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Capriati
Member
since
05-01-2017
12
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2
Hugs
04-02-2017
01:42
Hi Everybody Has anyone had any recent experience of hyperbaric oxygen treatment? C x t
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31-01-2017
04:11
I've started going to a weekly Salsa night. Easy, friendly people, all eager to help with steps and stuff. There's a proper dance floor, a glitter ball, a bar, nibbles on the side and a great teacher. I get three solid hours of joyful aerobic exercise, a glass or two of wine, a slice of pizza and good chat. A life saver. C x BTW it's 7.30 Thursdays at Carnforth Railway Club.
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31-01-2017
03:53
Hi Gemma I have no relevant experience so I can't advise. All I can do is wish you all the best and send you lots of gentle hugs. C x
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31-01-2017
03:42
The recurrence of BC for me came after 20 years. The second half of those years were fine and just as I was about to retire, I was as fit and well as I have ever been. I really believed that I'd seen the back of BC. However, a period of stress - linked to bullying at work - and feelings of frustration and anger - I think triggered the recurrence BC. It isn't so easy to get rid of that anger, even though that period of my life is over a done with - and even though it was a 'successful' outcome for me. BC is the sword of Damacles - one is forever waiting for it to strike. I'm convinced that mental and emotional stress contributes significantly to the occurence and recurrence of cancer. A sensible eye on lifestyle helps, but keeping oneself stress-free is paramount. Hugs and best wishes C x
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31-01-2017
01:48
Hi Maldives I'm so sorry that you seem to be having an horrendous time. Most of us have a grim time, but you seem to be sufferring more than most. My teeth/jaw problems started after chemotherapy and long term Tamoxifen in 1994 as treatment after radical mastectomy. It settled down a bit after stopping Tamox 5 years later. However my teeth continued to become loose and I eventually decided on implants. At this point I did not put two and two together re the cancer treatment and my loose teeth were constatntly attributed to smoking (I HAVE NEVER SMOKED). It was always denied that chemotherapy and other cancer drugs played any part in my loosening teeth. I was clear of cancer until summer 2014 when I had pain in the shin and a bit of discomfort in the breast bone. Diagnosed with widespread bone mets, mainly in spine, skull, jaw, sacrum and long bones. Initially prescribed Letrozole and Ibandronic Acid tabs (which caused burning in my throat and indigestion). Ibandronic Acid was replaced with a monthly injection of Denusumab. After a year of Letrozole, I was almost suicidal; though it seemed to keep the cancer at bay, the side effects made life not worth living. I was then given Tamox, which was better but not by much and I don't think it's working as well as Letrozole. After a year of Denusumab, the dentist identified the problem in my mouth. I came off Denusumab with no alternative, as all these bone strengtheners have the same risk. I suspect that Tamox also contributes to the jaw problem. I'm not sure where to go next. I feel that everything on offer is more damaging than the cancer itself. I think that perhaps smaller doses are the answer - or doses 'tailored' to each individual. That suggestion was not welcomed by my Onc. I am supported by my homeopath with pain relief and keeping me upbeat. I also take a range of supplements and ESSIAC herbal infusion. (look it up everybody) Best of luck, Maldives, Hugs C x
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31-01-2017
01:13
Hi Moijan I have recently had new set of scans and see the Onc this coming Friday, so I'll know a bit more after that. Not yet sure about the availability of Hyperbaric Oxygen Therapy, but I do know that most of the drugs on offer are not likely to be beneficial to the osteonecropsis of the jaw. My nearest hospital is an hour's drive away, but the cancer treament is usually at another one which is nearer to a two hour drive. You are quite right, the medics seem not to want to take notice of drug-related symptoms. I know it's 'no pain, no gain' but there are limits. We do really want to have some quality af life and they should be listening. Has anybody ever seen their consultant taking notes about these symptoms? If they did they may eventually notice some repeating negative symptom patterns to pass on to the pharmacutical industry. It was the dentist that reported his concern about the Denusumab and the state of my jaw and referred my to the Dental hosptial - but it's taken a year for it to be confirmed. I hope that the dangers of this drug become more widely known so that early problems can be dealt with promptly. Wishing you all the best on your health journey, C x
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31-01-2017
12:56
Hi Dawn Yes, I too had about a year before they diagnosed it - passed around like a hot potato from Oncology, to ENT, to Fac/Max and back again - trying to blame everything except their blessed drugs! In the meantime a lot of pain with inflammation not made better by antibiotics. It finally eased up after a Balloon Synoplasty procedure, which cleared out my sinuses!!?? Not too bad now, though like you, I have a peculiar taste in my mouth and mouth odour, no matter how many times I clean my teeth and mouth rinse. My query now is whether or not the Tamoxifen is continuing to contribute to the damage, but of course, guess what, nobody knows! The motto is 'keep bu**ering on'! Good Luck and best wishes, C x
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06-01-2017
12:48
It seems to me there is a huge amount of screamongering when it comes the complementary therapies. I think that it's up to us - the cancer victims - to decide for ourselves how we deal with our treatments. If something improves our sense of well-being, what's the problem? The medical profession generally seem to reject the use of complementaries whilst on chemo or other cancer treament programmes. Why? Is there actual proof that complementaries cause problems? In my experience, I feel better, I stay healthier and keep the cancer at bay when taking comps of my choice. If I left it all to the drugs, I know I would be a physical and emotional wreck - been there - got the T shirt! Do what suits you best and if you don't want complementaries, that's fine but please don't slag off those who do. Capriati with love and good vibes to all xxx
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06-01-2017
12:15
1 Hug
Diagnosed with recurrence of breast cancer, now in the bones, in September '14. After about a year on Letrozole and Denusomab, I was truly suffering with virtually every common side effect. In addition, I had sore gums, inflammation, toothache (though all my teeth are implants!). I was prescibed Tamoxifen instead of Letrozole, but it was another few months before it was discovered that I may have osteonecrosis of the jaw - caused by the Denusomab. So I came off that about a year ago. Despite that the jaw has worsened and I now have exposed dead bone in my mouth and a worsening of pain in the areas of bone mets. Has anyone else had a similar problem? Capriati
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05-01-2017
07:58
1 Hug
Diagnosed with recurrence of breast cancer, now in the bones, in September '14. After about a year on Letrozole and Denusomab, I was truly suffering with virtually every common side effect. In addition, I had sore gums, inflammation, toothache (though all my teeth are implants!). I was prescibed Tamoxifen instead of Letrozole, but it was another few months before it was discovered that I may have osteonecrosis of the jaw - caused by the Denusomab. So I came off that about a year ago. Despite that the jaw has worsened and I now have exposed dead bone in my mouth and a worsening of pain in the areas of bone mets. Has anyone else had a similar problem? Capriati
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