Ps by saying I am “challenging” my Oncologist, does not mean that I am rude/loud/shouty etc! I try to be assertive and want my test results and to be treated as an adult. He doesn’t like that.
Just thought I would chip a couple of comments (particularly to reassure Happyfeet).
(1) As to whether Cap works for bone mets. My understanding is that Cap is less effective on bone mets than visceral mets. However, that does not mean it is completely useless on bone mets (only that it is not as effective). All it means is that Cap works less well on bone mets than visceral mets.
(2) Whether chemo in general is any good at reducing bone mets. My understanding is that the most effective chemo for bone mets is Taxotere, but as many will have received FEC T before Cap, they will have already had Taxotere (if not it might be worth asking if it would be an option). Again, my understanding is that the reason those of us with bone mets are put on Cap, when it is not the best chemo for bone mets, is because our disease has progressed while taking other treatments, and there is a possibility that cancer cells could be lurking unseen within organs (that was the explanation given to me by my BC Nurse specialist anyway). So taking Cap, is not a completely futile exercise.
(3) As to options after Cap. If it was me, I would ask for a second opionion to review the treatments I have already received, and to establish if anything has been missed out (for example in my case I have received FEC, but not FEC T. Neither have I had any anthracycline chemo’s, which I think they are supposed to prescribe before resorting to Cap). I would also consider having a biopsy of secondaries, to see if my cancers receptor had changed again. Because cancer that has gone from, for example, ER+ to Her2+, can then go back to being ER+ again, or Her2- or ER- or triple negative. Obviously if cancer has gone from being ER+ to Her2+ then Herceptin or Lapatanib would probably be required, but if it had returned to being ER+, then maybe endocrine therapy might be suitable again.
(4) Happyfeet, you’re dead right to be assertive in my opinion. Personally, I think anyone in this day and age who still thinks doctor knows best, and will always give the treatment required irrespective of cost needs a reality check. In my experience, specialist doctors have a very narrow expertise, and are not always aware of other/new treatments - and even if they area aware, they frequently fob patients off, because they have budgetary constraints. In addition there is a layer of bureacracy that prevents doctors from taking unilateral action (for example if a doc prescribes something NICE say shouldn’t be funded they have to produce a written explanation for their actions). My tip though is to use assertiveness strategically. Only ask a question verbally once. If it isn’t answered properly, then put the question in writing. Doctors are very litigation savvy these days and know that they have to give an honest answer in writing. Also they are stuck for time, so writing is time consuming, and teaches them to answer questions properly first time round.
Ann - you’re right it would help if the oncologists could agree on treatments. No wonder people want to transfer hospitals. I also find SEs often worse on rest week.
Lollypop59 - hope you continue to have minimal SEs
Nina - hope you get better results on vinorelbine if you have to switch.
Happyfeet - your previous onc sounds awful. They should treat us as adults and have a bit more compassion. I’m sure there are more options out there than eribulin as it sounds like you have mostly had hormonals before.
Lemongrove - I think cap is often combined with tax. I had FEC-T and developed skin mets within weeks of finishing tax so guess my onc doesn’t think it would be effective for me to take it again.
I get the impression cap is often the first treatment of choice for secondaries because it is relatively doable, but not sure whether it gives the best results. There seem to be too many ladies with bone mets taking it for it not to be effective, they wouldn’t waste money on it if it wasn’t going to work.
Capecitabine has kept me going for years. I have been on it and off it and on it again many times and each time I re-start it my tunour markers are halved…yes halved. I know it works for my bone mets and the ony time I stopped it was beacuse I suffered badly with Planer Planter syndrome ( sore hands and feet in everyday words). Now that my dose has been reduced to a amanagable dose I will probably remain on this drug for as long as it is working for me. I must have fist had the drug about ( guessing here) 7 years ago. Hope it continues to work for all of you, Love Val
Hi all, I am now about to start my 8th cycle of cap. SEs not too bad but not sure if working as bone pain is getting worse. Due to have MRI soon.
I have been asking my onc for a biopsy, but he keeps fobbing me off saying they can only do a bone biopsy and that it will be very difficult to do and very painful.
I have read what Lemongrove posted so I am keen to have a biopsy as I havent had one since 2004 at my original diagnosis, but I am not keen to go through a very painful procedure. Has anyone had a bone biopsy?
Rachel (no longer 37 now 41 )
Rachel, I understand it is painful, but you may not need a bone biopsy if you have any node mets. I have bone mets, but my biopsy was done on chest nodes, which wasn’t painful at all.
Val, it’s very reassuring to read that Cap has worked for your bone mets.
Has anyone experienced a tickly cough as a SE of Cap? Since starting it I’ve gradually developed an irritating cough, and the Roche info leaflet say’s a cough is one of the rarer SE’s (I’m obviously just a tad worried that it might be something more sinister).
Happyfeet - When you got your second opinion from the Marsden, did you actually have to go there or was it just a paper exercise?
Your onc sounds dreadful! At my three-weekly appts, they are all about how I am coping with the drug and what my SEs are and whether I need to be prescribed anything to help. They answer all my questions and give me as long as I need.
Mind you, I did have a different onc originally and was not happy with the way she handled my secondaries’ diagnosis and asked to change to someone else.
Do you have to change hospital? Couldn’t you just ask to see a different oncologist, or do you think it is hospital policy to treat all patients the way your current onc does? Good luck with your search. We all need to be treated with respect and kindness.
Ann x
Rachel, good question about long-term effects of bisphosphonates. Very relevant to me!
I hope it’s OK to start a new thread about this, so that folks who are not on Xeloda will see it.
breastcancercare.org.uk/community/forums/living-breast-cancer/long-term-bisphosphonate-treatments
Thanks Lemongrove, I do have some chest nodes but Onc says they are between my lungs and quite difficult to get to. But I am having a review at royal marsden soon so will ask when I see him. I always feel my onc is relunctant to anything other than standard treatment for me, but I have started to email him questions and requests and he seems to respond to these better than he does when he sees me in clinic.
I have also been on bisphosphonates nearly 8 years, has anyone else been on them that long? My onc seemed surprised when he realised this the other day and commented that he was also surprised I didnt have any kidney damage!!
So I am also wondering about Denosumab which is an alternative which has just been approved by NICE, anyone tried this?
Thanks
Rachel
Hi Ann, I am being seen at Royal marsden. I asked to be referred back in 2009 for a second opinion and I am now going again. My onc didnt want to refer me but I feel the need to have a second opion on my treatment. For my own peace of mind and to know that I am having the best available treatment.
Everyone is entitled to a second opinion under the NHS and you can choose where you have it.
I hope this helps. I did have to put in writing to my onc because everytime I asked him in clinic he fobbed me off.
Rachel
Rachel when the medics carry out a biopsy the chest nodes, they do it by ultra-sound guidance, so they can see where they are going. If it was me, I would write a letter to request a biopsy, explaining concern that cancer may have changed it’s receptor and that this may have an implication for treatment. Doctors are very wary of possible litigation, and the letter will create a record, which might be damaging for your doctor if they refuse your request, and it later turns out that your cancer has changed it’s receptor (they would then have to prove that a biopsy was not possible).
Thanks for all your comments ladies. Val you have contributed so much to these forums over the years and help sustain many of us , yet I know you have your bad times too. This is the double-edged sword of forums like these, great to hear the success stories but difficult to read of disability and the loss of some members. Lemongrove, thank you too for your knowledge and passion, you have been a very supportive member over my years with BC (Dx 2009). I find it very sad that so many of the long-standing members have all but given up with the site now. it was a lifeline to me thru my primary treatment, and now as a secondaries patient I still need and want to give support. Even though most of us do not know each other, you start to feel that you do and wonder how people are getting on. I have joined a private FB group which is great but I still wish BCC could get this forum back on track.
I saw my Oncologist yesterday and my CT scan from 3 weeks ago was not reported on so more waiting. Seemingly no appreciation of the anxiety caused by waiting for results. Last bone and CT scans 3 months ago showed progression in spine and ribs so we are waiting on the results of this one to see if Capecitabine should be stopped and to try something else. He also said he had not written a letter to my GP after my appt 3 weeks ago, when he had to address my complaint about being given my chemo prescription in the waiting room by a HCA when he hadn’t bothered to check my bloods. My white count was too low for chemo, I only found out when phoned later that evening by the duty pharmacist. So, very conveniently, there is no written record of the c - up or my gripes about not getting test results or letters. No record of my nails coming off, the lack of privacy , no record of him telling me I only had one chemo option left. He said he would put me down for discussion at the MDT meeting next week, but he said that last time, and he will be away next week so how I can be discussed without him there I don’t know. He did order an urgent MRI of my spine as my leg went numb on Monday. He was organising this and asking me questions whilst my husband and I were stood like lemons in his office, no chairs for patients to sit, and one HCA was talking on the phone about another patient whilst another HCA kept coming in and with notes notes. I have never treated a patient this way in all my 30+years as a nurse. I don’t want to change to another Oncologist at this hospital as I already changed last year when my then Oncologist told me my CT scan was clear then called me back a few days later to say I had extensive mets to bones. Her attitude was that of hopelessness, which is why I had a second opinion at the Marsden. I think part of the problem with my current hospital is that it serves a very large county in the East Midlands and they are overwhelmed with patients, but that is no help to me. The constant battle to get decent care is so wearing. Must get that transfer underway, just wary of finding the same crap service. Best wishes end thanks to everyone x
Bump. Frustrated. I want people that have helped me know that I have responded to them, but the thread just gets lost.
Got it Happyfeet. I saw your post on the other site too. PM me if there is anyhting you are worried about. I know just how that feels as I didn’t know anything about it myself because when I started Biphophonates the paperwork did not show the contra indications as they did not know aout them in the dark ages of the year 2000. So new things are being found out all the time.
Mrs Blue, I have sussed it our now. BCC are puting details of all the new posts in, even if 10 of them are the smae subject because so many new people have swithced to other sites! The want to show that there are still loads of people using the site when in fact there are fewer and fewer but any NEW person coming along will think there is lots of help out there when in fact there are just a few pages. Or am I just too synical?
Lemongrove, keep up the good work. No I have not had an usual cough but my nose is always running. Val
Happyfeet, if I were you I would go to a London Teaching Hospital such as the Royal Marsden, Charing Cross, or St Mary’s ( but do be careful about who you ask to be referred to at Charing Cross - if you like you can pm me for details of my Onc). I know you live in the Midlands, but the train journey isn’t too long is it?, In any case, you wouldn’t be going there everyday. Also, I believe that if you are in receipt of certain benefits you can get help with your train fare (ask Lucinda about this because I recall her mentioning it).
The other thing is, I don’t understand why your medical team are giving such pessimistic and defeatist information. I was under the impression that people whose cancer is confined to the bone can live for many years (look at how long people like Scottishlass, DawnHC and Belinda have been living with secondaries). I know you’ve had progression while on endocrine therapy, and possibly Cap, but maybe thats because they haven’t hit on the right combination yet - or perhaps your cancers receptor has changed. I think once you find a specialist who knows their stuff, and is willing to pull out the stops for you, things will pick up. But you have to be pro-active.
I have just started a thread about bisphosphates and Omeprazole, which ladies on Xeloda may find interesting:-
I don’t know if the Daily Mail article has been discussed before because there is no search facility on this site any more!
Ann
Having problems with this website , how is everybody ? I have just started cycle 5 of cap , and I had a chest x ray and things have shrunk , I have a ct scan in 3 weeks.
Louise
Brilliant news, Louise. Good luck with the CT scan. I am having one at about the same time.
Ann x
Exccellent, encouraging news Pinkylou. Long may it continue.
Louise - great news on the shrinkage. Hope the CT scan for both you and Ann is similar.
Lemongrove - hope your cough is better. There seem to be a lot of people with colds just now, so it might be nothing to worry about. I’ve not got a cough just runny nose.
Val - yes I find the new post format frustrating as well.
Happyfeet - also posted on the other site. Good luck with the transfer. Hope you get better care.
Rachel - welcome to the thread. Hope you can get your biopsy sorted out.