How is everyone doing? I'm feeling so down, as I do most of the time, also, I just have this fatigue for the last few weeks. Last time I was in for my injections they said they'd have a chat with doct, but no one got back to me. .I'm due in again nxt week, and am going to make sure I get to talk to someone.
Hi Lauren, nice to hear from you. So sorry to hear that the cancer has spread to your mums bones. It’s a little painful to have it there, but I know from my friends that treatments are very successful. Being positive is key, and keeping fit and active as possible is very good for positive mental health. Good luck with the new treatment, and stay in touch, Lauren. Hugs. 💐🍀😘
Hi ever so sorry it’s been a long time! I haven’t be able to access my email account. How are you all? My mum and I are ok at the moment she’s just starting some chemo tablets because the cancer has started spreading to some more bones but we are staying positive:) xx
your dx sounds like mine straight to 4 in bones awaiting to see onc to see what plan is.
would you mind sharing your journey and treatments and how you get on day to day?
Hi Lauren, afraid infections and hospitalisation are very very normal with BC. At one point I thought I had my own bed in my own isolation ward. Knew all the nurses. 😝 Still have to be very careful and take my temp as soon as I feel a bit hot and achy. Better safe than sorry! Your mum should have an emergency number card to be used to contact the hospital. Makes for a quick admittance. Stay away away from A&E as it’s full of sick people!
I’ve been following your journey, and I think you are both doing great, under the circumstances . Wishing you both a happy and joyful Christmas in the comfort of your family and loved ones. X
Hi how is everyone it’s been a while since I wrote anything on here. It’s been a long rollercoaster but fingers crossed things are going well this end at the minute! I hope to hear back from you all soon x
Luckily I’ve not had pain from my mets despite the bone ones being quite extensive so I’ve not needed any painkillers. Sometimes when I’ve been less mobile (for reasons other than BC) I find I have a few aches especially at the top of my spine where I initially had a hot spot which showed up on my bone scan when bone mets were first diagnosed 10 years ago. As to treatments I have gone through a few over the years! Generally switching between chemo and hormone treatments, with a little dabble with Herceptin when my liver mets were found to be HER2+. Since checking the results again they were found to only be very weakly positive which explained why some of the Herceptin type of treatments hadn’t been very effective. Sticking with hormone treatments at the moment but will have to wait for CT scan in a month or so to see how I’m responding.
Glad to hear Mum is doing better, seems she had quite a hard time of things at the beginning, hope the remainder of the chemo was better than the first cycle or so. When I was diagnosed with bone mets 10years ago I had 6 cycles of chem and then went onto Aromasin (arimidex). This kept me stable for nearly 5 years and was far more doable than chemo. I hope your Mum get s a good run with the hormone treatment and not too many side effects.
As to scans, a lot of us have them half way during chemo but some hospitals might use other ways of monitoring how she is doing. I think you mentioned (reading back on this thread) that some visible lumps had gone down! Maybe they used this along with tumour markers (which are a type of blood result) and have decided to scan her once the chemo is finished. I’m sure you will both be worried about getting the results, we all suffer with ‘scanxiety’ when we have scans but it’s good you feel you can get away on holiday now, I expect you feel you need one! I’m also sure your Mum must really appreciate your support for her, it’s not easy being the supporter, sometimes worse than being the patient.
Hi Lauren, just over two years ago now. All things considered I’m okay, I get more tired and some things are a bit more difficult but I decided, after initially blaming myself that I should’ve insisted on more tests several years ago, to just get on with it and do whatever I can to keep myself as healthy as possible, I find that helps me. I have a cousin who was diagnosed with early onset dementia around the same time and, all things considered, think I was the luckier one. I had spontaneous rib fractures just before I was diagnosed, although initially painful I didn’t have any swelling or other symptoms.
Sure you know when you have chemo it doesn’t distinguish between the cancerous cells and healthy cells, so it can reduce your ability to fight off infection, and therefore, infections do occur and blood transfusions are sometimes needed to replace cells.destroyed by the chemo.
It is a lot to deal with but hopefully things will settle down for you soon, take care, Kxx
Lauren, it is unlikely they have read the X-ray wrongly. but do raise it with them..keep plugging at it. The swelling, sounds like lymphoedema, from your description.
its hard for you, I know but at least if you keep plugging at them, you will get answers. I too have hairline fractures of two ribs, rads can do that, or the cancer ca. The treatment is the same for both,
in in one sense there are many of us on this website who have advanced cancer...it's just if they can control it/maintain. A good quality of life. Xx
Lauren, yes, I have had an infection due to low blood count, been admitted and given iv antibiotics...loadsa times..been there, got the t shirt. That is the very best practice...when we are ill.xxx
re the swelling, just wondered if it could be lymphoedema? This can happen due to surgery damaging some lymph drainage. Not sure when her op was, but sometimes a collection fluid forms in the
Scar area . This can be drawn off with a syringe
Hi Lauren, sorry to hear about your mum and the worry that comes with this disease. I can’t speak for the treatment your mum is receiving as I was diagnosed at stage 4 and went straight onto Letrozole, but I do remember when my mum was having chemo and she needed antibiotics and blood transfusions, she was particularly unwell after her third round of treatment, during a course of six. That said it was a good few years ago and treatments change, and we can react differently. I know there’s no point saying try not to worry because it’s your mum, and I know I was far worse when it was mine than I am, or have ever been, about myself. Sorry I’m not much help but wanted to say I’m thinking about you, take care of yourself too, Kxx
Hi Nicky sweetie,
''my onc has informed me that if my drug fails they WILL put me back on it...even tho I have some tolerable reminders of my first course of doxetaxol...he said that the doses are lower these days and weekly, whereas we were blasted with higher doses in 2001/2 but every three weeks!
I must say that even though it is a really effective drug.....I'm not keen for a repeat, even at a lower dose xx
It is quite common to feel flu-like after the first bone strengenthing treatment - goodness knows why, but it does happen to most of us. Sometimes it is masked by the side effects that chemo gives us so it's not always obvious what has caused your Mum to feel this way. I hope she gets on PK with docetaxel, I had it back in 2014 and found it was quite do-able but I did have my dose reduced after the first infusion to help with the side effects (mainly neuro pain) that I had after the first dose. The bone strengthing injestion (if it is an injection and not infused ie by drip) will be denosumab. Most of us tolerate this very well although I did hear from a lady yesterday who has had quite strong reactions to it. Let us know how your Mum gets on and ask any questions, one of us can usually help. Also you can check out the Treatments/Chemo part of the main part of the forum as there will be more ladies having docetaxel than you will find in the secondaries part. The treatment and side effects will all be the same even though your Mum has SBC not primary BC. It is giuven as a treatment for SBC but if any of us had had it for our primary we won't have been given it again for our secondaries which is why there are fewer of us on it - no other reason!
Lauren, I am on an antioestrogen injection.. your mum is lucky to have you around....hopefully her side effects (if any) are minimal and manageable....one thing about bc, so many different types, that's why a lot of us are on different drugs to your mum..tho, I did have doxytaxol years ago and many of us are on bone strengtheners as they are used to heal bone cancer and also some treatment makes us prone to osteoporosis.
love to you and mum
Well, just chugging along, just started new treatment myself, but very hopeful, thank you Lauren. Xx.
.....have been making good use of my local Macmillan centre recently....having reiki and even some counselling....but that more to help with non cancer issues...actually your mum might benefit from going to a centre...is there one nearby? You'd be very welcome to go with her....it's like a haven of peace...very nurturing,
Love and hugsxx. moijanxxx
ps hope mums pain gets sorted.,., they are very good at pain control these days and she really shouldn't have to go through that xx
Yes dragoncarine, I agrees about taking someone, to make notes too,also I type out my questions on my iPad and hand it over to the onc and he goes through them all.
sorry to hear your situ..very scary, They don't routinely do full body scans do they? I had one recently for the first time and was reassured that bc hadn't gone to anywhere else, but you have been unlucky....where in your upper arm is it then? In the bones or have you Lymphoedema?
Having said all that, the reason they gave me, for the whole body MRI was to check the bone...but then they said the bone situ was very unclear, that there was damage but ? due to what....so I'm unsure if my bone mets have spread like the liver ones have.
anyway, whatever there is..is...and we all travel on the same train in the same direction...let's try to travel hopefullyxx
I feel like a fraud sometimes as I hardly feel ill at all, just the pain which is well controlled with pain killers. The one place cancer isn't this time is the breast! Mine is in my ribs, my sternum, my shoulder blade, my upper arm, my skull and one lung also some lymph glands. I thought, like you, that it had been so long since my cancer that that was it for me, but turns out it was hiding in my bones the whole time. I really wish there was a system in place for checking up on breast cancer patients as mine may have been caught sooner if I'd had scans - and not just mammograms as I had loads of those that never showed anything which is hardly surprising as there's no cancer there.
Make sure your mum has someone with her when she goes to oncology appt, I found it so hard to hear everything that was said as my brain went into meltdown and I found talking about it afterwards with my partner that we had heard the same words but interpreted them differently! I'm always really negative and he picked up on the positive things that were said which I found really useful.
Also I asked for a copy of the scan report to put in my file, although it was quite difficult to read, I found it helpful to refer to later on. I also got a print out of my bone scan which highlighted the areas of pain quite nicely. For me being able to understand why it hurts helps me to deal with it. Some people I have spoken to feel the opposite, I guess it's a very personal thing.
Hope today goes well for your mum. I was diagnosed in April this year - a huge shock to me at the time as my primary breast cancer was in 2005. First phone call from GP (surprise discovery of cancer cells after routine procedure) was on 5th April, first meeting with oncologist was 21st April, then results of first scan with the added shock that cancer was in my lungs as well as my bones was on 5th May - There was a lot of waiting in between those appointments, so difficult to get answers and my partner and I were so scared, lots of late night crying and making plans for what we would do if I get really sick. Things have eased off now as I am one of the lucky ones for whom hormone blocking treatment is working well - early days still but at least things are calmer. My daughters live some distance from me but I made time to go and see both of them after I knew what was happening, they both call regularly which I still find odd (youngest only recently left) as I can't get used to having grown up children.
Lauren, This is a shock for both of you. You both will feel better and more in control once you have spoken to the oncologist and have a treatment in place. Many ladies do get a bone strengthened. Then from there it is either chemo therapy or hormonals. Hormonal are usually given to women who are estrogen positive. Most people tolerate them very well. Every oncologist is different in his plan of action (POA). Some like to treat aggressively in the beginning and then relax a little after that. Some like to go easy and see what will help and maybe be more aggressive later. My cancer came back after 10 years but set up camp in my lungs. Then a few years later one bone met in the spine. Everyone's cancer is different and there seems to be no comparison of apple's to apple's! Oncologist usually don't like to give a time frame. I don't know what the average time frame is in the UK for getting in to see the oncologist and under way with treatments, bc I live in the USA. Hopefully one of the other girls will come along and comment on that.
I do agree to remove your e-mail. Actually don't be surprised the moderators might do it. FF
Lauren I am so sorry to hear about your mum - it must be so difficult for you and for her. I cannot offer advice from my own experience but I know there will be some ladies who have more experience of this who will come along very soon. I'm just responding to suggest you might like to amend your post to remove your personal email address as this is a public forum so anyone can read all the posts even if they are not members, and that could be a bit dodgy for you. There is the facility for private messaging on this forum though, but I think you might have to be a member for a certain length of time before you can use it. Sorry if I seem to be interfering, but you've got enough on your plate without getting spam or worse. All the best. xxxx
In June 2017 my mum had been feeling very unless for some time but couldn't pin point what was wrong with her she was also getting some back ache so she went to her GP which he told her it's muscular pain she went away thinking it would get better. But it started getting worse so in august she went back again and they said we will do some bloods and a x ray just to see if anything comes up anyway bloods come back high calcium and x ray on chest area come back full of small lytic lesions everywhere they could see so they referred her to the breast clinic because my mum had breast cancer previously 10 years before they did biopsys scans etc which showed she had breast cancer but this time it's in the over breast the one she had in before is clear.. she has these cancer spots all over her ribs collar bone shoulders spine and hips but no major organs as of yet! Calcium levels are making her very sick and week she's lost so much weight as she can't eat and on very strong pain meds she's in and out of hosp trying to get calcium levels down too! She is feeling very down and she can't stop thinking she hasn't got long left we haven't even seen a oncologist yet it's been 3 weeks since they finally referred her but heard nothing as of yet! She as been referred to someone else too to check her bloods for cancer now they also want to do bone marrow biopsy is this rountie? Or is there something they aren't telling us? How long did it take you all to see oncologist? And once you did how long until you started treatment and what treatment did they put you on? How long has it been since your diagnosis and how well are you all doing we want to speak to people in same situation life is so cruel to do this to people! My mum is moving in with me as she can't take care of herself anymore she struggles with the most littlest things now picking the kettle up with water in it hurts her. Is there a good possibility she is going to be here for some time or do we need to prepare ourselves for the worst if anyone can relate and wants to talk direct please email me email address removed thanks for reading xx