Hello Bousy - sorry to read you are currently experiencing so much pain. Hopefully that will subside soon and the rads reduce your levels dramatically. Glad Cape seems to be working for you so far and that you are coping with it. Long may it continue.
Hi Moijan ,
yes im on morphine tablets and they have given me oramorph so it helps. Feel like I've been kicked with a football this morning. I know it gets worse before it gets better.
How do I get on bone mets forum, when I search for it can't seem to find it.
sorry you re in pain, did they give you anything to help relieve it?
If not, try and chat to your gp or bcn. Maybe some of the girls on the bone mets thread can share what they take for it.xx
Praying that the rads will help asap.
have a good Christmas
i went for some radiotherapy treatment yesterday to relieve pain I have in left hip. Turns out I have tumours on vertebrae of spine which are pressing on nerves causing pain. I had 5 doses in one yesterday. They warned me pain will get worse before it gets better and it is. Felt terrible yesterday. Hope to feel better today. Cape seems to be ok so far, just finished 3 rd cycle, have scan in January to see if it's working.
Hope everyone enjoys the holidays.
Hi Catherine - sorry to hear of your latest diagnosis. All I can tell you is my own experience and what my oncologist suggested. I started with Carboplatin and Gemcitabine after my recurrence. Apparently people with TNBC respond well to the platinum based chemos, such as Carboplatin. After Gem Carbo I tried Capecitabine (Capecitabine is the generic name for Xeloda). It's given in tablet form. You have 14 days of tablets and then 7 days off. Most people seem to find it quite easy and I know some have successfully taken it for a number of years. I was one of the few who couldn't tolerate it because of a lack of the enzyme necessary to metabolise it, so I had less than one cycle. Having said that, even the small dose I had seemed to be reducing my skin mets.
I think the only way to assess if your onc is right with her treatment plan is if you got a second opinion but that would take time.
I hope this is of some help and maybe some other ladies will be along to tell you from their experience.
Best of luck with everything.
Hello Catherine, welcome, but sorry you have had to join us. I'm afraid I can't help you with your decision about which chemo to have. I haven't had Carboplatin, so don't know what that would involve. Have you had a meeting with the Chemo team to explain your choices (I know you are seeing your Onc tomorrow)? If this is instead of an Onc team meeting (pre-chemo type thing), make sure you go armed with paper and pen and ask lots of questions. I hope you have someone to go with you - if you do, ask them to also write stuff down as you will probably (understandably) be totally confused by it all.
Sorry I can't be of more help, but we are all here for you. Most of us "hang out" in the Bones thread, under the next header down from Treatments (sorry, can't remember the name at the moment!), even if we don't all have bone mets.
Whichever chemo you decide on, it might be a good idea to also follow the thread for that chemo -everyone generally has lots of usefull tips for coping with that particular chemos se's (side effects - unfortunately, you will soon become horribly familiar with all the terminology!).
Hugs and best wishes. Barton.x
Hi, I'm new to this area of the forum but have just been told I have bone mets and possible liver mets. I'm triple negative. My primary was found last Christmas and i was considered Stage 1b so this is a real shock. I've never had chemo as my tumour was considered too small at primary, so I had lumpectomy and rads. My question is: I'm going to have chemo next week and I've read that a lot of triple negative ladies have Carboplatin. My onc is suggesting Xeolda and Capecitabane. How can I find out if she's right? Is this combo because I've never had chemo before? We see the onc tomorrow for the final decision and I'm trying to learn as much as possible. Many thanks for reading this. X
That's great, Anneemay! I hope the lower dose means you don't suffer those nasty effects again!
Yes I will be seeing my oncologist in January so I'm anticipating that I will continue on the Cape but on a lower dose. Ann xx
Oh, Anneemay, so sorry to read you have been so ill! But glad you are now out of hospital and feeling slightly better - I hope everything improves soon. Are you going back on Cape (because of good results) when you are over this hump? Hoping improvements continue.
Haven"t been around for a couple of weeks as I was admitted to hospital after having a urgent appointment with oncologist. I had just started my 3rd cycle of Cape on the Thursday evening but by Sunday morning I felt so unwell with the diarrhoea and vomiting I contacted the oncall nurse and advised me to stop taking the Cape. I was not eating as I didn't feel hungry and was gradually losing strength to get out of bed.
I am now home after having I.V fluids to rehydrate and correct my electrlyte imbalance, C.T scan and colonoscopy. The good news is that all investigations revealed no problems and that my pleura mets had improved on the Cape. So now have just got to getter over this blip and let my tummy settle down as it still is not completely right. I have also got oedematous arms and legs because my albumin levels are low so now on a high protein low fibre diet with no alcohol. Still it"s good to know that I will get through this and it is only temporary. Ann
That is excellent news, George! Wow - personal service from the consultant! You are lucky. You now have a good plan - here's hoping you can rest easy now for the next couple of months.
Good luck withthe Cape.
i agree with Stillhere.
they are obviously looking after youxx
So pleased for you, George, now you can relax and enjoy Christmas! You are honoured having a personal call from the Consultant, they are obviously giving you some thought and it's good to have a definite plan of action. Have a good week! xx
Hello Georege, yes, was given a 6-8 week break when I last saw Onc on 1st Dec. Mainly due to very sore fingers, but also to the breathlessness I have been having. I have another appointment to see Onc on 12th Jan to review things. I had completed 14 cycles since restarting Cape early this year.
Hugs. Yes, damp and gloomy in "sunny" Devon, too, today!
Hello George, yes, you are correct - I did have a break of several months. I was then on Exemestane during the Cape break, but it stopped working (I'm apparently only mildly hormone receptive now), so was put back on Cape. Apparently they had been considering putting me on Vinelorbine, but when I asked if I could return to Cape because it had worked so well for me originally, they agreed. So I still have Vinelorbine in reserve. During this current break, they haven't bothered putting me back on Exemestane as it didn't work previously.
Hope I haven't waffled for too long. Good luck, George, with whatever you decide to do.
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.