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Bone mets - please join in

scratch
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Re: Bone mets - please join in

Yes Caroline wasn't planned but kept looking in pond.seemed empty as my chair next to pond...u wish ibrance was easily available were so slow in this country..my friend was told Southend hospitals cant afford erubulin x so she's on a different chemo..sharon.xx❤
scratch
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Re: Bone mets - please join in

Lindyloo.i phone up oncologist secretary and she gets ok from oncologist then they post copies out to me..you are entitled to do it if you want to .but my oncologist is so vague sometimes...sharonx
scratch
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Lindy loo.. When I went on cap I came out in a rash..but after that just tired no hair loss.put plenty of cream on feet and I never had any problems with hands and feet as some people do.....also for me it made me feel better took away the aches that I had..and take tabs at home I did have a slight reduction after first treatment because of rash..i also had holidays normal lifestyle..take care Sharon..x
truffle_shuff
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Re: Bone mets - please join in

Same here , I get great pleasure in ticking opds off ,then when card ,letters finished ripping up , everything goes x take care everyone

LYNDYLOO
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Re: Bone mets - please join in

Hi Sharon

Thank you for replying regarding tumour markers. Did you find cap ok as I think that will be my next treatment. Also you mentioned about getting copies of scans reports. Do you have to ask for then?

Julie are you under the QE IN Gateshead.? as that is where I get all my treatment.Have a good weekend everyone. Linda

Carolyn52
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Re: Bone mets - please join in

Hiya Sharon..glad u have got some more fish as an empty pond is like a fruit bowl with no fruit!! They will give you a focus too as I know you have been a little down in the dumps this week.
Weather looks promising today ..just got up so still enjoying my first coffee.
Anyone got any nice plans for the weekend?
Hugs xxx
scratch
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Hi yes I rip up letters that are done..but keep scsn reports and hosp appt cards.. We weather good here doing bit gardening later..x
Carolyn we cleaned old pond and I went to aquatic centre yesterday to buy plants and came home with load more fish
These are shumbumkin apparently not such hard work as kois....pump on or off theyl be fine..it seemed strange pond no fish..something to amuse me as well..sharon.xx
julzd
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Re: Bone mets - please join in

Sharon I rip all mine up don't keep any of the letters soon as I've been to appointment it's ripped up and put in bin don't keep anything. It's raining in Gateshead today but I'm at work at one so that's ok I'm going to start the garden next week take care everyone x x x
scratch
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Re: Bone mets - please join in

Hi jultz yes I only get bills and hosp appts.got a special drawer in my dressing table to keep them all in along with appt cards scan results blood test paperwork...
Still cant find things sometimes 😂 bone density is fine no needles just the machine goes over you ..xx take care keep on decluttering that's my hobby now done wardrobes.kitchen.now on back garden..crappy old ornaments and old plant pots....yes whenever you want a few days away you have to consult Calender to see if it matches up with hosp..i was just looking again today
But iv got hosp appts.promised babysitting..lunchdates with friends.plus other bits ..take care sharonx
Carolyn52
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Re: Bone mets - please join in

Hiya jultz
The bone and heart scans are easy peasy and its good they are checking you so well.
The sleep thing is a pain but you have to invent some ways of nodding off.
Try doing the a to z of something ...cars, tv progs etc and will send yourself to sleep with boredom !!
julzd
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Well I've got three letters this week bone density scan on 6th June heart scan 6th July oncologist 5th Aug love getting letters me lol x x x
scratch
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Re: Bone mets - please join in

Jultz.I'm up and down..down yesterday.ok today....letrizole affected my sleep .used to have my eyes shut but by four in morning my brain was awake. Better than chemo though..❤ Sharon.xx
Carolyn52
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Hands up ladies ...
We all have a kitchen drawer ( or fruit bowl) like jultz ...they just breed with odd things . Always loads of chargers ( that don't fit anyrhing) and adapters ( for what appliance?) Always a manky screwdriver and loads of nuts and bolts !!
Kitchen cupboards ..well don't go there ...Kitchen gadgets that have been used once and those empty plastic boxes we recycle from our takeaway Chinese meals !
Hugs everyone xx
julzd
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Hi Sharon it amazes me where they all come from. How are you feeling I'm getting more energy but I can't sleep at night it's horrendous I used to be such a good sleeper x x x
Marirose
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Oh Marie 

That is great news now you can get on with that wedding it must be lovely to have a daughter to share her wedding with. I had 2 boys one married in Jamaica while I was having chemo and the other in France which involved 2 weddings a civil ceremony and then church the following day. I had nothing to do with the organising. 

So all you out there treasure your daughters I love my sons but miss a daughter.

 

Love and ((((hugs)))) xxx

scratch
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Re: Bone mets - please join in

Jultz.I did cupboards while ago..chucked loads out.old mob phone leads .old leads to ?.loads gadgets that iv bought and not used ..unbelievable isn't it. ..Sharon. X❤
scratch
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Lindy loo.on capecitabine markers went to 60.xsharon
scratch
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Re: Bone mets - please join in

Hi Lindy loo..my markers were 270.when got recurrence..bones and peritoneal..went on capecitabine that completely cleared the peritoneal Mets so was just in bones.then got more hip met so she took me off it and had letrozole then ui had swollen stomach in
Nov had peritoneal back and added liver Mets..so had docetaxol now finished that and markers are about 400..just on examastane ..at moment..take care..Sharon x
Marie123
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Hi all,

 

Just to let you know as far as the onc is concerned  my lump is not C . I've got to keep an eye on it and if in pain , straight back. . I never ised to worry about things like this.

 

The sun is shining here and the world seems back in its place.

Take care everyone

Love

M xxx

julzd
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Hi carolyn I'm fine thanks I've been working a bit extra and today I decided to sort the kitchen cupboards out I'm bliddy knackered don't know how many wires and leads I've got don't know what there off but there going in the bin hope your all ok I'm going to have a trip up the tip to get rid of all this before the husband comes in and wants to keep it lol x x x x
LYNDYLOO
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Re: Bone mets - please join in

Hi All

 

 Not been on for last couple days. Been catching up with all the  posts. Site has been very  busy.scratch can I ask what your tumours  markers are now since you mentioned they were going  up. Still really worried about  what they said about  inflammation  near bowel. Lynne  did your  onc suggest investigation  with bowel problem  you  have? Mine onc seems to be using  the wait and  approach  to see  if anything  happens  within the next  few  months.  Regarding  how often  scans are done in my case once treatment  was finished in April  2010 they only  checked  my bloods to monitor  tumour  markers. Stayed on Letrozole till 2014 when it got changed as markers had gone up to  41 and bone scan showed progression . Since  then  I have  been scanned  every  6 months. Not had bone scan since Jan 2014. Think I am  now  going  to be  scanned  every  3 months.  Carolyn I am the same as you regarding  hair. I had really  long thick hair before  all this happened had to wet hair if I wanted to put hair up. On Letrozole my hair was definitely  thinner than what it is now on E/E but still no where  as thick as what it was which like you  I get upset  about. Nice sunny day  here in N/E. ZGot lots of washing out drying.  Hope everyone  is feeling  OK. Linda

jenny29
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Re: Bone mets - please join in

Hi all, with regards to seeing a reiki practitioner, if this is something you are interested in trying there are also spiritual healers - see the healing trust http://www.thehealingtrust.org.uk/, practitioners have to go thr training. Reiki helaers also go thr training but it seems more variable.

 

Some practitoners offer distance healing - such as the quaker tradition.

 

Some questions I might ask someone was how long they had been practising and what kind of training they have had, to help me get a feel for them. People who offer healing do often an interest in the spirit world but they should check out with you what is acceptable for you rather than just coming out with things. If this isnt something you want, maybe let them know.

 

Natalie, on the question of why me, I take the opposite approach - I ask why not me?  Obvously I would prefer not to have cancer but this is how it is now for me. I like to think I'm a fairly okay sort of person but my view is that life is full of light and shade, joy and suffering and everyone experiences these in some way.  I'd just like a little bit more of the joy as well please.

Carolyn52
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Mrstimps..yes Jeanette is right ..stay away from quack sites as a lot of them say such hocus pocus .there is one called inspire which does give lots of info on newer stuff though like ibrance (new drug) but its US based and their medical stuff is different to ours.
Second hope is another UK site which offers good info .
Hugs xx
rosie53
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Re: Bone mets - please join in

Hi Mrstimps, just do your research on the net and also our threads, and jot things down on paper because you can guarantee you will forget to some of your questions. Be careful what you look up on the net though there can be some scary sites out there, stick to the Breast cancer sites and macmillan sites. 

Hugs Janette xxxx 

rosie53
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Re: Bone mets - please join in

Morning ladies, lovely day here in Manchester. 

Carolyn, I'm fine thanks, just been busy with my new little girl Heidi, we brought her home last night and she slept in my daughters room as she is a bit nervous. Gosh I hardly slept a wink, it felt like the first night home with a new baby worrying she is ok and still breathing!  She was absolutely fine didn't make a peep all night! 

I've posted a pic on the photo thread but it's come through upside down 😀I'm useless with technology. 

Hugs Janette xxxx 

Carolyn52
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Re: Bone mets - please join in

It's always difficult as you have all these things in you mind but as soon as you see oncologist ..it all gets forgotten.
Best research the internet and these boards for info and then make a list and go through them item by item.
I find that there is more info here if you hit the right threads ..than you get from oncologist!
I do hope your mum gets the right treatment plan.
Hugs xx
Mrstimps
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Re: Bone mets - please join in

Morning ladies, hope everyones good and ok if i pick your brains please? My moms fot her first oncologist appointment on monday, is thete anything we should make sure we ask? X
Carolyn52
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Re: Bone mets - please join in

Hiya Helen.
Will send big vibes that the cold cap works for you and you still have hair for your very special day . Must b busy with wedding plans etc.

Jultz. Jeanette and allibee
Are you ok ..you have all gone quiet.

Hugs xxx
HelenAquarius
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Sharon - good to hear about your hair as I lost all mine on FEC too so hoping the cold cap works. If I can get to my wedding in July with some left I'll be happy and then I'll prob dye it just before and not care if it all falls out after!

Carolyn - hope your scan date comes in quickly. I agree you've got lovely hair! But we all have our things that matter a lot to us. My boobs used to be my best feature!

Marie - relieved the rash cleared up. Fingers crossed with collar bone

Xxx

Carolyn52
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Re: Bone mets - please join in

Hiya Marie 

Nice to hear from you. best of luck with scan and x ray results... aagh stress and the wait are not good for us.

How nice you have the wedding to look forward to.. hope u have your outfit sorted out and I bet you have already changed your mind at least twice if you are like me.

I had my nephews wedding a few weeks and found it difficult as due to my hip problems can only wear flat ballet pumps and somehow outfits don't look right without killer heels!!  

I'm surprised that weddings don't just have a disco and uncle Sid doing the birdy dance these days..my nephew had a pizza bar..photo Booth.. cigar bar and bucking bronco ( was tempted but had my sensible head on) 

Lots of hugs xxx

Carolyn52
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Re: Bone mets - please join in

Hiya marirose

You say the nicest things but I'm such a vain cow. . obsessed with hair loss at the moment!! You must have very tough hair and lucky you. The early chemos didn't cause hair loss..I think it was cmf that was a good one. In 2004 I had four fec and eight cmf.. lost hair with fec but then it grew on the cmf part. So I wasn't bald for very long. The newer chemos seem to be hard on the hair loss.. I think cold capping must be so hard for the ladies to cope with too. 

I'm glad you are in touch with giedre as I was worried about her not posting the last few days. Its certainly nice having you around as you have been there and done it with most of the treatments!! I was also glad to read your hubby is OK too as it was a worry for you.

Well that's it... damn hubby's got sport on tv again... what is it with men and anything connected to balls!!

 

Hugs xx

Marie123
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Hello lovely ladies, it has been a while since I posted , but life has been very busy here. I have been reading posts and trying to keep  up.

 

FF , so sorry about your sad news.

Chocolates good luck with the SATS

Julie. best wishes to Jenny , the photo  on the trascript IS NOT ME.

 

My 'rash' did clear up, thank you to all who gave me such good advice.

Have now a bony lump on collar bone, after nearly a four hour wait to see onc today  it seems it hopefully is one of those things. Xrays tomorrow and another look at scan results , so fingers crossed.

 

I think I sometimes need times of denial about this illness  , but   being  busy getting ready for my daughter's wedding and working full time helps  me to feel almost normal , just very tired. 

 

Hugs and best wishes to all

Love M xxxxx

 

 

Marirose
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Hello Giedre

I hope you see this post I have sent you a pm and it has gone through.Look at the top of the page and you will see envelope with 1.

 

Carolyn

your photo shows that you have a lovely head of hair. I felt that my hair was getting thin on Exemestine especially when I was drying it I could see it flying away. But it soon stopped before that I was on Letrozole for 9 months and didn't have any trouble. I had my hair coloured and foils in and had no trouble even now on this tablet form of chemo no trouble. It does get light very quick and I feel as though it is finer than it used to be although my hairdresser for many years doesn't think so. But the IV chemo back in 1997 the nurses were suprised I had kept a full head of hair when everyone else had lost theirs. Even the Rads didn't get rid of all the hair under my arm. Maybe my hair is strong stuff I couldn't get a curl to stay when I was young.

Hope yours will sort itself out best of luck but it does look nice

 

Love and ((((hugs)))) to you all xxx

Carolyn52
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Re: Bone mets - please join in

Sharon. I've been having so much trouble with hair thinning ..I decided to try to help.myself by avoiding colouring , using simple shampoo and only washing it weekly. Everyone assures me I have no bald spots but I just wantvto be sure.
Sorry u not having a good day .. that's why we are all here for you ...day or night someone is always around.
Loads of hugs xxxx
scratch
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Re: Bone mets - please join in

Hi Carolyn well the sun does lighten hair..didnt people used to put lemon juice on their hair and sit in sun to lighten it.. xx. Did they tell you not to have highlights or did you decide yourself ..iv been moody today don't want to do much.going to bed early and see if I can wake up in a better mood.xx❤ sharon
scratch
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Hi marirose
That sounds good.what a nice thing that someone left them the funding in their will..sharonx
Marirose
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Hello Chick 

Nice to hear from you and I am so glad you are doing well long may it continue. This forum is really friendly and helpful I hope you pop in again from time to time we love to hear from you.

 

Sharon your Day centre sounds great although we do have a centre locally that gives you 6 free beauty treatments 2 free hair appointments and advice on other issues for making you feel good.After the freebies you can get all treatments at reduced prices.It is a charity and funded by a charity trust left by a local couple who left a large sum of money in their will.

 

Love and ((((hugs)))) to all xxx 

Carolyn52
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Yes Sharon ..you were taking a big risk with your hair after enduring the cold cap ( very brave) and then colouring it so quickly but needs must !!
I would love to have my highlites done again but just can't risk any more hair loss at present ..hoping if I sit in Sun ( vitamin d too) the grey might just bleach itself !! Ha ha 😗😗😗
scratch
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Re: Bone mets - please join in

Hi by the way didn't colour hair on docetaxol.waited a few weeks after it finished told me to wait 3months.but I did it earlier it earlier.im just 😈 naughty..sharonx
scratch
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Hi Carolyn..yes enjoyed it yesterday.wasn't sure last week.but have been given 12 weeks...i will give them a donation at end the course.a church near me does Reiki ..i just give couple pounds when I go there. But the lady I pay costs 25pound...so big difference..hope you find something you like.takecare sharonx
Carolyn52
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Re: Bone mets - please join in

Hiya Sharon. Following your successful day at day centre I started looking. We have a charity run one near the hospital and they do reiki so I'm going to phone and try to get a session to see if I like it. The private ones are £40 an hour which is expensive. Apparently with reiki ..if you arnt paying you have to give something . I ought to bake a cake but I'm afraid mine end up like frisbees !! So might have to b something else.
Hope but having a nice relaxing day.
Hugs xx
Carolyn52
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Re: Bone mets - please join in

Hiya Sharon.
The day care sounds lovely and I'm sure we might have something here similar but haven't got into that yet.
A lot of oncology staff retire and often volunteer for these places which is so good to have time with them. The normal clinics are so manic and time limited. I'm chasing up a scan I should b having but haven't received an appointment yet!! Im dreading results but then i must start being an adult about all this and face my demons!!
Hugs xxx
Carolyn52
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Thank you chick for such a lovely posting and sometimes it's nice to know that members read posts but don't always get involved in our daily ramblings !!
What lovely results you have had ...my trouble is too much choc and cake and I'm sure I should b following your good vibes. Interesting
About the curcumin tablets too as I have read a lot about them online.
Hugs xc
scratch
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Hi Carolyn and jultz.i won't bother with wool bedding then...they're not cheap either are they....i had my second visit to daycare place..i enjoyed it better than last week...had manicures.nice dinner some nice people same as me to chat to..but best of all spent 35mins talking to the Dr there they have access to my medical notes..she talked me through scan reports and I felt better..never get much time with my oncologist she rushes in tells me a bit then she's gone leaving me with hundred questions....take care all.sharonx
Chick
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Good Morning Ladies,

I have not been on for a while but just wanted to say a huge thank you for the year support I had from reading your posts. I was diagnosed last June with Secondary to the Spine, Pelvis, Lymph Nodes and Liver. I finished my Docetaxel in November and was put in remission in February. Sadly this was incorrect as I had never been examined once by my Oncologist. I transferred my care and I am now midway with Radical Radiotherapy to the Lymph Node in my neck. I am also on Anastrozole and Zoladex to shut my Oestrogen production down. My last scans showed the visitor had disappeared from my lymph nodes, possibly can't find it on my liver and it is contained in my bones. If the liver chap re-appears he will be blasted with RFA. With thanks to you ladies and your posts, I had a better understanding and still recite some of your comments today. Live with this like a chronic disease not a death sentence. Stay positive and each morning get your best smile out. I have been sugar free for a year (tumour feeder), still try to maintain gluten free and take a Vitamin D and 2 Curcumin tablets each day, along with milk thistle. All my blood tests are excellent. I am now pursuing the failings of an Oncologist for negligence. I firmly believe that this visitor lives with you, not you with 'it'. Stay strong my girls and I will pop in and out time to time.

Thank you for my strength xxx

scratch
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Helen aquarious...when on chemo they scan before then halfway thru.then at the end to see how it worked..if your on hormones I think not so frequently..so differs ...I lost all my hair on fec...none on capecitabine..and some on latest docetaxol with coldcap..sharonx
scratch
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Hi Helen ...yes iv just FG finished docetaxol.and I used the coldcap..have to keep talking to the first fifteeen mins then its bearable..i lost some hair but other people said they cant notice..eyebrows' went and eyelashes thinned.so I was glad the coldcap definately worked ..xx take care sharon
Carolyn52
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Jultz ..hmmm..not sure if I will b buying wool bedding but I had a rubbish nights sleep too .
Helen .. fingers crossed the cold cap works for you after all the pain and time . Sharon had really good results with the cold cap . In fact she's colouring it too !!
Hiya to everyone else
Xxxc
rosie53
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Okay Miss will do! Xx
Carolyn52
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Hiya Jeanette . Detention for missing class for a few days ...how exciting a house trained puppy which will make life easier!! As part of you detention for missing class for a couple of days .......PHOTOS of the new arrival please as we need to c her.
They say that having a pet is very therapeutic
Hugs xxx