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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Hello ladies
Very interesting about the sickness thing ..just thought it was my bad eating habits! I have to eat really basic stuff and rennies are my best friend.
I find crumpets and butter very helpful and those little yoghalt bottles good.
Hadn't thought of it as a calcium deficiency though ...thanks for the info.
Hugs xxx
rosie53
Member

Re: Bone mets - please join in

Thanks Lynn, I've just left a message for bcn to give me a call. I'm like you, felt a silly questioning it but it's kept me awake most of the night and feel really rotten this morning. I haven't taken my Adcal today yet in case that makes it worse!
Janette xx
Lynnq
Member

Re: Bone mets - please join in

Good morning Janette. I suffer from nausea on and off like you. When I first saw GP about it, over a year ago it had been pretty constant for a month or so she gave me some anti sickness pills - domperidone - which ease it, but only take them when It gets really bad. She also ordered some blood tests for me which all came back okay apart from a Vit D deficiency - even though at the time I was taking adcal. She prescribed some 'booster' vit D. I no longer take Adcal or calcium supplements but still often have nausea -maybe speak to your GP or maybe BCN. I told her that I felt a bit silly just telling her that I feint sick, but she was very good and she understood that it can be quite debilitating. I also find that if I have something to eat it helps Hope everyone is as well as they can be and ready for Christmas.
Lynnq
Member

Re: Bone mets - please join in

Good morning Janette. I suffer from nausea on and off like you. When I first saw GP about it, over a year ago it had been pretty constant for a month or so she gave me some anti sickness pills - domperidone - which ease it, but only take them when It gets really bad. She also ordered some blood tests for me which all came back okay apart from a Vit D deficiency - even though at the time I was taking adcal.
rosie53
Member

Re: Bone mets - please join in

Good morning ladies, hope you're all keeping well and are ready for the festivities!
Just got a quick question, does anyone suffer from nausea? Just lately I have been getting it quite a lot on and off, just feeling really sick, I'm sure at some point i have read that calcium can play a part in this????
Hugs Janette xxx
funnyface
Member

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Bonariensis, Lol Yes I live out in the "sticks" as they call it here! There are 3 houses at the bottom if the lane. To the left of the drive is 9 acres of woods, to the right the neighbor at the bottom has 4 acres, we have 2 acres. We don't have much area in grass. We are on the north side of the hill, so not enough sun for most plants. Plus the deer love to munch on the plants. I can't see any neighbors from my house. When we first built it and moved in I was a stay at home mom with no car! No car, no neighbors, and you can't walk anywhere you would get run over. I told hubby the trees were starting to talk. I grew up in town, with neighbors, walks, stores and street lights! It's dark here at night. I told him I needed a car that I didn't care how old just so I could get out of here sometimes! It was a big adjustment.

bonariensis
Member

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Funnyface Good to see some pictures of your home. I used to like snow but have gone off it recently. Your house looks like it's out in the wilds but maybe you've just got a big garden (yard)? -Two nations divided by a common language! B xx

funnyface
Member

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Carolyn, I work at the senior center and even the seniors with canes are faster than me! I really think I've done too much sitting around with these knees! 

Carolyn52
Member

Re: Bone mets - please join in

FF. .know what u mean about slow and knees ..I walk with a stick..slowly. we have neighbours in their mid 80s ..walk their dog 3/4 times a day ..not a walking stick in sight !!
We downsized to a house on the flat and nearby to shops for our old age ..18 months ago. Best thing we ever did.
Hugs xxx
funnyface
Member

Re: Bone mets - please join in

Oh, I'm not active and fit! That's the problem. My knees can't take the uneven turf of the wood a! I so of never be able to walk up that drive! I walk slower than most elderly people.  I get out of my car in a parking lot and people in their 80's pass me and are in the store in half the time. I really need to push myself this summer to improve walking! Our house is modest for this area. Most of the homes are a lot bigger and fancier. I would truly like to move in town. I love it out here in the sticks, but too much work.

Carolyn52
Member

Re: Bone mets - please join in

Omg FF ..that driveway needs constant maintenance by the looks of it. Thanks for sharing ...it looks like a real winter wonderland like the US Xmas films I have been watching.
Our house is much more humble ..in the town with about 50 foot front garden and the same at the back. Plenty though to keep hubby busy!!
No wonder you are always so active and fit.
Hugs xxx
funnyface
Member

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Carolyn, The driveway picture with the plow showing is looking up our drive. The house is at the top. The other shot is taken from the same spot but looking down the rest of it. That was snow on the drive that turned to an ice slab all the way from the top. The drive is stone so when you plow you always have snow left. This compacts and  then and turns to ice in a few days. We have to go get stone from the quarry and sprinkle the whole drive to get the oil truck in. FF

funnyface
Member

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Carolyn, We have a GO, but can't use it bc it's not finished. Hubby built our house and we ran out of funds. DO is still cement block waiting for stone. We have never come up with he funds to finish it. Needs stone and hearth. I keep trying to convince hubby to dry wall it in, make a nice hearth and mantle. Haven't mentioned it for awhile, but maybe I should try again. We have oil heat and also a coal stove in basement. If we spread our heating costs throughout the year it covers about $200 a month to heat the house. It is a single 4 bedroom house with a finished basement. It's fairly large for 2 people! Except when we are on each other's nerves! I would like to down size and get something smaller and easier to maintain. Our driveway is difficult!

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Carolyn52
Member

Re: Bone mets - please join in

Hiya FF
Phew that's cold ....don't know how u cope with snow and freezing rain. I live down in the s west in UK so we don't get much snow or cold really. Your electric bills must be huge ..no log fire ?
I'm watching Xmas movies afternoons and most of them are US ones and always feature huge log fires and snow so will be thinking of you.
I've just got to get Xmas food this week but out on Xmas day so no slaving over a hot stove for this one !! Pressys wrapped and just a few more last minute things ordered online to be delivered next week.
So ho ho ho everyone .🎅
Bandit
Member

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Haha Caroline yes it is a big doc & can certainly wait until the New Year.

Nicky agree with you.  12 years ago the HER status was never mentioned to me and it was only when there was so much press coverage re Herceptin that I phoned my surgeon and asked for my lump to be tested.  I had a bone biopsy when I was dx MBC recently and had an anognizing wait to find out if status had changed which in my case it hadn't but it shows how things are moving on quickly. Just had a lovely walk across the fields with my dogs a 16 year old Border Collie Bella & a 18 month old Wolfdog - yes he really does have Wolf in him.  Bandit xx

funnyface
Member

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Good morning ladies! I'm on the lighter side of conversation today! It's 7AM here and I'm hanging out in my PJ's. Quite cold for Dec. It is 25F out today. We had a little  snow and now freezing rain! The last two days was bitter. It was 12F which when I converted it that's  -11.11C!  I finished my shopping yesterday except 2 things. We were completely in the opposite direction, got home at rush hour, my knees were killing me, and I couldnt take any more cold. The 2 places I needed t  go to were in an area that's crazy with traffic at that time and would have been worse on a Friday night, with snow and Christmas on the way. These 2 places are 5 mins from where I work so I will go there on Monday when it's not so crazy! Cookies are made, house is decorated, cards sent, now for wrapping or maybe some rapping too. Then the cleaning!  Hoping the electric stays on with the ice!  Have a great day! FF

nicky08
Community Champion

Re: Bone mets - please join in

Hi Bandit. I agree about having knowledge - it gives us back some of the control that we crave after this SBC diagnosis has robbed us! I just wanted to point out to any newbies that not all drugs available in the USA are routine in the UK. However it's always good to know what is out there, hopefully the drugs will then become more mainstream as Herceptin did all those years go and now Pertuzamab (which is now available having been on the CDF list for ages). I have always researched as much as possible but initially there is so much information to try and absorb you don't really know what is right for you. Having said that I have been living with SBC now for over 8 years so I've had plenty of time to learn! This forum though has been a real source of good, non-scary information about treatment. I only learnt from here that your receptor status can change which is why I  asked for a liver biopsy in 2013 and found out that after 10 years of being HER2- I am now HER2+. No one else even mentioned it, even my onc was surprised that it had changed but it did mean I moved on to more targeted treament. I definitely challenge my oncologist about his decisions, something he's had to get used to - poor man - and have sought second opinions to back up what I've learnt or to confirm I'm on the right treatment.  All things we could and should do if in doubt.

Enjoy the wrapping - and rapping 😊🎁🎤

Nicky x

Bandit
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Hi Nicky. Good point you make about the Bestbird document being USA based however it gives lots of information about the different types of MBC and the drugs that are available most of which are NICE approved.  However the drug I am on is not yet approved in the UK and therefore I am on a trial but I think it is  good to know what is out there or in the pipeline.  For us new to this there is so much to take in and we don't always know the questions to ask or have an Onc who is as clued up as we hope they are.  I remember the fight that was put up to get Herceptin approved in the UK and what a difference that has made to lots of the HER + ladies.  I have been extraordinary lucky to have 3 great Oncs involved and put onto a trial for my ER+ HER - type of breast cancer but this document is useful and FREE.  If you decide to download it and have a look through I would be very interested in your thoughts.  I don't know a single MBC lady (lots of friends with BC) and the forums and this document I think are wonderful places to gain info and support.  As we know if or when the drugs we are on stop working there are lots of others to try and I just want to have the knowledge to be part of the process working with the Oncs as to what I might be next prescribed.  Hope you and everyone else have a great day.  I shall spend the morning wrapping or maybe rapping.  Bandit xx

Carolyn52
Member

Re: Bone mets - please join in

Hello bandit
I too got the guide from bestbird on inspire ..but must confess I haven't got round to reading it yet as its 100 pages long and I haven't got a printer !! just make sure that if you download you have plenty of memory space if you do it to a phone or tablet.
Note to self : read it in the new year !!!
Hugs xxx
nicky08
Community Champion

Re: Bone mets - please join in

Morning ladies.

Racer, great news that your platelets count us on the up and you are not sitting on a hospital ward this weekend. Much better to be at home and fingers crossed your onc has some positive news next week when you see him.

Bandit - well done you! If you feel good why not get out there and have some fun - I do whenever I can. I'm sure you know to pace yourself so you don't suffer afterwards either with aches and pains from the SBC or a hangover if you over do it!

Bel - quite a few of us get PIP, through the DS1500 route and it definitely helps with the financial worries. Because you get this you should be accepted to get the support group ESA also. If you have paid your NHI contributions (and there is a means tested route as well) it is paid if you have had to stop work, or reduce your hours, due to treatments you are on. Although it is for any primary cancer patients on chemo and/or rads (amongst other sickness related conditions) to help them there is a long term element for those of us on constant treatment once we have secondaries. Worth a look.

Welcome Catherine to our friendly group of ladies. We are here for support, advice, a place to rant and to have a giggle at times. It will of course be a huge shock that your BC has come back and there will be a lot of info to take on board. I think all of us found it easier to cope once we had a treatment plan in place. Ask away with any questions you have and there is a Triple Negatives thread on here which is more specific about types of treatment available.

A question about the document relating to treatment options, is this from the US? If it is it's worth noting that all treatments are available there (providing the patient is paying for health cover) whereas in the UK some drugs are not funded through the NHS (although are generally available if you do have excellent private health insurance). Also a list might show everything that can be used for SBC however depending on the type of SBC you have only some of them will be approved for that type of SBC.

Nicky x

funnyface
Member

Re: Bone mets - please join in

Welcome Catherine! There is a bunch of lovely ladies hanging out here. It's a great place for support and a wealth of information. It is very scary in the beginning, but hopefully you will feel better when you get a treatment underway. FF

Bandit
Member

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Hi Catherine. Sorry you are joining us here.  I am just home from a party standing in stick heels and enjoying myself as if nothing was wrong with me - took lots of pain meds before I went out and will pay for it tomorrow no doubt however tonight Cinderella was at the ball.  Got another party tomorrow/today so wish me luck!  Please see below Bestbird details

 

1) Email your request to bestbird@hotmail.com
2) In the Subject Line of your request, type in the words: MBC Document Request Terms Accepted by <your email address>

 

This is such a good document and I think everyone in our position needs a copy.   

Bandit xx

CatherineJ
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Hello Bandit and everyone else. I've just been diagnosed with secondary bone mets after finding a lump in my neck.  Not started treatment yet. How can I find that document you mention from the lady who knows about all the different drugs please? I'm triple negative and my primary was found last Christmas and everyone thought I was cancer free after that round of treatment, so this is a really big shock.  Thanks. X

BJR324
Member

Re: Bone mets - please join in

Hi Everyone

thank you for all your kind and informative words. I will certainly check out other sites re drugs I'm on as haven't really been given much info. In the past 11 years I have been continually on hormone therapy and had, arimidex, exemestane and letrozole. Are there any other ladies on faslodex injections? On the chemo unit the nurse told me they have never given before and I'm the only one having it! I have it monthly with my denosumab. Two jabs in the upper buttock! Have had 4 now and are is still very sore 2 weeks after it's given! 

 

Currentley having a break from working but hoping to work part time in the new year, so I'm ready for Christmas for once! All wrapped and turkeys waiting in freezer! (Yes pleural as we fattened our own, not sure I want to eat them now though!)

 

on the plus side my GP gave me a signed DS15000, I think that was what it was called, and I'm now receiving PIP at the enhanced rate plus mobility, which I queried because I am mobile, but I was told was eligible as GPhad signed form. Does everyone know about this? Or get it. It does help with extra costs and as I'm self employed no sick pay! 

 

Sorry about another long post. 

Enjoy the weekend. Xxx Bel xxX

racer
Member

Re: Bone mets - please join in

Hi everyone, well had blood tests done and platelets are up a bit so not transfusing platelets. So I can stay at home and get some presents wrapped. Always creeps up on me !

Have to go back on Monday for more blood tests and review by Oncologist . So may have some more Vincristibe. Just really tired and was in bed early last night but felt nauseous .

At least won't be in Hospital for the weekend . Don't over do it everyone xx

funnyface
Member

Re: Bone mets - please join in

Welcome Bel, I wanted to chime in and introduce myself. I'm 62, my primary was in 1995. My lung mets were discovered in 2005 along with almost ever lymph node in chest involved. Last year my oncologist retired and my new oncologist said my  bone met in my spine was stable. Old onc never told me I had a bone met. New one said its been there a long time. I have been through a few chemos and currently I'm on pabociclib/letrozole. I have been on this combo since Aug 2015! I live in the USA, about 1 hour west of Philadelphia, PA. I also get around fairly well. My biggest problem  is the letrozole is killing my knees and muscle strength. I still work PT. I wish you the best. FF

Bandit
Member

Re: Bone mets - please join in

Hi Bel. So sorry to meet you here but as Caroline says this is a nice friendly site.  I do however also use Inspire and community.breastcancer.org which although also mostly US based is very good and you will find lots of threats re the drugs you are on.  On both those sites are several really clued up ladies and particularly Bestbird who will email you a wonderful document that gives information re all the types of MBC and treatments.  She has research and put this document together but it seems a lot of ladies get mor information from this than from their Oncs.  I was Dx in 2004 and did 5 years of tamoxafen.  Did try Letrozole for a couple of months but it was discovered I had not gone through the menopause so came off all drugs.  I don't regret that as although the thinking then and now is to have 10years plus on treatment I am glad to have been drug free and looking at the info there is only a small percentage of protection which I personally feel was not worth the s/e's of the drugs - just my opinion.  Therefore I was 12 years from primary dx & not doubt like you shocked to find that I now have mets in the spine and ribs.  I really think that the Denosumab makes my pain worse for a few days after the jab however maybe that is because I also have extensive arthritis to my spine.  Otherwise I am on the 3rd cycle of my drug trial and so far it is very tolerable.  Like you have have my next scans in January. Obviously if they show progression I am off the trial - scary.  I have ct every 3 months and bone scan every 6.  I am very well looked after but also not allowed to take vits, herbs etc.  My hair is fine however my skin looks a bit more aged but that could also be the stress of the last 4 months.  I would love to have a bit of botox or something but I think the trial people would have a fit as I am not even allowed acupuncture.  Still I'm still attending drinks parties (I look great in dark corners) and having fun.  Yes it is the most horrid news to receive and if you read the stats etc you get very shocked but I feel fine and am still living a normal life at the moment.  None of us get out of this life alive but just because we have been given a sell by date doesn't mean that we won't go on for many yeas.  Sorry if I have bored you all with this over long post.   Bandit xx

Carolyn52
Member

Re: Bone mets - please join in

Hiya Nicky
All the best with the new regime today. I know I'm being a bit of a traitor here but the website inspire which is us based has had a big thread on kadcyla as its used more there. If u r nervous ..maybe that will help a bit. I know I read on it ages ago ..an oncologist said that herceptin, perjeta and kadcyla were not just treatments but almost a cure for certain ladies so maybe that will give you some positive vibes.
In the meantime ladies here ..hope u have got pressys wrapped, Turkey organised and still got unopened tins of roses or quality street ..yes u guessed I've dipped into some already !!
Hugs 🎅🎅🎅
nicky08
Community Champion

Re: Bone mets - please join in

Hi ladies, and welcome Bel to our family - as already has been said. You have done well with the various hormone treatments all this time so I hope the new one keeps things stable, or better for a long time. This thread tends to be the most active one with ladies with or without bone mets (but always with some form of mets) joining in for support, advice and a giggle, so it's a good one to keep in contact on.

Thank you ladies for your words of support as I face a new treatment, arghhh. I was due to be in the chemo unit for 9 am however I got a phone call from a very kind nurse to say that the pharmacy wouldn't have my drugs ready before 11 to warn me not to come in. Now, that's what I call service! So I've managed to get on with some of my Christmas wrapping, have a nice cuppa and will head off in a moment. So much better than hanging around on the unit although I expect a bit of a wait once I'm there as the new drug, Kadcyla, obviously  isn't prescribed that often so probably still won't be ready for my infusion.

FF, hope you have managed to get all your jobs done before the weather closes in. We're set to have another mild Christmas in the south of the UK, not sure how cold it will get up north but we don't get the extremes that you do. Hope you have all the right equipment to cope, something that none of us ever seem to have!

Take care all.

Nicky X 

Carolyn52
Member

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Hello bel
Welcome to our family and you sound very much like me. Primary dx 2004 FEC rads and tamox / arimidex five years . Then wham bam ..bone Mets dx Oct 2015 to hip pelvis spine and femur. I'm on denosumab and letrozole . We seem to live under the fear factor umbrella everyday and im scared sometimes of having good days as worry about bad days that might follow !!
It's a case of mind over matter and enjoying a day at a time ...there is so much kindness and help here with lovely caring ladies that are also sharing our journey .
Hugs xxxx
rosie53
Member

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Hi Bel, I will second that, the mental side of living with this disease is the worst.....the unknown and uncertainty is hell!
Hugs Janette xxx
BJR324
Member

Re: Bone mets - please join in

Hi Bandit

reading your posts it seems as though we are in a very similar situation. I am on denosumab and faslodex after a secondary diagnosis in September this year in my spine, sternum and ovaries.

i too experience aches and pains in my back and hips, which is often much worse at night, and depends on what I do in the day. I also experience extreme tiredness which I'm not sure whether is normal or not.

my background is primary 2005, at the age of 44, chemo FEC, radio then recurrence 2011, all the time on hormone tablets, tried them all! Once said they must have worked fairly well as help it off for so many years, hence now on faslodex injections monthly to see if that does the trick for a bit longer! First scan since diagnosis in January so getting a bit anxious! Hoping all is well.

good to read on here other experiences as it helps to keep me sane! The mental part is the hardest!!

sorry for long post. 

Bel x

rosie53
Member

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Hi Racer, really sorry to hear your having a rubbish time of it! Keep your chin up, and try not to worry about the kids.....they're tougher than we think!
Hugs Janette xx
racer
Member

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Thanks Carolyn . Need to wrap presents so should keep my mind off it. It has all happened quickly xxx

Carolyn52
Member

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Hello racer
Sorry to hear that you have had problems and hopefully it will all be sorted without a hospital stay .
Keep strong and try to focus on nice xmassy things .
Hugs xxx
racer
Member

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Hi Everyone, sorry not been on for a while. I have had a bad week . I went for my review on Thursday last week and was told that they were pleased with my bloods the previous week. My latest bloods were not available but could have Chemo on Friday.
Arrived at 11.30am to be told I could not have Chemo as my HB was too low and needed urgent blood transfusion . To cut a long story short I did not get home until nearly midnight due to a catalogue of problems with my bloodvtesults.

Found an enormous bruise on arm and had not knocked it . Gone for review today to be told my platelet level is 28 dangerously low so needed to have Vincristine today and no Taxol tomorrow. Got to go in the morning and if my platelets have not gone up then they will admit me . I will have to have platelet transfusion . If they have risen then go on Monday to have more bloods and vincristine.

Trying not to worry but Doc was so pessimistic with us.Hubby is worrying and trying to put a brace face on . Has anyone else had similar experience ? I find I just keep apologising to kids as I am so shattered and feel I am letting them down all the time.

I have just got to keep fighting this . Sorry if I sound down think it is time of year as well. Take care everyone xxx

Bandit
Member

Re: Bone mets - please join in

Thanks Ladies for replying to my question about whether bone met pain once on treatment is good or bad.  If anyone has any further input I would be very grateful.  Xx

rosie53
Member

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Hi Nicky, nice to hear from you, good luck with the Kadcyla, don't know if you saw my post yesterday? My friend has been on it for 6 years now and has done really well  regarding s/e but she does get very tired!

Hugs Janette xxxx  

rosie53
Member

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Hi Bandit, I also had a particularly uncomfortable night with my hip/ leg, it's like really bad toothache right from my hip down into my foot. I don't think the colder weather helps us boney ladies, I struggled all through last winter with it then through the summer months hardly any pain! 

Hope this helps. 

Janette xxxx 

kirky_68
Member

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Hi all, after some advice. I am having a whole spine MRI on Friday just to check no progression. I've heard it's very clangy and noisy and can take half an hour but they have music. Does anyone know if you can take your own and is it cd or mp3? I am slightly dreading the experience and would prefer my own music if possible.

funnyface
Member

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Nicky, We will be on the same mission over the next few days. It is supposed to get really cold here and a snow storm Saturday. I've decided that I will have my shopping finished by Friday night! I then can finish cookies and wrapping by Sunday! I'm tired, but I need it finished so I can rest up next week! We can do this!!

 

Carolyn, I can relate to you with the  eggs. I think I told you this. I had to eat orange popsicles with my first chemo. I was feeling queasy and the orange smell was so strong and they gave me an orange popsicle with a strand of slime hanging off the end. I hurried and chewed it up to get rid of it. They came by and asked where it was. I told them and they said to keep from getting ulcers in ny mouth, I  needed to suck on it the whole infusion time to constrict the blood flow to my mouth. They only had orange and ice chips made my teeth hurt. That was 21 years ago and I still can't take the smell of orange jello. It's hubby 's favorite! 

nicky08
Community Champion

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Hi Carolyn and thanks for the good wishes. I had been feeling pretty confident about lack of side effects from Kadcyla as I chat to a lady on the chemo ward who has had it for over 18 months now and seems to get very little in the way of SEs. However, reading the thread on here has made me more aware that I could feel a lot more tired etc than I first thought. So, I've been dashing around like a mad thing trying to get all my Christmas bits done before Friday as I'm not sure if I will be able to face any shops etc next week. Add into the mix our EDs birthday last weekend it means it's always a busy time of the year, but this year more so as I'm effectively missing last minute shopping time next week. It does help focus the mind though! Plus I will just have to send our YD out on shopping trips if I've forgotten anything.

Nicky x

Carolyn52
Member

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Hello Stacey
Thanks for your advice 're duck eggs ..might try in a few weeks but at the moment the thought of any eggs makes me want to retch!! Even had to remove a Xmas ball on the tree which is oval shape !!
Hugs xxxx
Carolyn52
Member

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Hiya Nicky
Nice to see you posting ...it's all been quiet here with the regular gang ...just wanted to wish you all the best with kadcyla ...it's supposed to be very superior so hope its ok but always scary starting new regimes ...better the devil you do know than the one you don't as far as side effects .
So we are all walking about having a good scratch with letrozole ....tried loads of different shampoos ..all the same effect but at least we don't have nits ...horrible little blighters! !!
Hugs xxxx
Carolyn52
Member

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Hello bandit
Same old chestnut with the denosumab jab ...if u read my past posts I got a lot of extra pain and aches with it ....after six monthly ones I settled down to a pattern ..day ten to twenty ..very achy and I just felt I was only getting a few weeks free of it ..so I asked for my jabs to be six weekly and not monthly ...so much better ..it's a powerful little jab and maybe like me need it spaced out a bit. I also get a itchy throat and a little tiny bit short of breath the day after it. I started keeping a daily note so I felt in control of symptoms as and when. It's all very minor stuff though .
Hope this helps xxxx
nicky08
Community Champion

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Morning ladies

Its been very interesting reading about your itching! I had put down my itching (mainly arms and sometimes scalp) to my other drugs namely Herceptin and Pertuzamab as it all started then however at the same time I also started letrozole so maybe it's that rather than the other ones? Who knows! As it is I'm due to start Kadcyla this week so will come off letrozole and the other two drugs but will be on a new combo. No doubt with its own list of things I can look out for.

As to letrozole causing palpitations, when I first took it back in 2008 I had palpitations and put it down to this hormone drug - strangely it is/was the only AI drug that listed palpitations as a side effect, the ores (anastrozole and Aromasin) didn't, but maybe they do now. I came off letrozole and went onto anastrozole however the actual culprit turned out to be the E part of FEC which gave me long term heart problems and is well known for doing so, although luckily not in too many cases.

Bandit - sorry I can't help with your question. Although I am on Denosumab I have never noticed any extra aches etc either after I've had the injection or even before the next one is due. Hopefully it is down to bones healing, which can cause some aches and pains, or the side effects of the hormonal treatment you are on. If in doubt or it gets considerably worse maybe you should speak to your BCN?

Nicky X 

Bandit
Member

Re: Bone mets - please join in

Morning everyone. Hope you are doing as well as can be expected.  I have mets to my spine and ribs as well as oestoarthritis.  I am on Palbociclib, Letrozole and Denosumab.  I have noticed after the Denosumab I usually feel more achy however in the last few days the pain in my ribs and hips has got worse.  Last night was very uncomfortable.  Could this be meds not working or bone healing?  I could ring onc & nurses but know they will tell me to wait until scans in January however I guess you ladies probably understand where I am coming from.  Bandit xx

funnyface
Member

Re: Bone mets - please join in

Jbug, Thanks for that info!  I will pass that onto Steve! Just never know with these crazy allergies. FF

jbug
Member

Re: Bone mets - please join in

Hi funnyface, I also cannot eat peaches, nectarines, english apples, plums...also get itchy mouth and throat with walnuts and hazelnuts. Had tests and it's something called a Birch pollen allergy, meaning that any fruit from the Birch tree family causes the reaction, also will cause hayfever at the time of year when it pollenates too. 

 

hth x

Carolyn52
Member

Re: Bone mets - please join in

Hiya Jeanette and everyone
Well I've opened a can of worms but I'm laughing at your itchy scalp on letrozole as I'm always convinced I have nits off the grankids!!! I'm always scratching too !!! I'm always using the nit comb just in case but no haven't got them !!
I don't know whether its the cancer or treatment that causes these intolerance to certain things but maybe just maybe it's just our age and we would have got them anyway!!!!!
Hugs everyone xxxx