found that sitting with a frozen gel pack under them helps a lot.
Hello Janie, sorry you have had such a nasty time lately. The cold and the drainage sound nasty.
I'm sure you know about moisturising your hands and feet, but it sounds like you should perhaps be moisturising your face and anything else that feels dry.
Re the blood test results - I don't get a printout of the results, but my Onc shares them with me when I visit, and they are written in what, is our hospital, is called a "blue book" even though it's white! Who knows why?! This is then handed to the pharmacist who dispenses my pills, then handed back to me. I do keep an eye on them, and as they are all in one place, they are easy to compare.
Good luck with your second cycle.
Hello London, well done on completing your 8th cycle. It sounds like you are really suffering - so sorry to hear that. I have stuck with the 2 weeks on, 1 week off cycle (my Onc was not impressed when I mentioned the 1 week on,1 week off cycle that seems to be quite common in America (going by the Forum I read from there). That is not to say that your Onc wouldn't agree to it. I'm not sure that that would make any difference to your se's though. Would your Onc consider a further dose reduction? I have had two over the 3 years. If not, as you have had such good results so far, would your Onc consider a slightly longer break for you? Whatever happens, I think you need to have a serious conversation with him/her, and fully explain your worries. I know that that is not easy.
Good luck, London. Hugs. Barton.x
i would say that it is almost certainly the corsodyl. I used it once and thought I would never taste food again.
I had had a mammogram 2 weeks ago, first one after my lumpectomy last year, I received an appointment to see my breast surgeon who also said I need to have a bone density scan. Have you ever had one of those ?
Hello George, yes, my Onc goes partly on TM's for me, too. They have proved fairly reliable so far. I went to the hospital today for my next lot of pills (Cycle 34, all told). My TM's have also gone down! Yay! By 9 points this time, but still quite a lot higher than when I first started Cape. My Onc goes by the trend, too.
Hugs and best wishes to all. Barton.x
was just reflecting today, from my own printout, that my liver function tests are still pretty high......have been for a looong time now. Have just started Fulvestrant and noted a very rare side effect(as one does!) as being Liver failure....ho hum.
glad to see yours are falling tho.
much love and best wishes,
Hello Linda, congratulations on finishing your first cycle! No, not had a burning mouth, I'm afraid (well, not afraid as it sounds horrid), but it means I have no suggestions to help you.
I generally go to my GP's surgery for blood test, but it has to be at least 2 days before. If I have been late booking and unable to get a gp appointment I go to the hospital. They have a blood department where you just queue up and wait your turn - no appointment necessary. But that has to be the day before usually. Your hospital could vary.
Glad you haven't gone off your food - I never have, either.
Hello George, lovely to hear from you. No need to apologise to me for mentioning the big D! Suffering myself at the moment, too! - oh, the joys!
Hope everyone else is well and coping. Keep in touch.
Hugs to all. Barton.x
just catching up with all your news. I am on week off after just finishing second cycle. Main side effect for me is, as always, the big D (sorry Barton). I am on a reduced dose -3,000 mg a day so I suspect I must have a very sensitive stomach😳Hands and feet have not been too bad. I use Flexitol on my feet with 25%urea which seems to help.
Seeing onc on Tuesday when I should have some idea whether Cape is working as he will have my TM results, first ones since August as I have been too scared to ask so fingers crossed.
The weather has been glorious here this weekend which is always a bonus😊 Enjoy the rest of the weekend everyone.
I think a muga scan is similar to an echocardiogram, both of which check the heart function to make sure you can have Herceptin. Herceptin is known to have an effect on the heart, hence the regular scans. It doesnt mean it's long term damage, just can cause some problems in some women whilst on Herceptin. I have had plenty of echo's done but don't know the exact differnce between to two types of scan. I am now also judged (from a recent liver biopsy) to be weakly HER2+ but I don't respond that well to Herceptin, and other HER2 inhibitors, so it's been decided there's no point adding them to the mix any more. I am strongly ER and PR positive though and do seem to respond well to treatments that target those receptors.
Hello Philippa, you can't do better than follow Marli's good advice. I can't improve on it! The only thing I can really add, is to stay off your feet as much as possible until your feet feel better. Not easy for you by the sounds of all your activities! Wow! I am seriously impressed.
I have found that se's vary quite a lot over the cycles - especially if you have a short break from the Cape. The only problem being, that sometimes you lose that lottery and they end up more painful! I'm currently now suffering an itchy rash on the lower bit of my right thumb. So annoying! I keep forgetting to moisturise, though, so probably my fault. The previous lot of cycles, I was very lucky and had very few se's. Luck of the draw.
Hugs and best wishes. Barton.x
Hello Oggy, glad you had a lovely week in Kent. It's always good to be able to relax and enjoy yourself.
Congratulations on completing your2nd cycle and starting your third. I hope everything goes well for you.
No, never heard of a muga scan! Glad they are giving you Herceptin - I think people do very well on it, generally.
Hope you managed to get to the meeting today.
You are fully entitled to a rant, Oggy! I know exactly what you mean - people not in the same situation all seem to think we'll get over it soon!
Hugs and best wishes. Barton.x
HI Phillapa. Regarding the sore feet, by the end of my second round my feet were so bad that the skin came off from the toe to the heel in leathery, strips. Onc gave me an extra week off to recover. Since then I have creamed them at least twice a day with Aveeno. But the major difference is wearing shoes with memory foam soles from Hotter. You can also buy the soles from Hotter for £10. My feet are now perfect after over 3 months. Hope you can sort your feet out. Marli x
Hi I am half way though my 4th cycle of Capecitabine.I had very sore feet during the first cycle but thought it was self inflicted as I was walking in sandals & not paying enough attention to my feet & had even used a ped egg on the hard skin! I soon realised that was a definite NO!NO!
I stopped half way through the 2nd cycle as I was literally hobbling around on my husband's arm. My dose was reduced by 15%.
3rd cycle was ok but still very red, sore feet but using copious amounts of the prescrbed Diprobase x2 daily. Now half way through the 4th cycle & after a busy w/end, with quite a bit of walking, but not an excessive amount, I have had to rest with feet up for 2 days. Advice from my chemo nurses is to continue on the Cape unless feet really flare up/crack! They said it might plateau after this cycle.
It's just as well I'm not working...I gave up my teaching last October as I found it too stressful returning after a year off after going through all the op, chemo, radiotherapy. In the summer I felt fighting fit despite
knowing the BC was already in my bones. I cycled in the Pink Ribbon cycle event (absolutely brilliant- just getting bikes from Manchester to Londan was amazing on the train) in June having worked hard on getting fit & back to normality. In July I learnt BC was in my liver so had to start on Cape.
Now I feel confined to quarters; going to the gym, swimming, cycling seems to be on hold while my feet are a problem.
Is there any advise so I can get out & about again?
Hi all not been on for a while as had a lovely week away in kent during my week off. I have just picked up my 3rd cycle of cape. CT scan for baseline shows advancement of cancer since first scan in may prior to biopsy, but they expected that as no treatment had started . The next scan is the one they will use to measure success of cape. That will be in two more cycles. HER2 came back as borderline so they are going to start me on Herceptin anyway. I have to have a "muga" scan of my heart first so will probably not start that until next cycle. Anyone heard of this scan? new one on me. Planning on finally getting to the secondary breast cancer meet up today. Still feeling ok just get frustrated sometimes at some peoples denial about this whole thing ...they just blank off and say unhelpful things like you will beat this,stay positive. Well I am positive and I am determined that the treatment will manage this cancer,but I wont "beat it" ...sorry rant over. Anyway will keep trying to post at least weekly. Really like to hear other peoples experiences it helps a lot
Hello Janie, glad to hear you are being waited on - all is as it should be ! Glad the times are working out for you.
Hugs to all. Barton.x
Hello Janie, welcome, but sorry you have had to join us. Yes, space out the doses - I was told 12 hours apart. On the whole, I have managed to stick to that, but ocassionally it's impossible. The odd time differences won't hurt. A lot of people seem to work out their own schedule, but I usually work on the "if it aint broke, don't fix it" line of thought. It has worked for me for about 3 years now.
Any questions, we will all try and help, but I can recommend reading back over this thread for some excellent advice from some wonderful ladies.
Hugs and good luck. Barton.x
So glad the weather improved when they came out of the church! That was lucky.
Sorry, can't help with when se's kick in - a.I can't remember, and b.everyone is different.
Good luck though. You might be lucky and not have any!