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Bone mets - please join in

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Re: Bone mets - please join in

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!

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By the way why does Victoria Beckham look so miserable? Her life looks pretty good from the outside!
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I have excellent support and am just starting not to think about cancer all day every day! My secondaries are in my bones. I am on Anastrozole and bone injections plus Ibrance but I have had to have two weeks off Ibrance as my white cell count has dropped. Appointment tomorrow. Do you know what treatment you’ll be on? I’m not sure where your secondaries are? Maybe you’d prefer not to say. Enjoy seeing your daughter. Enjoy all you can. It’s easier said than done but between appointments and treatments life needs to be lived. Well done you for the progress you’ve made. Hope it’s sunny there!
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Hi Anne, fab wedding yesterday they so made it their own, and seemed to enjoy it all as did the rest of us!

I am doing ok, general aches but manageable and fatigue but again I’m working out what i can and can’t do, so still learning!

Got another 10 days until I see the doctors, when I hope to have my treatment plan agreed, so for the momemt I’m feeling calm and even have times when I don’t think about cancer at all. That’s certainly progress! Still waiting for my first counselling appointment. 

I hope you are doing ok and managing the side effects of your treatment. Do you have good support? 

I am off to see my daughter today, can’t wait! 

 

Have a lovely day everyone. Xx

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I.just loved the royal wedding yesterday ..breath of fresh air ..and a boost to UK economy with all those designer outfits, hats and shoes!
Victoria Beckham looked miserable and drab but George Clooney wife stole the style stake for her beautiful outfit. Queen looked lovely in lime green too.

I'm proud to be British when I see how the wedding was staged so beautiful .
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How are you getting on butterflyflyfree? Hope you are okay and enjoyed the Royal Wedding and maybe some sunshine.
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Yes. Lovely weather and a stunning bride. Loved the dress. So elegant
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Meghan looked stunning! Elegant gown and gorgeous vail. The groom looked handsome. They both were shining with love. Wish I could have tasted cake. FF

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We have a moth infestation...so creepy, keep finding pure all over things and even under my quilt!

 

so I think stink bugs and huge ferocious bees would really creep me outxxx

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Hey Carolyn

He was only looking for the thread on the web and spied you!

Pippin

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Ff
Stink bugs sound awful ...ugh. it's funny once u get it in your head ..it makes sleeping difficult.
We have these rough ugly bees that keep coming in our lounge. .they are not honey bees but have a large stinger. Hubby thinks he's killed about 2 a day for the last month as they won't go if u open the window and are quite aggressive ..think they must have come from Europe or something. ..never seen them before.
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Carolyn, That's what I've heard too! We also have these bugs called stink bugs. You can smell them when you squish them. They have a shield which makes them hard to squish. They came from one of the Asian countries and are spreading over here. If you have a couple of them in one spot you can smell them too. We drown them in a bottle of soapy water. Before I get in bed I do a search. Ceiling, walls, windows, shake my sheets, etc. Especially the ceiling. I don't want one to lose its grip and land on me.  We usually get one stink bug a day. They say an exterminator can't do much for them. 

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Got into bed last night hoping he didn't have any brothers or sister's seeking revenge but took a few extra tools to bed just in case ....a bowl to cover one with and a fly swat !! I am not that scared but hate the thought of them crawling on my pillow. Didn't I read somewhere once that everyone swallows a few whilst sleeping during their lifetime ! 🐜🐜🐜🐜🐜
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My daughter can't stand spiders. She didn't get it from me, and it was apparent from a very early age. it seems to be a deeply embedded primal instinct.

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Carolyn, it gave me the creeps just reading your story! If they have a picture of a spider in the newspaper, I have to turn over the page and not read it!
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AAaaargh. I would not have been able to get back to sleep unless I had done the same thing Carolyn. I really hate spiders and I can feel awful for days if I see a big one. I even hate the emojis of them and keep meaning to write to the developers to take them off the animals page!

Hipe you got back to sleep and you have seen the last of them.

Nicky x