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Bone mets - please join in

myfanwy18
Member

Re: Bone mets - please join in

Hello boney ladies,
Tawny, I was interested to read your post. I had Taxol over the summer, six lots for nodes in my abdomen, liver as well but, thankfully, it turned out never to have been there. I saw ONC after treatment (Sept I finished) and he said it had been successful. However, when I had my blood test for Zometa last month my Hb count had dropped to 8.7. I asked the doctor who called was this due to my treatment or my illness, he said my illness. I had a blood transfusion and don't know what might happen next. I had a scan last Friday and see ONC on the 13 December so wonder if he'll raise it then. I didn't feel too bad at 8.7 and could continue my phased returned to work so am very lucky in that respect. I know how you feel about going back on to chemo, I would be so sad if I have to do the same after finishing chemo in September and getting back to some sort of normality at work. At the moment I can't even think about it.
Claire x

golightly
Member

Re: Bone mets - please join in

Nina, that's great advice you have given Alison and I would add that he picc line will help reduce use of needles and protect your veins from the chemo. Hopefully the chemo might not have all the same side effects as before too. I really feel your fear, and hope that posting will have helped you. Lots and lots of love to all of you having a particularly bad time xxx
chris, I didn't know about the antidepressant/ hormone therapy issue. I also would recommend a pharmacist looking into this for you. Also docs have a formulary which they can consult re drug interactions. Definitely right for you toget this sorted......pretty awful of docs etc if they have impacted on your treatment. You probably do need them too...so ...another thing to sort......joy deep joy...like you need another thing
Swannie, re your rads, I don't think it's being unrealistic to take a couple of weeks signed off. Your body will need to rest in between treatments. Sometimes you can feel nauseas and very tired. I had ten fractions last January to my pelvis and I was really tired. It's individual, but I wouldn't have coped with work as well. Some might though! Hope it does the trick for you...takes a little while for the effect to peak, but radiotherapy is amazing and works so well xxxx

broomsticklady
Member

Re: Bone mets - please join in

Sorry to hear Alison you're struggling. The blood transfusion wil help a lot - you don't realise how washed out you are til you have it and it takes effect and you feel better for it. Thats the good news! The better news is you'll cope with a PICC line fine - you've been thru so much - it's one more hurdle to get over and in the long run it will make things easier for you. I had a Hickman during my primaries and like you I was Scared - very Scared. Looking back it wasn't as bad as the anticipation - you will be a nervous wreck - don't try and hide it or stop the tears - just go with the flow as it were. Sooner than you know it it wil be over. My chemo ward were very good at giving me Lorezapan (a benzo stronger than valium) which helped take the edge off before they approached me with a needle - ask about that - it does help.
I've lost you rpost - I think you said at the hospice and tomorrow - so you don't have to wait long and the hospice staff are truly incredible - I was so scared to go there the first time to see the Pain Man but now I'm used to it and it isn't just for those on their last days - it's for anyone like us with a chronic disease which is treatable but not curable. And if it gets bad, think of how good it is to be NED liver wise right now - thats fantastic!!
Best of luck
Nina

AnnaB_BCC
Member

Re: Bone mets - please join in

Hi Alison,

I'm sure other forum users will be along soon to offer support but in the meantime I thought it might be useful to post a link to the Paclitaxel Factsheet just in case you hadn't seen it on the main BCC site.

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/paclitaxel-taxol-bcc34

Please do give the BCC Helpline a call if it would help to talk to someone in confidence. It reopens tomorrow morning at 9am Tel. 0808 800 6000.

With best wishes,

Anna, BCC Facilitator

Tawny
Member

Re: Bone mets - please join in

Hi everyone. I normaily just read these threads but everything seems to have gone wrong in the past few weeks. Increasing pain since February has led to rads in 6 different places and an MRI confirmed bone spread (I also have liver mets, but these seem to have disappeared for now). I was left wiped out due to all the radiotherapy and wondered if I was a bit anaemic. Had a blood test on Monday which confirmed that I was very anaemic and was told to pack a bag (test done by local hospice) as I was due a transfusion the next day. Went in and then it was decided to send me home as I was due my first appointment with a new oncologist at a new hospital on Thursday. Had the hospital appointment and they confirmed I need this transfusion asap. I knew that I was due some chemo but was expecting capecitabine, new onc shook his head and said because of issues with my bone marrow I needed to have paclitaxel asap. At this point, I just broke down. The thought of the hair loss again, looking ill, feeling ill has all put me in a tail spin. I went to the hospice on Friday and had my transfusion - Richard & Judy were opening the winter fete so they popped their heads in and said hello! - and I went home on Saturday afternoon. Tomorrow I have to have a picc line inserted (terrified again), which I've never had before and will be starting chemo on Friday. It all feels so rushed. Would welcome any words of advice. I don't know if I've had this chemo before (primary treatment was 7 years ago in Italy),any help anyone could offer would be appreciated. Would also like to know something about the picc line. Am majorly needle-phobic. HELP.

Thanks
Alison x

EllisB
Member

Re: Bone mets - please join in

Thanks Nina and Lizcat for advice - will ask pharmacist and oncologist to make sure. In the meantime I will try to keep on an even keel - think I need a health warning around my neck never mind the books and cig packets!! Have a good week boney ladies!
xxxxx

donns58
Member

Re: Bone mets - please join in

Hi Nina
Thanks for the tip re my eyes. I am on Cap an like you I was getting very worried. I'll be at the pharmacy first thing.
have a good evening
Donna X

broomsticklady
Member

Re: Bone mets - please join in

Hi Jacqui - hopefully the rads will be as good for you as they were for me - I'm now off morphine except for an odd break thru when I overdo it! The sickness comes if they are treating your middle area - thoracic region mainly - thye do give you Dom Perignon - I always think of it as such in hope but never has the same effect unfortunately... I won't lie - I had 4 zaps to 6 vertebrae and it knocked me for six - I wasn't that great beforehand so didn't have a good basis, but I was very tired, queasy, no real extra pain but weak as a kitten and resorted to wheelchair to get out for a while. My second lot to my hip base of spine was just 1 zap and I prepared for worst but was pleasantly surprised by how easy I got off - and between them they did do the trick. Capecitabine and bone pills keep me stable for now so I'm a happy bunny for now - but have w/c 27/1/13 in my head for my next scan with trepidation. Not sure how much this will help you plan but hopefully give you some hope for success!
Donna - are you on Cap? that can do your eyes in - get some artifical tears over counter or on prescription - they help a lot. I was convinced I had eye mets til optician put me right! My sympathy vein wise - I have 1 in my arm which is deep and you have to be in the right coven for it to talk to you - else they do my feet too - blood transfusion that way wasn't fun!!
Ellis - check carefully with a good pharmacist re Tamox and anti depressants - my onc wanted me off duloxetine, quite an extreme SNRI of which I need max dose. I really didn't want to come off - my understanding had been it was some SSRIs which were the problem - and got my psychiatrist to check with their pharmacy and he came back and said dulox ok - I also got my chemist pharmacist to check cos I didn't want to screw up tamox but didn't want to have to find another anti depressant which worked - I've been badly clinically depressed for years pre dating cancer and its not easy to control these days - never has been but harder now - can't think why!!
Val - postive red blood vibes coming your way - are you snowed? - we are!! Blue sky, snow and lunch a local carvery where they don't boil meat but roast - yum!!
Amysmum - you don't do things by halves do you?! It seems like yesterday you weren't sure if it was a met, and now look at you - more surgery than most of us have had put together!! Glad it sems to have worked and I hope your onc is right about th e'new' one not being so troublesome.
Katie - love your chatty posts and glad I'm not only one who takes a deep breath when an author mentions BC!! Books should carry a health warning like cig packets!!
Fingers exhausted now - to think I used to do this for a living - with achey fingers and my typos heaven knows how!! Love to all boney ladies!
Nina

swanie
Member

Re: Bone mets - please join in

I have not been on this thread for a short while, very busy and very tired - it is amazing how many new posts there are, sorry just do not have the eyes for reading them all. I hope you are keeping as well as you can and enjoying lovely sparkly mornings.
A query - my onc has refered my for 5 sessions rads to my lower spine starting Monday week. I have started getting pain in my legs and my hips just don't feel quite right, stiff and unresponsive. Apparently this is due to pressure on the spinal nerves. I understand I will feel quite peaky , nausea and runny guts for a while. any idea on how long this may go on for and how severe it tends to be. I am in a patient based job and want to get an idea of whether I am being realistic in expecting to be able to work through this. I hate cancelling clinics at the last minute so forward planning is a bit of a must for me. I appreciate this is a bit of a 'how long is a piece of string' question.
Did twig that Val has been going through a rough time - I hope life is easing up on you and treatment is helping.
cheers Jacqui

donns58
Member

Re: Bone mets - please join in

Hi Belinda
Thanks for your reply.
I've got everything crossed for tomorrow, my daughter will be really disappointed. I don't feel too bad at the moment, just the norm really tired backache etc. At the moment my eyes are really sensitive. Has anyone else had any side effects with their eyes from Xeloda? they are just really sore!
I dread having bloods from the feet, it takes forever for them to get a line in, I normally get sent all around the hospital to see who can do it. Still maybe tomorrow will be different.....yeah right.
Love
Donna x x x

belinda
Member

Re: Bone mets - please join in

For donns58, Hi Dionna, thank you for your kind words. I have had my markers taken for years now, 4 weekly when on hormonals and now 3 weekly...and still I have marker anxiety after all this time. I've heard it is really painful to have the bloods taken from your feet. Have a wonderful time in New York with your daughter! x
lizcat
Member

Re: Bone mets - please join in

Ellis B - from what I understand some anti-depressants can have an effect on the effectiveness of hormone therapies but there are combinations that are absolutely fine. For example, I have prozac with arimidex but you can't have it with tamoxifen so do ask your onc. I tried to come off the prozac thinking my body might have got used to the hirmone side effects but after 3 weeks off, had to go back in them - for my sanity and that of those around me! Lesser of two evils!

Donna - Fingers crossed for your trip next weekend. My sister lives in London and I love going down there to visit and see some sights, in fact am missing a pre-Xmas trip today because of appts this week, but hope to get down in January. Have to admit, I couldn't live in a city!

Katie - I loved Kimberly, Dani and Louis tonight. I do know who has gone out but won't spoil it and reveal all here!! Enjoy your pancakes today. I can't wait to get to Budaoest markets and eat and have gluhwein - non alcoholic in my case. Mum will have the alcoholic version! Is it tomorrow you are back at work ?

Enjoy Sunday as much as possible ladies x

donns58
Member

Re: Bone mets - please join in

Hi Val, thanks for your response.
I going to try to post more regularly from now on. Hospital Weednesday..... I dread it as they take the blood tests from my feet which sometimes works but can take a longggg time for the blood to flow. Think my veins are worn out and probably a bit feed up by now. Hopefully if all is ok at the hospital I will be off to New York next Saturday so keep your fingers crossed. It's with my daughter who is 19 she has always wanted to go. Saving all my energy up at the moment..............
It sounds so nice when I read the posts how people have this fab view etc..... not quite the same living in London so a bit envious of those that have these fab views and the beach!!!! if only.
Well to all you lovely ladies have a lovely Sunday and I'll be thinking iof your lovely views while I look at mine!
Loads of love to you all
Donna xxxx

EllisB
Member

Re: Bone mets - please join in

Hello Everyone and best wishes to all - stable and those with not such good news at the moment.
I wondered if anyone has any thoughts/information about the effects of anti-depressants on hormone related drugs? I've been worrying about the cipramil I've been taking - low dose of 10mg per day. I read something about it's negative effect on tamoxifen - and have been wondering if maybe it has contributed to the failure now of tamoxifen, arimidex and exemestane to work for me. I've now been put on faslodex and have stopped taking the cipramil - but after a few weeks find I'm crying a lot and getting upset about things that previously wouldn't bother me. It's a tough call because on the one hand I don't want to be a complete misery to myself and everyone else - but I don't want the faslodex not to work, after I've had a lot of spread in 6 months, just because of an anti-depressant! (When I spoke to the GP about the cipramil he thought it was such a low dose it was probably having a placebo effect anyway!)
Any way - if you have any thoughts I'd be grateful - sorry to be a moaner 😞
Chris

Katie2002
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Re: Bone mets - please join in

Hello all boney ladies!!!
Great to see you posting again Val - you are a star! Read any good books recently? I have just finished the new Karen Rose...yet another book spoilt by heroine experienced having bc!!! Books should come with a warning - this book contains cancer plot! It.s all mad.
Anyway gorgeous day here in Bolton. We.ve even got an ice rink in the town square. I really want to have a go and relive my youth. What's the chances I'll get spotted by be of my nurses? After the week I've had probably highly likely. Not only have I broke my phone by accident, my iron stopped working and god knows how I've broken shower screen. I got home on Thursday to a lovely letter from the police saying I had gone thro a red light and I will be goin on a red light infringement course! Whoopee!!!!!! Can I not play the cancer card??? Surely it has to come in handy for something!
On a different note wasn't strictly good tonight? Thought Louis and Flavia were brill but have voted for Lisa coz she makes me smile! When are they off to Blackpool...it must be soon.
Liz - have a brilliant time in Budapest. Wrap up warm.
I'm off to Manchester markets again tomorrow. Looking forward to eating pancakes.
Have a lovely weekend everyone xxx

lizcat
Member

Re: Bone mets - please join in

Hi all,

Last 3 days have been beautiful here too - fab views across the bay to the Lake District hills and the sea in and so flat it looked like a mirror. I love this cold, dry weather!

Amysmum - thanks for writing about your experience and surgery. It seems very encouraging. I've had bone mets for over 5 yrs now and recently they've created more pain issues which the onc and a neurosurgeon have been trying to decide how to sort for the best. Cement in spine was talked about in Aug but deemed not suitable so we left things for 3 months. Then the pain got worse and was driving me bonkers cos I couldn't get comfy, especially at night. Neuro man thought rads would be best but onc (who is the big rads chief) wasn't sure so they had a chat and the outcome was have an x-ray and I see neurosurgeon on Weds this week so if he ends up saying vertebraplasty still no good but surgery may be, I won't be as concerned! On the other hand he may send me back to onc......

Val - sorry not managed to catch you on phone yet but see what I can manage over next few days. Hope transfusion benefits start to kick in soon and you get tax start date sorted asap.

Anyway, tea is ready so I must go and dish it up before settling down to Strictly!!

Love and good luck to all, Liz x

scottishlass
Member

Re: Bone mets - please join in

Donna,
Nice of you to post. Please keep doing so as we love to hear from new people! Sorry you have had to join us but glad you did, if you know what I mean!
I am happy to help when I can. I just remember how I felt when I got both my original and then 10 years later when I thought all was well, my secondary diagnosis and just how scared and alone I felt. When you are first diagnosed there seemed to be plenty of support but secondaries was a different kettle of fish and I did not know one person who had secondaries for quite a few YEARS!. I have secondaries in my spine, ribs, thorax and the worst area is my pelvis. Finding this BCC site has made a huge difference to me and for many other people too of course. This is my very favourite thread and if I ony have energy to read or post it is this thread I go to!
Hi other boney ladies, and lurkers!
I had a blood transfusion, 2 units, on Thursday but to be honest I have not noticed any improvement yet which is rather disappointing. Now I am waiting to hear about starting Taxol and the ward I go to is trying to sort that out for me as I need to go every week. When I was in the ward on Thursday a lady was not sure if she was going to be well enough to have her next round of treatment because her temperature was slightly high. She had to wait for ages until a doctor came to speak to her and then she was given the go ahead. The smile on her face was lovely to see. I said to her " unless you have been there, no one woud understand how it is to feel you CAN have your chemo!". No one wants it but you do want to at the same time so that you can get on with the treatment!
The sun is shining here today and I woud love to go out for a walk this afternoon. The beach is my favourite place but I think I may need to take my wheelchair in case I run out of puff. Hope the sun in shining where you are, Love to all bone mets ladies, Val

donns58
Member

Re: Bone mets - please join in

Hi Val
I always read the posts but never really put any of my own up. I just wanted to say I always find your posts very helpful and positive.it's great to know there are other people out there going through the same as you.
I was diagnosed in 2006 with bilateral breast cancer that had spread to the lymph nodes on one side. after 4 and a half years on tamoxifen all seemed well.However just when you think it's all safe again it raised it's ugly head in the hip, spine and top of the right leg. they gave me femara but it didn't work and was put on Xeloda 18 months ago with bone strengtherner once a month.
I worry everytime I go to the hospital that it may have stopped working. My heart stops beating when they talk about tumour markers an that they have moved up or down.
It's just great to know that reading people like your postings and Dawn and Belinda I find them very inspiring and I just wanted to say Thanks it really helps.
Donna xx

AmysMum
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Re: Bone mets - please join in

Hi Ladies
I have been reading, but haven't been able to post for 2 weeks. For some reason I can't post from my phone and haven't been able to use my laptop. It is so fristrating being able to read but not contribute in any way. And of course, I have no forgotten all I was going to write.
I hope the pain is under control, Val and Dawn. Sorry to hear about your neck, Birgit. Hopefully you will get some bone-strengthening meds soon.
Anyway, I feel that over the last couple of weeks I have been fast-tracked through several stages of treatment. I was having 10 radiation zaps on T12 (starting only 6 days after my diagnosis). My skin was coping really well and the pain was going from hy pelvis and ribs. But I was getting pains down both legs. I was realitevly unstressed by the pain to start with, thinking that both legs meant that it wasn't bone-related and just a side-effect from the treatment and maybe due to me holding my back strangely. My ability to walk got steadily worse though.
On the day of my last rads appt (just over 2 weeks ago) I was due a review with my onc, to discuss changing from Tamoxifen to Letrazole, results of my ct scan etc. Well, he hardly sat down before he said that the orthopaedic surgeon wanted my outpatient's appt (planned for the next day) to be brought forward to right now, I would probably be admitted and ahve any scans etc as an inpatient. So by that afternoon, I had an MRI and 2 days later (2 weeks ago today) I was having surgery on my back! And of course trying to get a husband to pack a bag of things for me to have in hospital.
Basically, the rads worked so well at reducing the tumour that my vertebra softened and compressed completely and was putting alot of pressure on my spinal cord. On the MRI, the vertebra is barely thicker than a disc. Both Phil and I failed to identify it as a bone! So, now I have 2 rods linking 4 vertebrae together and the surgeon removed alot of the affected bone to reduce the pressure. I am also about an inch shorter.
Coming round from the surgery, while my back hurt, my legs were pain free and I could feel my toes (and yes, I did check them). I came out of hospital last Tuesday (10 days ago), had my clips taken out on Wednesday and then a followup with the surgeon yesterday. He is very pleased with my progress. I am walking round the house almost like normal, but can't walk as far or stand for as long as I would normally. I am signed off work until at least 1st January and then need to work out a plan for if I want to go back to work.
I have an appt wth the onc bookked for 13th December. The MRI revealed that T2 is also affected. The surgeon seemed confident that treatment wouldn't end so dramatically with that, as it gets more support from my ribs, but so far I am not sure what the plan is for that. The surgen doesn't want me having any treatment for a few weeks, to give time for the surgery site to heal.

golightly
Member

Re: Bone mets - please join in

I've just come back from sunny feurtaventura......my hip feels so much better and my back....it's genuinely amazing.....also switched off my dooms gloomy head........need sunny holidays every few months prescribed for all of us.....that would help all of us boney ladies! Hope this weekend is good for you all, and something nice happens for each and every one of you xxx

Birgit
Member

Re: Bone mets - please join in

Val and Dawn, hope you can get your pain sorted out - sounds horrendous.

Like a lot of the ladies on here, I don't post that much, but I do come and have a read when I can. Been feeling very low lately, although the latest CT scan showed no further spread. But they have e now confirmed that my main bone mets are in the neck, hence my headaches and 'creeky' neck. I have further mets lower in the spine and also hip and ribs and the broken rib has not healed very well, so there is some residual pain left from there. But I must say that I have been looked after very well, and I never have to wait more than a few days for any scans/appointments. The Denosumab situation is still not resolved, and I have not had any bone strengthening drugs since June, so they need to get this sorted asap.

Do take care everyone.

scottishlass
Member

Re: Bone mets - please join in

Amanda Jane, I have had to change my hormone tabet many times. First tamoxifen which didn't work for me, then Arimidex, then Aromasin and lastly Femara. Not that the drugs failed to work but my Oncologist likes to fool the cancer! I have been on these hormone blocking tablets since 1999. So it does not mean beacuse you are changing that it is a bad thing. There are lots of different treatments out there. I have been on bone strengthening treatments since 1999 too, in various forms. Do not fret, there is lots of things out there to help keep things ticking over....I should know! Hugs Val

AmandaJayne
Member

Re: Bone mets - please join in

Thanks ladies, feel a little better after reading that.
big hugs xxx

AmandaJayne
Member

Re: Bone mets - please join in

Thanks ladies, feel a little better after reading that.
big hugs xxx

Lisalauren
Member

Re: Bone mets - please join in

Vercors
I believe it covers worldwide. Will add it to the thread you sent.
All the best
belinda
Member

Re: Bone mets - please join in

Hi, I was diagnosed, from the very beginning, with bone mets in 2003. I had approx 18 months of Tamoxifen, just over 3 and a half years with Arimidex and was then switched to Aromasin which did not work at all. In 2008 I was started on Xeloda and stayed on the pills until I had a chemo break for 4 months this summer. I have just re-started Xeloda and after just one cycle it is showing as working for me again. Hope this helps...PS I feel far better on Xeloda than I ever felt on Arimidex.
golightly
Member

Re: Bone mets - please join in

Hi everyone. Hope everyone doing ok and val and dawn...sorry you are having to cope with more worries and pain. On the work issue....I retired really young, but that was right for me....I admire you for sticking to your guns....There is such ignorance about our specific needs....but we are very much here and full of life to contribute .

broomsticklady
Member

Re: Bone mets - please join in

Hi Amanda Jayne - sorry you've got progression - it's not easy to deal with I know. Like you I'm what my onc describes as #multiple mets in multiple places', and like you hormones have failed me. I started on arimidex after primary dx in 2009, which on sec dx in Aug 11 was changed to aromasin. I took this til Jan 12, but I reacted really badly to it, and it didn't hold my mets either, so tamoxifen was next - if you react badly to aromasin it's highly likely you won't tolerate letrozole either apparently, and it was so bad I'm reluctant to try. Scan in aug 12 showed more progression so I started Xeloda / capecitebine / peachy pills chemo. Like you I was pretty low as this effectively made me triple negative as far as I can tell.
The bright side I will offer is a) there's a good thread worth reading on xeloda with experiences, and b) for me, halfway thru cycle 4, I feel better than I have for about a year and seemingly have no side effects at all having got the dose right! So don't despair - it's not great failing on hormones - and you've had some which aren't NICE recommended now for cost reasons like Faslodex but it's by far from the end of the world I thought it was.
Greetings all other boney ones out there! And Val - I so hope you transfused OK! and Dawn - equally hope your stab still helps the pain - tho its frustrating in some ways if it was as 'easy' as that to fix.
Nina

AmandaJayne
Member

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Hi again ladies.
wonder if anybody can give some hope, have extensive mets and been on zometa and letrozole since dx dec 2011 all was going well and tumour markers started to rise in august had a pet scan and showed progression to the ribs and spine so was put on faslodex in sept, went back yesterday and markers are now back up and onc said he will wait until end of dec and then try last hormone drug Afinitor. If that does not work then will have to go on to exloda help am feeling at a loss of the letrozole stopping to work after only 5 months after it started so well.
any comments please.
xxxx

vercors
Member

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LisaLauren,
Thanks for the tip, I am a frequent Eurostar user and never thought of investigating their insurance.
Does it only cover the train journey or also the holiday itselft?
It might be worth adding it to the travel insurance thread:
http://www.breastcancercare.org.uk/community/forums/travel-insurance-30
Val,
I hope the blood transfusion gives you some energy back.

chrisp1e
Member

Re: Bone mets - please join in

Hi All.
I don't post very often but like to read all the posts now and again to see how everyone is doing.
Val - good luck with your treatment. One of the ladies who was having chemo at the same time as myself was having weekly chemo. I think it was Taxol. She looked great and didn't seem to be going thro the same SEs as the rest of us. Hope it works for you.
dawn - hope the injection works for you and you start to get relief from your pain.
I think I've got another lump in my neck. Only discovered it yesterday. Phoned BCN and she has arranged a quick appointment for me to see the onc tomorrow. Hoping it's only scar tissue as it's near the area where I had a lumpectomy earlier in the year. What next?
Take care everyone and keep safe. Hugs to all.
Christine xxx

Lisalauren
Member

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Thought I would share this with all you ladies out there looking for reasonable travel insurance. Euro tunnel do their own insurance and if you have a letter from your doctor that you are fit to travel they do not charge you a premium on top of your standard quote.
Best wishes to you all x
AmandaJayne
Member

Re: Bone mets - please join in

Thanks Belinda.

belinda
Member

Re: Bone mets - please join in

All fingers crossed you are still feeling the benefits of the injection Dawn.. x

Amanda, somewhere here, I'm sure I have seen a thread on Everolimus..if I can find it I'll bump it up.
Update, it's in the Secondaries treatments and medical issues forum..x
AmandaJayne
Member

Re: Bone mets - please join in

Hi ladies,
hope you are all not in pain, and everybody is coping.
please can anybody tell me if they have been on or know of Afinitor/Everolimus and if and how you are doing on this?
hugs to all.
Amanda

lucinda
Member

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Val lovely to see you posting again,I really hope new treatment works for you.Like other bony ladies on this thread I look in but not always up to posting.Sounds really cosy with the curtains closed and candles burning.I had to go to a Macmillan meeting today,it was really horrible weather and it was a releif to get home.Was starving when i got in so we had omelettes made from the free range eggs I got from the local farm-delicious and had to have some crusty bread OH got from the local bakery this morning.hope they sort your transfusion soon.
Dawn such beautiful babies they seem to be coming on so well after their shaky start, my first grandchild is due jan 3rd and I am looking forward to it so much.

Lxx

broomsticklady
Member

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Definitely recommend a pain man if oxycodone isn't reacting well with you - I had similar problems and he transitioned my to hydromorphine which is great!! The onc had just shrugged her shoulders basically when I said oxycodone was knocking me out.
N

Itiswell
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Re: Bone mets - please join in

many thanks nina, looks like radiation is certainly a way to go esp if it'll target the hip area where the pain is. Will definately be discussing with my dr when next I see him. I do have some pain relief at home but i just dont like gulping all the meds all the time, oxycodone makes me wozzy sometimes! I hope the rads will sort this out for me once and 4 all.
any additional insights and comments will be appreciated too.

Itiswell

broomsticklady
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Re: Bone mets - please join in

Sorry you're progressing bone wise itiswell - but good news on the visceral front - concentrate on that! I had really bad pain from my mets in my lower vertebrae and hip and benefited greatly from rads. First zap was 4 days on 6 vertebrae, which knackered me for a few weeks after, but did the trick with the pain - it also shrunk the mets a lot - what was solid black on the bone scan is now much greyer. 2nd zap was just 1 to my hip and lowest spine - I'm think I'm now radded all the way from base to mid thorax of my spine - this time I had none of the tiredness (making me wonder whether the problem was 4 days rather than 1) but all of the pain relief. I'm now virtually off morphine, apart from the odd break thru - I take slow release ibuprofen max dose and 6 paracetamol daily as preventitive, and if I know I'm going to be active I also take 2mg hydromorphine just in case.
so I'd definitely suggest rads if they don't. Also worth getting a referral to a pain specialist - my Macmillan nurse organised mine with the GP - it does mean going to hospice which is bit scary but once with a pain man they don't 'write you off' their books - I can call him whenever I like, as frequently or infrequently as I want, and he's the nicest medic I see by far - has time for youto ramble!
Good luck and keep us updated
Nina

Itiswell
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Re: Bone mets - please join in

Hi everyone.
I bet all you beautiful and God sent ladies are all fine. I last posted weeks ago before my double mastectomy and glad i'm all healed around cut site.
Just need your advise again as this is all still new to me at 30. I had a ct scan and bone scan last week and saw my oncologist yest. He noted that tho ct scan looked ok as nothing was seen on the vital organs, the bone scan showed things are worse tho. I dont quite understand it. Though i feel better all over compared to before, apart from the hip area hence leg is painful when lifting whilst sitting. i still wasnt expecting a worse off scan. I was initially treated with taxol/chemo and have been having monthly zometa as well as tamoxifen.
Is there anything I should be doing or taking to sort this pain in the leg/hip and to have a better bone scan.
Please help, any feedback will be appreciated.

lots of love,
Itiswell

myfanwy18
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Re: Bone mets - please join in

Hello everyone,
Val, I had a summer on Taxol, every three weeks though. To be honest it really wasn't too bad, minimal side effects and not to tired at all so hopefully you'll be the same. It did work to according to the scan. I have my three monthly scan on Friday to see how Arimidex is working and blood transfusion tomorrow morning as my Hb count dropped last month which is a worry.
Dawn, hope the pain is better and remains that way.
Best wishes to all the other boney ladies.
Love Claire

lizcat
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Re: Bone mets - please join in

Val - I'll give you a call today xx

Dawn - hope you have had a good night's sleep by the the you read this. Am glad the doc was able to try something that may have helped and you are back home. Fingers crossed it will be long lasting and a solution to your pain - it's a terrible thing. My ache/pain drives me nuts and it is nothing compared to what yours must be. I find the not being able to get comfortable the worst.

Hope everyone is managing to avoid the horrendous flooding. I live right by the sea and we always have lots of rain, living in the north, but it seems strange that it's all these places by rivers, miles inland, are affected. Such is the force of nature....

Keep warm and as well as poss xx

dawnhc
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Thanks Angelfalls & Lucinda. I am wanting to type a lot more of what happened in hospital but am just too knackered and should go to bed. Just want to say to Val I am appalled that you have been 'harrassed' by someone pming you for complaining - did you actually post saying you had done that - I suppose it must have been or how could anyone have known. Even then I'm sorry but I don't think that is on. I must confess I longed to join in with the discussion but just felt I couldnt handle the sort of comments that were being made had they been directed at me - it is just too upsetting really. Oh dear now I am in full flow I will keep going. My departure from hospital today was odd. They had sorted out my drugs and discharge letter. I was waiting for Pete to come and pick me up when 2 more doctors came round. I knew one was a junior doc but the other was her senior. He came and asked how I was and I said "really no better than when I came in". I then thought I would throw the question at him that I had tried with others and got nowhere. "Is it possible that there is more than one pain issue - something else as well as the pain caused by the nerve damage". So he asked me to show him where the pain was, proceeded to examine me. I warned him some of the bits were incredibly painful to touch - he soon found that out. He then said it is possible that you have an inflamed bursa - would I like him to try a steroid injection. No harm would be done but if it was that then the injection could work. He said he would do it there and then - and this is our NHS - let's not knock it too hard. I think (whispers it) that it has worked. If I wake up tomorrow without that additional, unbearable pain I iwll be one happy bunny. I have learned to tolerate pain up to a certain level and limiting the pain meds but recently have had to up them and the hospital on top of that have added in even more leaving me on 225mcg fentanyl patches + 6x600mcg lozenges, 45mg oxynorm when I want!! (about 2-3hrs), pregabalin a.m. 150mg/p.m.300mg + regular paracetamol... everyone remarking on the very high dose and it wasn't touching the pain! It is all quite scary and with the Marsden's help I hope we can find a solution - I dont want to be in that much pain again. Any of you bony ladies with nerve involvement will understand this.

The MRI scan I had at my local A&E hospital yesterday, and they have given me a copy of the report and some of the snippets on that are scary. Things like there are 2 vertebrae where metastic disease has completely taken over...etc. The Marsden team are checking the disc of that scan along with the last one they took to see if there are any more changes.

Now I really must go to bed. Nite girls xxxxxx

Angelfalls
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Re: Bone mets - please join in

Good to see you back in business, Dawn! xx

Val - good luck with the weekly Taxol. I hope it'll work well for you for a long time and that you'll find the SEs "do-able". I finished 6 months of Taxol at the end of August and it was quite manageable considering...! It is a bit of a pain to have to go in each week, but at least that way the SEs are more gentle and you soon get into a routine. If you haven't seen it already, you might find the following thread useful, even though most of us have finished and moved on to new treatments now:

http://www.breastcancercare.org.uk/community/forums/secondaries-treatments-medical-issues/piclataxol-pixies-come-join

Hope it helps.

kerij
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Re: Bone mets - please join in

hi just to ask a wee question i dont like phoning my bn feel like she treats me like im wasting her time i had a wle in aug had grade 2 stage 2 idc nodes clear but before finding the lump in my breast i had a small pea sized lump under the skin at the top of my thigh now its a kind of oblong lump if that makes sense am i just being paranoid cause i thought the surgen said it could only spread through the nodes and they where clear id just be grealy gratefull for any advice thanks xxx
scottishlass
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Thanks Vercors, Suzanne and Belinda. Back home now. Now to sit by the phones and wait to hear when they can fir me in for bloodtransfusion and also Taxol. Glad I know what the plan is for me. It is still the not knowing that I do not like. Having home made lasagne for tea that I cooked ( made 2 at the time. Ate one and froze one). very handy on a day like this especialy when it is so cold outside. Got all the curtains closed, lots and lots of light on ( my husband has a thing about lotsof different light!) and even got candles burning on the coffe table,. Lovely way to relax though. Thank you for you kind words. Good to know someone is listening and spurning me on! Love to you all, Val

belinda
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Good Luck with the new treatment Val. Hope it works well but is kind with any side effects..x
Ramsfan55
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Re: Bone mets - please join in

Hey Val, just to say that I hope the new regime works for you. Please let us know how things progress. Hope you and your family manage a reasonably happy Christmas despite it being the first without your Mum. Lots of hugs and prayers x
suzanne

vercors
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Re: Bone mets - please join in

Hi Val,
I have never posted much on this thread, but read every single posts. Over the past year I have learnt a lot and feel more confident talking to my onc thanks to you ladies.
I am sorry to hear that you are struggling; you have made a decision which I am sure is the good one. I hope your blood transfusion goes smoothly and that Taxol works for you. Hearing from other ladies, side effects do not seem to be too bad. But what do I know, I have been lucky so far, Herceptin, Letrozole and Zoladex are keeping me stable.
Hug to all.

scottishlass
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Re: Bone mets - please join in

Hello everyone,
Just wondered how Dawn was doing since her last message. Anyone heard?
I am off to the hospital. My HB low so I am getting crossed matching done today and they will fit me in when they can later in the week. I am going this afternoon anyway for my Zolidronate. Had an awkward morning trying to find out things about my treatment. Have eventually got it sorted out but the ward did not know about my recent discussions with my Oncologist's secretary.
I am NOT now going on to the higher dose of Capecitabine. My choice. Rethought (don't think that is a word but it fits!) things about Capecitabine as my TMs ( Tumour Markers) are rising still. So have agreed to have Taxol now instead of in the New Year. Talked things over with my Oncologist today who is happy with my decision. Reading about others on here and other sources including FB made me rethink things and want now to get going with Taxol. I should have been getting the increased Capecitabine today and that is what the ward thought was happening today as they had not had an update about my Discussions to have Taxol instead. But now the right hand knows what the left hand is doing! I have to ask the Dr on duty to complete a consent form for my new treatment but I do not know when the ward can fit me in for my weekly doses of Taxol. Not looking forward to haveing to go everyweek to the hospital for 4/5 months.
I have not told my Dad or daughters about this change as I was going to enjoy Christmas without mentioning all this. But I may have to let them know now. Will wait and see how the drug affects me. I have not been posting on the site so much or spending as much time as I used to do. But I always look in on this thread most days to see how my friends are doing.
I recently requested the closing of a thread on here that I though was becoming repetative and a bit nasty. But I have upset someone who regurlay posts on here ( she sent me a PM) as she was disappointed that I and others had asked for it to be closed. I have apologised for upsetting her but I still would do the same again. But I see she is no longer posting and for that I am sad as her posts were very informative and knowledgable. But she may be reading here and perhaps she will post again and let us kjnow how she s doing.
Love to all bone mets people. My energy levels are low so although I am not posting as much I am still thinking about you all . Hugs Val