Hi everyone, not new to macmillan but new to this group. I had breast cancer 7 years ago and have just been diagnosed with secondary to left lung and bones, especially pelvic area. I’m feeling anxious about the treatments because I had a really bad reaction to chemo last time around. I am just about to start radiotherapy. I’m on letrozole already but will start pablocixlib and denosumib excuse spelling! Does anyone have any info or experience on how they manage side effects. I’m struggling with lack of mobility too and breathlessness when I do anything more than a snails pace. It’s all been a bit of a shock!
Hello Felon. Welcome.
I cannot help but I can assure you someone on here can.
There is also a dedicated group for your condition.
Already spelt your name wrong, sorry Felen.
Hi sorry you are here, and like Chalkdust, i do not have the answers, though i am sure others, will come along, and give you their experince, of treatments they may have had. and if any side effects.'
So sorry you’ve had to find this place but it is a good place to be if we are facing incurable cancer.
I have a very similar dx to you. SBC with mets in spine, pelvis and scalp area of skull and also in lungs. Dx was October 22. They will probably give you a lung drain when you need it. They told me to go to A and E when it got too bad but since then I have been able to book myself in for regular drains. Interesting that they have offered you RT, I was not but started straight away on anastrozole and Palbociclib and denosumab injections for bones. So far the side effects have not been too bad. To start with my immunity was low and I got one cold after another and they delayed treatment because of it, but since Christmas I’ve been fine. Get very tired, sleep 10 hours at night and still tired in the day. In the early days there were times I slept most of the day so be prepared for that especially if you’ve been busy the day before. My nerves have started to get a bit tingly and feet are always cold but I was like that before. Skin is also spotty. These are all mild symptoms and overall I feel lucky that there these treatments available now. I’m 54 and have decided to retire but might feel differently if I was younger. I had already resigned from my job when diagnosed and was working my notice so don’t get any sick pay but have managed to claim pip and ESA so look into that. This forum has been amazing, it’s like having a group of friends to chat with and it already feels like a family. Once you have the lung drain you’ll feel much better. My husband kept saying we’ll take one day at a time and that’s what I’ve tried to do which has helped. Hope that’s been helpful and it would be great to keep in touch as we have such similar dxs
thanks for replying. I wonder why you weren’t offered rt. I was told it would help with the pain in my bones although initially it will make it worse for a few weeks. I am getting 5 sessions. I had it for 4 weeks first time around but after the nightmare of chemo I found it not too bad. First time I had a lump in my left breast. Had lumpectomy, chemo, rt and anastrozole. I was taken off anastrozole after a few weeks cos side effects were too much but I think that’s just because I was wrecked from chemo! This time around I was sent for chest X-ray because of repeated chest infections and that showed up 1 large growth and lots of little nodules in lungs. Sent for ct then pet scan then bone biopsy that showed it in bones too. I thought it was arthritis! But I am 66 so just retired. You don’t get mobility element of pip for any reason after retirement! I got the standard rate of daily living allowance from last time but I am hoping it will go to higher rate.
What happens with a lung drain? I don’t start the cancer drugs until after rt but I already feel very tired all the time. Were you like that? Like you and your hubby we are living one day at a time. I have the life of Riley really because he does pretty much everything and I have a daughter that comes in and gives house a good clean every week.
Im so glad to be able to come on here and chat to people like yourself. Family are great but it’s only people who have it that really understand the nitty gritty of it all.
Yes Felen it’s true that only people on here truly understand such a huge support. With the lung drain, they ultrasound your lungs and find where the fluid is collecting then go in through your ribs in back or side with anaesthetic. Then they insert a small tube to drain the fluid off. Lots of local anaesthetic so it’s not that painful. Bit of coughing afterwards but then you start to feel a lot better. The Palbociclib is working on me now so I only go every two months for a drain. They did talk about an operation on my lungs or a permanent drain but that is not needed now. What have they said to you about having a drain?
My story is very similar to yours , had a lump 11 years ago, had op, chemo and RT. Was a shock when it came back and only went to docs cos I felt I couldn’t swim or run far anymore and I had a slight cough. Couldn’t feel a lump though, it’s tiny. I don’t have much pain in bones so that might be why rt not offered this time round.
Good luck with it all Felen