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Bone mets - please join in

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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
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Stacey, My SIL can't eat tree fruits. He says the skin on them make his mouth itch, especially apples. He can eat apples that are peeled and baked. I always wonder if it could be a chemical they are sprayed with. 

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Hi Carolyn,

 

If you venture into eggs again perhaps try duck eggs? Maybe 1/4 of a boiled egg and see how it goes. Some of the supermarkets stock duck eggs and "ya never know" .. you might not get the same reaction.

 

I can't take Letrozole.  It gave me a very rapid heart beat and palpitations ... so much so the GP sent me for an ECG the second day I started them. My oncologist thought it might just have been stress, but after 3 weeks of waking up at night with my heart racing like a flock of butterflies in a hurricane I decided it had to be the Letrozole.  Two days after I stopped them my heart was back to normal.   So now I'm an Anastrozole, which I do not think is working, but anyway, my stomach has been a mess for the past 6 or 8 weeks.  It constantly feels upset.  No more problems with chocolate than anything else though!

 

Stacey

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Hi Lynne, nice to hear from you! Omg that is terrible......chocolate is my biggest vice you have my sympathies (and no doubt Carolyn's) no but being serious now that is really weird isn't it, I've been on letrozole 12 month now and although I haven't had any allergies I do have a really itchy scalp it drives my insane!!
Hugs Janette xx
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Hi Ladies. I am finding these posts very interesting. I have only ever had LETROZOLE but since my diagnosis four years ago I have developed an intolerance to chocolate. Initially I found that I could get away with eating things like Crunchie or Bounty which just had a thin coating but these days I can't tolerate it even in small quantities.
Lately I have found that if I have fresh cream it just goes in one end and out of the other. Custard and 'synthetic' creams seem to be tolerable for now...

Even my GP said "oh no, how awful" when I told her that I had to stop eating chocolate, and believe me I could eat chocolate in great quantities.

I don't think it is related to my cancer, but reading your experiences gives me food for thought..

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Oh Carolyn, so sorry you have had another reaction - you were so pleased the other day when you thought you could eat them again! By the way, might not be chemo caused - if you have the flu jab, they breed the anti-whatsits in eggs, which is why they ask if you are allergic before they give it. It might have been a flu jab set you off originally. Sorry, too, about your front door! Wow - they have you over a barrel I suppose - a bit like plumbers!

 

Sorry I haven't been in touch over the last week or so - I honestly don't know where the time is going to! I expect you are finding the same. We will have to have a proper catch-up after Christmas once all the excitement has died down a little.

 

Hugs. Barton.x

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Hiya Stacey
I really wanted to get back into eggs as I don't eat meat and fish so I'm so limited .I thought if I bought expensive free range eggs and tried one poached egg on toast every few days I would beat the allergy but oh no ..it didn't happen ..I could understand it with spicy or rich food but poor little innocent eggs ...only in my world !!!!
Hugs xxx
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When they try to "immunize" people against allergies they introduce the allergic substance in very limited quantity over a long period of time.  So if you really, really want to eat eggs that is the way to go.  

 

I developed some odd reaction to the skin of some fruits like peaches and also to melons like cantalopue (?spelling).  I sometimes eat them anyway, but they make my mouth itch.  With peaches it's only the skin that bothers me because the canned variety is no problem ... really odd.

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Hiya ff
Don't know for certain it was chemo but seemed to be at the same time after I had finished it. I have always loved eggs but I can eat one and within five minutes I go dizzy sweaty and I part company with them !! Probably why I get so much indigestion and heartburn ..its hidden egg based stuff.
Funny enough ..I can eat McDonalds and chocky with no problem !!! It's a hard life !!
Hugs xxx 🍟🍰🍨
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Carolyn, How do you know the egg allergy was caused by chemo? I was allergic to the iodine contrast in 1995. They warned me that I would probably develops a shellfish allergy eventually. They were right! Happened Dec 2002! Now they say if you are allergic to shell fish you can still have the contrast. Used to be you couldn't. I can't bc I was allergic to the contrast too. I had the worst time with Downy Fabric softener. I had always used it and then became allergic to it after years of use. BTW before I had my anaphylactic reaction to the shell fish, I got sick in a restaurant years before on lobster. I don't really like it, but a few years later decided to try a petite lobster for an appetizer. I did like it a little better, but got sick again before they brought me my meal. I thought it just didn't agree with me. When I developed the full blown out coukdn't breathe allergy, I decided that the lobster issue was probably bc of the allergy starting. Be careful! I only ate 2 shrimp and had to be rushed to the emergency room. I was choking for air when hubby got me there.  FF

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Hello FF
Yes and expensive to call in locksmith (£105) but needs must !!
Can I pick your brains ladies with a sensible question for once ? I developed a allergy to eggs from chemo twelve years ago but a few weeks ago thought I would introduce them back as I love them ..so started having a poached one for a few days ..wow the weekend realised I still have the allergy with runs and sickness etc ..so boo hoo no more eggs for me ..off for a McDonalds to cheer myself up !!
Hugs xxx
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Grrrr, House repairs aren't allowed at the holidays!

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Hello ladies
Bit quiet here on this thread today so hope all is well with you all.
A minor irritation we had on Saturday ..our front door lock jammed and so we have had to use back door for a couple of days to get in and out but locksmith been today and job done !!
Loved strictly sat night ..very glitzy but x factor very predictable but my guilty pleasure . Sunday night's won't be the same without planet earth either ...stunning !!
Hugs xxxx
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Stresshead, Are they going to do any scans to check your back out? I'm sorry you have this worry at the holidays. Try to put it on the back burner and keep moving and enjoying all the holiday joys! FF

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Hi Stresshead, sorry to hear about your problems. With all this talk of skin mets I started searching for images to see what they look like as I have little pin prickly things on my back which scab over. Paraonoid or what ha ha. 

If you go on the Yes to Life website you can sign in and see what recommendations are made for your type of cancer. I rang the helpline where you leave an answerphone message. They then return your call. The lovely lady that I spoke to was SO kind and understanding and she emailed me a whole lot of stuff. Most I knew about but not all. She took a medical history and then has passed this onto Patricia Peat. I missed a phone all from her PA but will be ringing her on Monday.  She's the one who keeps up to date with treatments available. 

Ive spent the last few days reading through the Cape treatment forum getting some brilliant advice. Even though I am really tired on day 9 of treatment 1 I am feeling extremely positive. Got to have cuddles with grandchildren today after not having seen them for a fortnight cos of illness. 😍 

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Janette - so sorry to rwad about the way you were treated by your Onc team - they should be ashamed of themselves! As ff says, if you hadn't seen them about it, you would have got in trouble for that!

 

Hugs, and glad you are feeling a little better.

 

Barton.x

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Stresshead, sorry about your back and your Oncs suspicions. I do hope the E works for you (Carolyn, I remember the pink wee!). Sorry your "scare scale" (such a good name for it!), is at max - we all feel for you.

 

Hugs. Barton.x

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Janette, If you hadn't got checked they would have been saying why didn't you come sooner! Seriously we can't win! I think you were treated rudely!

 

Stressed, Hope you get sorted! It's difficult starting a new treatment. It's that initial getting underway, getting SE figured out, etc. I wish you the best! 

 

FF

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Xx
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Hi Stresshead, sorry to about hear your onc is suspicious regarding your back, hopefully the treatment he puts you on will be kind to you but nasty to those mets!! It's so rubbish living with this horrible roller coaster of uncertainty isn't it!
I have made a conscious effort to drag myself out of the cancer doldrums today, after my melt down at the weekend I've really struggled to "pull myself together" but after receiving flowers from both my children to help cheer me up it made me think that I really do need to stay strong and positive as it's not only me living this its also my family too and I know it's hard on them too!
Well I've finished alllll my Christmas wrapping today 😆.....yippee!
Hope everyone is keeping well.
Janette xxxxx
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Hiya stress head
Sorry about your news and the worry you have with protecting your family from the reality of it all.
I have been reading on other websites ..good things with oncologists using epirubicin as a solo ( think its the E bit of FEC which most of us had with primary).it's also very pink !!
Try to focus on Xmas and not the c word too much and enjoy some retail therapy .
Special hugs xxxxx
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Janette, so glad to hear your bony rib turned out to be nothing. I cANT BELIEVE HOW YOU WERE PASSED FROM PILLAR TO POST AND MADE TO FEEL LIKE A NUISANCE (sorry, pressed caps lock by accident but couldnt be bothered to delete and re-type!!). If only they had a small notion of what living like us is really like. You take no notice and go straight to yor onc team is yo have concerns.

Babsy, so glad you have found yourself in a better place. Was interested to learn about the 'Yes to Life' Charity. If you have any more info, please pass on.

Well, my onc does think my back is suspicious but is erring on the side of caution before rushing in with another chemo.....what he is planning is a revisit to what i had before my mastectomy/reconstruction....so my faith in that is limited and my scare scale is reaching maximum as it seems thare is nothing new to try. Hasnt really hit me yet. Am absolutely dreading effects of chemo, hair loss (again) etc but i suppose the ols inner strength to keep on going will kick in.

hopefully having a day in Stratford tomorrow if weather holds..bit of a distraction for a few hours.

Love to all. x

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Thanks for all of the kind thoughts everyone, really appreciated them. Actually I felt a bit better yesterday after watching a video clip of a therapist talking about feeling that " I am enough" and tricking your brain into thinking  what you want it to think. So that in my case is, that I've chosen to go back onto chemo and that it will do the job. It was a powerful message which I have heard before but the timing was just right. Then I had a phone call  from a charity called, " Yes to Life" who will be referring me to somebody who can give me up to date information about all the treatment available for my specific cancer both conventional and alternative and therapies to run alongside chemo. So that is really kind of them. So I've picked myself up mentally and the chronic aches and pains have lessened!!! The power of the mind eh! Janet to happy that you're feeling more positive too. Stresshead sorry to hear about your back. If you've nipped in the bud before best to do that again. Hope you can get it sorted. Yes, cancer is a roller coaster but so is life . xx 

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Jeanette ..at least you have been pro active and got it checked out and don't worry about being a drama queen ....it's put your mind at rest now and you can relax .
I'm having a very sociable week with lots of food involved so the waistband on my jeans will be saying "no no no" by the weekend !!
Just had my hair cut tonight and I'm going to live dangerously and risk a hair colour ..sod letrozole ..fed up with feeling like a grey bag lady !!
Anyway enjoy your flowers ..how thoughtful of your daughter.
Hugs xx🌹🌹🌹🌹
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Hi Carolyn, well the good news is its nothing to worry about! 😊
But really not happy with onc, not sure if I mentioned that I had spoke to bcn about my rib last week who in turn emailed onc about it who's response was "tell her to go and see her GP as we can't assume everything is to do with the cancer" 😡 I wasn't happy with that but did go to GP.....and guess what? He said it was above his head and onc should be looking at it!!!
Well saw her today and she said it is "a boney lump" that it was hard which was fine, it's new soft tissue they worry about? When I told her about what my gp said she was quite abrupt and said he should have been able to deal with it! I got the impression that I was time wasting and being a drama queen!
Sorry for the long post but it's kind of hard to explain otherwise!
On a brighter note I'm feeling much better now after my melt down at the weekend and my daughter surprised me with a beautiful spray of flowers today!
Hugs to all, Janette xxxx
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Hello Jeanette
Well how did u get on with oncologist today and the rib lump ?
Been thinking about u all day .
Carolyn xxx
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 Came home from work feeling a bit low , waiting on scan results and nerve pain on the increase , a wee bit, then logged on here and , just brilliant news that you have had good news with scan results, what a relief,  so happy to hear your good news ladies, lifted me out of the Doldrums too.

 

Keep well, keep warm xxx 

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Hello Janette, so glad you are feeling a little better. It's the trying to stay strong bit that is so hard, so a melt down is totally to be expected occasionally - non-one can stay strong forever.

 

Babsy - hope you are feeling a little better today, but don't worry if you are not - just try to ride it out. Everyone else is right - the Christmas season is particularly difficult.

 

Stresshead, sorry to read you are struggling with your back now - best to call bedore things get totally out of control and completely ruins your Christmas. Good luck with sorting things out soon.

 

Hugs to all. Barton.x

 

 

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Hi Janette,Babsy and anyone else feeling low. I think it's that time of the year when everyone else is having fun and looking forward to the future whereas we have been robbed of that longevity by this blasted disease. Very wise words from FF, thank you. I think I will now adopt your expression of having to deal with it! Brave? Of course I'm (we're) not brave but what other option is there?

Sending hugs to all and hope that tomorrow is better than today.

Nicky X 

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Hi stresshead, hope you're back settle's down but if it doesn't please don't sit worrying about it and having it spoil your Christmas, speak to you bcn or oncs secretary. I have had a worry about one of my ribs (another reason for my meltdown!) I was going to wait until my next onc appt in feb but hubby wasn't happy with that and has contacted the hospital and I'm going to see onc in the morning!
Hugs Janette xxx
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Hi janette, great news you feel better....

i was feeling c*a* on my week off too...But feel a little. Better now.

 

Babsy, hope you feel better soon, this roundabout(well, helterskelter really) has us not knowing how we re going to be feeling..doesnt it?

 

hugs,

 

Moijan💚💚💚

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janette, glad you are feeling better. This roller coaster of emotions is totally draining isnt it. I though after getting  stable scan i would at least have a reasonably stress-free christmas but no such luck. My back which has been sore and itchy for a couple of weeks is now very lumpy so it seems my skin mets are on the rampage again. trying to keep my anxieties to myself so as not to rin christmas for everyone but not sure i'll be able to do it. Will keep trying, with the support of all you wonderful ladies. x

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Hi ladies, well I'm feeling a lot better today......tears have finally dried up! Hate feeling so down but I suppose you just have to go with it, think that's my problem iv been bottling it up for a few weeks now "being brave"😤

Babsy, hope your feeling a little better today too! Thank you to everyone for your lovely posts helping to ride yesterday's storm. 

Hugs Janette xxxx 

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Funny face your story made me laugh when I read about the Christmas tree.
We have got the tree out but still in the box. We are both trying to work the energy to put it up as you have to put each branch on the tree. My youngest is getting fed up with us lol .

I have some more energy than I had . Just trying to avoid the coughs and sniffles that the kids have got at the moment. Just really thirsty and don't seem to fancy anything .

Hugs to everyone xxx

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Babsy, I'm sorry you are feeling blue too! One year I was feeling quite overwhelmed at the holidays and I told a friend I had needed to b#*¿ch at someone but nobody was home. I told him I b#*¿ched at the tree! It has remained the joke around here. If I raise my voice at anyone even the dog , they all say time to get the tree up! Ladies get those trees up!! In January you will all be holding my hand and picking my chin up off the floor! I barely make it through it! February I'm usually better because I know March is around the bend and Spring is on the way! I think I have that problem when you don't get enough Sun. Hang in there girls! FF

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Hello Janette, so sorry to read you are feeling so down right now - don't worry  as you are certainly entitled to the occasional (or even frequent!) breakdown - not-one can be strong all the time! I had a minor one the other morning, but have had plenty of major ones too -I'm sure we all have. It just gets too much sometimes.

 

I hope you are feeling a little better today.

Hugs. Barton.x

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Sending lots of hugs Jeanette. I haven't been on cos I've been pretty much feeling the same way as you. Being back on chemo has knocked me for six and I just feel like curling up in a ball and telling everyone to leave me alone. However, it will pass, I will knock some sense into myself and bounce back, as I always do. It's good to share it makes me feel less isolated. So thanks everyone for your generosity in sharing and caring, it means a lot. Xx We bought a new tree this year and I convinced myself it wasn't bigger than our old one but we've had to re-arrange all of the furniture to accommodate it ha ha. 

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Big hugs to you Jeanette. Please never feel badly about being down, it's something we all experience smtimes. I  thinkwe do marvellously holding it together as well as we do! We understand so anytime you feel low,sad,angry,frightened ......we will be here. I  don't know many of you outside of the forum but I  do feel an affinity with you all and do care and that's why this forum is o important.

Love and strength to all who are struggling (and those who are managing too!) xx

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Hi Janette,

 

hope you feel better soon, I felt like that last week....strangely...... on my week off Eribulin...

 

i guess the drug saturates you during the previous two weeks.......when you feel fine.... and then suddenly 💥Bang💣 There I am..all angry and near to tears.......

 

anyway, sending you lots of hugsxx. And a few goodies...🍭🎁🍩🍷🍓

Moijan💚💚💚

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Hi ladies, thank you all for your lovely posts......started the water works with each one I read! Just when I think I'm all cried out off I go again, got bags under my eyes you could carry your Christmas shopping home in!!!!

All of you ladies are special to me  (although we do not know each other) this forum is a lifeline for us isn't it.

Sending you all cyber (((((hugs))))) 

Janette xxxx 

 

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Picture of pretty one, please!

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Jeanette
U have had lots of lovely words of support and hopefully you will give yourself a smack on the wrist now.
This time last year I had just had my hip nail put in and was literally on a Zimmer frame and peeing in a bucket in kitchen by day as it was a struggle to get up the stairs ...this year I go out most days and even manage a car boot sale Sunday morning's which I never thought I would do again.
Ps ...ladies the ugly fairy is in bin as I bought a pretty one at boot sale for 20p!!
Hugs xxxx
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Stressed, Living in the moment is not easy! Believe me I get very down at times and can cry at the drop of a pin! Trying to focus on the moment, even if it's only on the kitchen floor looking good bc I just scrubbed it, or good you got the laundry done. I have to keep it simple, and step by step! It's not easy being us!!!! I hate the brave line!!! I'm not brave!!! I'm forced to deal! Bravery is putting your life on the line for someone else! 

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Hi Janette  Sorry to hear you are struggling. You think you are doing OK and then suddenly the floor disappears. Sometimes you don't know why but sometimes things in your life that normally you would sail over can sink you. If you can't live in the day because it's not a very good one, you have to try and imagine a better one. I'm not much good at doing that. Hope the sun rises again for you soon. B xxx

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Jeanette, please dont feel bad about being down and thank you for sharing with us....thats one thing i love about this forum...everyone listens and totally understands. I find this time of year particularly difficult, the strain of being happy and smiling for everyone elses sake is sometimes  unbearable. I find New Year even worse...how do you join in celebrations for a happy new year when we are facing what we are. Never mind how good we look or how brave we are...no one but us have a clue what its like. I am going to try and take FF's advice and not look forward or back but live in the moment. easier said than done but if it gives a few momets respite fro dark thoughts then its worth a try. Always here to listen and hold your hand. xxx

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Janette, Don't you dare feel bad for being down, even though you might have less physical ailments than some one else at the moment! The mental break downs we can have with this can feel worse than the physical ones. Holidays are a time of reflection and this can be overwhelming and a trigger for mood swings. I try not to sit and think backwards or forwards!! I try to stay in the moment and find things to keep me busy!! I try and do something every day! One if my favorite things to do is to do something simple for some one else! I get a big kick out of watching people's reactions. Most of our gas stations are self serve, so I will put scratch off lottery ticket in an envelope with a  message and tape it to the pump. I will go park and watch for the next person to pull in and take it. I love doing simple random acts o f kindness. Get yourself busy!! FF

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Hiya Jeanette
Come on honey cheer up ..u have a holiday to look forward to ...but its hard isn't it when u start thinking about our future with this stupid disease ....I get days like yours too but we are women and somewhere we have the strength to get up every day and get on with it .
So get out the bar of chocky and put your favourite DVD on ( mines coyote ugly) and just try not to fret ...it's not easy though.
Loads of hugs xxx💜💜💜
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Hi ladies, jumping on for a little support! Really struggling with life at the moment, cannot stop the tears, life just feels so hard. Fed up of being "amazing/so strong /looking really well" I know people mean well but do they really have a clue how life is for us? Just feel like running away!
So sorry I don't want to sound negative and I know there are a lot of you ladies dealing with tougher things right now just having a horrible few days of it!
Hugs Janette xxx
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Yes the fairy is a real heffer !! I've signed her up for weighwatchers after she's finished her Xmas stint !!
Mission tomorrow ..a pretty pink sparkly fairy though...and she's got no knickers on either but she's definately a girl !!!
Apologises to any ladies out there that are getting fed up with fairies and not serious things !!
Hugs xxxx