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Surprisingly, you can still have good news with SBC

35 REPLIES 35
karen1965
Member

Re: Surprisingly, you can still have good news with SBC

Loved hearing this welcomed news gives me a spring in my step ,also reading some of your problems an the answers to them from gillyflower I am on lettrozole an plab since June 21 an I must say my knees are blinking killing me but my oncologist said that’s the effects of the meds I’m on feel like a 100 years old sometimes but apart from that I think I’m coping ok last ct scan said I was stable which I was a bit down about as when I had my scan results in September there was shrinkage from 41 whatever it is they measure it to 26 which I was made up with but they did say it does tend to settle then an just stay stable but hearing this good news has given me a spring in my step again so onwards an upwards , well done all you beautiful ladies an good luck xxx

rosie53
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower, sorry only just seen your reply, I don’t tend to come on here much anymore.

cape stopped working for me and I’m now on my final cycle of paclitaxel, it’s been okay but I’m feeling exhausted now, I have it every Friday and I’m also using the cold cap, the cap has  worked really well for me and I’ve only lost a little bit of hair.

my dilemma now though is what comes next, they have said I could do another 6 cycles of pax (18 weeks) or have a treatment break, both options fill me with dread!!! 
J x

lynnecarr
Member

Re: Surprisingly, you can still have good news with SBC

Fantastic results gives us all hope x

Rorymaisie
Member

Re: Surprisingly, you can still have good news with SBC

Appreciate the knowledge and the tips. Thankyou. I am now on a dose reduction and finding things easier. Thanks again x

Gillyflower
Community Champion

Re: Surprisingly, you can still have good news with SBC

Hi Rorymaisie,

I'm sorry to hear you're not finding Cape as easy as your previous meds.  Sending hugs xxx

I did find Cape a little tough the first cycle or two.  Mainly very tired and some issues with acid reflux / stomach but my Oncologist immediately reduced the dose for cycle 3 and then I felt very good.  I'm on cycle 12 or 13 now I think and I feel very well all things considered, however I do think this is down to three main things:  dose reduction (I'm on the lowest I can have for my body weight, 1300mg twice a day), regular exercise every other day and good sleep. 

Couple of things you could check:

1)  Iron levels - chemo reduces your blood counts and sometimes it can cause a little anaemia so ask your Onc about this and see if they recommend taking an iron supplement a few times a week or something.

2)  Dose reduction - this is definitely worth asking about, as you'll be started on the highest possible dose that's right for you so there should be comfortable room to reduce it if you're struggling.  You need to ensure you have a good quality of life and a small reduction can make the biggest difference.

My only other tip would be exercise as much as you can.  I go for short walks once every other day, 20 - 30 minutes and honestly, this has had an amazing effect on me.  After a couple of weeks I felt significantly fitter, slept better and seemed to build up much more stamina.

Hope you manage to get things sorted so that you can feel less tired xxx

noz
Member

Re: Surprisingly, you can still have good news with SBC

Hi

i am in the same position. I was told before Christmas something had returned in my liver.

two lesions which were highly suspicious. I have had liver mets before but cleared on letrazole

i am having another MRI next week to see if they have changed. I am still on letrazole

i am very anxious and depressed, but then will have another two weeks to wait for the results

hope mine respond like yours x.

 

GIJaneH
Member

Re: Surprisingly, you can still have good news with SBC

Just having been diagnosed with lung and liver mets, this is super encouraging to read. Thank you 😊

akg57
Member

Re: Surprisingly, you can still have good news with SBC

I have just seen this and it is wonderful news.  It gives us all hope.  

Rorymaisie
Member

Re: Surprisingly, you can still have good news with SBC

Hi just read your fabulous update. Can I ask if you found Cape hard in the beginning. I’m on my first cycle 2nd week and struggling with fatigue and tiredness. Aswell as indigestion. I sailed through palbo and letrozole but wasn’t helping my liver lesion. Struggling with feeling rubbish. Was hoping you could share any wisdom. Thankyou 

JIF
Member

Re: Surprisingly, you can still have good news with SBC

Hey, Just seen this as I posted for the first time yesterday when feeling a bit "blue" & so pleased for you - what an amazing feeling!  So hope that it continues for you.  You've made me feel that there is hope out there. 

Jennie X

Timmycat
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower, 

Huge thanks for your reply, it's absolutely fascinating. At one stage I asked my onc about reducing the morphine but he wasn't keen, I'm bit like you and wasn't sure about being on such high doses, but so far I've stayed on it. So interesting about CBD oil/paste, so pleased you've found one that works 😀

I do try to walk more and really enjoy it and I do a zoom exercise class once a week, this is through the hospital, they have been so helpful and impressed upon me the importance of exercise. I had a 'stable' to the results of my recent scan which I was overjoyed with, but in the back of my mind I'm wondering if I may have compression of my spine (mets in pelvis, ribs and spine) as been experiencing a slight niggling pain early evenings. My onc is going to keep an eye on this, but I know I must think positively and be pleased with my scan results. 

Loving the mindset information, I'll do my own research and get down to it instead of worrying about what might be! Hahaha....you don't sound like a hippy! You sound like someone who knows what they're talking about, I'm so pleased I joined this group 😀

So thank you again for your help, I really appreciate it xxx

macca5861
Member

Re: Surprisingly, you can still have good news with SBC

You certainly can have good news, i've just received my first scan results since treatment started in September and I have healing of the bone and shrinkage in the breasts. I am over he moon.

xx

Puglia
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower

 

That’s excellent news. It gives hope to us all. I’m still on Capecetabine and waiting for my recent ct scan results. Fingers crossed that it’s working. 

 

Kind regards

Gillyflower
Community Champion

Re: Surprisingly, you can still have good news with SBC

Hi Timmycat,

Ah welcome, though sorry you find yourself here with us of course xxx  Thank you, that is so kind of you to say!  I am very glad to be whatever support I can be but it certainly means a lot to know that whatever I'm doing is helping someone, somewhere 😊

I noticed quite a few months before my most recent results that I had started feeling much better overall and with less pain than I'd previously experienced.  I was in an awful lot of pain until my meds were switched back in May.  It took around a month or two for the new meds to kick in, and once they kicked in, this is when I started to notice I felt so much better.  However the mets in my bones hadn't really changed at all and were reported as stable and some even progressing at the time!  The doctors were a bit mystified because what they were seeing on my scans compared to how I was presenting in physical reality wasn't matching up.

I used to take a low dose morphine every day (it was only 5mg twice a day, with Oramorph for top up and paracetamol four times a day, every day).  This regime worked really well but I wanted to come off it all as I have a bit of a "phobia" about taking medication.  So I gradually reduced the dose at the GP's recommendation. 

To coincide with this, I started exercising more - so a short walk every day, just 10 minutes a day.  I also started taking CBD oil / paste as I'd read there was some scientific evidence that identified it was promising as a form of pain relief.  I tried a few different brands and didn't notice anything different until I found a particular brand and strength and then I noticed a huge difference.  I really don't know if its real or just placebo effect but it seems to work for me so I keep taking it.

I also read a whole lot of research articles that suggests that pain can be altered by mindset as well as looking after yourself.  Think "hypno-birthing" if you've ever come across that.  I had a friend who used hypnotherapy to have a natural birth and the results were just incredible.  So I figured I'd give that a go for my pain, did some research on it and tried a few different techniques and luckily found one that really worked for me.  I often get told by nurses how "good" I am with painful injections / needles but I am pretty sure I tolerate all of them so well because I've now trained myself to go into a super relaxed state whenever I feel like there might be pain on the horizon!  I probably sound like a hippy (no disprespect to hippies of course!).

Anyway, I hope you are doing ok on your treatment and thanks again for the kind words xxx

Gillyflower
Community Champion

Re: Surprisingly, you can still have good news with SBC

Hi J, sorry its been a while since we've messaged each other, I seem to have found so much to occupy myself now that I keep losing track of time and checking in on the forum 🙂

Great news about your Cape as well, yippee!  Long may that continue.

Oh gosh yes, thinking of the Reebok....we'll definitely have to meet up in person there for a coffee when this awful world of lockdown is over and we're back to safer normality 😊❤️  I haven't been "out" properly for what feels like years haha.  Take care too, sending hugs xxx 

Timmycat
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower, 

I'm fairly new to this forum, so still finding my way around, but have been reading your posts and finding them so informative and as with the last one so incredibly hopeful. 

Huge congratulations on your fantastic news, so very pleased for you, it does indeed give us hope that all is not gloom and doom.

I've been wondering if you had been experiencing less pain in the lead up to your scan, or is it normal to just keep feeling the same? Also what pain relief are you on if you don't mind me asking?

I have bone mets in my ribs, pelvis and I think spine and take 25mg MST Morphine morning and night (continuous 12 hour pain relief) coupled with paracetamol, this works quite well for me most of the time, pain though in knees and lower back, but that's mostly when I'm tired or first thing in the morning. Also you said we get all sorts of pain due to the treatments. 

I've just had my scan on Saturday but won't know the results until the 19th when my onc should be phoning me.......crossing fingers! I'm on Ribociclib and Letrozole so different meds to you, but hoping these are working for me. 

Thank you again for all your helpful and uplifting support and advice.

Alwayshope08
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower,

What fantastic news that is! That must have felt like the best Christmas present ever! It is so great to hear of positive stories like yours, as it shows us that anything is possible. Thank you for sharing xxx

macca5861
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower

This is fantastic news!!

It also gives us all some hope 

I hope you celebrated in style 

xx

rosie53
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower, not been on the forum for quite a while but just wanted to congratulate you on your amazing news!! this is just fantastic, I bet you are so unbelievably happy but also a little in disbelief too!

I am on my fifth cycle of cape now, had two reductions due to hfs honestly I could hardly walk my feet were that bad, now on 1000 twice a day and they are practically back to normal. I got the results just before Christmas of my first scan since starting cape and my bone mets remain stable and there is a slight reduction in one of the lesions in my liver, it totally made my Christmas, so it looks like cape is doing the job 🤞

You take care and maybe I will bump into you at the Reebok sometime when the shops reopen!! 
hugs J xx

Jo7
Member

Re: Surprisingly, you can still have good news with SBC

Hi @Gillyflower 

Thank you so much for your email and for taking the time to write it. Some great advice. I’ve spoken to breast care team who said to phone the helpline who then said to call gp. Gp says it depends on my team but to up pain relief so have my oncology app Thursday anyway and I’ve scans in for just under 3 weeks time that were in anyway. They just seem to say to up pain relief until scans?!? I’m going to up my pain relief regularly for next few days to see if it makes any difference and if not I’m going to push to be heard! I don’t know- sometimes you get feed up fighting with everyone to be listened to and because I sound young they treat me like a wean! Will see what next few days bring! Thank you again and I’m glad you had that large glass of wine! Love hearing positive stories!

Sending much love 

Jo xx

Secondarysister2
Member

Re: Surprisingly, you can still have good news with SBC

Thanks for your reply! You’re an absolute inspiration!!! 

My mum has been a trooper too.... it is me who is a overthinking and worrying mess. I will definitely look into some support services, thank you.  

All the very best to you! Keep us updated with everything. Xxx

 

Beebs
Member

Re: Surprisingly, you can still have good news with SBC

Such fantastic news Gillyflower, thank you for sharing.  Just what I needed to hear, being positive is all well and good but facts is the cherry on top!!

May no activity/disappearance continue to infinity and beyond x not sure if u are NED or NEAD after 12 months both sound amazing whichever from where I’m standing.
Bee

Gillyflower
Community Champion

Re: Surprisingly, you can still have good news with SBC

Hi Secondarysister,

Ahhhh thank you, that's kind of you to say xx

Bless you, I think that the loved ones of people with any type of cancer have just as much of a rough time as the patient themselves.  I hope you are also able to access some support - the hospice or your mum's breast care nurse should be able to recommend some support or make a referral for you if you feel like you could do with some outside support.  In some ways I think its worse having to watch someone you love go through all of this than just have it yourself (at least to my mind anyway). 

My bone mets were initially just in two vertebra in my spine, which then spread to five vertebra, then into my pelvis...then more into my pelvis to the point where my CT scan read "widespread disease in pelvis".  What intruiges me is the fact that for 6 cycles of Capecitabine, there was hardly any change, only a very small amount of shrinkage, so to go from that to this seems incredible.  It has taken a full 12 months of things going from bad then to worse, then to even worse before things stabilised and I got to where I am now.

Your mum is so lucky to have you supporting her.  I hope that her treatment is going well xxx

ems22
Member

Re: Surprisingly, you can still have good news with SBC

Gillyflower

Thank you for responding so quickly. I am very encouraged by your results, although I'm not on the same regimen as you, it just shows the great response some ladies have to current treatments which is fab to see.

Long may this regimen work for you. All the best x

misty1515
Member

Re: Surprisingly, you can still have good news with SBC

Hello

I have just joined this forum and your post is the first I have come across.   I am so pleased for you and it has lifted my spirits a little.

Misty1515

 

 

 

Secondarysister2
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower,

Could I ask where the mets were in your bones? I am hoping some of my mums bones mets will start to heal after reading quite a few stories of this happening. Although I’m concerned that my mum has mets in too many of her bones though. 

I sometimes think to myself...  I still can’t quite believe this (mums cancer return) is actually happening. Like some big fat nightmare that I will wake up in the morning with a massive sense of relief and will just give her a big hug and everything will be Ok!! She is my best friend as well as my mum.

It’s the most difficult thing I’ve ever had to deal with. Thank you for being so active, positive and encouraging on this forum! Xxx

Gillyflower
Community Champion

Re: Surprisingly, you can still have good news with SBC

Hi Ems,

Thank you xxx  I know it affects me as well when I read other people's positive posts, it makes me cling to hope like a lifeboat!

Yes you are absolutely right in that I ranted in a couple of different posts about the lack of clear diagnosis in regards to my liver mets.  It never got 100% resolved as there wasn't anything big enough on the scan for them to make a definitive diagnosis.  They did tell me that they were "almost sure" it was liver mets.  Once I'd had my first scan after three months on Capecitabine, there was a noticeable difference in those spots on my liver so that was how it finally got resolved to a "definitely mets" conclusion as far as they were concerned.  I still refuse to believe it though lol as I think I don't want to admit they might have been right haha!!  I think I give them all a big headache 😂 xxx

Gillyflower
Community Champion

Re: Surprisingly, you can still have good news with SBC

Hi Jo,

Thank you!  I did, I had a bloody big glass of wine haha xx Its really a pleasure and a privilege to be able to share some hope.

Of course you can ask, please always feel free to.  I'm sorry to hear you got such a rude reply from your Oncologist, that's well out of order!  You are absolutely entitled to ask all the questions you want, seek reassurance and support and be able to have all the information you need to make an informed choice about your treatment.  Sometimes certain clinicians don't have good people skills and they react inappropriately but you mustn't put up with it. 

You can put in a complaint about it if you want to (I did several times and the complaints department got so sick of my letters they eventually got a Senior Manager to meet me face to face to sort it all out.  Haven't had a problem since and my Oncologist is super informative and makes an extra effort with me now!)  Its a shame it has to come to that though.

As far as I am aware, your medication can be switched at any time for any of the these three reasons:

a) Toxicity levels

b) Disease progression

c) Poor quality of life due to difficult side effects

The hospitals all have to follow the NICE guidelines and local Trust protocols, which indicate when a medication should be changed and what process they have to follow.  The decision will need to be agreed to by the whole multi-disciplinary team (MDT - which is made up of the breast surgeon, breast nurse, oncologist, radiologist and anyone else they think is relevant to your case).  Its not your Oncologist that makes the decision about medication on their own.  She would need to know the reasons why she is proposing a change and this would be presented at the next MDT meeting for discussion by your whole team.

You'd also likely need to have a scan first to determine where things are at before there would be any change in meds.  If you are having new symptoms, the usual procedure is to investigate them in the first instance, find out any results and only then comes the decision about your treatment.

My Oncologist always starts every appointment with "Hi how are you?  How are things going?  Any new pain or symptoms that you're concerned about?".  If I tell her I'm experiencing a new symptom of any kind, whether its pain or a weird rash on my skin, she immediately tells me what she thinks we should do, eg. book in for an MRI scan or get a referral to Dermatology.  If my symptom is pain, whether or not I get offered a scan in between my 3 monthly ones depends on where the pain is and how severe it is.  If its my back, its an MRI asap but if its my legs, arms or knees, I might get offered an X-Ray or be told to "wait and watch" how it goes.

As you're due a scan in the next three weeks, its very unlikely that the scan would be brought forward if you aren't in any significant or crippling pain or if there is nothing that looks immediately high risk or life-threatening, eg. spinal cord compression or blood loss, that type of thing. 

Also don't forget, Oncologists expect breast cancer patients to have some level of soreness or pain, as that is all the "normal" part and parcel of the cancer and treatment side effects.  So from their perspective, they'll look at helping you manage the pain as a first port of call, unless there is evidence from a scan that shows your pain is related to disease progression.  In which case they'd discuss with you if they felt a medication change was needed.

Also remember that the medication you are on puts you in menopause and stops your body's oestrogen as well as doing what it does to stop the cancer.  Its working hard.  You might feel better in some ways but in others you might feel like you are suffering more (and pain, aches, soreness, joint problems, stiffness and tender body parts are generally the most common of complaints I think). 

The best thing I can suggest (which my palliative care nurse suggested to me) was to keep a pain/symptom journal.  Every day I used to write down how I felt physically and then when I had my next scan results, I'd compare the symptoms to the results to see if it was linked, if it was just normal ageing, oestrogen loss or even just my anxiety causing me to imagine things! 

If you are really in significant pain though and are worried, don't hesitate - get on the phone to your GP/chemo unit/breast care nurse and press all their buttons until you feel you are getting looked after the way you need to be.

You might also want to give the Nurses here on the site a ring - talk through with them why you feel like things are progressing and what is it about the soreness (eg. where is it located, how does it feel its getting worse).  Sometimes its really helpful to unpick things with someone that isn't on your oncology team to help you get your head straight, so that you can then have a clearer idea of what you want to tell them when you next see them.  I suggest this because sometimes I think our minds go into overdrive and we convince ourselves that any new pain, niggle, ache or weird rash must be the cancer, when actually it can just be a reaction to meds, or the general symptoms of ageing, or menopause!

Hope that helps, sorry this post got so long, I often want to jam as much info in as I can and it can be overload to read!

I hope you can get some relief from the soreness and also get some answers.  Let us know how you get on.  Sending hugs xxx

ems22
Member

Re: Surprisingly, you can still have good news with SBC

Gillyflower,

Amazing results, thank you for sharing! I think we all need these nuggets of hope to boost us on and as I've got a scan on Tuesday I really needed to read something like this at the moment. 

If I may ask, was it determined whether it was definitely progression to your liver? I might have missed something or mixed posts up, but I thought I'd seen you mention a few months ago that there was some doubt. I'm just interested as this is an area I have mets.

Best wishes for a fab 2021 x

helen44
Member

Re: Surprisingly, you can still have good news with SBC

Brilliant news Gillyflower - long may NED continue!

Helen x

Jennie60
Member

Re: Surprisingly, you can still have good news with SBC

Amazing news. Thats the way to start 2021! Long may it continue for you. You give us all hope. Love Jen xx💕

Secondarysister2
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower,

I was having such a difficult day today worrying about my mum almost constantly. This has boosted me completely. So over the moon for you!!!! Keep us posted on your treatment. Long may your good results continue! 

All the very best for 2021! Xxx

Ruby2016
Member

Re: Surprisingly, you can still have good news with SBC

Hi Gillyflower,

This is wonderful news! So pleased and delighted for you. XXXX

Jools-50
Member

Re: Surprisingly, you can still have good news with SBC

Brilliant news Gillyflower, definitely gives us hope starting out on this journey xx 

Jo7
Member

Re: Surprisingly, you can still have good news with SBC

Hi,

Such great, amazing news! I am so pleased for you! Hope you did something to mark/celebrate it! We all need good news in these times so thank you as well for posting! 

Can I ask you a question? I am on Let/Palbo and I feel things are progressing a little as I’m sorer- how did they know to switch you meds? I know everyone is different and they keep saying my CT scans are stable but I don’t feel stable and I think my oncologist doesn’t like when I question her about it as she gets a bit defensive so I’m actually dreading the next appointment if it’s her. I have scans coming up in 3 weeks time but I’m sore now. I know I posted this elsewhere on forum and you may have replied to that also. Just asking about the changing medication bit as when I said I was more sore and asked how that works if I’m stable she asked me quite rudely if I wanted to change my medication- I was taken back as I’m not the professional but I should be allowed to ask questions about my body and care if only for a better understanding of how this all works!

Thanks

Jo xx

Gillyflower
Community Champion

Surprisingly, you can still have good news with SBC

Hi everyone,

I hope you are all doing ok and had as peaceful and restful a time as possible over Christmas and New Year.

I wanted to share my recent good news as it was very unexpected and may give other people hope even when you think things are just going from bad to worse.

I had my latest CT Scan results on the 21st December and they have come back with no signs of cancer mets at all.  This is amazing to me, especially since I actually had progression to my liver and pelvis on the Palbo/Letrozole combination.  Even when I was switched to Capecitabine in June, its effects seemed minimal on other scan results and I thought I was very lucky just to be roughly stable.

I don't think myself or my Oncologist can quite believe it.  She told me I will still need to continue with Capecitabine as we know my cancer is sneaky and likes to hide or go to sleep for a bit.  Although I am over the moon with being so lucky, I am also struggling to process the good news, like I can't quite believe it and keep doubting that I've been told the correct results!

Anyway, it really does go to show doesn't it that you will never know what can happen next on this journey...its certainly made me feel like anything is still possible.  The timing of it is super weird as well, because it was almost exactly 12 months ago when I was diagnosed with secondaries....what a year its been!

EDIT:  Thanks everyone for your very warm and heartfelt comments.  Lots of love xxx