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Advise please

38 REPLIES 38
Stoney
Member

Re: Advise please

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.     

Anniej
Community Champion

Re: Advise please

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. 💐🍀😘

Lauren2011
Member

Re: Advise please

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

Anniej
Community Champion

Re: Advise please

Hi Lauren, just checking in to see how your mum is. Hoping you both enjoyed Christmas. X

glovesareon
Member

Re: Advise please

Hi Katie

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? 

Anniej
Community Champion

Re: Advise please

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

Lauren2011
Member

Re: Advise please

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

Lauren2011
Member

Re: Advise please

Bonariensis that's brilliant you haven't had to have any chemo as of yet I hope it stays that way for you too! I've read some horrible stories how awful chemo can really be, my mum was just very lucky in this case.. have you had any other side effects on this medication my mum has recently been hallucinating nothing has changed apart from this medication she has just started so we are beginning to think it could be that, will speak to onc when we meet again.

Nicky08 your very very lucky to have no pain what my mum would do to have no pain! Hopefully one day she may be pain free who knows.. she's beginning to feel like this is life now. Also could I ask how often you have scans and see your onc? I see they often change things around to keep cancer under control I think it's amazing how they can keep it controlled for so long! Love hearing all your success stories and how well everybody is doing hope to hear from all of you and more speak soon xx
nicky08
Community Champion

Re: Advise please

Hi Lauren

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.

Nicky x 

bonariensis
Member

Re: Advise please

Hi Lauren I have been on aromasin for more than two and half years and have been well on it though my feet have got more and more painful. I'm lucky that I have so far never had to have chemo. Your mum is lucky to have your support. As yet it's the other way round with me and my daughter. Have a great holiday.
Bon xx

Lauren2011
Member

Re: Advise please

Thanks for your reply, happy to hear you was stable for so long on these tablets how are you now? Chemo went fine first couple was hard but after that she carried on as normal wouldn't know she was having chemo half the time! She's still on 100mg of tramadol now and oncologist asked if she can reduce it but sometimes even the 100mg don't take pains away so she's not very keen on reducing at the minute.. how's your pain vary from day to day? We notice that her pain spreads about a lot one day it's one side next it's the other we need to speak to oncologist about this is this normal? Last appointment mum had to go on her own as it clashed with collecting children from school and she tends to not ask much when she's alone. Also very looking forward to our holiday away feel abit guilty leaving mum but she's assured me she will be fine! Well things must be improving when she come to live with me around 6 months ago she couldn't do much for herself at all now she's fully mobile and we even manage a short trip around the shops!! Feeling very positive ☺️ Hope to hear back from you soon take care xx
nicky08
Community Champion

Re: Advise please

Hi Lauren

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.

Nicky x

Lauren2011
Member

Re: Advise please

Hi just checking in as it's been some time since I last did! How is everyone doing? Hope you all are enjoying the lovely weather 🙂 mums doing a lot better these days she's finished her chemo and now on medication ( aromasin ) anyone had these before? She has a scan on 4th may pet scan.. be her first one since she started her chemo do they normally only scan before and after chemo? I thought they would of done it half way through! We are very scared to go back for results but we are feeling positive too 🙂 now mums feeling better I'm actually getting away going Tenerife on Wednesday these past 6 months have been so hard for me so I need the time to relax and try forget everything that's going on! Anyway enough from me I hope to hear back from you all soon xx
Kate21
Member

Re: Advise please

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

Moijan
Member

Re: Advise please

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

 

take carexx

 

Moijan💖💖💖

Lauren2011
Member

Re: Advise please

Hi so infections is the norm for cancer and chemo then, she hasn't had an op they said they couldn't operate as it's to far advanced! And when she had cancer last time and had her op it was the opposite side. She is still in hospital yesterday had another x ray and she multiple fractures on her ribs but again this is the wrong side no swelling etc she isn't getting much pain that side we are convinced they have looked at the x ray wrong and the fractures are actually on the side where all swelling is!

Kate21..
Sorry to hear you was first diagnosed at stage 4 when was this? How have you been since your diagnosis I'm all new to this so trying to get my head around it all 😕 xx
Moijan
Member

Re: Advise please

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

 

Moijanx

 

Kate21
Member

Re: Advise please

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

Lauren2011
Member

Re: Advise please

Thanks for your comments. Just an update really it's Day 11 since mums chemo and she's been in hospital last 2 days she become very unwell the other night violently sick just a general feeling of unwell we took her in anyway to be on safe side and she has an infection so been on antibiotics since via a drip and now blood transfusion today!! Anyone else had this? Also lately I have been noticing the side where breast cancer is her side ribs and that side of her back is so swollen.. is this due to chemo or cancer ? She also has a lump on her chest just under collar bone right in centre and you can see it without looking closely. She brushes it off though when mentioned I don't think she wants to admit how bad it really is! Is this normal ? I'm constantly worrying I feel as if it's actually making me ill myself watching her get worse day in day out I can't live my life as soon as I smile I think about her and how much pain she's in and scared etc.. she has her chemo every 3 weeks 250ml and injection into her arm for bones Every 4 weeks heard you say people are having this weekly now? Is this a good chemo my mum as been put on? I've heard so many different stories.. some good some bad but tbh most as been bad reviews to this drug! Hope everyone is feeling well today on this very cold morning 🙂 xx
Moijan
Member

Re: Advise please

Yes Carolyn....x

Carolyn52
Member

Re: Advise please

Hiya Moijan
I think they change dosage of chemos a lot since our primary ..my friend is primary and having 3 FEC/3 Taxotere ...in 2004 I had 6 FEC/12 CMF and it seemed to be forever going through it all ..

Hugs xx
Moijan
Member

Re: Advise please

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

 

Mx

nicky08
Community Champion

Re: Advise please

Hi Lauren

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!

Nicky x

Moijan
Member

Re: Advise please

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

 

Moijan😘

Lauren2011
Member

Re: Advise please

What new treatment have you started? Good luck I hope it works out for you! And thankyou I will contact them to see where are closest one is. How are you feeling? My mum had her first treatment yesterday she had docetaxel and a bone strengthener not sure what it is called, anyone had this? Had good outcomes? She's feeling very flushly this morning not sure if it's normal.. I have a cold trying my best to stay away I don't want her catching it 😕 your all warriors going through this watching my mum daily the struggle is awful but also very brave!! Good luck and hoping everyone well x
Moijan
Member

Re: Advise please

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

Lauren2011
Member

Re: Advise please

Thankyou! So Thursday she has the line put in he Arm and Monday she has he First treatment along with her bone strengthener fingers crossed she starts feeling better soon as her pain meds have been upped as it's getting a lot stronger! How are you doing Moijan?
Moijan
Member

Re: Advise please

Lauren, that's good news..mum will start to feel better once she knows the treatment is underway xx

 

Moijan😍😋

Lauren2011
Member

Re: Advise please

Hi hope your all doing well,

Mum seen oncologist today and they are going to start her on chemo in 2 weeks as long as she's fit and healthy enough for it! Hopefully this is where things start looking up I hope thanks for all your support you've been great x
Moijan
Member

Re: Advise please

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

 

hugs, Moijanx

dragoncarine
Member

Re: Advise please

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.

 

Lauren2011
Member

Re: Advise please

It went well today not as bad as she expected! Finally got our oncology app for Monday!! Finally after all this waiting. And I'm sorry to hear your diagnosis dragoncarine how are you feeling in yourself now ? Are you getting many symptoms? Did the breast cancer come back in the same breast or the other? We was so uneducated we believed 5 years after being given all clear we was at same risk of getting breast cancer as everyone else ! She still regularly checked her breasts though but it's not a lump even now she has no lump just all her ribs are swollen you can definitely see where the cancer as spread on them rib bones!
dragoncarine
Member

Re: Advise please

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.

 

Lauren2011
Member

Re: Advise please

Thankyou all for reading and replying, she as been in hospital for last few days so I have been super busy with kids and up and down the hospital! Well she has her bone marrow biopsy today she's so scared she has heard it's very painful. Still no appointments to see oncologist pain relief is getting stronger now because pain is getting worse.. I hope your all well? How long has it been since you all got diagnosed with this awful disease? also I will remove my email thankyou all I'm new to this xx
Moijan
Member

Re: Advise please

Hi Lauren

 

Please let us know how things are goingxx

 

Moijan💖💖💖

funnyface
Community Champion

Re: Advise please

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

Carolyn52
Member

Re: Advise please

Hello Lauren
Welcome to the forum and what a caring daughter you are ...well like me ..your mum has had a long spell of remission since primary and now it looks like the cancer is partying in her bones.
Unfortunately the dx is such a shock but until you get her to oncologist it's living in limbo. ..
I would imagine that they want to check the status of the bc if they are talking about a biopsy as the treatments are different.
It's very hard to say what the treatment plan will be but I would think maybe letrozole like me which is a hormone pill and a monthly bone strengthener maybe ..both easy peasy to tolerate but until the oncolgist decides the regime. .I can't comment.

If u can try to remove your e mail details as this is a public thread and u certainly don't want unwanted spam ...to stress you more .

Anyway, please keep in touch as we are here to help. ...
Hugs xx
Optimissy64
Member

Re: Advise please

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

Lauren2011
Member

Advise please

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