hope me you don’t mind me joining in, especially having read the sad news about someone you obviously all cared for.
I started cap today after EC and Pax chemo, surgery then rads. Apparently the cap is because I’m triple negative and the chemo while it had shrunk the tumour significantly there were still live cells. My onc wants me to to this for 6 months (8 cycles) if I can tolerate it. I had minimal side effects with the other chemo but the daily dosage of this stuff and only a week off in between makes me wonder if I could be in for a rougher time.
Any advice on practical tips for being able to stay ‘normal’, I’ve only recently really felt like I was no longer a patient and this feels a bit daunting. Also am I likely to loose my newly returned hair, the chemo nurses were a bit vague when I asked this and said ‘maybe, maybe not’ which wasn’t the most helpful answer.
Thank you Carolyn for letting us know about Barton. Please pass on our condolences to Bartons family.
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Hello Carolyn, I am so very sorry to read this, and for your loss of a lovely friend. I never met Barton but as you know I was very fond of her and I missed her greatly when she stepped back from the forum. Sending you, and her family and friends my condolences. RIP Fran xxx
Oh Carolyn, so sorry to hear this sad news about Barton. As you said, she will be at peace now. Please send regards to family and let her sister know we are thinking of her.
Hi Everyone, after seeing my Onc last Friday she went ahead with my 3rd prescription of Cap as the side effects had cleared up after delaying the 3rd cycle.for a week. I thought she may have reduced the dosage from the max of 2150 mg x 2 a day. But she wanted me to carry on with that dose, I'm feeling ok but only in to the 4th day. The Onc said if I feel bad again to ring the Hospital for advice. She said I should have done that before, but I hadn't because I expected to feel yucky.
My TMs had gone up quite a lot but the last 3 blood tests that were taken didn't register if the TMs had reduced so I had another blood test last Friday and will get the results at my next review.
Lynnq, I'm pleased to know there is another Elvis fan on here. Did you go on the Candlelight Vigil ?I've done that twice, it was very moving. Had to stand in line for hours to get to the Gravesite. It was beautiful and the floral tributes lined all the way up the drive to Graceland.
The skin on my fingers have started to crack and bleed, but I can put up with that. I do feel very uncomfortable after eating a meal, I know I should have smaller portions, but the trouble is I haven't lost my appetite ! Its encouraging to read all your experiences whilst on Cap. I'm pleased that most of you seem to be coping well on it.
Until the next time.....love Carolyn
UTIs are Urinary Tract Infections...cystitis etc. I am prone to them and have Interstitial Cystitis which flares up periodically so we were almost expecting them. We were on holiday at the time and I was just four weeks after IV chemo (pacitaxitel) ... it was very hot and I wasn’t coping with the heat too well, nor resting enough. We really should listen to our bodies shouldn’t we.
there are a couple of ladies who attend the support group who have had good results with tomoxifen so hope you do as well.
how long were you on Cape for, and thanks for the reassurance re tumour markers,
Hello everyone.. have just read through all of the posts after a few weeks absence.
I started on cape about six weeks ago and have just started my third cycle. Not many side effects and the ones I have are manageable so far.
just wondering if anyone has had a Tumour marker experience like mine. I have had SBC for almost 6 years and during that time TMs have always been a good indicator for me. Onc tells me not for everyone but in my case he believes so.
Anyway TMs started to rise about a year ago. Stopped Letrozole and started E& E combo which didn’t work, they continued to rise. I then had 16 weeks of Pacitaxitel, my TMs stayed at more or less the same level for the 16 weeks - didn’t decrease much at all. They were 229 at this point. I tried Tamoxifen but only for about three weeks the UTIs were horrible...still getting over them now. Then for 7-8 weeks I had no treatment. When I next saw Onc they had increased to 1209...a rise of almost 1000. I was shattered. Then last week after just 2 cycles of Cape they had decreased to 288. A huge drop. I asked the Onc if the spike could have been a mistake, he said that because I had 8 weeks with no treatment he thought that could have caused the huge rise. After the first cycle my white platelets were a bit low but after another blood test - done there and then - they had risen to just over ‘the line’. so they gave me my second cycle. I have 2000 x 2 daily.
the Onc told me that it wasn’t just the TMs which had improved but several of the readings had improved...I have always been a bit anaemic but that had improved etc. And my energy levels have increased, even did some baking with my grandchildren over half term. - all 5 of them - then took 4 of them to the cinema and KFC the day after...
so based on this we are assuming that cape is working for me. It seems such a huge change in the TM numbers both up and then down - just wondering if anyone else had experienced this. I am pretty cautious and don’t want to get excited too quickly.
Graceland Girl - what did the Onc say, has he and you decided to continue with the Cape. I am also an Elvis fan, been to Graceland once..loved it. We actually stayed at the Heartbreak Hotel.
Carolyn52 - wholeheartedly agree about E & E being devil pills, the mouth ulcers were horrendous, I lost so much weight as I found it difficult to both eat and drink with them.
Thanks for posting everyone
I just wanted to say hello and join in the cape ladies chat x. I am on my weeks break, with my fifth cycle due next week. All ok so far. Feet ok, hands ok although I do moisturise every day to try and prevent soreness. I was diagnosed nearly 3 years ago straight to stage 4, liver and hip and then 10 months ago brain mets. WBR over 2 weeks , I was not prepared for how low that would bring me but I came out of the other side. Positive thoughts to all of you xxx
Hello all....sorry that after sending my first post and receiving lots of messages, I suddenly experienced all the side effects of CAP. Stomach pains, sickness, water infection and the feeling that my batteries had been removed. It all started on the 2nd week of my 2nd cycle.Consequently when I had my review the Onc decided not to give me my next prescription, but wants to see me again tomorrow. Most of the side effects have cleared up now and my batteries are slowly recharging.
To Lynnq, yes I am a devoted fan of Elvis ! I've visited Graceland 3 times, but doubt whether I'll ever make the journey again, but I do have lots of Elvis parties, which keep my spirits up.
I hope that the Onc will give me my next prescription so I can carry on with the treatment. As I was on the maximum dose she may decide to reduce it. A couple of girls I have spoken to at my support group had to have their dose reduced and one of those girls said her CAP was reduced when she suffered the same reaction as me on the 2nd week of her 2nd cycle.
I hope all who are reading this post are doing well and i'll update you all after Ive seen my Onc.
Lots of Love Carolyn xxxxxxxxxx
Welcome back Carolyn! So glad to read that you are back on the forum and your son's wedding went so well. Family is everything when the chips are down, aren't they? Cape seems to be working well, so pleased for you.
I called Cape a wonder drug when I was on it! I had very few side effects and it worked for 2.5 years as it has for many others. I think because it is called chemo we expect it to be brutal but I much preferred it to my current trial drugs. Wishing all the Cape crusaders many more months of good results x
How lovely to have enjoyed your sons wedding Carolyn. As you say, something maybe a few months ago you didn’t think you’d be able to. I have been in that situation many a time and somehow my treatment has been far more effective than I ever thought it would be at the time. So there’s always hope. And you now have the twins birthday to look forward to as well. Our grandson was 1 a couple of months ago and it was so nice to be part of this landmark. Apart from the joy he brings me (well, except for this morning when he is here and causing havoc as ever!) he also brought great joy to my Dad and that is a big comfort for all of us at this sad time. Thanks for your kind wishes.
I hope your recent post is one of many and it’s good to see that you are tolerating Cape so well, it is quite the unsung hero of the chemo world!
How lovely to see you back on the forum, Carolyn, you have been missed - a lot! So pleased you are getting good results for Cape as well, I do hope you managed to celebrate.
ps I was about to PM you anyway but saw you had been on here already so that was a lovely surprise xx
Hi Graceland girl .I've just joined the group and was interested in the fact that you've just started cape treatment. I finished 5 cycles on it about 8 weeks ago and though I was really ill after the first one (dose needed lowered) after that I stayed well. Did buy into taking special honey to prevent nausea though. My sister had heard about it on breakfast tv. I've never coped well with the prescribed anti-sickness meds and the honey really worked for me. I'm seeing my oncologist next week to see what effect the treatment has had and I'm keeping very positive about it. Diagnosed with my secondaries March this year 5 years exactly after my initial cancer. The battle continues!!!!
Welcome though sorry you find yourself here. What a fab attitude you have especially in light of unwelcome prognosis from idiot onc,
Take care, wishing you a long time on cape.
I haven't used this forum before, so I hope Im using it correctly. I had intravenoue chemo for about 12 months but was taken off it due to my blood not recovering. I went on to tamoxifen but the TMs and scan showed it was no longer working, so I'm on Cap now. I'm on my 2nd cycle on max dose of 2300 x 2 daily. I don't feel too bad, just lacking energy and the sole of my foot feels very tender. Its very comforting reading other posts as I don't feel so alone in coping with incurable cancer. The saying "Living with Cancer" rather than "Dying from Cancer" is something that I think about every day. I don't think this disease has stopped me from doing anything I would normally do...except I dont do so much housework ! But I still enjoy cooking and eating, although I dont seem to be able to eat as much as I used to ! My original breast cancer was diagnosed in 2011 and I had a lumpectomy and radiotherapy. Although I continued to have mamagrams that were always ok, in 2016 after a visit to my GP she discovered lump under my arm and after tests it was shown to have spread to my liver and was inoperable. The surgeon was very offhand when he gave me my diagnosis...with a shrug of his shoulders he said I had 2 to 4 years survival. That stayed in my mind and all I kept thinking was there was no point in buying new clothes or planning for anything as I probably wouldn't be around. I have since been told that I shouldn't have been given a time limit as no one knows and everyone is different....so now I've started buying again !
Hello again - glad u had a good trip George, I’ve been to Galway twice and it poured with rain both times. We found good places to eat both times and had lovely evenings though.
I started my cape three weeks ago and have just started my second cycle- the first one seemed to go okay, not much in the way of SEs. Saw the Onc on Friday for my second cycle and he said that the bloods I had done showed low white blood platelets, he asked me if I would be willing to wait around at the hospital whilst they repeated the test, which I did and they had gone up enough so he gave me my second prescription.
Also gave me my scan result which was a bit daunting, it appears that the bone mets in my spine have infiltrated the bone marrow, which could be why the platelets were low, also the peritoneal mets are more apparant. However he did say that this scan is a baseline to see how the cape affects things...I had it just as I was starting my first cycle and had not had any treatment for 6 - 7 weeks. I was on Zomera and Letrozole for almost five years which reduced my TMs and also kept them stable. Since then have tried E and E which had no effect. Pacitaxetol which kept me stable for the 16 weeks duration but when I stopped my TMs increased dramatically- also tried Tamoxifen but the side effects were awful so I had to stop it.
Yesterday morning I had awful diarrhoea but after taking a couple of imodium it has been okay since. My eyes are a little sore, red and dry, but I understand that can be a SE as well. Really hoping that I can get some stability with Cape
love to all, hope you’re all as well as you can be.
Hey George! Sympathise with the weight gain! I'm up 16 kgs since going on Xeloda but am told it's my sweet tooth, too, that is the cause! Stay well and I will keep in touch. x
Hey George, how are you? I live in Australia so maybe the funding is different for ribo. We did have to get a special authority to get it. Glad u have heard good things about ribo - not much to read out there as it is quite new. Xeloda worked very well for me for a long time - TM going up slightly after 18 months of Xeloda keeping them at the same level - but not enough to alarm the onco at the time. It's the mets to the omentum that came this year that's prompted the intro of ribo. I'm now taking ribo with letrozole plus xeloda. Onco had originally said you usually have letrozole with ribo but not if u are on any oother chemo so not sure why he has said to also stay on xeloda. TM had increased at the visit 2 weeks ago (but had slowed down). This was xeloda and letrozole. We introduced ribo a week ago so in 8 weeks I will get an indication if it's doing anything. The sore feet and hands is a side effect of xeloda - I didn't get that - but keep moisturising as it helps. I asked the onco at the last visit if we could increase dosage of xeloda as I tolerated it so well. He said no because that brings on SE with hands and feet. I am taking 1500 mg of xeloda twice per day. What is your dosage? x
Hi JanieB, the complex world of breast cancer! I didn't have lobular bc to start with - it has always obeen oestrogen receptive. When the mets came in the omentum earlier this year I asked my onco if it was a common area of spread (i.e. the omentum) he said no, but associated with lobular. This takes me back to a convo I had with another colleague here in Australia (I live in Aus but am British - been here 32 years) and she was very much into the science of bc - she had it herself. She explained that as bc metastasises the pathology can morph, meaning change. So I am assuming mine has gone from oestrogen receptive to also lobular. Capecitibaine (Xeloda) worked really well for me - 6 months of it gave me 18 months of stability. The rbiociclib (also known as Kisquale) is pretty new. I've just read another comment on here about funding in the UK - I needed special authority for it here in Aus - took a week - otherwise it's normally AUD $5,500 for a box ... The SE in the first few days meant fatigue but this week not too bad. I am taking it with Letrozole now. Up to this year I was on Cape and Tamoxifen. When the omentum got involved they changed the Tamox to Letrozole. I was told Letrozole is usually taken with Ribociclib but if you are on other chemo you can't take ribociclib. So not sure why 2 weeks ago the onco put me on the ribo with letrozole AND continuing on with Xeloda. At the last visit 2 weeks ago (before introduction of ribo) I was on Xeloda and letrozole and the markers had increased (but slowed down from the last test) so I think onco is hoping ribociclib will bring them down and keep the omentum stable. Hope you are doing ok, too! It's a hell of a journey, isn't it? x