I’m just joining this thread as I’ve been on Docetaxel 6 rounds which finished in July for liver mets, all ok for about six weeks then felt really poorly, GP thought it could be flu, amongst other things, but eventually after a CT scan last week, was told by oncologist that I now have extensive mets to liver and also in lungs too. On the plus side bones stable!
I’m rather gutted, waiting now for start date for capecitabine. He also wants to do a liver biopsy to check it’s still the same as my primaries from 2005. Can anyone give me any info on liver biopsy, bit scared!
Im hoping that Cape is easier than docetaxel as I found that really hard and disappointed that it didn’t really work!
reading though post it seems that lots of ladies find it easier if the dose is right. I’m starting on full dose so a bit worried.
Any advice would be very much appreciated.
keep well everyone
Thanks for posting your advice about Cape It has helped me realise my own situation better. I am in my second cycle after other treatments for mets progressions and feel bloody awful almost non functioning in fact. I had decided to ask about a dose reduction on my next visit to the oncologist as I am not coping well with SE's spending 20 hours a day in bed totally exhausted when dosed and 12 hours plus varying sofa time shared with more mattress time when on the days off. So I now feel more confident in asking for a dose reduction. thanks for giving me confidence to move forward.
Yes, when a treatment fails to work for a long time it does rock our confidence. I hope Cape works well for you and it is a completely different treatment to the hormones you have had before.
I can't answer you question about tumour markers as I don't get them done however I know its more about the trend for you, not necessarily what number is normal. Obviously very low numbers will show less activity but they are not reliable for everyone so it will depend on what the trend is if you get yours done.
As to adjusting to Cape I was on it some 4-5 years ago and it took me a couple of cycles, and a dose reduction, to cope with it. Initially I was on a 100% dose but quickly went down to 80% which was then effective for the 18 months ot so I was on it. I really struggled to begin with but after a couple of cycles I felt my body had adjusted to the daily doses and didnt feel quite so tired and generally got on doing the things I wanted to do. I did get the Big D occasionally on my weeks off and that seems to be quite common. I also had a few splits on my finger tips and a few cracks on my feet (even though I moisturised all the time) but these did clear up especially if I had an extra week off which happened on a few cycles. If you suffer badly with side effects do speak to your oncologist, there is usually room to change the dose so you get the right balance between effectiveness and quality of life - which is what they are aiming for.
Hello Sarah Senior... hope you are feeling a bit better now. I'm on my 3rd cycle of cap and for me its the feeling of a complete lack of energy thats the worst side effect.. Apart from having intravenous chemotherapy I have been on letrozole and exestamene which didn't work, then tamoxifen for a few months which then stopped working..hence we are now trying cap. As for the tumour markers, I can't actually remember what number they gave me. I think it was around 400 which was a big leap from the previous number. They haven't taken the TM in recent blood tests...the Onc omitted to request them, but they requested them on my latest blood test, and should get the up to date info at my next review in a couple of weeks.
All the best..Carolyn
Hello to all the ladies on here, I of course didn't know Barton but send my condolenses as it is always sad to hear when someone has lost their struggle.
I am now joining this thread as having been on letrozole and pabociclib for only two months it appears that it wasnt working for me sadly so fingers crossed that the cap is more effective.
I am only starting my second week and feel out of sorts so hoping that my body adjusts to it.
I see that a number of you mention tumour markers and just wondered that for those of you whose are going up what level is normal and how much do they tend to go up.
I guess that I am struggling at the moment as all I can think of are the oncs comments in relation to timescales due to the fact that the first traetment didnt work. I am finding it hard at present as well as much as i have a very suportive network of friends both my daugters have gone away in the last couple of months one to go travelling and the other to go to uni and I know that my youngest is struggling with things.
Hopefully I can take some comfort and support from this forum and knowing that so many of you are doing well on the treatment.
So sad to hear about Barton.........fran. I never met her but of course read her posts on these forums. She was always so welcoming, helpful, and caring. She is safe now of course, but her wonderful sister will miss her down here. So hard to miss loved ones. But heart warming to read all the warm comments. She was loved and so appreciated. Fly high, Fran.
So sorry to hear about Barton/Fran, another lovely lady lost too soon. Do send my condolences to her family if you are in touch and sending hugs to you. Thank you for letting us all know.
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!