Ive posted on the site previously and have always found the responses valuable in helping my mam make decisions and cope with her illness.
My mother was diagnosed for the 2nd time with bc in 2002 and since then she has been treated with armindex, tamoxifen, navelbine and faslodex. She has secondaries in her chest wall, ribs and spine. She has had 2 month break from treatment as she was admitted to hosp with an infection and it was felt that it was best to give her a break.
At the latest appt with onc, he advised that she could try again the navelbine as she never really got a good run at it or again try capacetabine (she tried this for a week - but had bad diahorrea and burning feet, however, he felt her best chance would be to try taxol. He did say, and he has never said anything ike this before, that without any treatment, he suspected she would have a year left.
Has anyone got any advice that would help her to make a decision or has anyone else been faced with a similar decision and what type of things did they consider.
I know its her decision and i dont want her to feel any pressure from the family to have further treatment, i just want to make sure she has enough info to decide.
Any help would be appreciated at this tough time.
Best wishes
Claire
I suspect it all depends on how your mum feels about more chemo, I know this is a really hard one for close family to accept. Am I right in thinking she also has spread to liver & lungs as well as her bones? While she has had the 2mths break from chemo do you know if the cancer has got worse? I think a few of the ladies here have been on capecitabine (xeloda) for some time and kept very well on it. I didn’t when I had it - and was stopped after a couple of cycles. I have been told that people to well on taxol re side effects - I don’t know if any of the others here would agree with that. I know I am likely to find myself in the same position - have had a lot of different chemos over the last 20 years and my consultant is talking about putting me on weekly taxol. So much really does depend on how your mum feels about this and it sounds like you have a good relationship with her and might be able to talk about this. I assume she does have one of the bisphosphonates for her bones.
Do you go with her when she sees the oncologist? I wonder if it would help to ask for a bcn (breast care nurse) to go in as well so that she can help you and your mum talk over any options. Also do you have a Macmillan nurse you can talk to - they are very helpful and aren’t just there for ‘end of life’ matters. Mine is a tremendous help and comes to see me regularly or phones to see how things are. If you don’t have one that is worth asking your oncologist to refer her to one in your area.
Hi Dawn. Thank u for your response, i forgot to mention that mam has been having trouble with breathing and is waiting to have her lung drained. She has said on a few occasions that she cant face iv chemo and that she may mention to the onc that she would prefer the oral chemo as a potentially lighter option, but im not sure this is the case. I think i will mention to her bout speaking to bcn or mac nurse to maybe say some of the things that she doesnt want to talk to us about. Thank u so much again.
Please don’t fall into the trap of assuming that because a chemo is in tablet form, that it may be an easier option. Of course, in some cases this will be true-but not for everyone. I suffered horrendously on capecitabine-and had no qol whatsoever (and it didn’t work). Yet I managed taxotere and carboplatin with minimal side effects.
The final decision really has to be your Mum’s-in her heart she will know what she wants to do, and what she is prepared to try. I would try and avoid too many questions re prognosis-no matter how good the onc, all they can do is give a very rough idea as to possible timescale. Some will far exceed this-others will find they deteriorate in a matter of weeks. However, going by her onc’s opinion, it could be that she would rather decline treatment thereby not having to contend with the side effects-which at times can be as bad as the illness itself. As Dawn said, this is hard for families to accept. But really,no matter how hard it is to accept,with such widespread involvement (liver, lungs and bones is pretty extensive-same as me!),she could be facing many months of potentially draining treatment, and may feel that it’s just too much.She’s pretty much hinting at this with saying that she can’t deal with iv chemo. Good luck
Hi Elaine. Mam didnt ask any questions re prognosis, i think she feels that it wouldnt necessarily be accurate and she would be focussing on the time given( which she is!). It is completely her decision and were trying to support her as much as we can. Ive picked up that the different treatments have different effects for different people, the difficulty for everyone is that no one knows what effects theyre going to feel. Thanks so much for your comments, its such a difficult decision for her and i will pass on your advice as well as take it on board myself.
In addition to the valuable support you have here please feel free to call our helpline on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2. Here you will find further support and a listening ear, your Mum is also welcome to call if she feels it would help.
Ah-when you said her onc reckoned she had about a year, I assumed she had asked the question. It’s quite appalling if he ventured this opinion without being asked-I would be really upset if that had happened to me. Much though I know that I have a hugely reduced life expectancy, I really don’t want it spelled out whilst there are still options which may buy me some time.
As you said-everyone is different-pain thresholds differ,mental and emtional instability can cause additional problems-which again underlines the need for any decision to be made by the patient. I fear that when things progress I will feel obliged to keep on trying in order not to let my family down.I have always felt that the family of a patient have almost as difficult a load to carry as the patient-as patients all we can do is accept treatment, and try our best. Our loved ones have to watch us suffer, and can do little to ease the suffering-we all suffer with this disease, not just the patient. I hope she can make a decision with which she is comfortable-and even if she declines treatment at the moment, she can easily change her mind in the future, should she feel stronger.
Hi. Thanks lucy. I will bear that in mind.
Elaine - The onc did volunteer the information and ever since it has been something which has continued to return to my thoughts and i would imagine the rest of the families, prior to that mam was told that her cancer was a very slow progressing one. I know that my mam looks to me for support and advice and i want to help her in anyway i can, but i know deep down i want her to try further treatment, but im scared of influencing her if its the wrong choice. Her onc advised her he thinks taxol would give her the best chance and he didnt want her to find she had wasted her time with the navelbine or capacetabine. Im not sure if i mentined, but she never got a good run at the navelbine the first time as she cut her leg and had an infection, so had to stop treatment, then she restarted and got a different infection and had a break. When she initially started the navelbine, she definetly had less pain. Thanks again.
Mam has been to see the onc and he has advised that taxol would be her best option and a less severe option would be epirubisin? She has an appt in the morning for a lung drain and has a couple of weeks to decide re the chemo.
I have just caught up with your post and just want to say how lucky your mam is to have such a loving caring daughter. You are so right that it is your mam’s choice and helping her get all the information to make her decision without trying to influence her is so loving and thoughtful.
I have read that some women have very little trouble with weekly taxol and if she makes this decision I do hope she is the same. I do hope things go well for her.
Thanks Anne - Im trying to make sure i do all i can to help her. Im just so confused by everything that is happening. Im still confused as to why my mother has never been suitable for herceptin, she was always told that it was because her cancer wasnt aggressive, well surely it is now ?
I might place another post asking for experieinces of epirubicin. Mam is having her lung drained today, hope that gives her a bit of relief.
Unless she’s HER2+ giving her herceptin would be useless. It would be like trying to treat non hormone receptive cancers with hormonal treatment. Many types of BC are aggressive-but herceptin is only given if she has tested positive for this. There appears to be a lot of confusion about what herceptin is for-it would take an oncologist a few minutes to explain why it is not being used, and thereby save people worrying that they are missing out!I’m sure if she was suitable for this treatment, she would be given it-the testing is done routinely.
Hi Claire, just been reading through these posts and thought I’d join in. I have secondaries in my liver and spine and had taxotere which I found quite easy to cope with once it was in my system, although for me it didn’t work very well. I was not given Herceptin because I’m not HER positive and as Elaine says it would be a waste of time. I am however, extremely receptive to Arimidex which I now take daily at night (to avoid most of the aches and pains which are associated with it). As Elaine says, they must surely have tested your mum for the above, so next time she sees anyone, ask the question. Initially, I was led to believe that I only had 3 months and I had more or less accepted that. Now though, I just assume that I’m going to live for years as I feel so well. I wish you and your mum the very best of luck, she’s lucky to have such a loving and caring daughter.
Hope everyone else is well today. Take care, lots of love, Dianne x x x
Hi. Thank elaine and dianne. Its difficult when you only get 10 mins or so with the onc and no matter how many questions you write down, there are still many more which come into your head, thanks elaine My mam had armidex and it worked well for her for years, so im pleased this is positve for you dianne. I have everything crossed that mam makes the right decision and she has more years ahead of her.
Hello. Hope everyone is well . Mam has an appt with onc this wednesday to receive her ct scan results. Its been a bit of a rough week as mam had her lung drained and at the same time her lung was punctured, she was initially in a lot of pain, however this has improved as has her breathing. She has however been feeling very weak and has been stumbling to the point of falling over today and blackening her eye. She needs to make a decision re chemo, but i have a feelibg the onc may say he feels she is too weak. Has anyone else had stumbling symptoms?
Hi Claire, I personally haven’t had any stumbling problems although I have felt a bit dizzy the odd time and have had to grab onto something. I’m so sorry to hear that your Mum is having such a bad time, I’ll be thinking of her tomorrow and keeping everything crossed for you both. Please let us know how you get on and what the outcome is.
Take care of yourself and your lovely mum, lots of love to you both, Dianne x x x x x
Hi. Thanks Dianne. Mam got her ct scan results today as as we all suspected, the cancer has spread, altjough the onc said it was a slow progression. She had an xray and there is still either air or fluid in the lungs, so she has been taken into hospital for a drain and possibly it sealing?? Once this is sorted, she then still has the decision whether or not to have chemo. Its been a stressful day waiting around different hospitals and its so unsettling knowing where she is for tonight and a few more days. Hope everyone is ok. Take care.
Hi Claire, I’m so sorry to hear that your mum has got a spread of this crappy illness. I’m sure that she will feel much better once she has had the fluid drained. I don’t know what to advise re the chemo, it’s such a personal decision. The only thing I can say is that if it was me I’d take whatever they offer. But everyone is different and I hope and pray she makes the right decision for her. Take care of yourself hon, you are a lovely daughter and I know how worried you must be. Thinking of you both and sending lots of love and hugs. Dianne x x x x
Hi. Thank you again for your comments. Im wondering if anyone has had experience of a lung drain? What has happened when theyre unable to remove all the fluid. How do people acheive relief? Also, has anyone had experience of havibg a stent fitted for difficulty swallowing?
Hi Claire, can’t help with the lung drainage or stent unfortunately as I’ve never had them, but from what I’ve picked up on here, I think if they don’t get all the fluid at once, they do it again on another day. Most people usually get huge relief once it’s done.
I don’t know anything at all about stents pet, sorry.
I hope your mum is feeling a bit better today and that you both have a peaceful and painfree weekend.