Well, you needed those scan results like a hole in the head, Carolyn, hopefully the new treatment will deal with the little blighters.
Hi Silver, they were found in late 2013, by accident at another hosp where I was having an ultrasound of my liver for a different reason. We are all different tho, and some of the ladies have had them for 10 years.
drugs are developing all the time...so take heart.
one of the big things we can do for ourselves is to tackle our diet......I realise everyone is aware of this xx and it’s hard on chemo when we feel so grotty.xx I do keep up with Chris Woollams on his charity website...Canceractive.......he has all the latest news on there.
What I also found very useful after initial diagnosis was to pick a choice and stay with it, could be anything, eg ramp up my exercise, or go dairy free, or adopt the rainbow diet .......or. whatever appeals to you...just to feel you are doing that one thing that you think might help. However, I’m not advocating anything drastic,esp whilst we are on Chemotherapy xx
love to you,Moijan😘🤗
have also pmd youx
You could not be more right wrt consultations. 15 mins. every 6 months. I attend at 2 hospitals under the same trust.
I live on my own as I became divorced 10 years ago. I have been allotted a nurse, but as luck has it, we really do not see eye to eye, which means I'm paddling sowewhat solo.....
All good wishes,
Hello bon...( is it ok to address u, as such??)
Many thx for your reply. I did not know that about bone scans.
mmmmm, yes, I sometimes wonder about the cost of scanning. I'd prefer an MRI everytime.
I've been on this journey for 3 years, & I use my sense of humour as my shield, but just recently I'm feeling very flat about it. I call mine 'Max'.....in that hoping it'll reach a max.....not applicable, but hey ho.....
This is the 1st time I've reached out on a breast cancer forum.....
All good wishes,
Many thx for your reply, especially as you have so much on your plate. May I ask, how long is it since 'they' found your secondary mets.?
I don't like CTs either and they are not as accurate as MRIs.
Hoping you have adequate support. Alternative therapy is so very helpful. I have my most favourite reflexologist......
All good wishes,
Hi Silverlining. It's coming up soon to a year since my secondary diagnosis (and 13 years since primary).
CT scan shows a bit of bone mets - but only the ones they can see on sternum & ribs - so doesn't include arms (or hands which are also currently concerning me). I am fortunate to live in Southampton near to a very good oncology unit. My oncologist is very good at explaining everything in ways I can understand. My family do not live in Uk but I have a very supportive partner. Ask lots of questions when you see your oncologist, and if you can take someone with you - those have been the best bits of advice I've been given and it helps.
Sorry to hear you are in pain
Bone scans pick up any irregularities in your bones like arthritis, you need a CT or MRI scan to find out whether these are mets or not. I had bone mets picked up on a CT scan for something unrelated so I had a bone scan to find out the extent of the irregularities and then more CT scans to investigate what was picked up there. After that I had a bone biopsy to determine what kind of cancer it was. As Moijan says MRI scans are preferable to CT scans as they don't involve radiation and I think they give more detailed information. Some people don't like them as they are longer and noisy. I think they cost more but they are worth having if the powers that be are willing to pay for them. (Bone scans involve radiation too of course).
I have mets in my pelvis and skull but haven't had a scan for almost a year now.
Keep in touch
Hugs Bon x
Hi silver lining, you could request an mri....I have mets in my spine, pelvis, ribs collarbones etc...as it’s also in my liver they are now doing three monthly whole body mri’s, but you might find they can’t run to that...but certainly they gave me the reason that they wanted to monitor my bone mets as the reason for doing the mri’s
i must admit, I don’t like cts...although they are shorter, mris are not radiation...just magnets, why not ask them for one...just for reassurancexx
good luck with everything,
oh, and you can have copies of your doctors letters, which will give you all the updates...but if you don’t want to have those...you have every right to ask about the bone mets.
i find my chiropractor has actually helped manage pain that I thought might be the cancer..but now I think those pains weren’t cancer as they’ve gone away..she found my muscles were very tight in all sorts of odd places and worked on them...which did the trick!
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.....
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).
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.....
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
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
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.
Sorry to hear this Chris, hospices are amazing places. Keep in touch as we are all here to give support day or night.
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
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
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.
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
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 💖💖💖
always hard when we lose a pet.........thank you for your feedback re turmericxx
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
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
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
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.
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.
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
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
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
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
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.
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
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,