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Bone mets - please join in

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Re: Bone mets - please join in

Hi all, am now to start 6 months of iv chemo called Epirubicin and cyclophosphamide, anyone tried this?

It's like being a cat with 9 lives isn't it, i have not many left now, damn it. i don't know how to feel now, i just feel nothing.

love to all

Ramade x

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Hi Paula, sorry you've had to stop Cape when you seemed to be getting on with it quite well, as these things go! I hope they find something else that works for you and isn't too unkind.

No, I don't know how big my nodes are -- I think I'll add that to the list of questions for the onc! He did say "not very big," but at that time I had no idea what was or wasn't big, so I didn't ask for details. What a lot of strange knowledge we acquire along the way, don't we!

All the best,

Tatyana

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Hi Tatyana, yes I have mets in several lymph nodes (plus sternum, collarbone, spine lungs and liver) inc the mediastinal nodes. Was on Cape for 20 months just had to stop as 2mm progression in 2 mediastinal nodes. They haven't really caused me any issues until v recently when I've had a bit of tightness in the centre of my chest. Do you know how big yours are? My largest is 9mm. 

The Cape caused me practically no se apart from a bit of fatigue and I'll miss it bizarrely 🙂

Unlike you I'm Er+ so going back on the hormonals soon.

Best of luck

Paula

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Hi Tatyana

It was after 4 treatments that my neutrifils fell to 1.4 that cap was reduced. Yes I do agree regarding energy levels are depleted since last year when I was just on combo Everolimus/exemestan levels were good.

Linda

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Dragoncarine, glad to hear that magic word "stable"! I haven't had a bone scan so don't know if there's anything going on beyond the mediastinals. I only know that they are inoperable because they're too tangled up with other stuff. I have a whole list of questions for the oncologist when I see him next week, last time I was too shellshocked to know what questions to ask!

Linda, I'm on 1800 twice a day, it seems to be manageable so far, tho it's early days and we'll have to see what the blood tests say next week, I suppose there could be things going on that I'm not aware of. But at the moment I can do more or less what I want, so I'll take that! Not as much stamina as I had a year ago, but that's hardly surprising.
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y ct scan report mentions mediastinal nodes too. They are the lymph nodes that are in the chest area. In my case my mets are in my right lung, sternum, ribs, shoulder blade, skull & left upper arm, one skin spot and several lymph nodes in various areas. One place I know is clear is my breast funnily enough as repeated mammograms (at my request due to pain) kept coming back clear and reassuring me that cancer had not returned (turns out pain was due to bone mets in sternum & ribs behind the breast...).

My primary cancer was in 2005 and secondary diagnosis was last year. Mine is ER+ so I'm on Tamoxifen & Goserelin (with Denosumab for bone strengtehning too). Each scan since first one last May has shown stable bone mets and improvements in lungs. From memory, lymph nodes stable too - can't check at moment.

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Re: Bone mets - please join in

Morning Tatyana

Welcome to the bone mets thread. Sorry not able to help mediastinal nodes as not heard of them. Where abouts are they in body? being me I would google it.

Pleased cap tablets are going ok with not many side effects. What strength of tablets are you on.I was originally on 1800mg twice day. Reduced dose to 1500mg twice a day which I have been better. Now on course 7.

Hope someone comes along shortly with advice.

Linda

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Hi Tatyana

Yes of course you can join us. I'm sorry that you need to but welcome. It's good to hear that your s/es are not too bad and we hope that cape is effective and for a long time.

 

Well you learn something every day and what I've learnt today is where the mediastinal nodes are. But it is quite a steep learning curve when you are diagnosed with mets, too much to take in sometimes.

 

Keep in touch and let us know how you are getting on.

Hugs Bon xx

 

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Hi ladies, can I join you? No bone mets (yet!) (as far as I know!!), but this seems like a lovely friendly group and I'm hoping somebody may be able to share their experience.

My first cancer was 15 years ago, ER+, lumpectomy, axillary clearance, radiation, zoladex, tamoxifen, letrozole for a total of 10 years, then all was well.

My second cancer is apparently unrelated but in the same breast, diagnosed May 2017, triple negative inflammatory BC, at the time of diagnosis there appeared to be some involvement of internal mammary nodes but nothing beyond that. I had FEC-T, then mastectomy in Nov 2017. Couldn't have standard rads because of previous rads to same breast. A scan in January showed mets to mediastinal lymph nodes.

 

So now I'm on capecitabine, just coming to the end of my first two weeks of tablets, negligible SEs so far (isn't it great when, just for once, not all your worst fears come true!). Onc says I'll stay on this for as long as it's working and as long as I can tolerate it; they'll do a scan after four cycles to see whether it's working. 

 

So I'm trying to get my brain around the whole new world of secondary BC. I've found lots of helpful tips on the Xeloda/capecitabine thread. But I do have one question:

 

Does anyone, anywhere, have experience of mets to the mediastinal nodes??! Most people have never even heard of them (that includes me, until a few weeks ago). I'd just love to meet someone who's been there, done that, got the lopsided t-shirt.

 

Meanwhile, best of luck to anyone currently having treatment, and a special hug to Scanxiety sufferers!

 

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Hi Renee

Hope it's good news on Friday. Hugs while you are waiting.

love Bon

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Good luck on Friday Reneexxx

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Afternoon Renee

Good luck with your scan results on Friday. Hope pains you are now suffering turn out to be nothing to worry.

Take care

Linda

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Hi FF,

THANKS AGAIN FOR MAILING I AM OK ,JUST ALL HET UP AS HAVE MY SCAN RESULTS FRIDAY AND I AM SURE IT IS NOT GOOD NEWS AS I HAVE MORE PAIN AND JUST HAVE A GUT FEELING ,TABLETS NOT WORKING ,BUT WILL LET ALL YOU LOVELY LADIES KNOW AFTER I HAVE SEEN ONCOLOGIST.

THANKS AGAIN

RENEEXX

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Hi Carolyn

Hope your scan results come through soon and they show no progression. Maybe the bones are healing which is causing the pain.

Linda

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Well Carolyn sweetie, I have been missing youxx

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Hello trudy

Thanks for asking ..I'm fine ..waiting for scan results as I have more hip pain than usual.
Just took a step back from the forum for a little while to give you all some peace and quiet from my usual ramblings !!

Hugs xxx
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Carolyn are you okay ? You've been very quiet on here, and we are missing you. 

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Renee, Checking up on you too. Hoping you are feeling a bit better. Hugs, FF

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Renee, how is the cellulitis going sweetie? It’s such a pain, isn’t it?

 

hope it’s improving!

 

Moijanx 

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I posted about new research released by Cancer Research UK, nothing more.

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Well said, Kate.however, we have known for yonks,,,well ever since my diagnosis in 2001, that sugar feeds cancer...and still chemo units have bowl of sweets on each table . There’s been numerous anti smoking campaigns, but people still smoke....I once asked a group of lung cancer patients standing outside the hospital why they were smoking...they said...well there’s nothing else to do, is there? 

 

‘’It’s very strange, although I’m sure most of us ladies, who are maybe riddled with mets, all know to a point about avoiding processed food and hydrogenous fats etc, many of us carry on because it’s either easier, or because we enjoy them .......it’s very hard when you are in that lonely scary place wondering what drug next, if this one fails......not to comfort eat sometimes. Oh and a lot of us might not be able to afford to eat wisely...

 

Moijanxx

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I was simply stating what the report said, not my opinion. Don’t think I said it would be food! Think everyone is fully aware of the pressures the nhs is under, surely another reason for preventative advice/treatment. If advice was more direct and not conflicting, as is frequently the case, more may follow it as sometimes people are unsure what advice to take, which is understandable.

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Hi Kate,

 

ii sincerely hope you . Are right about the nhs...as in chemo suites there are still bowls of boiled sweets. I worked in the nhs for most of my life, Latterly in the public health research  department, and I would be very surprised if anything like that is put quickly into place and as for prescribing, it won’t be food on prescription, likely  just advice.....which many folks don’t seem to listen to, sadly.

 

.the nhs is struggling just to run hospitals at present...altho I do see there’s healthier choices in the dining rooms/cafeteriasxx

 

Chris is pretty marvellous really isn’t he? I spent three hours on ft with him a few weeks back - lovely and very clever man.

 

Moijanxx

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Hi again Ramade, I agree about Chris Woollams, have been singing his praises for a long time after going to one of his talks and then emailing him about my treatment, but as said the difference about this is the fact the nhs may be prescribing a diet or trialling something new. I too would recommend his books and website for information, also if you sign up they send out newsletters with any new info.Take care xx

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Hi Ramada, sorry to hear this. I do read canceractive website which has all the lates research on there and Chris Woollams. has been saying this for a long time.

 

thereare two books which I recently got...the rainbow diet and heal you body heal your gut

 

Both make excellent sense but go on there and have a read Chris recommended Me to eat a cup and a half of ordinary button mushRooms a day, then here came out  this, in the paper last week.xx

 

FD7B40C7-3990-41D1-AD52-C89CAD7D274A.jpeg

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Sorry to hear that Ramade. Me too, sounded very interesting research and hopefully something that shouldn’t be too expensive to produce, although I’m definitely not sure about that! After working in the nhs for so long, and in a very research led department, this is the first time I’ve ever read something like this, in the sense of admitting diet could be prescribed alongside treatment. Hope things stabilise for you, Kxx

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Hi all,yes i thought this was interesting aswell. Apparently they can make a pill that would take all of this Aspergine out of your body and let you eat normally. i would gladly go on a trial if this was offered as i'm going downhill fast in my battle against mets.

love to all

Ramade xx

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Hi Pippin, I know what you mean but if you enjoy eating them then reducing how often is probably the answer. It surprised me to read how it was proposing the nhs prescribed a diet alongside chemo/medication, I’m always reading this kind of research and have never before seen anything like that in relation to the treatment of cancer within the nhs! Thought it was interesting how it affected mets not primaries, hopefully more research will be done. Sorry I can’t help with your tights dilemma but please let me know if you find a solution! Best, Kxx

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Hi Kate

Yes I saw that too. I love asparagus, but it's in lots of other things too; chicken, sea food etc so there's not a lot left to eat! What with giving up soya I struggle to buy a loaf of bread, and then there's parabens. So it's hard to unravel what's best to do, in the meantime I have gone back to chocolate 'cos death by chocolate has a certailn ring to it.

Hi everyone else and Kate

I have a daft problem and wonder if anyone has struggled with this and found a simple solution; I cannot get both feet into tights, one foot in each foot if you sea what I mean (I'm not trying to emulate a mermaid, though I'm even less agile at this task than any see creature!). A while ago I bought something from the shop that sells all many of aids, but I put it somewhere, can't find it and am too mean and stubborn to buy another. I have tried standing, sitting, sitting on the loo, lying on the bed waving my feet in the air and even lying down close to a wall with my feet against the wall so they can't go anywhere but all to no avail. Enough of this nonsense, there must be an easier way!

Pippin 

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Interesting research today from Cancer Research UK Cambridge Institute regarding the amino acid Asparagine and it’s effect on metastasis. Looks like the medical profession is finally accepting diet can play an important part in the treatment of this disease! 

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HI TO ALL YOU LOVELY LADIES 

YOUR WORDS OF KINDNESS,, I  REALLY APPRECIATE AND HOPE YOU ARE ALL KEEPING AS WELL AS POSSIBLE SO THANKS VERY MUCH.

LOVE AND HUGS

RENEEX

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Hi Renee

I'm sorry you are having the added aggravation of celluitis, having to swallow mountains of pills and the side effects they bring. I hope they do their job very soon. Hope someone is there to look after you and care for you.

Much love Bon xx

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Hi Renee,

 

what awful luck..cellulitis is a real pain, isn’t it?  I thought I’d cracked it a while ago, hopefully you won’t get any recurrence of it as I do from time to time.

 

hugs

Moijanxx

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Renee, I'm sorry that you are in a whirlwind of problems. You have every right to be down. You keep jumping from one frying pan to the other. Do you have friends and family helping you? I know you are very independent, but sometimes we need a hand. It's difficult accepting the fact we need help, plus then allowing it. I've had to accept some help hrough my back ordeal. I hated it, but I needed it to get better. Antibiotics can be rough on our systems, especially the strong ones. Not to mention having to swallow all of them. I'm not good at swallowing pills. That would be a night mare for me. Spring is around the corner, hopefully we can all get outside and at least enjoy the beauty of it and some sunshine on our faces. It always lifts my spirits. Take care! I hope those antibiotics get you fixed up, quickly. Hugs! FF

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Afternoon Renee

So sorry to hear you have not been well. Hope you start to feel better soon.

Linda

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Hi FF,

I HAVE NOT BEEN POSTING FOR A WHILE AS HAVE NOT BEEN UP TO IT,NOTHING TO DO WITH MY CANCER ,I HAD MY FLU JAB ,THEN MANAGED TO GET A SEVERE BUG OF SOME SORT ,IT KNOCKED ME FOR SIX ,THEN MY PHYSIO NOTICED MY RED SWOLLEN LEG SO WOULD NOT TOUCH ME UNTIL I SAW A DOCTOR ,ENDED UP HAVING DOPLER TESTS AND LEG ULTRA SOUND,LOOKING FOR D V T,NOTHING FOUND WHICH WAS GREAT BUT NOW THEY THINK I HAVE CELLULITIS SO I AM ON ANTIBIOTICS,AND NOW TAKING 17TABLETS ON A MORNING,PLUS 6 EVERY MEAL TIME ,AND FEEL TOTALLY DRAINED,AND AFRAID VERY DOWN WITHIN MY SELF ,JUST WISH THE ANTIBIOTICS WERE FINISHED AS HORRIBLE SIDE EFFECTS.

 

WE HAVE NOT HAD ANY SEVERE BAD WEATHER ,MAINLY HIGH WINDS BUT THEY DO LOTS OF DAMAGE .,AND TEMPERATURE VERY COLD AND BITTER.

 

HOPE YOU MANAGE THE NEW MEDS AND DONT SUFFER TOO MANY SIDE EFFECTS,ALSO HOPE YOU ARE  EJOYING YOUR GRANDCHILD AS THEY ARE NOT BABIES VERY LONG THESE DAYS.

 

THANK YOU EVER SO MUCH FOR YOUR THOUGHTS OF ME .

LOVE RENEEXX

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Oh, and I’m hoping not to tempt fate, but no side effects from zometa during the 4 years I have been on it.xx
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Hi scmooley and riversideawn, yes there are loads of bugs about...I have for years now used vicks first defence, which seems to protect me when I use it. Just squirt it into the outer walls of your nose..not straight up. And the stuff clots any bugs that get in...the nose tends to be where these things grow before you feel ill.

 

anyway, best of luck, hope the Ibrance does it’s magicxx

 

Hugs, Moijan

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Hi riversidedawn, your side effects sound like what I had after my zometa. I'm on day 3 of Ibrance today and no side effects yet. Interestingly I was due to have my 2nd Zometa next Tuesday but it has been put back three weeks so that it can conincide with my Ibrance cycle in the future. I did wonder if I got fluey again next week, how would I know whether it was the Zometa again or the Ibrance. At least I have a clear run now on the Ibrance so should be able to spot any side effects (hopefully none 🙂 ) There's so many colds and horrible bugs around as well at the moment it's hard to know what's going on!

 

Have a lovely weekend ladies, it'll soon be Spring Woman Very Happy 

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Hi ff. nice to see you posting, don't worry Spring will come,usually does. Have been on monthly denosumab for 4 years and never felt and se's. my onc said once a year is enough but i said no don't change anything because i haven't broken and bones while i've been on it. She said ok that's fine. Also it doesn't go in a vein thank goodness because my veins have said no more and won't co operate at all any more. Giving bloods is the worst thing. Hope you get on well with it.

How's that little granddaughter of yours?

Hugs

Ramade

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Renee, Haven't chatted in a bit. Hope you are doing OK. You always amaze me with your strength. How are your treatments going? How hasyour winter been in your area? We have had a few small snows nothing major, but bitter cold for weeks. The little bit of snow would stay bc not warm enough to melt. Another storm coming tonight. I'm a cry baby, I want Spring!

 

I start bone strengthener denosumbab (Prolia) in about a month. It is given every 6 months. Hopefully it will help prevent another fracture. I've always been afraid  of taking bone strengthers. Scared of getting the side effect ONJ. 

 

Take care of you! FF

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hi Maria,you are definitely at a good hospital, they may want to do an mri now as it shows the bones more clearly.no need to worry if it's only one spot. if it is close to the spinal cord they may do radiotherapy, i know all this because i've just been down this route. i have mets all the way down the spine and breast bone and hips.

thinking of you

hugs ramade

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Hi other Ibrance ladies!

I take the last one of cycle one tonight and looking forward to my week off. I spent the first 4 days in bed with "flu", a couple of very tired days, then 3-4 days later thumping headache, sore throat and stuffy nose!

I did have my first zometa infusion on same day I started ibrance so no idea which caused what! I've got my pre zometa blood test today but also being Day 21 of ibrance I wonder what it'll show?

I've then got 5 ibrance free days before next zometa and zoladex on Monday. Such a confusing cocktail. Interesting to see what next month holds.
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Thanks Bandit, that's really reassuring to know Heart I'm glad that you're managing to carry on as normal (Practically) that's what i'm hoping for too. (fingers crossed)

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Hi to everyone on Palbociclib and Letrozole.  I have just completed my 17th cycle on these drugs.  I have extensive bone mets so also have monthly Denosumab.  I have to say that I have found this very doable.  Except for the hospital appoinments (many as I am currently still on a trial for these meds in the U.K.) my life has not changed at all.  I also have a busy social life and lots of animals.  First few months I was a little tired at the end of the cyclebut this is not really the case now..  My White and Red blood counts have been low the whole time but I have not even had a cold.  My hair has thinned slightly but I am lucky that I had thick hair to begin with.  I started on 125mg of Palbo but recently requested a drop to 100mg when I found out that this is really the ideal strength to be on.  Good luck everyone and I hope these drugs are as kind to you as they have been to me.

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Sorry you're joing us as well Deedee. I'm starting my ibrance next week (can't spell the other word) we'll be able to compare s/e's although of course we won't have any  Woman LOL

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Sorry to hear you're going through the same Riverside Dawn 😞  I've got my first Ibrance on Tuesday and my next Zometa the following Tuesday. It would be nice if they could tie the two up together as i'm having to get two blood tests done!! A friend of a friend is on Ibrance and apparently the only s/e she gets is tiredness. (fingers crossed) My friend also confirms that she has no s/e's from Zometa so maybe we're just unlucky? although i'm still hoping it was a one off. Hope you have a lovely weekend xx

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Hi everyone,

was diagnosed with secondary bc mets to the bones in neck and ribs just before Christmas. Lovely present eh. Beginning of January changed from tamoxifen to letrazole got denosumab injections and calcium tabs to take daily. Also got one off radiotherapy  to neck for pain as tumour has made big hole in neck apparently. 

 

Will be starting palbociclib on 6th February.  Anyone else on this if so, how was the SE’s ?

 

Thanks Doreen xx

 

 

 

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Hi schmooley, I was diagnosed just before Christmas too - mets in vertebrae, pubic bone and sacrum. I'm 50 with 12 and 15 year olds.

I'm on zoladex injection monthly, zometa infusion monthly, letrazole and ibrance. Started this new regime 10 days ago (Wednesday) and spent Thursday to
Sunday in bed with flu symptoms plus nausea, diarrhoea, headache etc etc. Nurse reckons it was zometa which caused the SEs and hopefully will be easier next time.

I've not had any noticeable SEs from letrazole/ibrance combo. I also take venlafaxine for the flushes.