73.4K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

julzd
Member

Re: Bone mets - please join in

Thank-you I will try those creams I was scared to put stuff up my nose haha X X 

Marirose
Member

Re: Bone mets - please join in

Hi LYNNDYLOO

 

Nice to see you back. Sadly we lost the lovely Belinda at Christmas and everyone seems to have gone quiet since then it came as quite a shock because she was still posting just a few weeks before. The cyber cafe has not been the same since we lost Helen although Marie and Chocolates has brought a laugh and Julie. 

I am pleased to see you are still on the e/e combo I managed 17 cycles and then it stopped working so I have gone onto capecitabine which has shown some results after 4 cycles bones are healing and everything stable.I am at the end of my 5th and starting my week off. This one is 2 weeks tablet and 1 week free that makes it better than e/e.

Have you stayed on10mg mine was 7.5mg I wanted to go back on full but onc would not let me because I had had 4 stables. But at the end the scan showed growth in my main tumour and then a bone scan showed more mets in ribs both femurs left pelvis and left tibia. 

 

Again it is lovely to hear from you take care xxx

LYNDYLOO
Member

Re: Bone mets - please join in

. Hi All 

 

I have not posted for quite awhile. Since I posted I see we have lost many of the regulars that were posting when I first started on the forum. For the newbies. I was diagnosed with lobular breast cancer and bone mets back in 2009. Had primary removed in September of tha year.. Got CT scans before starting chemo in November that year that is when they discovered I had multiple bones mets. Finished chemo in Feb 2010. Had rads, then put on Letrozole which worked for 4 years. Treatment was changed in Feb 2014 to Everolimus and Exemestane. I have been getting scanned twice a year since then. Keep wondering when treatment I am on stops working then what next. 

scratch
Member

Re: Bone mets - please join in

Hi jultz.yes my eyes are sticky with this docetaxol.I did get some stuff from Dr for sticky dry eyes.just another crappy side effect.xx take care everyone.xx
Marirose
Member

Re: Bone mets - please join in

Hi Julzd

Sore noses are a pain I use boots cold cream and when I can't find it vaseline use it regular during the day it seems to work.

Hello to all boney mates xxx

julzd
Member

Re: Bone mets - please join in

Hope you feel better tomorrow I'm just pulling myself around find it takes about a week for me now. My nose is so sore and my eyes stick together on a morning I've had antibiotics and cream not much better tho . X X x

scratch
Member

Re: Bone mets - please join in

Thanks jultz.wil research tomorrow..❤ feeling ready for bed but steroids buzzing.plus the long day at hosp.youv just got one more to go now.❤ x
julzd
Member

Re: Bone mets - please join in

Think that's why they don't just go off your bloods X X 

julzd
Member

Re: Bone mets - please join in

Hi Sharon I read on another forum that this can happen and your bloods even out but it can take a while X X 

scratch
Member

Re: Bone mets - please join in

Meant to say getting results from ct next week.xsharonx
scratch
Member

Re: Bone mets - please join in

Hi everyone.had 4th chemo today bloods were ok.got results next week from last weeks ct..i have c153 markers ..anyway after 1st chemo they dropped.but after 2nd they gone up again.Dr at hospital today said this is quite normal.I'm on docetaxol.has any heard of this happening ? Obviously can discuss next week at oncology but worried about it now.xxthanks Sharon.x
Carolyn52
Member

Re: Bone mets - please join in

Hiya Sarah Louise - phew glad you have now seen your Oncologist and he is sorting out the best treatment for you. You must take a day at a time and focus as there are lots of options for you although its all very difficult to take in and remember !!

To be honest I am such a wimp as soon as I get to Oncology that all I want to do is get in and out as soon as possible and dont ask many questions !!!

I think so much more info is available on these boards and online !! 

 

Carolyn xxxxxxxxxxxxx

Marirose
Member

Re: Bone mets - please join in

Well said Julia

Your post to Sarah Louise was spot on no one has the right to tell someone they have little time to live without trying treatments first. I met a lady at our cancer help centre who was told she had 6 months so she got a second opinion at the Royal Marsden and 2 years later he will not say she has little time left but says he will try to give her much longer to live.

So there is always hope.

 

Best of luck Sarah Louise x   Love to all xxx

Sarah Louise
Member

Re: Bone mets - please join in

Thanks Julia. Luckily the Oncologist who advised me of the prognosis was just standing in for my Oncologist. I have since met with my Oncologist and he was really positive, saying he will be sending me on any trials that come up. He has changed the plan of action and will now be starting me off on injections to start early menopause (the other told me I would have to wait for chemo to finish and then remove my overies). I'm also going to be having injections to strengthen my bones. I've been feeling a bit better about my situation recently which in turn has made me happier 😊
Hope all of you ladies are ok xxx
Cress
Member

Re: Bone mets - please join in

Hello London1,

 

I'm in a similar situation, and I would love to know what luck you have with your request to have your primary removed. I was dx double whammy last March with Invasive Lobular Grade 2 and liver mets. My liver function scores were absolutely insane in December, but I can honestly say that I've never been bothered by my liver mets. I wish that I could say the same for my primary! It measured 4.7cm in the upper outer quadrant when biopsied last March and now I don't even know the size (over 10cm),  just that it has taken over my whole rather small breast. In December, I was put on weekly Paclitaxel but had a severe reaction and was moved to Abraxane every 3 weeks. I keep hoping that it will shrink everthing, so I might have a chance at having my primary removed. Please keep in touch.

 

Sarah Louise,

 

All I can say is HOW DARE HE (your oncologist)!!!. It's been said many times on the Forum, but still remains true - none of us come with a date stamp.  Like most of the women responding to your post, I have never been given a 'prognosis' - unless one is at deaths' door, it's not helpful nor acurate. The standard today is to be told that SBC is not curable but that there are many treatments and more in the pipeline. If many of us (even those with the dreaded visceral mets), have not been told to start choosing the music for our funeral, then you certainly shouldn't have been given that silly prognosis. Rant over - it just makes me really cross when someone new posts with such an unenlightened tale.

 

Best wishes,

 

Julia x  

scratch
Member

Re: Bone mets - please join in

Jultz meant I not u..fingers go daft on this docetaxol
Or possibly brain 😊
scratch
Member

Re: Bone mets - please join in

Hi good luck to all with treatments.oh what a lovely feeling when hair grows back and you can feel the wind in it...❤ jultz yes u agree about scans u used to go for checkup.they used to just say how are you and feel my neck and armpits etc..then in 2012 they discharged me.in 2013 I had secondary in bone and peritoneal area.oncoogist told me id had it back multiple months.so had it long time b4 ..❤ xx
julzd
Member

Re: Bone mets - please join in

Devon sounds lovely it's always cold and rainy where I live in Newcastle ❤ X X x

MaraUk
Member

Re: Bone mets - please join in

Hi Barton

 

good luck with move and downsize I have just said to Caroylyn. We were in Devon for 15  years and we had some wonderful summers I know it's not always rainy but there is a reason why it's so green lol.  

 

Take care

 

karen

MaraUk
Member

Re: Bone mets - please join in

Hi Carolyn 

 

so glad it's sunny I remember lots of beautiful sunny summer days loved our 15 years in Devon 

 

karen

julzd
Member

Re: Bone mets - please join in

Thanks Carolyn X X 

Carolyn52
Member

Re: Bone mets - please join in

Elily and Julz 

Best of luck with growing some hair soon ........once you have a bit of a covering you will feel so much better and will  help you  tolerate the treatments. 

 

Hugs Carolyn xxxxxxxxxxx

 

 

Elily
Member

Re: Bone mets - please join in

Thanks all for answering my CMF query. So, I may see my hair again (hurrah!) but feel a bit sick at times (boo hoo). I hope it will kill off most of the nasty cancer cells in my bone marrow! And I hope I can keep working as apart from working part time when on Taxotere, I've been able to work through other chemo regimes.

Elily

julzd
Member

Re: Bone mets - please join in

I will be happy just with a full coverage of hair lol. Your right about the front it hasn't really got a shadow I can tell this will take the longest . I definitely think they should scan you lymph nodes or not they told me it was rare to travel through the blood that's prob because they hope to get it with the primary chemo bet there's a few woman out there haven't a clue it's spread if it hadn't been spotted by accident I wouldn't of had a clue . X x

Carolyn52
Member

Re: Bone mets - please join in

Hiya Nicky 

First of all apologises for all my postings yesterday - what am I like ? It was one of those days I sat with the laptop on the arm of my chair and flicked between the boards and facebook all day BUT  promise to be good today.

Phew didnt know it spread through the blood as well as lymph glands so the little blighters have a free route to spread where they feel they want to !!

Growth of hair whatever its like is just nice though and with a bit of mousse or gel - lots of interesting styles can be created !! I had a nightmare with the wigs. ( see earlier postings a few weeks ago)

Well we are here with our knowledge and moans so we must be grateful. Im in Devon and the sun is shining and I even had my morning coffee out on the decking and the patio doors are open and the sun streaming in (well  I do have slippers and two jumpers on though  as its cold ) 

 

Carolyn xxxxxxxx

 

scratch
Member

Re: Bone mets - please join in

Emily...when I had primary breast cancer in 2004.i had fec./cmf. Which was 4cycles of each..my hair fell out completely on epirubicin.but on cmf little bits grew back..i felt bit sicky on it and tired but was already tired from epirubicin.....sharon..x
Carolyn52
Member

Re: Bone mets - please join in

Hello Ellie

I hope my memory is correct. Back in 2004 I had my chemo and Im sure that I had FEC/CMF. The first bit is the one with the Epirubicin stuff and your bald as a snooker ball BUT then I switched to CMF and the hair grew really quickly. If Im correct this one you have it adminstered and then 7 days later you have a top up so it doubles up the treatments but its maybe not so strong. I did feel sick more on it and so had an anti sickness bit popped in the infusion to  help. 

Hope Ive got my facts right and not confused you too much. 

 

Carolyn xxxxxxxx

nicky08
Community Champion

Re: Bone mets - please join in

Hi ladies

What a lovely lot of chatter, and support!

We also moved last year, downsizing as our two D's have now left home. We also had a lot of sorting out to do and the local charity shops did very well out of us! If any charity worker had shaken one of their collecting tins at me during that time I think I would have said I've given enough thank you! Some stuff we also sold on that well known site and some was bought by our buyers so it all went well but took for ages it seemed. We really did spend all of last summer just sorting out things every weekend and going to the local dump to get rid of bits we should have done years before! It has also been nice since moving to buy new, and totally different furniture although my New Years resolution was to stop using an Allen (sp?) key as I had put together so many items!

Onto the chemo type questions -

elily, I haven't had CMF but it is used for primary BC so you may get some info from that part of the forum. I used the chemo part of the forum for info when I went onto docetaxel as there weren't many secondary ladies having it at the time and got a lot of info from the primary ladies about SEs etc.

As to hair growing back it does seem to take a while after the docetaxel, H and P regime so I'll warn you now julzd! And I agree with Carolyn that the fringe seems to take ages! Plus, this time around the texture was completely different from when it grew back after having FEC chemo 8 years ago. It's OK now but I finished docetaxel in Dec 14 so a good year before I feel it's looking it's best, although it did grow back well I just wasn't happy with it for ages. Luckily I have been getting a few compliments recently saying how nice it looks, just as well as our ED is getting married on Friday and I will be in way too many photos!

As to BC spreading, I also didn't have lymph involvement with my primary and was very low risk of it returning, but return it did, nearly 5 years after primary and the spread was through the blood system which is often overlooked as the other method of spread.

Anyway, take care ladies, great to see this active thread being even more active 😊

Nicky x

Elily
Member

Re: Bone mets - please join in

I am going onto a course of CMF after 7 cycles of Epirubicin which didn't reduce my TMs. 

I know it was standard treatment before FEC-T.

Anyone had a course of CMF ... And how were the SEs? I've needed Hb transfusions every cycle of Epi, so am hoping to have a bit more energy this time!

Carolyn52
Member

Re: Bone mets - please join in

I think if I remember rightly about 3 weeks after last chemo it starts sprouting and at least you have a covering but what surprised me was how long it took to grow a fringe !!!! Its very upsetting even to watch adverts on tv for hair shampoo !! If I heard someone say they were having a bad hair day ........it took all my self control not to want to punch them and say loudly " well at least you have hair to have a bad day with ""

 

OMG - I sound awful but thats how I felt as although I was 51 then - felt very down with having to wear wigs and things and deal with treatment although I did get through 12 sessions of chemo very easily with minimum problems when I look back. 

 

Hugs   carolyn xxxxxxxxxxxxx

julzd
Member

Re: Bone mets - please join in

Can't wait to get my hair back I haven't had any since May last year forgot what it's like to use a brush and some shampoo lol X x
Carolyn52
Member

Re: Bone mets - please join in

Herceptin is a really good treatment to get - unfortunately not for me as I have the wrong type of cancer which it wont help. I think I am not HER + or something.

 

AND you will get your hair again which will be nice.

 

Carolyn xxxxxxxxxx

julzd
Member

Re: Bone mets - please join in

Me too I was told it was contained god knows what happened. I was lucky they spotted it really. Hopefully herceptain will give me a good run X X
Carolyn52
Member

Re: Bone mets - please join in

Hiya Barton

 

When I moved last year - we decluttered really seriously and we were lucky as we had first time buyers and they were grateful for a lot of my stuff and that was a good excuse for all new !! Its never worth taking things as they never fit or suit the new place and its a good excuse to spend !!! 

You are going to find it hard though if you are not mobile as its hard work even unpacking boxes and things - lucky enough I moved last June before I had serious health problems and so it was ok. 

I assume you are moving to a smaller place which will be easier for you to manage. Are you staying in St thomas area ? 

 

Carolyn xxxxxxxxxxxxxx

Carolyn52
Member

Re: Bone mets - please join in

Hiya Jultz -

What a nightmare year for you and do you have young children as well ? Funny shows how much I know but I thought that if the lymph nodes were clear it meant the cancer was contained in the breast. Obviously it can be somewhere else and the lymph nodes clear. I think I had one lymph node infected at primary dx in 2004 but I remember my surgeon saying that I had a lazy cancer which shouldnt cause much trouble in the future !!  Well I had 11 years clear and now its back with vengeance in hips, femur pelvis etc . 

I dont watch a lot of daytime tv as its the pits but I do tune in for breakfast tv and sometimes on bbc 2 homes under the hammer. If I cant sleep during the night I put tv on and watch silly stuff . Have been sleeping better since having  a glass of tonic water before bed though.

I think you must be feeling very down not having any hair for a long time as I hated it during my chemo and it was only for a few months. 

 

Carolyn xxxxxxxxx   .

 

julzd
Member

Re: Bone mets - please join in

Good luck with the move and I hope they buy your furniture it will give you more pleasure buying the next lot if the money is from someone else haha. I'm not going on Amazon this week and getting crazy ideas I'm going to try and be good and get out its easy to turn into a hermit I'd never leave the house if I don't start pushing myself X X
Barton
Member

Re: Bone mets - please join in

Sorry Carolyn -messages crossing left, right and centre! Sorry I won't meet you at the hospital this month - maybe next time! Carolyn and julzd, I'm trying to be good and not buy stuff at the moment because of decluttering, but when I have moved - BEWARE! Am considering all new furniture! Although bank balance might not stretch to that, I think my buyer might want some of my furniture, as he hinted at the sofas when he was here last (1st time buyer). Keeping my fingers crossed for all of this. Hugs. Barton.x

julzd
Member

Re: Bone mets - please join in

Been a nightmare of a year Carolyn I'm only 44 so still want to work my primary had no lymph nodes involved so they didn't do a scan it was only when I had planning scan for radiotherapy it showed up in lungs then found it in my liver it's been crazy !,but my halfway scan shows some have disappeared and the rest have shrank so after chemo I will be on herceptain and perjeta hopefully for a long time so I can have a break .
Daytime television is the pits I watch come dine with me and four in a bed even Jeremy Kyle haha X x
Carolyn52
Member

Re: Bone mets - please join in

Yes - sounds like going back to work will make you feel a bit more normal again and a routine will hep you get through this. After I had my primary stuff in 2004 - I went back to work full time and it felt good to be with work friends again as I was only 51 then.  

I retired October 2014 and so Ive done my time in the work place now and can enjoy lay ons and watching breakfast tv in bed etc without any feeling of guilt. 

Sounds like you have had a terrible year of things though with all the treatment and sometimes hanging around at home isnt a good idea .

Carolyn xxxxxxxx

julzd
Member

Re: Bone mets - please join in

Haha Carolyn I bought an embroidery kit and a clippy mat kit (both still in the packets ) we must all be the same . I'm going to try and go back to work next week just ten hours whilst I'm on this docetaxcol I've been off far to long had my primary Feb last year had fec chemo radiation then straight on this chemo as secondary was discovered im ready for some thing normal and some company as everyone's out at work all day X
Carolyn52
Member

Re: Bone mets - please join in

Ha ha Julzd ...........Been there, got the tee shirt but isnt it fun watching the postman arrive mornings with those little packages and then the horror on hubbys face when he realised that its more money spent !!

 

Thought I would take up tapestry as never done it before and I cant keep posting on this forum as ladies will say " oh no not her again "  so I bought a beginners kit ( yes online ) and its a me to you teddy which is quite easy as its designed for 6 years and over !!! It is keeping me occupied and  I have my grandson staying at the moment so Im also busy feeding him !! as hes eating for England at the moment, Forgot just how many meals a day little people eat. 

 

Carolyn xxxxxxxxxxxxxxx

julzd
Member

Re: Bone mets - please join in

Hi Carolyn laughing at your post I'm at the online shopping stage this week bought water alkaline jug a recipe book of soups for every day of the year 4 pillows an oil burner and some juice making books it's ridiculous haven't even looked at them or took them out the boxes. I find I'm that bored sitting in the house when everyone's at work I go on Amazon we will have no money left soon 😵 X X  

Carolyn52
Member

Re: Bone mets - please join in

hiya Barton.

Im not due to Cherrybrook until 26th February for my Denusumab injection so I wont be there next week . At the moment Im glad Im only going monthly for the injection as although its a lovely place - I still feel nervous every time I go in there !!  such a wimp !! 

Sounds good that you are moving to a retirement flat as it will be easier to manage. Dont envy you having to clear out your present home though . We moved last  Feb and it took upteen visits to Charity Shop and dump just to get the garage clear !! We dont store things anymore now in the new house - its hubbys rule and quite a good one !! On the subject of hubby ..........hes delighted Im occupying myself on this site as before that I was shopping online and costing him a fortune in things like coffee frothers and things we didnt really need !!

You are living in the same area of Exeter as me - St Thomas and so when you are better and free of decluttering we must meet for a coffee . I have sent you my phone number on private messaging.

carolyn xxxxxxxxx

Barton
Member

Re: Bone mets - please join in

Hello Karen, another (although ex) Cherrybrook patient! As Carolyn says, it doesn't always rain in Devon - isn't it sunny Devon? Hope you are enjoying having your family close. It does make such a difference, doesn't it?

 

Haven't tried Force yet, although I know their reputation is brilliant. Can't get myself to go (am really shy and don't much like group activities), but might manage it one day.

 

 I haven't been to the Force shop in Heavitree as it's the other side of the river from me and I rarely visit Heavitree. I do, however, love browsing the Hospiscare shop in Cowick Street and the big one in town. I am in the process of moving to a retirement flat and am currently (with the wonderful help of my sister) ruthlessly getting rid of stuff. It's all going to the Hospiscare place on Marsh Barton for sorting, etc. I am finding it hard to believe that I have accumulated so much stuff!

 

Hope everyone is doing well today. I'm enjoying a very lazy morning in bed reading and posting! Hugs to all. Barton.x

 

Barton
Member

Re: Bone mets - please join in

Hello Carolyn, yes, Cherrybrook! They are so kind, aren't they? I'm in there on Monday at 10 for my blood transfusion, then with Dr G at 1.30pm on Thursday then Cherrybrook at 2.30pm for (hopefully) next lot of pills. Don't know when you are due next, but good if we could cross appointments as it were! Have private messaged you. Hugs, Barton.x

Carolyn52
Member

Re: Bone mets - please join in

Hiya Karen.

So you were a Cherrybrook lady too. Force is a wonderful service that is lovely although I havent used it yet. Back in 2004 when I had the primary bc - I went to one of those Looking good days there and it was really great  . Force are all charity funded from their wonderful charity shop in Heavitree which is like a Aladdins Cave of bargains and I have missed going there but must try to get there in a few weeks for a browse. I also donate a lot of unused stuff too. 

It doesnt always rain here in Devon !!!! In fact we have been able to sit out on our decking for early morning coffee a lot this Winter .

Im sure you are in good safe hands now too and wish you well as you really need a good support team of family and friends  in place around as we do have a lot of bad and good days with our treatments and need them near.

Carolyn xxxxxxxxxxxxxx

julzd
Member

Re: Bone mets - please join in

Yeah Sharon sometimes best to just be told what to do and go with it. Well done with using the cold cap I've heard it's painful X x
scratch
Member

Re: Bone mets - please join in

Hi jultz.at The moment I have docetaxol chemo.and demusmab monthly injections monthly for my bones.I am er so cant have Herceptin perjeta...your decision is difficult about more docetaxol.its hard to be given a choice isn't it? ..take care.sharon.xx
scratch
Member

Re: Bone mets - please join in

Hi.Carolyn.u had fec/cmf in 2004.did lose my hair.then it came back in my bones and peritoneal in 2013.I had capecitabine for 15 months.no hair loss..then letrozole for ten months.then liver Mets.so back on iv docetaxol.have had 3 so far.have used coldcap no hair loss so far...bur other horrid side effects.yes Herceptin and perjeta.and kadcyla are for her2 ...takecare.Sharon.x
julzd
Member

Re: Bone mets - please join in

Hi Sharon I thought you were going on h and p too I must of picked it up wrong. I still don't know what to do about the extra two docetaxcol I can have if I'm ok can't decide what to do X X