Yes, thank you too, Nicky, had meant to add George, that my understanding is that ports are the better option because they leave you freer to pusue energetic sports which involve the arms, and need flshing less frequently...mine is only postponed for the moment till i feel ready for the pkunge.
Hi George, yes, I did get a good long time on Cape which is even more surprising as I should really have been on a HER2+ type of treatment. I have a complicated story as I started off as ER and PR+, HER2- with my primary and also the same when my bone mets were dx as a local recurrence showed the same pathology. Roll on 5 years and when I developed liver mets I had a biopsy taken and my HER status had changed. So, I should have gone on to Herceptin or one of the newer treatments but my heart function had been hugely affected by FEC chemo which is had when I had my bone mets dx. This meant no Herceptin. I had a,ready started on Cape (just before the biopsy was arranged/carried out) so continued on this. In the meantime I had a referral to the excellent Brompton hospital in London where there is a research unit specifically set up to treat cancer patients affected by their treatments. A lot of time, effort and NHS money was spent on me! However it has paid off as my heart function fully recovered and is only slightly impaired now due to me being on Herceptin and Pertuzamab - both antibody treatments that affect the heart function even in previously healthy patients. I feel the money was well spent (!) as, being a research unit, I am now mentioned in international conferences as an example of what treatments for the heart can benefit cancer patients so I feel I am giving back. I let my consultant there know that I'm his best Guinea pig! Btw, I'm also still on hormone treatment (letrozole) as my hormone status has only changed very slightly. Phew, long story but as you asked I thought I'd give the full background! Hope you are feeling better and getting less SEs this week.
ps I also have a port and am so glad I had it done as my veins are shot to pieces - yet another legacy of FEC chemo!
Thanks for your reply. Cape seemed to work well for you after the adjustment which is encouraging. I understand your reasons for not wanting an operation to insert a port and, as you say, it is personal choice. I had mine inserted when my gall bladder decided to play up just a couple of months after I was diagnosed with secondaries. The consultant offered to insert a port at the same time as he was removing my gall bladder. I didn't even know what a port was at the time.
Hope you have all had a good weekend
Hi George, yes, my experience. Was similar what Barton described. I was placed on the highest dose for my weight. Thry gave me a journal to make a recod of how I felt and by the. End of my first cycle, I said life wasnt worth living! Diorhoes, vomiting etc, etc. and the onc lowered the dose and made it alternate werks, which I was wortied might reduce its efficiency, but it didnt.
I continued to take it for almost two years before bc got resistant to it. I did throughout have sore fingers, with cracks which allowed bacteria in, to cause cellulitis.
best of luck...and also I totally agree with Barton, feel free to ask and query as much as you want. I recently agreed to have a port put in, postponed it for a while as I wasnt feeling up to it, quite hard to go and cancell, but it was right for me t the timr.....we need to have some cntrol.
love and hugs, Moijanx
Just a quick note to say, George, that you are not being a fuss-pot! You have every right to query the dose etc, and to ask any questions that you like. Please don't hesitate to ask anything you like.
I agree with Barton. The dose is set individually and based on total body mass ie weight x height so the dose you are on can be very different to the dose someone else is on. I started at 100% dose (can't remember exactly how many peachy pills that was!) and went to 80% very quickly. Your oncologist will want to find the right dose to keep you on the tablets rather than taking breaks when side effects get too bad so I'm sure will listen to you. I found I was always asked by my onc how I had been each cycle when I picked up the next set of tablets and had a few chemo breaks, ie extra weeks off, when the hand and heel problem became too bad. The 80% dose was effective for the remainder of the 18 months that I was on Cape, liver mets shrank, bone mets stable so don't stress if the dose gets dropped!
Hello again, George. I started on a dose of 4000mg (2000x twice daily), but that dose was reduced after my first 7 cycles because of severe breathlessness. I believe the dose is based entirely on body surface area, which I think they calculate with a formula using your height and weight. So everyone will be different. However, I had read quite a lot before I saw my Onc after that 7th cycle, and had found that a reduced dose can work quite as well as the full dose. I think Oncs tend to start you on as high a dose as the formula says, and then adjusts as necessary.
Hope this helps.
Hi Nicky / Barton
Thanks for your feedback. Things have eased up and I have had a relaxing day. Think diet of toast, banana and rich tea biscuits have helped (along with the big D tablets). Just got worried as, usually, 2 Imodium would solve the problem when I was on Taxol, but needed 4 of the blighters today (hope this is not TMI - think hubby has had enough of hearing about my toilet issues!) I also worry that the big D might interfere with the effectiveness of the chemo. Anyway, due to see chemo nurses on Monday so will relate all this and fingers crossed bloods okay too. Won't know if Cape working until end of month when I have a scan and see onc.
Hope all well with everyone else on Cape and thanks for 'listening' to my moans.
Just wondered, what dose of Cape you are all on as onc said he woudl reduce my amount if necessay.
Enjoy the rest of the weekend and thanks again
I found I had dreadful diarrhoea the week off after my first cycle of Cape, completely threw me! However it wasn't so bad every other time. I did used to get it occasionally but just realised that it may happen and to be aware of any warning signs. It was never so bad that I had to take anything so I hope that you will get over this quickly and not suffer so much again. I'm sure it's down to our bodies adjusting to the chemo as I also found I coped better on Cape the more cycles I had, it definitely wasn't a cumulative effect.
Hello George, sorry to read you are suffering! Actually, I am currently finding that any se's are at their worst on my week off, and not so bad the following week (first week back on pills). I suppose it is a delayed reaction - in a way it makes sense as the two weeks of pills reach their maximum effectiveness, and then ease off after the rest week. Yes, I need the Loperamide quite often, too! I call them my magic pills! I always keep some in my handbag so I have them if needed.
Hope things ease off for you shortly.
Hugs and best wishes to you and all other Cape friends. Barton.x
Hi Marirose, sorry re the Capebreakdown. I hd vinorelbine, its a good chemo, but only worked for a few months for me...maybeyou will fare better. .good luck with the Mri....time for a little water treading? Maybe whilst you consider.
love and hugs
So sorry Cape has failed you, Marirose. It seems you have been given a fair choice of future treatments, so I hope the one you choose works for you for a long time to come.
Hugs and best wishes. Barton.x
Sorry to say I am no longer on cape it let me down big style I now have multi mets in the liver and issues elswhere. I don't want to sound negative to new comers I did have success at the beginning my chestwall tumour shrunk considerable.
My new treatment will be decided next week and I am to have a MRI scan I have been given 3 treatments to consider Epirubicin Vinorelbine and paclitaxel.
I wish you all the best with cape love and (((hugs))) xxx
Thanks, Waffles. Probably spoke too soon as shattered today and feet starting to hurt. Oh well, week off starts tomorrow so I can get a lie in. Also, looks like it is going to be a sunny day which is always good :-)
Hello Sarah, welcome, but sorry you have had to join us. The only advice I can give is to read back through this thread. There has been some very good advice from some fantastic ladies. Cape has worked for a long time for some, so is a good option.
I take my tablets differently from Waffles - I take them with food, and have never suffered nausea or sickness, and I try to take them as close to 12 hours apart as possible (even going to the extent of setting my alarm for the early morning pills, then going back to sleep afterwards on a non-work day). I would say experiment, and see which combination works best for you. Do tell your Onc team if you get any funny se's, though - don't suffer in silence.
Hugs, and best wishes. Barton.x
Hi Cape ladies
just catching up with thread as I have been in Cornwall for a week, had such a lovely time and the weather was wonderful. Took my peach friends with me and they behaved themselves as not too many SEs, certainly none that stopped me enjoying myself.
i have read about Ibrance and it does seem like a wonder drug so I hope we get it here. I was on Everolimus when I was first diagnosed, but it didn't suit me. I had dreadful mouth ulcers that were so painful I had to drink from a straw. Also, had a skin rash and mouth infection. Know it works for lots of people, but it was not right for me.
Sarah, I can only echo what Waffles said. I followed all advice from the ladies on this site and SEs not been too bad, just feel a bit more tired than usual and have had to watch the big D but think that goes with most chemos.
Have a good week all
Hi have seen oncologist today , lung mets increased in size and number so will be starting capecitabine soon , any advice ladies ? Had previously had FEC , Taxol and Gem / Carbo . X
just to say Ibrance is around £7000 per month!
Marirose, how lovely. iamnot married but have bern toGretna( long before it became such a big concern!) must have been you ger than 16when I went.
best Wishes, Moijanx
Hi everyone I am still here
Waffles I didn't realise you lived in Scotland we love Scotland we have spent many happy times there. First time was when we eloped to Gretna just before the age of concent was dropped to 18 had many lovely memories.
I am glad to see you can still get Everolimus I was on it 16 months and it kept me stable it did cost £3000 a month for the tablets and while I was on it a survey was done asking for success stories from the scotish health service. When I was on it NICE was withdrawing it because of the cost anyone on it could stay on it but then they changed their mind and it was available to all so now it would seem they want to withdraw it again I wonder why.
I met a lady at the clinic last week who got chatting she was on cape but the onc had taken her of it for 3 weeks because she got some terrible spots like blisters on her forearm and her hair was dropping out and she showed me when she ran her hands through it. Her hands were fine nothing wrong feet ok too the spots were clearing apart from the ones the dog had ripped jumping up. She was such a happy soul and was taking it all in her stride she was also on herceptin which she had injected into her thigh
so maybe that may have caused it. She had been on it since June.
Love and (((hugs))) to all xxx
Hi Waffles, yes, I have heard that Ibrance has had great results. I hope we get it soon and so many of us will benefit. I am on Eribulin, which has been working well.
i did try to message you a few days ago, but not sure if your messaging is turned on?
i am pleased that Scotland has so many options for ladies like us. Do keep us posted re Ibrance coming out up therexx
Yes Carolyn, i totally agree with everything you have said here...Apparently, if the NICE group ok'd it, the price would come down and vice versa..chicken and egg.
I did ask a lovely lady onc reg what groups it worked for..she was at the recent conference in the US where it was presented...she said the results were amazing for all Oes pos people and that she thinks it will be available by the end of this year because of this evidence.
Where NICE is concerned tho, there are no guarrantees...lets cross all our digits and our legs, and eyes!!
Hi Carolyn, yes, I think the usa ladies...because they are all basically on private health care and pay their oncologists...have access to their records....I have been reading about Ibrance in detail and like evrryone rlse I hope we can have it here soon...it costs about £7000 per month...which is a bit outrageous. So I cant see that the NICE group will allow us all to have it until the price is reduced!
i was told that when/if I have 4 Failed therapies, they can ask for it on compassionate grounds..I think thats to do with the arrangement they had with the drug companies, but im not sure that Ibrance is still one of the drugs that were available earlier. The other thing is.....Ibrance does have a lot of Netrapenia associated eith it...some trial results indicated 75% and also hair loss is quite common too. So im hoping this drug may get modified/improved at some stage.
yes Waffles, I too look at the inspire website and find it useful. I also watched the 'the truth sbout cancer'
seminars earlier this year. They were very insightful..they were about 90 minutes long and their first one was all about chemotherapy....these seminars were created by a group of usa oncologists and other proffessionals. they were very informative and gave me pause for thought.
I would say, tho that If you do decide to watch them...do think very carefully and chat to your oncologist before deciding to change or add any treatments. I had a long chat with mine and decided it was much safer to carry on with the treatment plan offered at my hospital.
the one very helpful site I personally value the most highly is 'Cancer active' administered by Chris Woollams. This one is very kind and very sensible. However, I always chat to my oncologist about any new suggestions and am guided by him.
Hi Waffles, and everyone else.
i understand totally where you are coming from....id heard less than 10, but I recently checked with my onc and he said that they were very old statistics and that in the past few years so many new drugs/options have come out that things have really changed...and the thing is with statistics....1/ we dont know how valid the studies were that they are based on 2/ we dont know how ill people were at diagnosis....and 3/ most important....they are continually changing!!
Waffles, we do all go through these kinda thoughts.....I definitely do. There are times when I get despondent about all sorts of things.. some of your posts have been very helpful to me.
Regarding Google, well I search for things a lot on there, but i dont rely on it for health info at all because most of it isnt referenced!
Having said that....well, even some of the studies that have been done have been criticised for having flaws. I am not en expert in anything - especially statistics, but I do have a lot of healthy skepticism, because we are all individuals, with our own lives, different experiences (and food fads) I just believe that almost anything is possible!
For example, I was convinced that Cape failed for me, because id had a break( after around 23/12)
And that was why bc became resistant! But lovely Barton has had breaks and it has been fine, so im actually tempted to try it again if need be..!maybe it will work for me later if my bc changes its dna again!
I have edited this post because i just want to apologise if it sounds like a lecture.....its not meant to be.....
i get just upset because in our position, we are very vulnerable to all the info and rhetoric out there.....it always 'sounds' true...but it isnt always.
Love and huggy thoughts to everyone,