22-10-2018 06:57 AM
21-10-2018 07:04 PM
Pinzia, Your communication is fine. The ONJ is scary stuff. I just started "bone juice"! I'm on a drug called "prolia". It is given every 6 months. Supposedly bc you don't get it monthly ONJ is extremely rare. I hope so! I only agreed to it bc my back broke from hic-ups.
Everyone has their limits. I wouldn't want to continue if I was suffering. I have told my hubby I will not ever do whole brain radiation. He is like yes you would. I told him again NO, never!! Hope I don't ever need it! I'm 64 and know I'm lucky to have got here. I think we will all know when we have had enough.
Big hugs! FF
21-10-2018 06:20 PM
I think that your daughter is being a bit hard. We are not here because we all have brilliant communication skills though yours seem fine to me. If it helps, stay around this forum. many wouldn't be without it.
21-10-2018 06:09 PM
Thank you for this - exactly! First of all, I’m so relieved that you refused the bisphosphonates. I do have ONJ and am currently waiting for my teeth to, very painfully, fall out by themselves because they can’t risk surgery. My dentist wants a doctor’s letter to indemnify him before he continues to treat me. When I was first diagnosed, the link between bisphosphonates and osteonecrosis hadn’t been established so no warning was given. I am so cross with myself for not coming off Zometa in 2016 when I first had problems but I don’t think it would have made much difference.
I agree completely that mid 60’s is a good run, even though I’ll have to forego grandchildren. Yes, if I were younger I would have everything going and there’s always the chance of more breakthroughs.
I wish you all the best - for you and your husband. My husband has kidney failure but says seeing me in pain is much worse than anything he goes through.
21-10-2018 05:47 PM
Hi funny face
I haven’t gone into details because I really don’t want to depress anyone who’s doing well, but I probably should have done so. My daughter, who’s a copywriter and on-line journalist, has tried to ban me from social media because she says I’m rubbish at it, and I think this proves she’s correct.
I have had secondary cancer for a number of years and have been on similar treatments to you with varying degrees of success, just like you. Two years ago the cancer mutated and the treatment, although successful as far as the oncologists are concerned, has taken so much out of me, I’d rather let nature take its course, although I have just agreed to stay on Fulvestrant for a while. I have to admit, some of the drugs were experimental, although with good results in America, but apart from the Fulvestrant, there’s nothing left to try. The list of ailments is lengthy. My pally nurse probably summed it up when she observed that I am living in a world of people who take walking and breathing for granted, whereas I can do neither well.
i think my point is (my daughter would despair at my communication skills) that just because treatment can prolong life, it still has to be worth living.
21-10-2018 05:20 PM
I get it, completely. I might be wrong, but maybe there have always been elements of your current attitudes/feelings about your quality of life, through your adult life. . . . .
I am 63. Found The Lump by chance in March, had WLE and axillary node clearance in May, and 20 zaps in July/August. On Letrozole now. Take the calcium when I remember.
I don't think I am 'out of the woods' as it is a grade 3 - chemotherapy was 'recommended' but I declined, because that is 'me' - my 'head' and chemotherapy were never going to be partners - and I also refused the bisphosphonates as the thought of the 'risk of jaw necrosis' was the decider for me - I don't have great teeth anyway.
It's always been about quality of life - for me - but I am lucky to have got this far in life and for this to land in my lap at this late age. I do think, personally, that 63 is a pretty good run with good health?
My husband discovered he had prostate cancer at 48. His father had had it so there was the genetic link. He had a prostatectamy. He thought he'd caught it in time, we both did. Then gradually the PSA levels were creeping up again. So radiotherapy. CT scans. So many blood tests his veins are shot. And now, 17 years later, he is still here - but his quality of life has been pretty damn awful, as he is now on the hormone injections that make a bad-tempered man absolutely foul, he gets hot flushes, sweats terribly, has put on far too much weight, and his legs are heavy with all the appearance of lymphodoema . . . . . .
My heart goes out to the young women in their 20's,30's, 40's, 50's who join this awful club. I fully understand why they would throw every possible medication and hope at it. But for me, I know that I won't be like that. I found the Lump by chance. I'd declined all mammogram routine letters. I had surgery because I knew I had to do 'something' and that I really didn't have a choice, if I was going to get the rest of my life into some kind of order. . . . .
I hope I haven't said the wrong things and upset anybody - but this is just me.
21-10-2018 04:21 PM
Pinzia, We each have to make our own decisions. I don't know how old you are, what meds you have been on etc. I do find after only two years of treatment that their must be more options out there for you and their SE might not be so bad. I have been in treatment for 13 years. One of the easiest drugs for me was vinorlebine. Gemcitibine was my worse. Letrozole was difficult. Each of us has different thresholds of what we can and can't tolerate. I wish you the best with your choice but probably would suggest giving other treatments a try. You won't know if you don't try. Hugs and good luck! FF
21-10-2018 01:05 PM
Thank you all for replying and your good wishes. I probably should have taken my husband’s advice and posted this in the ‘End of Life’ category because I am further into my journey than most. I didn’t post in End of Life, however, because I don’t believe it is, necessarily, the end of my life. I think I still have a bit of living left to do - hence the “gin and tonic” reference. The palliative care team can supply similar outcomes but without the hangover!
Yes it is a personal choice - and not one that I have taken lightly.
21-10-2018 09:13 AM
21-10-2018 06:58 AM
19-10-2018 06:51 PM - edited 19-10-2018 06:54 PM
Not sure I can say I fully agree with you, especially as you haven’t said much about your condition or diagnosis, but I think I nderstand your reasoning.
I was diagnosed straight to stage 4, 3 years ago, and have only been on Letrozole and Denosumab since diagnosis which I have luckily found quite tolerable. I have given much thought to what I will do when progression occurs and have come to the conclusion that although I lean very much towards not having chemotherapy as such, I really don’t think I will know how I will feel until I’m in that position, but don’t think I would go down the countryside with gin and tonic (no matter how good that sounds!) route without doing much research myself about all the options available to me. I certainly agree that many doctors don’t appear to have much faith in it as I remember reading an article many years ago, long before my diagnosis, where it said they’d asked 100 consultants what they would do and over 90% said they would not have treatment in the UK, I stress it was a long time ago and I believe treatments have much improved during that time. It’s no secret I believe in holistic care and would certainly explore all options before I agreed to anything, and would certainly want to know all the facts and figures too!
One thing I certainly agree with you about is quality of our lives, and that you should do what feels right and make whatever decisions you are comfortable with, not your Oncologist, but believe they should be well thought out and informed choices, after doing your own research which it seems you have done. I’m lucky that my Oncologist is open and willing to discuss things but I appreciate not everyone is as fortunate.
Take care, Kate xx
19-10-2018 04:37 PM
I have been debating whether to post this for a while. I have recently made the decision to cease all invasive cancer treatment, in favour of palliative care. The Professor of Oncology who headed up my team pronounced himself “shocked and horrified” because in his view, the treatment was working very well.
For the last two years my life has been made miserable by cancer treatment and after much debate, heart-searching and a lot - and I mean a lot - of reading, I’ve made my decision. I recently read an essay by a doctor who said that if he were given a diagnosis of “incurable and inoperable” he would move to the country, stock up with gin and tonic and let nature take its course. He believed most doctors felt the same.
My GP (whom my oncologist didn’t like me consulting without his permission) has put me in touch with a palliative care team from a local hospice. Having people visit me (yes - they come to me!) and only focus on how I’m feeling, instead of ticked boxes and two hour waits for five minute sessions, is bliss.
I won’t bore you with all my details but if you’d like to discuss this more, I’d welcome hearing from you.