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Bone mets - please join in

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Re: Bone mets - please join in

Nicky, have a wonderful holiday and good luck at the oncs.
Carolyn, have a wonderful special christening day and hope it blogs out everything else for the day.
Ff glad your itching is better hope they sort your heart out.
I will have a wriggling baby boy to cuddle in October
Love to all Non xx
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Ff

Getting really fed up with all these side effects of pills ..I just don't feel me anymore!

I'm not sure whether size 10 wide is US size as it sounds rather large ! I'm a humble size 5 in UK size.
I actually bought just a pair of cream lace ballet pumps ..boring but my jacket is lace .

When it comes to pill popping these devil pills . .I just feel like not bothering but then I think why let the cancer win ?
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Carolyn, The heart problems showed up when I needed the EKG for my back surgery. It's nothing major. I couldn't believe how dizzy I've been on the medication. Hoping the new medication doesn't do it. 

 

Lol, I was just about like Balooh! I'm a scratcher when I itch. I'm worse than a little kid. 

 

I still need shoes for Charlotte 's christening, too. It's on the 24th. I'm not a shoe shopper! Not when you wear size 10 wide. Hoping the toe is healed by then!

 

How are you feeling? Are you still having problems? These medications mess us up!

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Hiya ff

Sorry u have heart problems now to face ..what with your toe and eyes ..it's been a nightmare time for you.

Glad the itching is better ..I had visions of you out in your garden ..scratching against a tree like balooh in jungle book !! Ha ha. 🐵

Trying to get some energy to buy some shoes for christening on Sunday. ..

Xxxxx

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Wriggling babies is right where I'm at too. Charlotte is 5 months and cute as a button. Last Saturday her and my daughter came over for one of my hubby 's big breakfast. I took her outside for awhile to enjoy nature. Touching the dew on my host, touching flowers and trees and watching birds. Hubby mixed up salt and flour dough and did her hand and foot prints. 

 

Like you Nicky, I never thought I would see this, but I want to keep seeing more! Good luck at the oncologist. 

 

The itching has settled down the last couple days. Had a cardiologist appointment yesterday and had to change my medication. I had started a med the end of February and have been dizzy. Easter morning I passed out when I got out of the shower. I have mild congestive heart failure from years of medicine. The heart medication had lowered my blood pressure too much. I had been slowly lowering the dose of the heart med and was down to 1/2 a pill every other day. When I went to the cardiologist my blood pressure was still too low.So she changed it. We shall see. 

 

Beautiful weather here for a few days. FF

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Hello nicky

Oh the joys of wriggling babies ..twins are 8 months now ..wriggle and jiggle too much for me to manage. They are being christened of Sunday which will be nice ..followed by a hog roast nearby to church.

Glad u have recovered so well after the liver op and off on another holibob. A friend has just been dx with aggressive liver cancer but they can't find the primary one so treatment still being delayed.

So u are off to be used as a dart board later ..denosumab and faslodex ...ouch .
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Hiya riverside dawn

Nice to hear from you ...think I read on another great you are doing OK on the regime.

Trouble is we all take so many pills and potions it's hard to tie down where the problem is from !

Looking at the time you posted ..you seem to have the same bizarre sleeping habits as me ....I make coffee, read or play on the Kindle but of course then I'm asleep to lunchtime ! But hey hoo ..I'm retired so allowed.
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Hi ladies

I hope you are all doing well and enjoying the sun as and when it appears. How lovely to be off in your camper vans, a little bit of home from home but in a different place 😊 I’m currently enjoying some time with my 9 month old grandson, I would say I’m having cuddles with him but as he’s a little wriggle pot I’m not getting too many of those! It is very tiring I must say, especially with extensive bone mets in my spine. However I wouldn’t miss it for the world and seeing as I didn’t expect to see my daughter married let alone have a baby it is an extra special bonus. Off to the oncologist this morning for what I hope is a fairly routine appointment, but they do love to serve you a curve ball every so often so I’ll keep my fingers crossed! It’s been a great few months with no oncology appointments at all, unlike last year when I was on Eribulin when I saw one for every 2 weeks out of 3. I’ve just been going up to the ward to see the nurses for my Fulvestrant and Denosumab injections which of course take hardly any time at all. However a routine scan is due next week but I’ll delay the results until I get back from a long planned holiday which involves a wedding which will be lovely. Obviously I’m hoping that my recent liver resection, which got rid of my liver mets, has helped with the tumour load and that the current treatment regime has kept everything else stable, well a girl can dream can’t she?

Keep on keeping on ladies

Nicky xx

ps Carolyn, I may have to report some of your posts for ‘inappropriate content’ as you keep mentioning the ‘S’ word! At least you have the good sense to not use the proper emoji - even that gives me the shivers, ergh. X

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Hi all, I haven't been on for a while. Just trying to catch up on the latest news.

Carolyn - a note about codeine, my husbsnd's head swole up terribly a few years ago. We were skiing and he'd had a chest infection the week before. One day we skied pretty hard with friends, stopped for a drink and Mark's face was swollen with his glasses embedded into his skin. By the time we skied back to the village he was practically blind his whole face/head was swollen. This went on for several days. The doctor said it was a reaction between the codeine and antibiotics which was made worse by the strong sun.

Perhaps the may heatwave may have been a contributing factor for you? X
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Thank you ladies yes going to treasure every moment with him!
You are having glorious weather Dorset is beautiful keep having a wonderful time fellow camper bon😊
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Sarahlew, Greetings from my campervan. We are only in Dorset but it's beautiful and warm and sunny. Cuddling your nephew must be a great joy. There's nothinglike it. Congratulations xx
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Sarahlew, Babies give life a whole new meaning. Those cuddles make everything better. Enjoy him! FF

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Thanks tatyana!
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Congratulations Sarahlew, how wonderful to have cuddles with your new baby nephew. Give him a hug from me!🐣
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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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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.