New painkillers are easing my pain already. I have a CT scan in January to see if cape is working or not.
I had FEC first time round in 2012 with my primary tumour, which wasn't too bad.
Hope everyone has a good weekend.
Hello Sarah66, so sorry to read Cape has failed you. I too had FEC-T for my primary, in 2011. Hope it does it's job for you again.
Hello George, glad you have a plan now! I think you are probably sensible to get a few more Cape doses under your belt before having a liver op - you never know, with any luck, by the time the op comes along the Cape may have got rid of the mets if they are that small!
You don't say what dose your Onc has reduced you to - I think you said you had originally been on 4000mg per day? I hope you get a good, enjoyable Xmas, without the bid D!
Hello Bousy, so sorry you have had such news and are in pain -always so debilitating! I'm glad that your Onc has a plan, though! Good luck with the Rads on 20th.
Scan results show capecitabine is not working for me, lung mets have grown , possibly going onto EC chemo. Anyone had this? I had ?FEC in 2008 with primary tumour. Which worked well. I may try the cold cap if I can bear it , advice welcome .
think dilemma solved as liver nurse called last night to say that I can't have RFA as liver mets too small. Operation seems the way forward. I think I am having another meeting with surgeon next week so will know more then, but want to go with what my onc suggested which is to have a few more cycles of Cape. I am focusing on the positive as it is good news they can do something. Good to hear you are not in any pain.
Hope everyone else well
What a dilemma! At least you don't have to make any rapid decisions and who knows by February, your liver mets might have all gone! Hope the reduced dose suits you better and you get fewer side effects.
Bousy/Liz - hope the rads help and the change in pain meds. I've been lucky enough not to have bone pain over the 8 years I've had bone mets but many ladies unfortunately do and quite a few are on pain killers. If this current type doesn't agree with you I understand there are several different ones to try until you find what's right for you. A separate/new thread on here can often produce some really useful answers should you need it.
Good luck to all Cape Crusaders, hope it's kicking ass!
Hi George and everyone,
i saw the onc yesterday to get 3rd cycle of cape and get results of MRI on my spine. The terrible pain I have been having in left leg and back are caused by cancer in spine pressing on nerves. They have changed my painkillers to low dose morphine and 2 weeks of anti inflamatories. May be one further up spine causing problems in left arm as well. Having some radiotherapy to ease pain. Go on 20 th for initial session. Hope it works and eases pain. Hope everyone else is keeping ok.
Don't consider it a "me" post, Abney - it's great to get an update on how you are doing. We are all sorry that Cape failed you, but hope the new one works for you. Good luck with your second cycle, and may the se's be few!
I hope all is well as can be expected. I'm sorry I've been rather quiet. Just still recovering from the pleurisy and adjusting to my new chemo regime. I had my 3rd Paclitaxol today and felt so drowsy during the session which just took forever! It's all the pre meds they have to give which takes the time! I think I'm doing ok on this chemo in terms of side affects but I am very exhausted and can get a bit shakey! Also the steroids are a bit full on and I become a crazy lady who can't keep legs still or sleep! Still can't manage my 5 year old on my own and I need a lot of help with him slowly I'm determined I will get there! Hair watching at the mo and think it is slowly deciding it doesn't like my head anymore! So got my scarves (from last time) on standby.
So finally last week I saw my oncologist for an update. He apologised for what happened to me and said how very concerned they had all been! Sadly Cape did not work for me so no longer an option which is a shame as I can see how it has done a great job for so many of you lovely ladies. He said all the tumours had been growing particularly the one on the sternum which caused the fluid and pressure on the artery and this all led to the pleurisy. Quite scary to hear this that in a short space of time this had happened. I think he is still working to shrink them all and I do hope this drug and new regime works. I've just finished my first round and I get a week off but then start again for another 3 weeks. 6 cycles in total. I'm very up and down. Having a picc line again is a constant reminder of what I went through before but this time I'm so uncertain about what will happen next. I'm sure you ladies feel like this too but any mention of the future I go a bit down thinking will I even be there so sorry this is not what you girls need to hear and I do need to get my positivity back as I'm not a negative person normally!
Sending you all lots of love and hugs
ps I'm so sorry about the me post AGAiN!!!
Please do mention the jaw pain, Helen. I know stacey said it's only worrying if you have invasive dental work, but it's far better to be on the safe side! Glad your chest is much better!
Good luck for your Onc meeting tomorrow.
Hi - thanks to you all for your responses re chest infection and jaw pain.
Chest feeling much better - hoorah!
jaw pain gone for the last few days, I do wonder whether it is tension, it's so hard to tell. I am on a bone strengthener but it is so odd, it comes a few times a day, is excruciating for about 15-30 mins then goes.
I'll let you know what the onc says tomorrow :-)
Hello George, glad you got at least one thing sorted out with your medical team, but sorry you still waiting for some other answers. Hopefully you will get the rest of the answers next week - good luck (just in case I forget next week!).
Hugs to all. Barton.x
Jaw pain can also be caused if you are clenching your facial muscles tight. I've done that in my sleep ... plus grinding my teeth. It may be related to the chemo, but not specifically to your jaw but tightening muscles.
(I believe the problems caused from bone strengthening drugs only occur after invasive dental work that impacts the bone.)
Helen, re your query about jaw pain. Are you on Denosumab or other bone strengthening drugs? There is a risk of Osteo Necrosis of the Jaw, and should be taken very seriously. If you are on anything like that, you should contact your Onc or Chemo unit immediately. if you are not, I have no idea, I'm afraid!
Good luck with finding out what it is and being pain free soon. Oh - just thought, if it is just related to the Cape, on a few cycles at the beginning I had horrible sharp headaches - could it be a version of that, do you think?
So sorry also that you have a nasty chest infection - hope antibiotics sort that out for you soon.
i had a scan Monday that showed a lung infection, although I have no symptoms at moment. My Onc said ' if you do feel unwell stop cape and go straight to acute unit for IV ABs, don't bother with ABs from GP'. So to answer your question, yes I think it's normal to stop Cape to take ABs.
Well done Barton...you must be so reieved.xx
Helen, so sorry to hear you have a chest infection. And the pain in the jaw seems a mystery. Hopefully the onc can reassure you?
have just re read the blurb, because I just remembered having very severe lower jaw/tooth pain when having my chemo treatment in 2001. I thought it was my teeth, but noone ever found anything! Anyway,the blurb on the web says cape evolves into fluorouracil in the body...this substance is in some of the i/v chemos...anyway it can cause symptoms like this which should be checked out. When you see the onc hopefully he will be able to helpx
does anything releive the pain? Love and hugs,
Hi Barton - great news. So pleased for you.
George - fingers crossed...
I'm on cycle 2 and have picked up a chest infection. On antibiotics from GP so I messaged breast care nurse just to inform her and she messaged back to stop the cape and we will speak in the morning. Is that normal?
Can anyone advise on jaw pain related to Cape? I've had very bad pain around the jaw line (beard area if I had one!) ... both times it has happened about day 3 of the cycle. First time they thought it was the anti sickness.. metoclopromide.. I stopped that, it went away but it's back again now and I'm not on antisickness anymore. Anyone with experience of this??
Thanks, Waffles, Bonariensis and George. It was such a relief as I was positive I had progression - just goes to show that we really don't know, and sometimes worrying is for nothing (easy to say now, of course, but my sister says I'm the worst worrier in the world!).
Good luck, George, for tomorrow - I'll be thinking of you.
Oh Bousy, sorry you are in pain! I hope you have effective painkillers. Good luck with the MRI scan and results next week.
Great news. Glad you are ok! I go to see oncologist next Wednesday for results of an MRI scan on my spine. In a lot of pain on left side at the moment, they think it may be a trapped nerve.
Back from hospital in a record short time! Luckily had an early afternoon appointment (1st on the afternoon list, I think), so was in only 5mins after appointment time!
I am a Stable Mable - I have to admit, I was absolutely gobsmacked as I was absolutely positive it was going to be bad news - especially as when I got there they hadn't got my notes. The receptionist looked at a list, gave the other one a "meaningful" look, then said they would find my notes. Nerves went through the roof!
Anyway, because my hands have, and are, so sore, I have been given an extra week off, and possibly even time off over Christmas too. That would be so nice. They would put me back on Exemestane during the Cape break, which is what I was on for most of last year in my extended break (when I had progression). I presume the break wouldn't be as long as last time (7 or 8 months, I think).
Thanks everyone for such support and all your good wishes. Hope you all have such good results.
Thanks. Bousy, Bonariensis and George. Slept ok, thanks, George, but the nerves are ramping up now!
Hi Aneemay Sorry to hear you are feeling so bad. Hope your onc comes up with something to help today
Thanks, George, for good wishes. I'm on 3600mg per day (2x1800mg). I was originally on 4000mg per day. Have only had the one reduction. Please do ask, if you are finding your dose too much. In fact, if you show them your hands, they will probably suggest it!
Sorry to hear you are having such a rough time. I can sympathise as I find Cape very hard on the stomach, it is the big D with me which usually kicks in on day 10. I am sure your oncologist will be able to alleviate your symptoms; they are always telling us not to suffer with side effects, but to let them know. I am going to ask my oncologist for a dose reduction over Christamas as I really want to enjoy the festive period, cancer allowing.
Hope all goes well tomorrow and you can start eating normally again. I know weight loss is a worry, but you soon put it on again. I couldn't eat for a while and lost half a stone, but it is back on now.
All the best
i met someone on a Penny Bhrohn course who was on Kadcyla and she was coping really well with the side effects and had just returned from a week's skiing holiday. She said the treatment targeted the cancer cells and didn't do as much damage to healthy cells as usual chemo. ( her words). I know we are all different, and respond to chemo in different ways, but thought I would share this with you.
Good luck with the new treatment plan
godd luck for your scan results tomorrow. Know how you are feeling as I was in the same position next week. Also, know what you mean about sore hands and feet. My hands are bright red and really sore. Will ask for a dose reduction when see onc. How many milligrams are you on a day?
Once again, good luck for tomorow
Yes, it is Kadcyla I will be starting. Will be checking out that thread as well as speaking to a couple of SBC ladies who I know who are already on it. Hoping my SEs will be as minimal as one of them and not as bad as I have read for some!
Good luck with your results tomorrow, hope all goes well.
Hello George, Cape is treating me ok at the moment, except for very sore fingers! Have had real trouble handling my pen at work today and yesterday, and the computer inputting I have to do! Oh well. Last day ofbmyvweek off today,vand Onc appointment tomorrow. Should get the results of the CT scan I had 3 wks ago, so Scanxiety setting in!
Hope you manage ok for the next few days, and have plenty of Loperamide handy!
Hello Nicky, so sorry to read of your progression! And needing to alter all your recent expectations-such a shame! I hope everything works out all right, and Kadcyla (?) works for you.
Oh, Anneemay, so sorry to read this! Have you been taking any anti-sickness pills? I expect you have - probably your first thought! Hope you get answers and help tomorrow. Let us know how you get on.
feeling very fragile at the moment started my 3rd cycle last Thursday and it has been downhill since, I felt so bad Sunday morning I contacted the out of hours oncology nurse, she advised me to stop taking them and contact her Tuesday if I still was not any better, which I did. I have got an appointment tomorrow to see my oncologist for review. I have not eaten anything since Sunday morning when I took my last dose, I don't feel particularly hungry and when I try to eat start retching, even my supplements drink made me vomit. I have a cows milk intolerance and always have had a very sensitive stomach which doesn't help. My brain says you have got to try to eat something as I am losing weight but my stomach says Whoa ... you will only be sick again. Caught between a rock and a hard place springs to mind!!!!
Any advice gratefully received. Ann xx
Thanks for your message and offer to PM. Will definitely take you up this. Seeing consultant again on Friday so will probably have lots of questions after that- if things haven't changed, that is.
Hope your treatment is treating you kindly (if that is possible while on chemo)
Thanks for your good wishes. On cycle 6 of Cape now. Two more days before my week off and dodgy tummy starts. Have planned a very relaxing day for Saturday. :-) How is Cape treating you?
Sorry to to hear your news, but good to hear that you have a plan A. It sounds as if smaller lesions are harder to treat then larger ones, that was certainly the impression I got from the consultant on Friday-ironic really. I am expecting things to change for me too following MDT meeting on Thursday. Certainly, treatment seems to have worked really well for you so far. Good luck with the new treatment and do keep us posted.
Anything I can do to help. My surgery was to my left lobe, I think they said they took half of that. This was before my mets...they had noticed calcifield lumps within the biliary drainage within the lobe. Kings College Liver Unit did an MRI and were uncertain as to wether there was cancer, but said that as it was clearly diseased it should be removed. So I had it removed - it wasnt cancer at that time. My tiny mets came later and they are disseminated all over my liver, but most of them are too small to see . Pm me and I can chat more about it if you wantxx
Umfortunately its all change again for me - in between posting my info about having surgery and my onc phoning me late this afternoon to say that the MRI had in fact shown a few other lesions ☹️. These obviously hadn't shown up in my recent CT as they were too small, or in fact have developed since the CT. Not what I had hoped to hear at all but it means I am now back to Plan A which is to start Kadcyla.
In answer to your questions my receptor status has changed from HER- to HER+ (which is when my liver mets were diagnosed) I had been HER- for 10 years! I wasn't able to start Herceptin at that time as my heart had been damaged by previous chemo but I started on Capecitabine. This worked for 18 months by which time my heart had been sorted out by my lovely cardiologist and I was able to start the docetaxel, Herceptin and pertuzamab combo. This was back in 2014. So, I am an unusual case and surgery wasn't an option before as I had about 4-5 lesions small lesions which is too hig a number for surgery or RFA. It was only in October when my CT results came back to show only 1 lesion remained and it had grown that surgery or RFA was mentioned.
Hope this helps and good luck with your own appointments and treatment.