Hi all and Fran - sounds interesting, must have a look at that. I had my appt with Onc yesterday, I’m still off the capecitabine, today I had to go and see a Cardiologist and I had an ECG. Heart looks Ok from the results of that but they still want me to go and have further heart tests. Something in the capecitabine made my heart go bananas and they need to know if I have a heart problem that I’ve never been aware of before. He even suggested that last years chemo might have caused something to go a bit wrong somewhere (well - apart from not working!!). He said that if tests came out OK they might be able to give me a heart tablet that will relax the heart and will be able to go on the capecitabine again, which I am hoping for. I am so sick of getting bad news after bad news, I don’t know how I manage to keep a smile on my face, but then I think how lucky I am to have such a fab family and friends and YOU LOT!!! Happy Friday Evening anyway, I must be getting old cos I’m looking forward to watching Alan Titchmarsh!!! xxxxxxxxxxx
Snap Wannee - off to see Alan now and ideas about gardening and food!!! What a fun Friday! - glad others are sharing in the same way!
Have posted more info on role of liver in digesting food in the “diet and research” thread - had not realised how important it is and presumably mets can upset functioning along with chemo so need to help it work as well as possible. Seems like a very health way to eat anyway so am “on it” with my OH which makes cooking easy.
Hi everyone,
My onc has said he is going refer me to Mount Vernon for Cyberknife rather than RFA on my liver. If suitable I could have spine mets done as well as liver as the disease is stable at the moment. I am not that confident that I will be suitable for cyberknife as mets in spine may be too big.
I will keep you posted with developments. Its taken an age just to get this far.
Alex
Semms a silly question Alex but is your hospital in England or Scotland? I am interested in the cyberknife treatment and have been following the threads about it. Val
Hi Val,
Sounds like you had a good holiday. Your question is not a silly one. My hospital is Cheltenham General Hospital, Gloucestershire, England.
Alex
Thanks Alex. I think there is an area in Glasgow called M V so thought it may have a hospital there. But interested how you get on. Will keep in touch. Val
Hallo everyone
just found this site, and discovered an entire thread devoted to bone and liver mets. Mine were found late last year and I’ve already failed to respond at all to the Thyme trial, which was desperately disappointing. Now on oral Xeloda, which at least is easier to cope with than all the protocols of the trial, it’s good to see how others of you have kept going on Xeloda and managed a life. So shocked this last February when a junior doctor happened to mention the mets in my liver, which i knew nothing about.
Is there anything to look out for on this drug? Only on my first two weeks, with some nausea and tiredness. Is there a steroid component in the drug, does anyone know?
Ali
Hi Ali,
Welcome and sorry you have had to join us. I have found this site supportive and helpful. There are a lot of women on here who have been diagnosed with secondary BC who are well and continue to live full and active lives. I find them inspirational and this gives me a sense of hope. I was diagnosed in Nov 2008 with liver and bone mets. I am on herceptin, tamoxifen and pamidronate.
The way that you found out that you had liver mets is quite shocking. Do you know how long you have had them?
I have never had Xeloda, however there are a lot of women on this site who are receiving it. One member has been on Xeloda for 7 years, she is affectionately known as the Xeloda Queen. One of the common side effects associated with Xeloda is hand and foot syndrome ( sore hands and feet). There are lots of tips on other threads about how to relieve symptoms, udderly smooth cream and flexitol seem to be popular. I think the thread is called “capcitabine side effects”.
I don’t know about the steroids but I am sure someone will be along soon who can answer your question.
I hope the Xeloda works for you.
Alex
Hi all - hope things are going well; I feel energised and much better so hope that continues. Had news today that Capecitabine was shrinking 3 liver tumours but 4th was growing still so they want to try Vinorelbine instead - heyho have just got used to SEs of Capectiabine and am now hoping sore feet and hands disappear. But am wondering about Vinorelbine - anyone any experience of this and SEs etc. I’m having the first 2 doses (first cycle) as IV to get things going quickly and will then move onto tablets. So a quick readjustment is called for - hope the SEs are ok as we’ve just planned a short holiday at the end of next week…
Also about to have 5 rads on hip and 1 rad on spine - seems like early days for growths since I only get a bit of an ache at night so they want to hit things fast - still going with conventional rad and will hold stereostatic in reserve in case I need it in the future. Do I understand pain might be worse after rads for a few days.
Ali - hope you Xeloda is doing well for you - I only had the foot and hand problems and advice from others on this site was invaluable - hence the query now about Vinorelbine.
Am taking diet issues very seriously now - almost vegetarian and considering making that big decision as there is so much evidence that it can help and at the moment feeling so energised by healthy eating that I want to remain this way.
Thanks for any help/support/advice
Hi gals, just an update, don’t know whether you can remember I got taken off the capecitabine due to a rare side effect that affected my heart and I am about to start the “hard stuff” on Friday - Paclitaxel, or Taxol as its more affectionatley known (why does everything have 2 names???), this is the IV form of chemo with all the usual side effects including loss of hair, can’t believe I have to go thru this again when I’ve just got my hair back after last years chemo. And it means another holiday being bald. And I’ve rang two travel insurance companies today who have refused to cover me, I have a list from the Macmillan website that I am going to plough through but in the meantime can anyone suggest a company that might cover me??? Feeling a bit low today and calling upon all my positivity to keep me cheery and chirpy xxx
Hi Wannee - I’m “there with you” with the need to keep positive when facing a new treatment and all that goes with it. Really hope your Taxol works on Friday; my Vinorelbine starts tomorrow… Getting your head around a new treatment starting each time is not easy and I did like the capecitabine - it was ok for me except feet and hands but it’s clearly working on my liver but Onc not happy about one tumour so onto the next chemo… Thinking of you - and fully understanding the effort it takes to keep the focus on positives - we can do this!!!
Take care
Fran
x
Yes we can!! Had my first dose and feel Ok, quite calm actually and pleased that finally something is being done. It’s just the hair thing xx although even that has its positives haha xx
Hi all - first dose of Vinorelbine yesterday want in well (slow gravity drip in tandem with flush so it took a while) and today have felt energized and cleaned the house!!! What will tomorrow bring. Only problem is the residual foot and hand from the Xeloda - think the new chemo is really focusing on those nerve endings (why can’t it just go to my liverl???) and am in pain but paracetemol is helping - there’s always some SE to manage isn’t there.
Glad you are feeling calm Wannee - so am I; long may we continue to feel this way.
Fran
xxx
Hi Wannee
Glad your Taxol wasn’t too much of an ordeal. Have you tried MIA for insurance? I have just got accepted for 9 days in Majorca. I declared multiple bone mets and 2 liver mets, my only real criteria for travel is I have visit a GP/oncologist within 4 weeks of travel and ask them to write in my notes that in their opinion I am fit to travel. (although I am not currently on chemo, just faslodex and zometa, so I don’t know where this company would stand on chemo!)
Good Luck with the insurance, I’m sure you are really looking forward to that holiday.
Hi Wanne and Fran,
Good news that you have both started new chemo’s. I had Tax in 2008 and didn’t find it too bad. One of my liver mets disappeared completely and has not returned yet. Tax is supposed to be the gold standard for visceral mets.
I have not had Vinorelbine but I am guessing it is from the same family of chemo’s and Capecitabine as both names end in ‘bine’.
Have a relaxing weekend both and try and forget about the C word.
Alex.
SheanaY…So very sorry to say tht Sheana lost her fight last night and passed peacefully away with Gary holding her hand.
She would of been 50 next Friday and also leaves 2 teenage sons.
I will miss her very, very, much x
So sorry to hear this dreadful news - condolences to Sheana and her friends and family. Hugs to you, Karen.
Sarah.
Oh Karen so so sorry to hear this. Condolences to you all. I’m sure you have many happy memories xxx
Nicky, haven’t tried MIA but I will, thanks, only trouble is we are going to the Maldives which was planned before the bone and liver thing happened so hopefully I can get cover (at a hefty price no doubt!!). Feel great today after the taxol yesterday, Fran I was laughing at you cleaning the house, I feel like I’ve suddenly got loads of energy and got my colour back and my appetite back (could it be that steroid they pumped into me before the chemo???), so I am planning to murder a curry tonight and make the most of it before I start to feel grotty. Lush sunny day here in the North East, been to the beach with hubby and kids today and lovin it.