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Bone mets - please join in

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Re: Bone mets - please join in

Hi dragoncarine,

 

You have so much to bear. Does a CT scan pick up bone mets? I thought only bone scans did that....

 

May I ask......how long is it since 'they' 1st. found your secondaries.

 

Do you have good family support?

 

There do appear to be quite a few long term survivors with bone mets. Although I was diagnosed with secondaries 3 years ago, I feel I've learnt very little about the true progression of this disease.

 

Many thx for answering. It makes me feel less lonely, on this journey.....

silver...xWoman Happy

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Hello Silverlining. 

Some of the posts are quite old - it is encouraging to see people on here for years. My bone mets are in my sternum, ribs, spine, shoulder, arm & skull. I also have some lymph node and lung mets. I have CT scans every 3 months but not had a second bone scan since first one May 2017. I always get the impression that oncologist isn't concerned about the bone pain - left arm for me also - got so I couldn't put a Tshirt on, had some radiotherapy which has helped a bit but pain is starting to return again now. Sometimes I get fed up with the constant pain - for me the worst at the moment is my Sternum which hurts all the time at a low level. Been trying ddifferent pain killers. I've been told I may have another bone scan soon so we can see how my skeleton is doing (lung mets are reducing in size with Tamoxifen & Goserelin).

 

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Hi finty,

 

Not sure how this thread works.....so many of you seem to have been 'here' a very long time.

 

@ finty.....have you had bone mets for 9 years? How amazing! This gives me hope.

 

Can they only find bone mets with a bone scan. My mets are in my pelvis...both sides. Every 6 months I've a CT scan but not a bone scan. I've pain 4/5 out of 10 in my left arm.....I'm never sure if its OK to ask, as they look at my CT & thats it......maybe, I'm not making sense.....

 

thanks all,

 

silverlining

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Hi Wendy
If they give you capecitabine tablets you shouldn't lose your hair. I have found it a manageable treatment because you can take the tablets at home. Main side effects have been fatigue and itchy hands and feet.
Lots more info on the capecitabene thread.
Hope it goes well
Phoebe x
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Thanks Benten and hope your tablets continue to work for a very long time. I never had primary so am in at the deep end so to speak and hormone therapy does not appear to be the answer. I will definetly use a cap Wendy x
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Hi Wendy.  I am sorry to hear the letrozole and ibrance are not working.  I am on the same treatment and don't have a clue if it is working or not as I haven't been scanned since last June. I am working fulltime and like you need everything to be as normal as possible to keep myself sane.I can't really help with any knowledge of weekly chemo but did manage to keep my hair using the cold cap when I had my primary.x

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Hello everyone hope everyone is well and thoughts are with Ladybird. I have been quiet for awhile as been backwards and forwards with scans and medication changes but basically an now on letrozole and ibrance and looks as though not working and have another set of scans on pelvis and spine and ct next week. So feeling pretty down and taking painkillers to keep pain at bay whilst I carry on working. Being normal is my sanity. My Onc says next step is tablet chemo cape or 18 weeks of chemo I day a week . Not sure what chemo all I know is I want to go on hols in June so need my hair. Has anyone else had 18 weeks of chemo. I am not scared if it does the job but feels like I heading into life of chemo . Wendy
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Thinking of you and Ladybird Chris xx
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Morning lovely ladies and thanks for your continued support.
I'm amazed how my cat Toby has hardly left my side since Ladybird left for the hospice. He really is missing her. Sadly she's too poorly to take him to see her now but the hospice has no problem with pets going.
Good luck everyone
Chris xx
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Hi Benton

Thinking of you all

We have a dog and I have to confess he is our surrogate child!

He's such a comfort to us at this time so I can really appreciate what your family are going through 

Hugs Phoebe x

 

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Benten, we love our pets and it’s not surprising as they are constant loving companions who we see every day - which is more than can be said about certain humans we all know 😉Although we have never had dogs we have had to say goodbye to a few of our lovely cats due mainly to old age and it’s never easy. Dogs I think are even a bigger part of your life as you have to be more involved with activities such as walking so their absence has a bigger impact. Look after yourself.

Nicky x

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Chris, I hope Ladybird is comfortable and you are okay.x

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Thank you girls. People say it is only a dog but you know how it feels.x

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Sorry to hear this Chris, hospices are amazing places. Keep in touch as we are all here to give support day or night.

Ramade xxxxxx

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Chris, sorry to hear your news. I hope that Ladybird continues to be comfortable. Hospice staff are amazing x
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Sorry to hear about your dog Benton. Such a sad time. They are truly part of the family x

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Hi Chris

Thinking if you and Ladybird, hoping that there is some treatment that is helping her but it’s good to know she is being well cared for and comfortable.

Take care both of you

Nicky x

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Hello Chris, very sorry to read about Ladybird but thank you for letting us know. I hope it also brings you some comfort to know she is being so well cared for. Thinking about you both, Kate x

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Hi Chris

Thank you for telling us. So glad Ladybird is comfortable and well looked after. She has been well looked after by you too. Thinking about her and you.

Bon xx

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Chris, I'm sorry to hear this about Ladybird. You have been a very loving husband trying to find information to help her. I'm glad you are pleased with her hospice care. We are hear if you ever need to chat. Big hugs to both of you. FF

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Hi ladybird 2, thank you for letting us know how your wife is, nice to hear she is comfortable. Please let her know we are thinking of her.
Take care hugs J xx
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Hello Ladybird 2, thank you for letting us know. Do feel free to drop in and chat to us anytime, I’m glad Ladybird is well looked after and comfortable. Send her our love 💖💖💖

 

Moijanxx

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Hello Ladies
Just to say my wife Ladybird has gone into local hospice after the scan showed lesion in her brain.
She is very comfortable and well looked after by dedicated staff.
Good luck everyone and thanks for your support over the months
Chris
X
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Sorry Bentenxx

 

always hard when we lose a pet.........thank you for your feedback re turmericxx

mx

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Really sorry to read about your dog Benten, so sad for you. Hey, if it’s working for you why change it anyway. I was happy adding turmeric and pepper to all sorts but my cousin has arthritis so I made some, mainly for her initially, and found I liked it. I must have strange taste buds! Take care x

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I am afraid I hate the taste of tumeric that is why I take the capsule. I realise it is not the best way to take it but as it seems to be working I will stick with it for now. It has worked really well for the animals. Horse not keen on the taste but I put garlic in his feed which he loves so no problem getting him to eat it. He is getting on at nearly 28 and a few years ago he was really starting to stiffen up so I was buying all sorts of supplements and fancy feeds. Nothing really improved things until I started on the tumeric. Great for the dog as well but unfortunately he died last weekend. Nothing to do with his arthritis though. Sad house this week. x

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Hi Riversidedawn, are you taking it with some oil? Preferably coconut or olive, although you can use a good fresh flaxseed oil. Also, according to what I’ve read it needs to be freshly milled black pepper. I know some say the paste tastes foul but it doesn’t bother me at all, you can add it to all sorts of things, soup, porridge, juices, smoothies, warm milk to make a turmeric latte. It really is easy to make and from everything I’ve read it is the combination of the turmeric (not curcumin alone), freshly milled black pepper and the oil. You just mix the turmeric in water, let it simmer for about ten minutes then add the pepper and oil. It can be kept in the fridge for 2-3 weeks or frozen for 3 months. You build up the amount you take slowly and according to how you feel symptom wise, as different people need different amounts to help them, at the beginning if you have too much too soon you may see more of the loo for a couple of days! There is a very good group on fb with a lot of information  about the paste. Will just say, my Onc doesn’t mind me taking supplements but I imagine some may not feel the same. As I’ve previously said, I’ve been adding turmeric and pepper to anything and everything for over two years but still think I’ve benefited from it. That said, I am very much into holistic and integrated care which I know isn’t for everyone, before anyone tells me again, and I do a couple other things that may’ve helped my joints but I genuinely think this has helped me too. Regarding fish oils, there is a very good article on victoriahealth.com written by their pharmacist about krill and fish oils, you don’t have to buy anything to access the articles he writes, I find them very good. Yes....can’t wait for some warmer weather, these zero temperatures definitely don’t help! Kxx

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Re: Bone mets - please join in

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