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Buff
Member
since
19-12-2019
17
Posts
2
Hugs
15-02-2020
12:23
Thank you x
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14-02-2020
03:18
Thank you for your help. Do you mind mexasking about costs of consultation, meds etc? How often do tgey lihexto review etc.
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13-02-2020
01:34
Thank you for your replies Annie and Anotherone. I hope you dont mind but I have questions and the website doesn't give a lot of info. Did you call and speak to someone for more info before making your first appointment? Im looking for detailed info on what they offer to take to my consultant. Also info on cost. Its a big trip for me to get to London. Do you know if they do virtual videocall type of consultations?
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05-01-2020
09:38
Helllo there and thanks for reply. I found an old thread about 'COC protocol' but none of those members have been active recently. Ive seen the clinic website and read about their research study but first hand experience would be really interesting.
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05-01-2020
06:58
Hello. Does anyone have experience of this clinic or of using repurposed offpatent drugs alongside conventional NHS standard treatments? Thanks Buff
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04-01-2020
11:57
Hi Passive I'm very interested in your thoughts on this subject. Thank you for posting this. I look forward to hearing more from you. I am avidly reading about anything that I can do to help me feel better and live well with my cancer met pals. They are likely to be my constant companions but Im trying to kerp them in their place and limit the damage they do. Maybe even say goodbye to some of them. The cannabis plant looks like it could be an ally for people like me but for some reason its out of bounds in the uk. Still want to find out more though as like to be well informed. You can see who I am and why I am in this site by reading my profile. Please can you put sone information on your profile. I really value the ability to be 'introduced' to folk who write in here via their profiles and stories. Ok I know they could be fake but I prefer to trust till proved wrong.
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01-01-2020
11:37
Hi there Emma. I too have bone mets in my hip/thigh, and also many other bones. Do you mind me asking if you have had scans of the areas in which you have these aches? My first thought would be to mention this to your oncologist if not. I have experienced pain in spinal and rib bone met areas as an ache. I found cocodamol helped a lot. I have recently had significant pain in my hip (prob combinatiin of surgery radiotherapy, bone strengthening drugs). Worse at 4am! Really struggled getting on top of it. I found side effects of oxycodone (longtec and shortec), to be nausea/vomiting, I got serious constipation from the ondansetron which I took to stop nausea from said oxycodone. I stopped both of these and upped the 100mg gabapentin I usually take 3 times a day, to 200mg 3 times a day. After a few days of feeling pretty knocked out I was painfree(and constipation free - yippee). I have aches in my left hip now and am going to see my osteopath who does nedical acupuncture. She worked wonders with other pain but not seen her since diagnosis.
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01-01-2020
11:23
I actually bought this book and would not recommend it at all. She writes as if she is letting the reader into a secret which I felt was sensationalist and just plain annoyed me! She did not inspire me with confidence to rate anything she says. She made what I felt to be sweeping statements which I found scared me until I got a grip, went back and reread with a more discerning eye and my husband as a sounding board. In contrast, I am reading a few other books I have seen mentioned in these forums. They are well balanced in the way they are written and the line between personal opinion and fact feel clearer eg Radical Remission by Kelly Turner.
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21-12-2019
02:18
1 Hug
Ive been looking into the use of CBD and THC oil too. Someone I know takes a 1:1 ratio oil to alleviate treatment symptoms e.g. pain, nausea. She has been living with very pesky mets for some years and been through the mill and back. She is not taking it with a view to influencing the cancer itself though I see some people do see it as being key to their cancer status improvement. A wee story ... as you may know, a form if it is now able to be prescribed on the NHS in certain circumstances e.g. muscle spasm and pain in MS. A friend if mine, now gone, used to live in fesr as her son procured cannabis for her to smoke to alleviate those very symptoms. She was terrified he would be found out. It's only taken 43 yrs for research to agree with what she knew.
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21-12-2019
01:56
Hi there. I was put on Tamoxifen for 5 yrs in 2006 after mastectomy for breast cancer. A few years afterwards my periods became intolerably painful and heavy. To cut a long story short Gynecology were fab. They took a wee biopsy and treated an area if my womb (like having a smear but with local anaesthetic as can be uncomfortable). I also too painkillers just before appointments. Sometime later I had some more treatment. They then decided to do an endometrial ablation under general anaesthetic. My uterus was very heavy and thickened due to tamoxifen (very common side effect I believe) and there were some changes they didnt like the look of (again commonly seen in lining thickened by tamoxufen). I also had some big fibroids. I was in overnight and had my tubes tied (sterilised at same time). That was around 2013. They kept an eye on me and Ive been fine and have not needed a hysterectomy which would have been next step for me. I had no periods after the ablation and no pain. I was very well looked after and felt that this is something they are used to seeing and are confident in sorting out. It won't be long till you are seen and can get it sorted too.
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21-12-2019
09:39
Thank you for yiur reply. I will send this link to my cousin and ask for his opinion as I had similar thoughts when his wife told me about her friend Jenny. I presume he read the book before giving me his opinion, he is a Cardiologist and not one to be taken in by 'woo', He said it was worth reading but that Jenny had gone to extremes to lower her ph and he would not recommend those extremes to me. I'm interested to know if you have read any of these other books I have seen discussed in this forum and if you have, what your opinion is on the diets and supplements I believe they may suggest. I have ordered them as am open to considering things others feel have sone merit : How to Starve Cancer; Radical Remissions; The Cancer Revolution; How Long Have I Got. best wishes and thanks again for taking the time to respond. Buff
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21-12-2019
09:13
ooh thank you. I will ask him about that new radiotherapy. Ive heard of 'cement' being 'injected' into individual vertebrae but not the removal and replacement with metal cage thing you have. Good to know there are options if my many affected vertebrae succumb. You being pain free following surgery is just fantastic!!!! I think my onc was disappointed I was not pain free in my hip after insertion of inter (or maybe intra?) medullary nail a few weeks back. He too did rads to just blast what was left of my bone and I too just said ok. I posted yesterday about getting on top of what then became intolerable pain in my hip and thigh. Hearing you are pain free after your surgery gives me hope that the rads and Zolendronic acid may have produced short-term pain. Fingers crossed! x
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21-12-2019
12:05
1 Hug
Just wanted to share my recent experience in case it's of any help to anyone. I have widespread bone mets (left hip/thigh, pelvis, up and down spine, rib, skull) diagnosed 13 wks ago. On letrozole, Ibrance (Palbociclib), Zometa infusions (Zolendronic acid - bone strenthening), had metal rod hammered into left thigh 7 wks ago to reduce risk ifca fracture and 5 rads to left thigh. Recently had terrible pain in my left hip / thigh / leg (onc said due to zometa but surgery and rads probably added to the mix). I was already taking 2 paracetamol four times/day; 1 diclofenac three times/day; 100mg Gabapentin three times/day, 5mg longtec 12 hourly and 3ml shortec for occasional breakthrough pain. Cold made the pain worse ... dreaded getting up to toilet ... heat pack and toilet seat covers helped a tiny bit. I increased longtec to 10mg and needed more shortec but still waking at 430am in 9/10 pain which lasted for a few hours. I tried all kinds uf diversion tactics to get me through it. I upped the longtec from 5 to 10mg in desperation over a weekend. GP added ondansetron three tines a day after a visit to A&E for nausea/vomiting on the mon night!. This caused horrific constipation and pain no better. GP wanted to up the longtec but that wasn't going to help the constipation aaaaaaargh. I asked for referral to Palliative Care team and seen straight away. Stopped ondansetron, started laxido (quick relief from constipation ... hoorah!), reduced longtec to 5mg and doubled the gabapentin. Gabapentin is my new best friend!!! Instant pain relief .... woke next day with alarm ... minor pain! OMG it was fantastic!!!! Obviously nerve pain had been a big component of my pain. OK so I had to get through a few days uf side effects but needing to sleep 18 hrs out of 24 for a few days was a fair swop for the pain. Whst I have learnt: - although my husband and I were in despair there was a way through. Use your local palliative care nurse/doc. Knowing they will always support me in the future makes me feel a HUGE amount better in itself. They are the pain experts and all I had to do was ask my GP to refer me. - never be without a warm toilet seat cover ... packet of reusable 2 for under £10 on Amazon - bone met pain might be helped by gabapentin - there are many different laxatives ... do your research! Laxido is a 'softener and mover' and was perfect for severe meds induced constipation ... easy to control dose yourself.
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20-12-2019
11:09
I was recommended this book by my cousin's wife, who is a friend of the author Jenny Magnusson. My cousin, who is in the medical profession, says the approach she took is very radical but is worth a look even to follow in a smaller way. Info on the book says ' Jenny reduced her tumor size dramatically in just a few weeks by balancing her pH levels with baking soda and diet! ' Has anyone read it?
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20-12-2019
09:54
oooh that's a lot of radiotheraoy. I had 25 to my chest when I had my primary 14 yrs ago and was shattered for quite a while. Just going back and forth to hosp is tiring! Maybe its different now though. I was wondering what the criteria was for having rads to bones. Did you have yours for pain? I was given rads to my fenur to reduce pain I think. Im bothered by pain in my skull and a rib right now. The pain in my spine is less bothersome. Wonderibg if rads mught help. 'll ask my onc at next appnt.
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19-12-2019
06:04
Hi Rara, I was diagnosed with widespread bone mets 3 mths ago after an unrelated chest CT scan. I had been having spells of severe pain in a rib and moderate pain in my groin/hip when walking I was started on letrozole straight away. Ibrance (palbociclib) and regular Zometa infusions (Zolendrinic acid a bone strengthening drug) were deferred pending assessment of hip and possible need for surgery to prevent future disability. I had surgery 7 wks ago to stabilise hip (a rod in thigh bone) due to being a hot-spot of wee blighters weakening the bone. I started on the Zometa and Ibrance a couple of weeks later, then 5 lots of radiotherapy to my hip/thigh.. The Letrozole seems to be my most important drug as will stop the cancer cells growing I think The Zometa seems important to strengthen and re-knit damaged bone. The Ibrance seems in the mix to try to shrink my mets as some are pressing on nerves. Im not sure if this will be of any interest at all but I shared it as another experience of the drugs you mentioned. In my 'primary' years I was offered a treatment that I decided not to take. My current oncologist would have told me to take, not offered it to me! My advice is to consider asking to see a different oncologist for a second opinion as to the Ibrance.
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