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Bone mets - please join in

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Yes I saw that. It was really interesting. Thanks for posting the article
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There was also a feature on bbc breakfast news this morning about a woman with stage4 breast cancer with several secondaries including liver, having been given 3 months to live, having no sign of cancer 2 years later after taking part in an immunotherapy trial. I tried but couldn’t post the link from the bbc news website but found this from The Guardian. Hopefully this type of treatment, although a while off yet, will become more widely accessible. 

 

 

https://www.theguardian.com/science/2018/jun/04/doctors-hail-world-first-as-womans-advanced-breast-c...

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Bon

It's a way forward for lots of primary ladies to avoid chemo unnecessary and of course a huge savings to NHS too ....

I also read on another site that low doses of Cape chemo pills are now found to work just as well as high dosage and so lower side effects hopefully and of course a saving too.

Let hope progress helps the next generation to avoid such drastic treatments .
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We are about to go away in our campervan. Didn't go away in it at all last year. The weather has encouraged us.

 

Headline in my paper this morning: 'Genetic test could help breast cancer patients avoid chemo.'

Hopefully it will also help the type of patients (like me) who hitherto hadn't been given chemo to get it if they need it.

 

Bon x

 

 

 

 

 

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Tatyana, I would love to have a camper van. Go relax and enjoy. I can kill spiders if need be, but not fond of it. I wish you could all see and hear my hubby run and scream from a snake. He wouldn't be any help with that! 

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Oh tatyana

That sounds lovely a week in the camper van. .rest and relax ready for the new chemo. My sis has a camper van. .loves it as she has a pampered dog and can take him with them.

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Oh Carolyn, where would we be without our superhero husbands! Mine had to rescue me from a spider in the bath yesterday. Not that I wanted to use the bath, I just couldn't be in the same room with that horridbthing looking at me!

I have two weeks off before I start my next chemo, gemcarbo. So we're sneaking off for a week in France in the campervan! Trying to fend off the"this could be the last time" thoughts, and just enjoy it. Struggling a bit with neck and shoulder pain from my lumps. But I'm sure I'll be fine once we hit the road!

Enjoy this sunny Sunday everyone!
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Hello ladies

Very quiet here lately ..do here's a wake up call to the regulars. .
I'm up bright and early this morning drinking coffee in the garden ..such a lovely time of day watching all the little birds feeding on the fat balls hubby puts out for them.

What is it with me and spiders ..I'm like a pied piper for them. .last night one crawled out my handbag ..Oh yes ..it was HUGE ..body was about 2 inches and fat hairy legs ..Lucky my hero ..hubby was on hand to do his big white hunter thing!
🐜🐜
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Thanks girls! I don't think the hot sticky weather helps the itching much! I try to ignore it but it's impossible some days. 

 

Thank goodness we don't get all the side effects. 

 

Have a good day everyone. I'm off to work!

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Hi Funnyface, sorry e&e is giving you the itches, hope they can give you something to soothe it. As Carolyn said you seemed to be coping with it and carrying on looking after others. As I posted recently, the list of s/es looks daunting but it does say, in an effort to reassure you, that you won't get them all. I should hope not! Hope things improve and for you too Carolyn.

Bon xx

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Oh funny face

I am disappointed that u r having the scratchy time as I keep telling myself that you cope with E and E so well ..and I must be a wuss ..I haven't really had the itch like u but obviously a very common side effect .
I hope it gets better you poor love ..this combination is definitely the devil pills with things and very few of us here on it. I know Lyndyloo took it for over 3 years with no problems ..I know she won't mind me saying but it's a tough one to manage. Good side is it takes appetite away and I'm enjoying the weight loss like you !

Well upwards and onwards as they say ..let's hope it's kicking the little blighters .
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E & E driving me crazy with itching today. I've been on this combo for a year. It has made me itch but the last two days it's driving me mad.  I had to stop it for 2 weeks to try and get an infected toe nail to heal. It was ingrown and they have had to cut at it several times. I started the combo back up and it is more itchy than ever. Taking antihistamine and putting a topical one one on two. I'm actually sitting on my hands so I can't  scratch!

 

Carolyn, I know you are worse than off than me with your SE's. I have scratch marks everywhere. Dug my self up in my sleep last night. I look lovely!

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When i was put on exemestane 2 1/2 years ago, my onc mentioned everolimus and gave me a Macmillan information sheet about it . I read it and my heart sank but when I asked about it the next time i saw him he said that I wouldn't be having it. I assumed it was because it had been taken off the list of drugs available on the NHS. I've been lucky that exemestane has worked for me. Hope the combination works for you Carolyn. 

Bon xx

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Hiya nicky
So another holiday ..Lucky you and hope u had a nice time. I read the old threads on E and E and it does seem to cause a lot of misery but I'm determined to keep going a bit longer.

I remember a few years ago it was withdrawn by NICE due to cost and side effects and a very low success rate but oncologist says it's back and avaliable again. Guess they have been offered it at a reduced rate and we are guinea pigs maybe !
Paclocibib ( ibrance) is the better option but only available still for first line treatment.
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Thank you Ramade. They have put me on Pregabalin now xx
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Hi Carolyn

So pleased that your scans showed no nasties but what a pain to have the SEs that you’re getting. I remember when the E/E combination was first introduced and my then oncologist said what a wonderful drug (the everolimus part) was as he’d been involved in the research for it. I said to him he should look on this forum as there were plenty of ladies suffering with SEs who wouldn’t have the same opinion as he had!  I still think all oncologists should use this forum as a guide to how we actually feel, not just spout the same information that is written on the leaflets! Anyway, great news and I hope the SEs do get sorted.

Hi to all other mets ladies, hope you are enjoying the bank holiday and the weather isn’t too bad where you are. A nice surprise yesterday when we didn’t get the threatened thunder storms but had a lovely sunny, and hot, day instead, just right to get all my post holiday washing on the line. A bit overcast today but can’t complain.

Nicky x

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Thanks ladies ..I'm only on a small 5mg dose and I'm hoping that these side effects will adjust ..it's been 8 weeks now so early days ..

Like everyone here ..we can't just stop our treatments as they are not optional....
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Yes. Pleased about your good news Carolyn, everolemus has dizzyness listed asa s/e, and I agree about the oncs not knowing about all the side effects...I think they also play them down too! I remember being told I’d likely get none on Cape...and the first month I got every one..AND a dvt to boot.!

 

i was told Paclitaxel likely wouldn’t give me half the listed side effects, but iv had most of the comm9n ones now..today it’s constant nausea and muscle/bone pain, other days it’s rashes-or sore dry eyes

 

Also get a load of nasty ideas running through my head but we all get those don’t we at times.

 

 

much love to you Moijanx😘 

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Carolyn.........after reading ff and ramade I had a look at everolimus on Macmillan and sure enough a swollen face is a possible se.  And it is not one of the least common ses. Perhaps onc will find this out and take it into account when deciding if you should have an even lower dose, or stop altogether. You could certainly point it out next time. We have to cope with ses as well as the disease!

 

Lovely day, but what a night! Lightning, thunder, lashing rain here. Thought it would never stop! It was like a firework display!

 

mo                  xxx

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Hi Carolyn,
Really pleased that your brain scan showed nothing to worry about. It is just terrifying waiting for those results. I hope you get your face swelling sorted out soon. Does sound like some sort of drug interaction.
Lots of love
Waffles x
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Sometimes with these things you have to try to solve them yourself. Hospital have no ideas.
Also, I have been taking codeine as a pain relief so am.now going to stop them for a week and see if it could be them interacting with the devil pills !
☺☺☺
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Carolyn, That is what I had read when I googled it. It came from a reliable site. The oncologist can't remember all these side effects. Also, who says your body can't come up with its own different set of side effects. The list of side effects is composed from people reporting them. 

 

We are rare birds sometimes! FF

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Remade

Thank you so much for saying about the swollen face ..oncologist says not a side effect !! I call everolimus the devil pill but determined to keep going and give it a try . It also says on Google it can intereact against denosumab too ...aagh. .no win.
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hi Carolyn, pleased to hear your good news. i found everolimus made my whole face swollen so had to lower dose. it can be quite a nasty one but if it works and you can take it that's good.

hugs

ramade xx 

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Hi Carolyn Great news and hopefully you are now able to relax and enjoy the bank holiday. Lots of best wishes to you all and heres hoping everything is working for us

Wendy
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Thank you ladies for holding my hand the last few weeks....it's a scary journey we travel with this cancer lark.

Hope everyone is coping with their problems ..sometimes the treatments are worst than the disease ...

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So pleased for you, Carolyn! Your new Onc sounds very thorough which is reassuring. Have a lovely relaxing weekend x

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Great news Carolyn, it’s so nerve wracking waiting for results x
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Awww Carolyn, I know I’ve already been in touch about your fantastic news but just wanted to jump on here to to join everyone else in celebrating your good news!......I hope you celebrated last night!
Let’s hope they can get your numbness sorted soon but at least you know it’s nothing sinister!
Hugs Janette xx
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Carolyn it must be a relief to have those results after a long wait. Hope they can do something for you and you can stay on e and e if it's working for you. You never know what you are going to pull out of the s/e lottery..

love Bon x

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Ah Carolyn I'm sorry to hear what you have been going though, must be so scary but brilliant to hear it's nothing nasty 😊 Xx

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Carolyn so glad you liked the oncologist and had a thorough appointment. Now to get  through the next 4 weeks. Are you still on a low dose? Maybe they will have to change it. You will need to decide if it's worth it. Maybe it will seem more tolerable since you know  it's nothing sinister now. These drugs are crazy. It's amazing how some of tolerate them and others can't. You had letrolzole and did so well. Letrozole was a tough one for me. Hang in there! Hugs! FF

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Carolyn...so very pleased nothing sinister going on....you have been having a tough time...hope this new oncologist is for keeps?  

 

Sorry about the strange symptoms.....mine are less unusual, but achy wrists, sore eyes,  irritated gut etc...oh and of course sore fingers, but these are all typical on taxol......

 

 

(I hadnt realised but exermestane does have dizzyness listed as a side effect.)

 

‘’loads of love and hugsxx

 

Moijan😘

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Hello tatyana

Sorry to read in Cape thread that it's stopped working for you ..somehow treatment becomes like a pair of comfy slippers and starting new stuff is so nerve wracking ..but hope the gem carbo works well for you ..I don't think u loose your hair either with that one ..
I was sad to stop letrozole a few months ago as I seem to tolerate it well but that's life!
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Carolyn, so glad to hear that nothing sinister is going on. Now let's hope they can do something about those symptoms! And it's great that you like the new oncologist.
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Afternoon Carolyn

Just sent you a PM. So pleased there is nothing sinister going on.

Time to celebrate.

Hugs
Linda
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So glad all clear but very sorry you’re not well. Hope you get some answers soon. Agree about the NHS.
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Hello ladies
Been a bit quiet here lately as I haven't been too well ..had a brain scan a few weeks ago and been waiting for results .
Brain head and face. .clear
Dental x ray ..clear ..no jaw probs.
Lymph nodes in neck ..clear.

Still haven't found out why I have a numb swollen face and dizzy spells but carrying on with exmestance and everolimus for another 4 weeks.

Had a new oncologist today ..brilliant ..just got everything checked out whilst I waited ( 5 hours but worth it )

Hip hooray for NHS. ...
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Hello Briony, welcome to our group. Definitely tell your doctor, always. i have pins and needles because of cancer pressing on nerves. For this i am treated with Pregabalin which is brilliant.

Hope this helps

hugs

Ramade

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Good!
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That’s good to hear Anne! Enjoying the sunshine here too.

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Hope you get an answer. Not sleeping is horrible
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So glad you had a good day. Blood count back up so on Ibrance again but lower dose. I haven’t heard of the tingling but someone else may well have done! I was very achy after my first zometa injection. Still sunny here!
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Welcome Briony! It could be the drugs causing this. Maybe a change in treatment would help. I have had a lot of different treatments, but not this one bc I'm HER2-. If anyone else had this treatment I'm hoping they jump in and answer you. 

 

Hugs, FF

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Hello all, this is my first post. I was diagnosed in June 2016 (breast spread to spine + ribs) and was initially put on docataxel, herceptin, pertuzumab + zometa. Docataxel was stopped after 6 sessions. Then in January this year I was told that wasn't working so they put me on TDM-1 and denosumab.
Anyway now I have horrendous tingling and pains in my toes, hands, feet which means that I haven't slept for 2 weeks!! I think I am losing the plot.
Any advice on how to manage this intolerable torrent?
I am seeing my oncologist on Wednesday and I do have a fairly helpful CNS.
Thanks in advance x
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Hi Anne, glad you have good support. Funny you should say about not thinking about cancer every minute, as I’ve thought that the last couple of days. Nice feeling isn’t it?

Hope your blood count is good to go tomorrow. 

My secondary is also in my bones, it was on my sternum that a lesion reacted to the chemo to show up on a repeat ct scan. I’m hoping that as I’m HER2+ they will agree to keep me on Herceptin and Pertuzumab for as long as it is working - I see the Doctors at the end of the month when I hope to be given the 👍 Also having Zometa every 6m for 2 years initially. Had the first one in March. And have Letrozole daily. 

Had a lovely day thank you, and the sun was shining which makes the countryside look so beautiful. Xx

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Lovely wedding. .watched every minute from 9am but Victoria Beckham looked liked she was going to a funeral in that drab dress and she's a dress designer ..all that money and a handsome hubby doesn't seem to bring her much happiness ..she wants to live in our shoes ..that's what misery is.

But a good day for the British economy with all those designer outfits , shoes and hats bought. Thought George Clooney wife stole the day in her beautiful mustard outfit and of course queen looked nice in lime green .
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It was nice and quiet on the beach yesterday but I did watch it later and loved their happiness, the music and Bishop Michael's sermon. Let's hope they are given the chance to have a happy life together without all the pressure.
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Did we see the cake? I watched but saw No Cake?M

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Victoria Beckham.apparently is miserable!! Someone's commented that she doesn't need to smile,  just look at her. Well I don't know what they see. Oh, she has a nice figure but her miserable expression takes all her beauty away. The drab outfit also added to the miserable look! I googled her and she looks miserable most the time. Very unattractive pouting!