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Bone mets - please join in

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Oh Jellytot ..  .. you have had so much to deal with but envious of you having " Perfect teeth" .. my nashers are really drilled and filled to a minute of their life ... thanks to old age and bad dentistry as a child. 

Hugs xxx

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Big girls pants.jpgI think a lot of us are having scans this month so here ladies is the big girl pants we need to pull on to deal with it all .....hugs 

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Hello lovelies, sorry for my absence. I've just been recovering from my rads marathon. Yesterday I drove myself to the dentists which was a big step as I haven't driven in about two months. I'd convinced myself I couldn't because of pain and then I think I had become almost agoraphobic so I'm proud I did it. Dentists was just to check my teeth are ok before starting zometa, she said they're looking perfect, huzzah! This afternoon I have a meeting with my oncologist, I think it's linked with my trial and the PET scan I had about 10 days ago but we shall see. Tomorrow I have an appointment with gynaecology to discuss my oophorectomy, fun times.... JT xx

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Pippin, I had bilateral and reconstruction. This sounds aggravating! I hope someone has some suggestions. FF

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Joellek, I had xrays bc they thought I had pneumonia. I wasn't getting better so after two rounds of antibiotics went to see Inc bc xray had showed congestion and nodules. Onc walked next door to hospital to look at xray himself. He didn't like what I saw and got me in for an immediate CT. They didn't like the CT and immediately did a biopsy. Came back mets. They followed up with a bone scan. No bones at that time. Went to one spot in spine years later. I've never had a Pet scan. In 11 1/2 years I've had  2 bone scans. One in the beginning a n d one at 10 year mark because I insisted since CT of lungs showed one bone met. My onc never does tumor markers. Says they aren't reliable. They don't usually scan the brain unless there is a problem. I had an MRI of the brain at about 7 years. It was TMJ causing all the pain. I'm sure Dana Faber is doing what is needed. FF

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Oh pippin ..you poor love ..must be so uncomfy but I have no experience as I only had a lumpectomy which doesn't affect me at all.
Hopefully some ladies here will be able to help out with support .
Hugs xxx
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Hi

Red lump under my  arm had gone when checked out. Just a bank holiday Friday thing. I know never to self examine on a Friday (only causes anxiety all weekend before you can ring someone Monday, or Tues in the case of a bank hol) but now I know not even to look under my arm on a Friday!

 

Nearly driven mad today by breast prosthesis trying to push the remaining breast out of the way (like having a toddler on each knee and they both compete and try to push each other off even though there is ample room for them both) such that I just cannot wear a V neck top. I cannot work out why this is happening. Prosthesis is the right size and so is the bra. But no bra will fit central and the fitter at the mastectomy bra shop admits this and has no solution. It is the little things that get to me. Any one got a solution?

Pippin

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What am I Iike? A mother duck checking her ducklings are all ok!!
Glad you are all doing ok.
Hugs xx
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Hi all

I have been reading but not responding as busy couple of days. Went horse racing /abba night on Saturday so spent a Sunday doing housework. Yesterday had denusomab injection and today boob inflation. Fingers crossed will get some respite for a few weeks before my next set of appointments and then off on hols yippee. Enjoy the sunshine wendy
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hi,

i have a question for you all when you were dx with your mets how did the scan process go?

so first my mom had xray then mri on her tibia where the pain was and a larger lesion was found. next she requested a bone scan where the onc only wanted a biopsy at the time. bone scan showed numerous spots and biopsy showed mets. so next the onc asked for a ct scan for her lungs and liver....should he have checked anywhere else brain for example??

im trying not to be angry or frustrated with the situation i trust the care at dana farber boston and her onc is very smart and teaches at harvard univ and the whole 9 yards....but now im just sad why didnt he do scans every 6 months for example? why was his way we dont scan unless theres a problem....

is there any other tests we should be asking for? i read you guys writing about tumor markers? no one has said anything to us about those?

lost, confused, sad....and keeping myself together when i talk to mom!

joelle praying for a cure xoxo
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Hi all

 

Still here... just trying to cope with anxiety as first results appointment looms so keeping my head busy with housework, work, family, Wimbledon... or just sitting outside in the sunshine!!! 

 

xxxx

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Hi ladies, sorry Carolyn for the absence I know your not a happy bunny if we don't check in!
I've been busy with work etc.
Hope everyone is keeping well.
Hugs Janette xx
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carolyn

,i was like you ,wondered where everyone had gone ,in fact being new to forum i thought i must have pressed something and deleted myself,pleased to say no i'm still here ,and have just eaten a roast beef sandwich with apple chutney ,that my friend brought me,so a start i hope to eating meats once more ,it took a bit of getting down but managed two small slices with crisps and coleslaw.

take care renee.

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Calling bone Mets ladies ..where are you all ..feeling like Billy no mates and this thread was slipping down the queue and in danger of being redundant .
Happy days xx☺☺
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Renee, The only good thing about it is, it will help me keep off the 60 lbs I've lost and lose some more.I've tried it more than once ow and it's been disgusting everytime! I still crave it though! I'm sorry you are having such a difficult time with foods. The only suggestions I have are maybe some very small amounts of some of your favorite comfort foods. Then maybe you could eat a few times throughout the day, nibbling at some things. 

 

FF

 

Grrrr once again I've been awake from 2AM to almost 5AM. Going to try and go back to bed. 

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FF and Renee
I'm sat here with my smug face on ...ate a whole bag of Terrys choc orange yesterday and they tasted lovely !!
Actually it would be good for me to loose the taste as my jeans would fit better !!
Hugs xxc😐🍫
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hi funnyface 

i too tried a choc bar last eveing but it tasted vile ,and was so dissapointed,as all other sweet things i can eat ,but can not face savoury dishes at all,hoping it will pass soon and get me back to normal,so you are not alone.

take care,

renee

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Carolyn, I'm having a major chocolate attack!! It still tastes terrible though! Oh jeepers I'm going to go crazy!

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Hi Carolyn,

gosh would love to have eaten your lunch and why bother if it's healthy or not ,quite honestly i could not care less now what is healthy and what is not,just would love to be eating meats again as do miss them ,but with luck this will pass and my onc does not seem bothered so will just have to hope .

Renee

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Hello Renee
Maybe Sheila will reply again I'd she is reading this.
I decided when I got to the pub to have a cheeseburger and chips and a shandy ..oops not healthy but I did have a bit of salad with it !
I think if you have a small appetite you must just go with what you enjoy to be honest.
Hugs xx
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hi carolyn ,

i hoped you enjoyed your walkable pub lunch ,wish i could eat one as i love my roasts but sadly at the minute can not face anything savoury,and i hate it ,i tried some soup with a roast beef sandwich but no go so had to leave it alone ,maybe it will just last a short time ,heres hoping anyway.

i can not find this sheila anywhere not even her profile???

hugs 

reneex

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Hi Carolyn, I just saw your post and find this interesting because i asked my onc if they would be scanning whole skeleton because of mets to bones and pain in thighs. Well, she said yes, and when I was about to go through the machine I asked are u doing whole skeleton and they said, chest, abdo, pelvis. So what about our limbs? I'll ask on wed and let you know.

hope you enjoyed lunch

ramade xx

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hi ladies,

im kinda worried my mom has been in agonzing pain the past few days and each day its getting worse. my mom isnt one to complain and has a high tolerance for pain. im not sure whats going on if she tired herself out in the house, if it could be the emotional shock, or perhaps psychological because she saw the bone scans and where the spots are and she feels them aching? but its to the point it hurts to wallk hurts to sleep on the arm that has a spot?? she goes on monday for the CT scan result and to begin zometa injection.

i dont know is this pain normal? she feels weak, and her legs hurt hurt bad. and why is it all of a sudden now?

i told her to ask the onco on monday if there are any painkillers to take as well?

any advice?


joelle praying for a cure xoxo
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Renee
Sounds like it was a private message ?you will see a little envelope at the top left ..click that ..if not hopefully the lady will read this thread and understand.
I'm so glad you are feeling better today . It's good and bad days with this dreadful dx but hey hoo ..enjoy the sunshine today ..we are just off to get a nice roast dinner at our local walkable pub.
Loads of hugs xxxx
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hI carolyn.

just to say i do feel loads better today,plus my rash appears to have gone which i am pleased about.

now i have a problem ,,,a lady named sheila sent me a post on friday she said she had just read my profile and i dont know what has happened but i can not find this post to answer her and i do not wish to appear ignorant,by not answering her ,any thughts on how i find the missing post??

thanks renee

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I think hospitals vary in their scan regimes ..they say its not good to have too many.
I'm due for my ct scan this month but I'm always concerned as they don't cover the femur and legs where my problems are so I think I will have to ask for xray as an extra.
We have to trust on oncologists with our welfare and care but in 13 years I have had really good care on the nhs.
Xxx
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thank you πŸ™‚
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Hi dragoncarine

So sorry to here your feeling so fed up, its a difficult time for you, but you are receiving good advice from ladies here who have been through similiar. 

I am relatively new to all this to and like you can't understand why they only do a mammo after primary! Nothing was ever discovered on mine and I had a recurrence in my breast, which I found a couple of weeks after a mammo! 

Anyhow that was 5 years ago and now I have bone mets, which were discovered after 6 months of scans and waiting for results. Mine were only confirmed with pet scan, but like you I only have CT to monitor. When questioned my onc said that they know what they are looking at now it's been confirmed and are just looking at changes. 

Whilst I think it's difficult to understand this, I think we do have to put our trust in them, I have had several long chats with the cancer nurse at the chemo unit about my concerns and this has helped, she is much more informative than the BCN who seem to be only interested in supporting people with primaries. Perhaps it would help you to talk to a nurse, they do seem to have more time to explain things in more detail to you.

Anyhow please keep reading and ranting these posts have helped me enormously, even if you don't post. 

Im perhaps one of the "lucky" ones at the moment, faslodex and denosumab has kept me stable for early a year.

Keep positive. Love and support to you

Bel. 

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I think the worst thing is that I'd been going back to GP on and off since August about these pains, even had a mammogram back in January and ultrasound scan of sternum at the same time because of my concerns... every time told there was nothing to worry about. Oncologist now reckons my cancer must have been growing for quite a while so obviously was there but not spotted. Looking at the Bone scan the areas were really clear, not so much on the CT scan - which is why I'm confused they're only redoing the CT scan - are bone scans more expensive? Is it possibly easier to see differences on CT scan once you have a baseline maybe?

Also on a side note I can't help thinking that all the mammograms I had after my breast cancer were a waste of time & money since they failed to spot the metastasis. Anyone have a positive story about mammograms to make me feel better?

 

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Poor you, having so much to deal wth at once. No wonder you're fed up. When you're in a lot of pain it's easy to feel that the doctors don't care, though I'm sure they do really. There must be a reason for them being more interested in your lung and liver. Do you have a named breast care nurse? Perhaps you could give her a ring, tell her how you are feeling and ask her to explain why they are showing so little interest in your pain and not doing a second bone scan. Like you, I hate living on pain killers, but it's better than living with excrutiating pain. Don't worry about the rant - this is a safe house! I hope it makes you feel a bit better.

Big hugs

Janebee

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Hello jellytot

Well done for your "jellytot toddle" ..you can't beat a bit of fresh air in the lovely summer weather.
I go out everyday although some days I am tempted to slob out but even just a walk around my area in the evening is very theraputic sometimes.
As the rads wears off in time ..no doubt you will feel stronger and be able to do more.
Take care xxx
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Hello dragoncarine
Welcome to the forum and this thread ..phew what a lot to deal with ...
The ct scan will probably be the one that prompts the right treatment regime for you but tamoxifen is a good tried and tested pill and denosumab is the bone juice so you are being treated with the correct procedure .
I think we all expect the oncologist to pull the magic bullet from the bag at times !!
Anyway ..we are here for you ..real people that understand your rants !!
Hugs xxx
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Bone scan showed up areas of cancer in sternum, ribs, upper arm, shoulder blade & skull. I get pain  in my arm when I move it and pain in my sternum when I breathe (i.e. all the time). Prior to accidental diagnosis the pain was put down to a possible rib/muscle injury. I've been put on Tamoxifen & Denosumab but no other treatment. Still struggle to accept that they can't just cut the cancer out like last time. I also have one lung which is half full of fluid & has "several nodules", a couple of suspicious spots on my liver, a skin cyst (in which the cancer was discovered) that is now regrowing after having been cut out.

Feeling fed up with the pain - I have CoCodamol & Dihydrocodeine but hate having to live on pain killers. Does it get better? Only had the one scan so far. Got a second CT scan booked for a couple of weeks time to see if there's been any change but no second bone scan - not sure why this is? I get the impression the hospital don't really care about the bone mets and they're more worried about the lung & liver although I have no symptoms from those. Sorry about rant, I've been feeling fed up a lot the last couple of days

 

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I've just managed my first walk in a fortnight! Just a mile around our local park but I'm feeling v accomplished πŸ™‚ Was lovely to get out and get some fresh air and a change of scenery xx

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Joellek
What a hard decision for you having to give up your new lifestyle to be with your mom.
Its hard with so much distance though.
When I got my primary dx in 2004 my sister was living in Italy ..she couldn't settle due to the worry and miles and packed up and came back home. She was my rock through chemo .
Hugs xxxx
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Zometa is easy to have - I had it 3 times and then changed due to my veins.

 

make sure you pack your baby's favourite teddy in your suitcase and not in the boat! My youngest's fav teddy got put in one ofnthe boxes and took 2 months to arrive... 2 months of chaos and stories about this zebra being the captain of the boat! πŸ˜‚

 

The weeks will fly by and before you realise, you'll be giving her a massive hug xxxx

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pmol, nicky, and ff thank you so much for your replies...cant tell you how comforting they are....the big move is gonna be in 2 weeks. its just all so hard to wrap my head around because mom was suppose to arrive here this past tuesday for summer vacation. so it all flipped around so quickly.

she had her cat scan today we get the results on monday and she will start zometa on monday as well. i cant explain the how sick i feel and im sure she does too waiting for the scan results. i just cant handle anymore bad news at the moment...


joelle praying for a cure xoxo

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Hi ladies

 

Joellek, don't panic.  Make sure the move goes ok and then you'll be able to be with your mum and enjoy times together.  I understand more than you can think... I live in the UK but originally from Argentina so have ALL my family there.  Its been hard on everyone the distance but we have to be grateful for the tecnology we have nowadays that allow us to speak/see each other.   When we found out that the bc had come back, i facetimed my mum and didn't have to say anything because she knew... her and dad came a month later once we knew what was going on and I was on the treatment so it was better for them and me.

when are you moving? Xxxx

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Joellek Your mom will be so happy to have you and your family close. Quite a big move to go back! I wish you luck. I do believe not being with your mom to see her must make you more frantic. I know it would me! FF

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Hi Joelle

Ignore what I previously wrote about trials - they apply to the UK only. I think all of the drugs your mum will be on are available in the US but I'm sure FF (Funnyface) will steer you the right way. I see now how worried you must be not living anywhere near your Mom so I hope the moving back to be with her will help you both. A major upheaval though for you so make time for yorself to adjust as well. 

Liz/Bousy, you don't need steroids with eribulin. Some women seem to be prescribed them automatically (like me) as their hospital can unfamiliar with the drug regime, others don't get them at all as their hospital knows they are not necessary. I have now stopped taking any steroids as I didn't want the usual highs and lows from them rather than any other reason. 

Nicky x

ps Hi to all bony, and other, mets ladies - hope your treatments are being kind to you and the side effects minimal x

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thanks moijan for the input!
funnyface, you didnt miss anything its me who didnt share bc i didnt want to bother you ladies with my details when you and my mum are the more important ones here. last time my mom was dx in 2012 i was at home with her i had just finished college. i didnt skip a drs appt or treatment appt. i got married in 2014 and moved to lebanon where my husband lives, which is why im not with her at the moment so my brother and sister and mum are relaying the info to me as i pack and get ready to leave here for good to go be with her because im her rock.

i think because of my location this forum came up when searching and im real glad it did. xoxo

im not sure why this time im so afraid, maybe bc im far at the moment? maybe because its bone mets because before your faced with it you hear these stories about stage 4 and you just pray it never comes close? and maybe bc im a mom this time around and want my mom to stay around for longgggg.

enough of my sob story! god be with you ladies you all amaze me and i keep taking strength from each of your posts

joelle praying for a cure xoxo
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Joellek, So are you in the UK and your mom in the US? Somewhere, I must have missed that and just realized it. I'm 30 miles West of Philly. FF

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Hi Zometa has been around a long time, 

i have been on it 3 1/2 years myself, with no side effects.xx

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thanks ladies for all the help...

so the first injection to strengthen the bones is called zometa (i guess its under clinical trial??) she goes to dana farber in boston for her care.

her ct scan has been pushed to tomorrow bc she is allergic to the dye and needs to be premedicated in advance.

i dont know why this time it just feels so scary seems like we were stronger last time...
im so worried the treatments will take such a harsh toll on her although shes a strong momma, but this time i have a 2 yrold daughter who shes been waiting to live near anxiously bc ive been overseas for 3 yrs and im just worried she wont be able to hold her, play with her, or run after her like shes been anxiously waiting for...
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Hi funnyface, 

Have looked at the spongebob page and left a quick comment. 

Take care, 

Liz x

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Liz, That is quick fir going through treatments.  I'm not sure either if you need steroids with it. Did you look on the "Sponge Bob" thread? My oncologist mentioned this chemo but we need to find out if I can take it bc of my life threatening seafood allergy. It's the iodine in the seafood that I'm allergic too.

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Hi funnyface,

 

I was only on Faslodex for 4 months as 5 cycles of Capecitabine didn't work either. I was diagnosed with secondaries in September 2015 and went on docataxel in February 2016 After second cycle ended up with perforated bowel. Oncologist was worried that the chemo may have had something to do with it. I think it was the steroids. Other mets started in September 2016 and so far nothing has worked. I live in hope with Eribulin. Don't know whether you have steroids with this?

 

Liz x

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Liz, I'm sorry my memory is not the best and I just can't remember the treatments everyone has had and how long they have been on this beaten path. It is always a bummer to get negative results. A lot of times I have noticed when a drug is failing, but I didn't with ibrance. The combo I'm on now I feel I might be symptomatic. It is a little hard to tell bc some of the SE of it are how I usually tell if I'm getting worse. I usually get a good amount of post nasal drip and coughing. I've been waking up with this every morning, but allergies do this to me too. The treatment can cause coughing. Maybe the area your changes were in didn't make much of a difference in how your liver and lungs are functioning. Plus if these changes were small it might not have been noticeable yet. How long were you on faslodex? I haven't had Eribulin yet, so don't know much about it and SE. Not sure if it is notorious for any particular SE. My onc has mentioned it as a next possibility for me. I wish you the best! Hoping Eribulin kicks butt! It is crazy how one drug can be a miracle drug for some and a complete disaster for others.Hang in there!

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Hello bousy
Sorry to hear about you scan results but you now have another treatment plan and the good news is that there is a very good thread with all the spongebobs .it's on treatments and called "chemo buddy ..." there is loads of support there but being a spongebob doesn't mean you can leave us here on the bone Mets either !!
Hugs xxx
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Joellek, I agree with others. Your mom will be getting an injection to strengthen the bones. The other injection is most likely faslodex which is a hormonal. This would mean her breast cancer is ER + and feeds on hormones. They try to rid the body of as many hormones as possible. Our ovaries and adrenal glands produce hormones. The other drug is most likely palbociclib in the USA we call it ibrance. Much easier name. The hormonal faslodex might cause joint pain. I was not on this hormonal, I was on letrozole (femera) along with ibrance. The letrozole caused me terrible knee pain. The ibrance is known for lowering your white counts. It also has been causing a lot of muscle weakness especially in the legs. I noticed after being on this for about 9 months that I couldn't even step up on a curb without a tug from someone. I also then realized how much I was pulling on railings to get up steps. I started doing strengthening exercises. I did not improve but I remained stable with strength. I took this combo for 21 months. I finished it the end of April. My leg strength has improved to the level that I can step up on a curb now. I'm starting to be able to alternate legs on the stairway. I can go up the steps with holding onto one railing now, depending on how bad my knees are hurting. I would truly suggest that your mom start with some leg strengthening exercises right from the start. I also found out my arms are weaker too. I tried to take down an 8 foot folding table at work and couldn't do it, by myself any more. I don't know if exercising from the beginning will help prevent the weakness, but it is worth the try. Also, there is a USA forum called bcmets.org where you can find women on ibrance. Not too many ladies in the UK have received it. It became available here in Feb 2015. It seems to take this combo a little longer to show results. My first scan after 3 months of being on it showed stable (stable is good but my results at 6 months was better) My scan at 6 months showed all tumors in lungs had shrunk and the fluid in the bottom of both lungs was gone. I also had these areas in my lungs that they called ground glass opacity. It's not a good thing to have this and it was completely gone. My breathing was so much better. So be patient waiting for results! This combo was the best results I had as far as changes for the better. All other drugs basically kept me stable a few with slight reduction. Vinorelbine kept me stable for 5 years, it was my longest duration. Best of luck to your mom!! Hugs to both! FF

 

Oops forgot to mention, that many ladies need a dose reduction on this combo bc their white blood count goes to low. For some reason I was told that the neulasta injection that they usually give to bring it up doesn't work with this combo. I was able to stay in the high dose. My count would get low but not too low. It was too low one time near the end of a cycle and they had me skip the last three pills. It is my understanding that it still works fine at a lower dose.