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Yes I read that article too very encouraging lots of progress being made - it amazes me how medicine is advancing!
We are also off in our camper van next week touring Europe for 3 weeks. Got a beautiful new addition to the family my sister had a baby boy last week - very emotional as when she first told me she was pregnant wondered if I would get to hold him and her I am enjoying lots of cuddles😊
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Yes I saw that. It was really interesting. Thanks for posting the article
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[ Edited ]

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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[ Edited ]

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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[ Edited ]

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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[ Edited ]

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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Registered: ‎26-07-2015

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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