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Bone mets - please join in

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Bone mets - please join in

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty x

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Thanks for your replies Kate, Bentsen and Moijan. My husband bought a big tub of Organic Tumeric, Curcumin and Black Pepper by Nu U online. It still tastes of Tumeric but I guess it's more palatable than paste. 

 

I'll give it a go. I've read different things about fish oils and cod liver oil with glucosamine. Think I'll have to do a bit more reading and get on with it. 

 

Warmer weather may bring relief for the joints, but increase the flushes. 

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Hi Kate and Bentsen.I was taking turmeric/black pepper in milk with a little olive oil but gave me reflux.

my oncologist is fine with turmeric and with probiotics..I drink kefir daily.

 

have either of you (or anybody else?) 🤗any advice about the most palatable way to take turmeric please?  I am on Paclitaxel and would like to keep taking turmeric if possible.

 

thank you

 

Moijan

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Made me smile to see you make it for your pets, does seem to really help animals from what I’ve read. I take Krill so should have the fish oil side covered. I ran my supplements past my Oncologist and just smiled saying I don’t have a problem with you taking them. I tend to buy from the same website and they have a pharmacist so I always ask him before buying them. Out of interest do you think the gp has helped your horse and dog? x

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Hi Kate

I make tumeric paste for the horse and the dog but I am afraid I just buy Curamed curcumin capsules for me. Forgot to add I also take cod liver oil. Started that long before I was first diagnosed so dont know if it is helping. When I started Ibrance a month ago  I had to let the pharmacist know everything I was taking. She was okay with it all.  Sitting infront of the log burner listening to the wind outside and thinking might be a while before I am out riding again.xx

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Hi Benten, interesting to read your post, can I ask how you take turmeric? I’ve been on Letrozole over two years now and although it’s not too bad, I have recently noticed a bit more stiffness so will think about taking the other supplements you’ve mentioned. I’ve been adding turmeric, fresh root and ground, to a lot of my food since diagnosis but recently started making golden ‘turmeric’ paste and even though I’m not new to turmeric I do think that’s helped. Hope you can get out riding soon! Kxx

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Hi Riversidedawn

I was diagnosed in July with a bone met in my pelvis.  I am on letrozole, ibrance and denosumab injections. My hands had got a bit stiff when I had previously been taking tamoxafin.I started taking tumeric and that helped alot. Since I started on this latest concoction my fingers have got increasingly worse. I started taking glucosamine & chondrotin as well as the tumeric and have seen a vast improvement. I was having great difficulty tacking up my horse. Hands just wouldn't co-operate. Now I would have no problem if only he wasn't stuck in his stable because of the snow.x

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I was diagnosed just before Christmas. In December I had one zoladex injection and a month of exemestane. Changed in January, after scan results came through, to zometa infusion, letrazole and ibrance in addition to the zoladex.

In two months my niggling thumb arthritis has become a major problem. I can't open jars, put on socks, do up buttons etc and at work yesterday I discovered I can't even hold the phone to my ear!

I went to hand therapy today and came out with a collection of splints and supports which give some relief but make my dexterity worse.

I'm only 50 and sound like my mother! I love sewing, gardening, horse riding, yoga and going to the gym but all these things are getting increasingly difficult if not impossible.

Is there any hope or relief from this?
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Evening Ramade

I am on Cap now. Have been since October last year. Had CT scan in December had results January everything stable. Back at oncologist on 5 March will ask about next scan.

Cap has been OK. Have you been on cap yet? If not that might be your next treatment.

Not nice when you are told treatment not working but there does seem to quite a few different treatments to choose from.

Take care of yourself.

Linda

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Morning Lyndy lou, thanks for your reply. No they didn't say anything at all it's me who feels i'm running out because at the moment nothing is working and the cancer keeps spreading. Can i ask what your next treatment was after e/e. Hope you are doing well.

Ramade x

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Morning Ramade

Sorry you have to change treatment. I have not had the chemo you are going to have. I am sure one of the other ladies will be along shortly.

If you don't mind me asking were you told you were running out of options?

Linda

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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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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