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 💖💖💖
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,
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
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.
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
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!
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.
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...
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.
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.
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