I've been put on Letrozole 2.5mg pill and given Zoledronic acid for my lumg, bone and lymph mets. I am ER+ but I'm still waiting for my HER2 FISH result. Is this the normal treatment plan? I'm having bad nausea and shoulder pains and it has been only one day 😞
Side effects seem to vary wuite a lot, I'm lucky as I have very few, other people I know couldn't support them at all. With Palbociclib the worst is that it affects your white blood count making you vulnerable to complications from any respiratory illness you might catch so you have to be careful to stay away from people with colds etc. The letrozole apparently causes menapausal symptoms but since I had those before I started it's difficult to tell. With the Palbociclib, what is usual is that you start on the highest dose and have frequent blood tests and if your blood count drops too much they reduce the dose. I've dropped down one stage after first 3 months but have since been stable, so that I'm only getting blood tests every 3 months now. Other than that, I feel tired but again difficult to pin that down to the drugs as it could be related to the pain relief I need to take for my bones.
Thanks so much for the response. It really helps sharing and seeing success stories. Gives so much hope. I'm waiting for my result to determine ER/PR/HER and decide on the line of treatment. How are the side effects of Palbociclib/Letrozole/Ibrance? Really hoping I don't end up in chemo. Given my age (70 yrs) I don't think I can tolerate it.
Do not lose hope yet. Your situation sounds a bit similar to mine, I too had an enlarged lymph which led to diagnosis. This was in March 2017, after 11 years clear. My first scan report cited numerous lung nodules and bone scan showed many bone mets. There seem to be all sorts of treatments oncologists can try to find what works for you. I am now on second line of treatment doing well (Palbociclib + Letrozole with Goserelin, on a brief pause from Denosumab but expecting to restart that next month). It only took till second scan after treatment started for my "numerous nodules" to become 2 nodules, which began to shrink.
Try to find some local people to talk to, I found that so encouraging in the early days especially.
Hi Liz0418 that certainly gives us encouragement, it’s good to hear positive stories .So pleased you are doing well x
Hi beatit and hannah . I had sbc diagnosed in 2018 14 years after primary . My secondaries are in both lungs 2 tumours bigger than 1 cm and smaller ones and base of spine and both sides of pelvis been on palbo and letrosole for 3 and a half years and tumours are all stable. Also on zometa for bones every 3 months . Sending you love and positive vibes Liz xx
Hi Beatit I too have had a recurrence after 18 years , lungs and chest wall .Am on Everolimus/ Exemestane .Been on this Combo 16 months .Lungs under control, chest wall still a problem.Consultant talking about cyber knife procedure .Which sounds promising.Never Give Up Hope , so many different treatments out there xx
I have been diagnosed with mets in both lungs(multiple nodules), bones and lymphs. This is after 18 years of being cancer free. I had a swollen lymph node whish was biopsied and turned out to be malignant. Found out about lung and bones in PET + CT scan. I also have a recurrence in chest wall. Should I ask for another biopsy of lungs/chest? Losing hope 😞
I can relate to that Scubachick- mine came back after 15 years. I’d been discharged from all follow up clinics, reached my 40th birthday and finally thought I could put it all behind me. Sadly not. Cancer is a sneaky little devil. But like you my oncologist thinks it’s a good sign that it took so long to come back - hopefully the disease has quite a slow tempo and that will be a good thing in terms of future prognosis xx
Hi Scubachick, what a pain after 11 years. So pleased you are feeling positive though. Xx
after an 11 year break from cancer where to be honest I thought I’d kicked its butt my cancer is stage 4 lung met too.
My oncologist too is very upbeat though I know it because of the length of time I’ve been free from it. Chemo starts on Monday for me. Feeling very positive though as I did before.
Carine, thank you so much for letting us know how you are doing. Positive stories are so reassuring. Since posting I have also developed skin mets and started on Kadcyla. Fingers crossed it is working! Xx
I'm not recently diagnosed, but thought I'd add a few words of encouragement. In April 2017 I was quite unexpectedly diagnosed with mets to bones and lungs. There were "numerous" nodules and 1 lung almost full of fluid (note that I had had no symptoms). Treatment is Tamoxifen and Zoladex (+ Denosumab and Zomorph for bones). First scan after treatment started showed significant reduction and has been stable more or less since. I now have "2 small nodules" in lung and "a small amount of fluid" Life goes on. I feel well, still working (part-time now), mostly pain free. Next scan next Thursday, sadly still get nervous and worried each time...
Hi Lucy yes your right there , am not going to look anymore ,maybe lol .Did you say you have started treatment now .Lets hope we don’t suffer with many side effects fingers crossed and the drugs do their job .Lets both stay strong and positive. We’ve got this xx
Hi Hannah, my friend said google = mental self harm. She's right. It can be torture. Definitely trying to stop! Need to join Googlers Anonymous! Xx
Hi Lucy I think we all tend to google things about cancer and treatments. I was told I may go on drugs exemestane and Everolimus,so looked them up straight away.Yikes wish I hadn’t , so if there are any ladies on this cocktail of drugs , can u tell me how you are doing .Am panicking just like u Lucy , why do we look these things up lol xx
Hi Hannah, glad you have treatment starting next week. Skin mets are annoying but hopefully current treatment will help them too so I am trying not to panic. Unfortunately I stupidly googled skin mets and it wasn't good but there were some positive things there too so I am trying not to panic and will not be googling again! Xx
Hi Lucy hopefully will start on some form of treatment next week .So sorry to hear you have skin mets .Will you need to change treatment, or carry with the same drugs x
Oh Hannah, I am sorry you didn’t get your treatment sorted today. Hope Monday will be better for you. How annoying having to wait again. Xx
Hi Lucy so kind wishing me good luck .Am back at hospital Monday , having a special blood test , as they believe I carry a faulty gene mutation.Have already been tested for braca gene , which was negative. Was hopeful to be offered a trial , but not this moment in time .They are going to discuss new treatment for me x
Hi Hannah, just wishing you all the best for your appointment today. I hope they come up with a good plan for you. I have just heard from mine that I have skin mets too which isn’t the best but treatable so trying not to panic. Xx
Hi Lucy thanks for reply will have to look up treatment you are on .Am speaking to oncologist Thursday, yes we must both stay positive, and your right it’s so dam rubbish this cancer .Will let u know how I get on x
Oh Hannah, I am so sorry you are in this position too. It’s so rubbish. I am sitting right now having the first of my next lot of treatment- Kadcyla. Fingers and everything else crossed it works. I am trying to stay positive but it is not easy and biggest problem right now is that I can’t eat my kitkat with a mask on! I hope you have a new treatment plan soon. Waiting for scans etc is just the worst. Xx
Hi Lucy have just been diagnosed with lung mets .Have been on palbacilib for 2 years which kept my cancer under control. So it was a huge shock to hear cancer spread to lungs .Am not sure of next treatment, but will be having biospy scans etc , and then they will decide what’s best .Feel pretty down at moment x
I’m glad to hear that 🙂 I think looking after yourself is key - eat well, exercise and don’t forget to build in some rest. But I don’t let my diagnosis stop me from doing anything that I want to do. I think keeping healthy is a really important thing for us - it makes you feel good if nothing else. But don’t forget to treat yourself as well and enjoy life. Having fun is definitely the best way forward xx
Pawsome you have inspired me Thank you. I have been in a bit of a mess really. I am not too unfit but I could do with eating more healthily and being a bit thinner. I was worrying that if I lost weight it would mean my cancer had come back. Now of course it has come back anyway and you are absolutely right doing the things you love is the best. So definitely more walking and more effort eating better and having more fun! Xx
Oh definitely get out there and do the things you love. Don’t let the diagnosis stop you. I am a lot fitter than the average person and my Oncologist always says that is a good thing xx
Hi Pawsome, thank you so much. It is so good to hear how well you are doing. I really need to start hill walking again too! Xx
Hi, I was diagnosed with lung mets (and bone) last September age 41. I’m on different treatment to you as I’m HR+ / HER2- so I’m on Palbociclib, denosumab, letrozole and zoladex. But my first scan after 3 months showed a 50% disease reduction and my 6 and 9 month scans have all showed stability. I’m currently on cycle 11 and am doing really well. I work full time and live a full and active life - I run and go hill walking. Nothing stops me xx
Hi Corrina, sorry to hear you are here too. I really hope your treatment is working for you and zapping those nasty cells. It's odd but every time I think about my lung nodules I want to cough. I am sure this is psychological! If I am not thinking about it I am ok. I am starting Kadcyla on Tuesday. Hoping side effects aren't too bad. Xx
I've just been diagnosed with lung mets. Also have mets in liver and in lymph nodes in my neck. My BC is estrogen+. I've been put on Ribociclib a targeted hormone therapy to kill or slow cancer growth and Fulverstrant injections .A hormone therapy to block to estrogen . Im now on third cycle of treatment and going well as side effects aren't too bad at all. Will know better whether its effective for me once I get my next CT scan results . Hoping your treatment goes well for you x
Im 55 diagnosed with secondaries to lung chest wall shoulder muscle and one spot in bone in May , on tablet chemo plus herceptin and perjeta - on cycle 6 had my first scan results and tumours now cant be seen apart from my tiny bone met that is healing - so for now my chemo is working , fingers crossed your first line treatment gives you lots of years x
Hi Ems, thank you so much for replying to me. I am so sorry you are going through all this too. Well done on finishing your chemo today. Really hope your CT scan shows that it has helped. I think I am going to be getting Neratanib but the oncologist will let me know next week. I am 54.
I was diagnosed in april near start of lockdown with mets to right lung, liver, 1 rib and left hip. My primary was 2015, grade 3 triple positive so was on hormone treatment for 4 years, tamoxifen until mets found, big shock! Just had last chemo today, round 6, I'm going to be on herceptin and perjeta every 3 weeks and I'm waiting for my first CT scan since treatment. I'm 39.
Hi, today I have been diagnosed with lung mets. Not exactly expecting it but feeling good as oncologist today was really positive about there being lots of treatment options to try. Initially diagnosed last year in May with Her2+ BC. Neoadjunctive chemo plus surgery x2, rads and ongoing herceptin. Just wondered if there is anyone else out there newly diagnosed with mets and in a similar position. Xx