oh that’s a bugger especially if hospital knew your bloods were not going in the right direction. My white count will potentially be low because I’m on an anti seizure med one of the side effects being to lower your blood count !!! So for 3 days after chemo I’ve got to inject myself with Filgrastim which boosts the blood count up. Has this been mentioned to you?
On the plus side Exemestane kept my bone mets stable for 3 years when they were first found.
So sorry to hear you've also had that nightmare. Sometimes it feels like for all their years of study, the medical profession have times where it all feels like bad joke doesn't it?
Have you had your first Pax yet? Mine has been delayed twice, as unfortunately my bloods have been too low and now the Oncologist suspects that I have bone marrow infiltration, which means my bloods will get worse, not better, so no chemo for me right now. I am pretty cross about it but what can you do.
So the plan is for me to move onto Exemestane now, with a hope and a prayer that it does do me some good and if my bloods start to improve whilst on it, then I can still have Pax at a later date. Do let me know how you get on with Pax though as I would still like to hear about it and offer you moral support 🤗 xxx
I could have written that myself! Regarding CT scans my oncologist had to pin the radiographers down on a decision due to how they measure the liver lesions differently. One was saying stable the other progression... WTF !!! They decided on progression so hence starting PACLITAXEL this Wed. I too have looked at paying for the oncologist gene testing and had in fact booked a private appointment at the Marsden to discuss this plus second opinions etc. However Like you say, we could end up with a lot of good info but no access to the meds. Never got to go to see them anyway as ended up in hospital with a seizure! Anyway I think you are starting chemo this week too so good luck and let’s swap notes xxx
Thanks so much for your kind words SS!
You totally expressed my sentiments - it drives me crazy that neither the Oncologist nor the Radiographers seem to have a thorough grasp of what is going on (or at least, that's how it comes across when I am given patchy information that doesn't seem to stack up). I think partly its to do with medical professionals very rarely meeting patients who actually want to "know" all the details about the cancer and reason behind treatment choices, and also partly to do with lack of resources and the ""conveyor belt" pathway of cancer services. I also know there is a massive shortage of Radiographers at my hospital so the quality of scan reporting varies from ok to good to WTF on a regular basis!
Yes you are right, I am hormone positive (ER+ and slightly PR+, HER2 negative). I have never ever had an explanation as to why Tamoxifen never worked for me (or Palbo for that matter), or even been offered any gene mutation testing, which is (according to science) one of the reasons hormone driven cancers can become resistant to hormone therapy. There is no history of breast cancer in my family either and given I was so young when it manifested, it is beyond frustrating to not be able to know the likely cause or drivers behind it. My Onc told me that given neither Tamoxifen or Palb/Letro worked, there is no point trying other hormone therapies as they are also not likely to work, but I would have liked to have been given the chance to try.
I've considered paying for private liquid biopsy/genomic testing at a clinic in London, to see if there are any gene mutations which might open up some other treatment options for me. However, its expensive, around £700 - £1000 I think, so I have to weigh up if the information I would gain from this would bring me any peace (knowing for the sake of just knowing) but then it could also open up a pandora's box if I do have mutations and drugs exist for them but the NHS won't fund them.
Sorry to hear your mum was in such a poorly state before getting a diagnosis, its awful. You are right though, a couple of weeks won't make a difference so try not to worry for now. Its best to try and get things right for your mum rather than jumping from treatment to treatment.
I was also keeping an eye on the ErSO news, there is a facebook group called ErSO Activism for Breast Cancer or something like that, they are in regular contact with the head researcher at the uni that is leading the project as well as the pharmaceutical company. There have been some updates and ErSO still requires a lot of work before it would even potentially be ready for human trials but its still promising.
Glad I wasn't waffling and you found it helpful! Much love xxx
I’m sorry to hear Cape has stopped working for you. It is bad that they cannot tell you if you’ve had progression to the lungs or not. You’d expect them to know from scans! They must see loads of similar scans. This is meant to be their field!! You must keep us updated as to how you get along with the paclitaxel. Why do you not respond to hormone therapy? Is your cancer not hormone positive?
I think not being on treatment for a set amount of time is psychologically tough. Your mind goes into overdrive! My mum had fractures to her sacrum and spine for months and months before she got diagnosed and finally on treatment, so you would have expected the cancer to have had a right party! But it was bone mets only. Extensive , but still bone only, so I guess a couple of weeks won’t make a slight bit of difference.
I know we all want the same, but I just wish there was a bloody cure for it or it would be found soon!!! I had my eye on that ErSo trail, but that seems to have dissipated.
Sending you lots of love Gillyflower. You didn’t waffle at all. Every word made sense and sent some comfort!! Xxx
Hiya, so glad to hear your mum is home at least and a little better, though sorry to hear she's still strugging with a temp and cough. Fingers crossed the doctors can get to the bottom of it quickly so your mum can feel better soon and you can get some relief from worrying about her xxx
I know what you mean about feeling like its panic stations when there is a treatment stop or break for any reason. I've had my treatment stopped several times for various reasons and its never really done me any harm, thankfully. In fact, when I rang the breast care nurse panicking about it the first time (I was off treatment for 4 weeks), she told me that a few weeks of being off treatment is not really going to make much difference. I found that she was right as every time I had to take a treatment break (mostly due to getting minor infections), I remained stable for a very long period of time with no new growths (this was on Cape).
If its any consolation about treatment breaks, I'm almost the example right now: I had new symptoms at the beginning of October last year (started with chest infections and breathlessness), remained on Cape despite the Onc's concerns, then at the beginning of December my CT scan showed new nodules and small pleural effusions in my lungs. My Cape was stopped completely. I haven't been on any treatment (other than Denosumab and Zoladex) since then, which is about two months, because the hospital are constantly getting things wrong and my Oncology service is probably the slowest in the country.
I'm doing ok though thanks Secondary Sister 🤗 Its been a rough couple of months due to this bit of progression in my lungs. Well, to be honest, neither my Oncologist or any hospital doctor knows if its definitely cancer or not, as I do have asthma and I've had recurring chest infections since October last year and I was told it could have been Covid, pleurisy or even the start of pneumonia. Oncologist refuses to do any biopsies so every time a new "thing" appears on my CT Scan, I get told "its probably cancer". It drives me nuts as I'd like some definitive proof but its tiring always arguing with the hospital about what I think they should be doing (lol).
I was on Cape which was absolutely brilliant for me - I had a reduced dose, but it worked and kept me in very good shape for 16 months. I work full time and had few side effects, I think the worst was the skin on my feet became really fragile and I would get cracks and and peeling, but nothing a good moisturiser and quality socks couldn't handle. Sadly it stopped working and I am due to start IV chemo (Paclitaxel) next week but on the positive side I've heard many people get great results with Pac so I remain ever positive!
You are absolutely right to consider quality of life for your mum as well, because ultimately there's no point being on treatment that makes you feel more ill than the actual cancer. I think its also important to remember that each time there is a treatment change, its a new thing for the body to get used to and it takes time for the body to adjust and start to adapt, so it could be that side effects are rough to start with but ease with time and maybe a dose reduction. I think when there's lots of rapid treatment changes, it makes it harder for the body to keep up with what is going on as its constantly going to be trying to "fix itself" in shifting sands, so to speak. You can have periods where the cancer might be more active and progress (I'm convinced the stress of my house move in October is what did me in), then other periods where its dormant. Sorry, I am waffling now lol, but I think what I'm trying to say is - things can go both ways and just because there's a bad patch where a certain treatment doesn't work, it doesn't mean that its all downhill from there.
Sending much love and hugs back to you and your mum, keep us posted on how she's doing, she's so lucky to have you 🤗 xxx
Thank you so much Gillyflower for reaching out!
Your words have a lot of comfort ❤️
My mum has improved a lot and is now home, but still cannot shift her high temperature and a slight cough. We was told the cough maybe inflammation of the lungs. Her oncologist is to call her today or tomorrow to discuss. She will have been off her treatment for a week tomorrow, so inwardly I am panic stations! I want her back on some treatment!
If they decide not to reduce her dosage and just discontinue this drug, I think next port of call is Cape. It will be a shame if she doesn’t get sometime from this E/E combo, but if it makes her ill then that is not quality of life either.
How are you doing Gillyflower? I vaguely remember you saying you were on Cape. How do you find it and how long have you been on it?
Thank you for your reply! Sending love! Xxx
Hi Secondary Sister,
Sending much love to you and your mum, I can empathise with how frightening and awful this whole SBC rollercoaster is. How is your mum doing at the moment?
I haven't had any experience of Everolimus & Exemestane myself, as my cancer doesn't respond to any sort of hormone therapy, so its always a form of chemo for me.
Sometimes I think we all get stuck in the trap of thinking that if we don't have success on one line of treatment and rapidly move to another, its panic stations and means imminent death! However, that's often not the case. Its important to remember that just because one line of treatment doesn't work, it doesn't mean that others won't. Its important to keep trying different ones until the most effective treatment is found, even if it means having to have chemo.
However, even if the treatment line needs to progress to chemo, there is still always hope! I've met loads of people who have had such good responses, with a really reasonable quality of life, that they prefer to remain on chemo for the rest of their lives rather than risk going back to hormone treatment and experiencing further progression. Some people choose to go back onto hormone treatment for a while but ultimately this will also stop working and they'll have to resume chemo.
Sorry, I know that's probably not all very much help but just wanted to reach out. I hope your mum is doing ok and the hospital are looking after her. Let us know how she's doing. Sending much love xxx
I need a little advice/help again!!
My mum has been taken to hospital with a temp of 39.4, rashes, shivering and a cough.
She had a very slight cough and a small rash to begin with, but as she appeared to be tolerating the E/E combo they upped her dose. It was after this all symptoms became severe.
They have told her to stop her medication until Thursday when she will speak to her Oncologist. I am wondering now whether they will reduce the dose again or discontinue it all together ??
I am so so worried about my mum. If they discontinue this drug, she will be on her third line treatment within 18 months!!!
Has anyone had similar experiences or any comforting advice?
Thank you, as always! Xxx
Thank you for replying!
I have given Macmillan a call and the lady was very helpful, but I may give the bc nurse a call too. I pray and hope my mum gets to the 15 year mark!! Treatments have come such a long way! Xx
Sorry you haven't had any replies I'm lucky enough my mets are stable on palbo and letrozole you should maybe phone one of the bc nurses on forum here they will help a few ladies on here gone on to different treatments successfully one I know is 15 years on in mets after various changes in treatment. I sent a link that says this prevents going onto chemotherapy with some good effect don't analyse it all especially on a Saturday night .If you put exemestane or everolimus in search bar you mind find some threads. You will understandably be worried I'm awaiting my last scan results and you always think what if its stopped working. Sending love hugs and positive vibes Liz xx
My mum has been on Riboclicilb and letrozole for 14 months for MBC in her bones. After a recent MRI, there is one new lesion on her spine and some other mets on her spine have grown slightly. I’m petrified to be honest. It’s her first progression since secondary diagnosis. I really hoped this combo was going to work for longer.
Exemestane and Everolimus have been recommended as second line treatment. Has anyone any experience of these drugs? Has anyone got any positive stories? I feel so deflated and scared. Desperately seeking help. I’m so trying to stay strong for my mum, but inside I’m crumbling.
Thanks very much in advance! Xxx