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Carolyn52
Member
since
26-10-2015
8619
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05-02-2016
11:58
I read the Mail everyday and missed this article. I did read a few months ago about a Diabetes pill ( I cant remember what it was called ) at a cost of 1p a day was looking promising but all the Clinical Trials did not prove it and I dont think anything is progressing on that score now. This pill has not been approved for cancer treatment only diabetes but the lady that wrote the article had seen positive results in her cancer being put into remission. Simvastin would be brilliant if it does help fight cancer as my hubs has been taking it for years for his heart problems and its a fairly easy pill to tolerate. Carolyn xxxxxxxx
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05-02-2016
11:45
1 Hug
Hello Moijan Thank you for bringing this thread forward as I was dx in October 2015 with mets to hips, pelvis and femur and have been taking Letrozole for three months. I look at this tiny pill everyday and wonder how something so small could do so much. I take Adcal and now Denosumab injections monthly. My oncologist is lovely and assures me that after 8 weeks it starts killing off the cancer cells and so the bone heal !!! As I have no medical knowledge at all ........have to trust her !!!. I know there are other options as I read the boards reguarly but secretly hope that this little pill will do what it says on the tin and kill the little cancer blighters that have set up home in my bones !!!! I did research Letrozole and it was formerly known as femera under licence and it seems similar to Tamoxifen/ Arimidex which I took for five years back in 2004/2009 with the primary breast cancer. After 11 years I was devasted to be dx with secondaries but like all the ladies on this board ....take a day at a time and hope that new treatments will be brought into our lives as time goes by. Carolyn xxxxxxxxxxx
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04-02-2016
12:16
Hiya Marirose - thought I would just say well done to your good news and that Cap is working for you. I know you are a very active member on this board and would just say well done. Carolyn xxxxxxxxxx
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30-01-2016
05:36
Hiya Anneemay - Welcome to the forum and like you I was dx in 2004 with primary BC had the op, chemo and rads and then in October 2015 was dx with bone mets and I was absoluted shocked after all this time too. I was always "uneasy" until I reached the ten year landmark but then celebrated by retiring and moving house etc and then last year suffered hip pain and was treated for a trapped nerve and then arthritus . It wasent until I got an xray in October that the mets were found and were well "settled in " !! I had a hole in the femur ( got a pin in now ) and hip,pelvis and knees well invaded. I manage to get about on a crutch but have gone from being active and a shopaholic to just getting up a few aisles in the £1 shop at best !! Loosing the independence is a huge downer but like everyone on this site - put on a smile and try to be positive. I am on letrozole, adcal and now denosumab injections . I do not plan chemo again in the future if its needed as I just dont feel its for me this time. Carolyn xxxxxxxxxxxxxxxx
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29-01-2016
05:12
1 Hug
l had my femur pinned 18th November as an emergency as it was thought that with a hole in the bone it could snap at any time. I have cancer in hip, pelvis and knees . I can get around on a single crutch but havent driven yet . There is only two of us that I know of on this site that have had this done. Everyones treatment plan is unique and so we all have different stories to tell on the board and that is why its so nice to be part of this forum. Carolyn xxxxxxxxxxxxx
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29-01-2016
04:34
I had my first one Tuesday and was told I might get achy but didnt notice. Simple injection. Hope it does what it says on the tin !!! Carolyn x
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28-01-2016
06:16
Hiya Diddy Just wanted to say all the best for your rads and dont forget to post on the board and let us know how you get on as its obviously something very special as not many of us have heard of it before. Unless you have medical knowledge ( doh - I dont as I was a legal cashier before I retired) we have to place our trust with the Oncology Teams who should be safe hands for our health and survival. Carolyn xxxxxxxxxxxxxxxxxx
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26-01-2016
05:35
1 Hug
Hi - Diddy I had some ordinanary rads on my hip but dont know about the ones you are having. No doubt it will help with pain etc. I hope someone on this board can answer you as it always helps to find someone else to compare notes with. On primary BC sites the treatments are similar and so easy to find similar postings from other patients with the same regimes but secondaries treatments seem to be unique . I had my femur pinned and have only found one lady that has had this too so feel quite isolated with symptoms and things. CAROLYN XXXXXXXX
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26-01-2016
05:28
Had my first injection of denosumab this morning and was told I might get a bit achy or jaw ache for a few days so think I can cope with that . Visitng the Chemo dept today brought back all the memories of 2004 seeing the ladies all hooked up to drips etc and I did feel a bit panicky of ever having to go that route again. One thing I did notice is how many ladies are using the cold caps and dont seem to be loosing hair ....maybe its a thing of the future and better ideas will be found in time to avoid the hair loss. I saw Oncologist and asked if my blood tests were ok and she said fine so I thought I would leave it at that. Nothing else was mentioned about markers or anything . Maybe ignorance is bliss !!! Being hit with a lot of rain and wind today in the Westcountry as the tail end of the US snow storms -- better the wet stuff than the white stuff .........I say !! Dont seem to be able to cope with snow and certainly not now with the bone mets and brittle bones !! Carolyn xxxxxxxxxxxxx
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25-01-2016
10:45
Hi Sharon - what a joy having a grandchild due soon and something to focus on away from the savage chemo. I have three grandchildren - twins nearly 11 and an elder one nearly 12. They have been so tolerant of me being "off" since October. I went from the active Nan - swimming and skipping etc to one with a crutch and invalid ...I just wander what they are secretly thinking !! My first grandchild was born the same day that I started my chemo back in 2004 and so that was a frantic day !! But I beleive that he was my focus to get through it all. I always vowed I would be at the school gates when he started school - and I was with the camera !!! I had FEC/CMF chemo back in 2004 and lost my hair with the first bit but then it started to grow again with the CMF but it was a harder chemo to tolerate. I have been following Victoria Derbyshire online and she is using the cold cap but loosing some hair so fingers crossed that you can keep yours as it does help with the moral of it all. Thinking of you xxxxxxxxxxx
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24-01-2016
06:08
Forgive me ladies but Im not being nosey or intrusive but last night with nothing interesting on the tv to watch I started trawling through Secondary Breast Cancer postings back to 2009 and enjoyed reading old postings from some lovely ladies and just wandered how many of you are still " active " on this forum and what treatments you are having to keep you so well . I was only dx with bone mets in October 2015 and still in that settling in period of shock - just interested in various treatment options and positive stories from the experienced ladies here that have been so positive and focused. Denosumab Xgeva seems to be highly praised ( Im starting mine on Tuesday ) and it seems to have only been available to all the past three years. Carolyn xxxxxxxxxxxxxx
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24-01-2016
05:53
Hiya Sharon - After being so active until late Summer when the hip started playing up I was hypo active and now I have had the pin put in and find it so hard on one crutch , am very limited to do much more than hobble around the £1 shop or car to coffee shop so no much fun. I have only just managed to be able to get into our car after 10 weeks - its a bit of progress . I do feel for you being back on chemo as its a savage treatment and up to now have avoided it this time around and to be honest not sure if I want to go that route again. I had it in 2004 with the primary BC and managed to get through it but I was a lot younger and focused then.The worst part of chemo (maybe cos Im vain) is the hair loss ...somehow whatever you feel like its the loss of the hair that takes the last part of the dignity away. I am 63 and am really feeling the age now !!!
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24-01-2016
05:44
Hiya Ethel. Do you mean pins in femur ? If so I would like to hear from you too as there are not many of us with this and it nice to chat over the problems and moans !!! Carolyn xxxxxxxxxxx
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22-01-2016
07:11
1 Hug
Thank you ladies for replying. O dearie me ..........online shopping is not good for my credit card ,,,yesterday I bought a new tv , a outfit for my nephews wedding and some other bits so job done !!! Its so nice to hear from other sufferers on this thread as friends and famiy are great but sometimes they think cancer/ bone mets are like the flu ....you take a few pills and it all goes away !!! I think I prefer the ignorance is bliss bit too as try not to google too much !! One thing you realise is that there is so many different treatments and everyone is unique. I live in Devon and the Exeter Oncology is briliant - do feel in very safe hands. Carolyn xxxxxxxxxxxx
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22-01-2016
03:07
Helen what a lovely post you made and its very inspiring and like a lot of you ..packed away the Xmas decs and wonder whether I will be here next Xmas to put them out again. I was dx with bone mets at the end of October - hips, pelvis, spine and knees ........I live a day at a time and now I dont keep special things for special occasions like I used to. I spray the expensive perfume every day even if Im not going out, wear new clothes even if I am only sat in the chair at home etc etc. When I first got the primary BC in 2004 there were four of us ...Im the last one standing and appreciate that I had 11 years of good health and being in remission that long. But somehow after all that time its more of a shock as you begin to believe that you have beaten this cruel disease . Carolyn xxxxxxxxxxx
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22-01-2016
02:49
Thank you Sue and Mo for replying - Sue you sound like you are on the mend already with your hip op and being on two crutches already you are doing really well although I do know how difficult it is to get about - silly things like putting on socks ( got a sock putter on thingy ) and climbing stairs etc etc . Mo - thank you for the answer on markers - its all too much to take in as I was only dx with bone mets at the end of October and its been a roller coaster of activity what with the femur pin, radiotherapy and recovery etc. I try to put on this false smile in front of the family and friends but when Im on my own and start thinking .....I panic ........sometimes too much information on bone mets etc is dangerous and I sometimes bury my head in the sand and try to ignore it all !! When my Onc had the whole body bone scan on screen ........decided not to look - I know that the mets are in hips, pelvis, spine and knees and so have robbed me of my mobility, driving and love of shopping !!! I get around on one crutch and will not give in to the wheelchair yet !! Carolyn xxxxxxxx
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22-01-2016
02:36
Thank you for replying to my post. Feel better now although Im always a wimp with new treatments - fear of the unknown ....... When I had the primary breast cancer in 2004 - I reluctantly did the chemo but this time .......am petrified of it but my oncologist hasent mentioned it and so I hope Letrozole does its job but I find it hard to believe that a tiny tiny pill each day is going to keep the cancer at bay for long !!! Carolyn xxxxxxxxxxxxx
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21-01-2016
03:00
Thanks Sue for replying about the femur pin and Im sorry that it did not work for you and you have had to have more surgery. Its tough dealing with all this but reading through some of the threads on the board there are some very brave people here ........Im such a wimp and I am very confused as I can feel the pull of the pins from the nail although it was eight weeks ago now and of course the pain from the cancer in the hip and pelvis is also still there !!! It seems to be a rare treatment as you were the only reply and the Surgeon said that it would be back to full strength now the pin was in and to give it some welly !! Im not so sure though !! Im seeing my Oncologist on Tuesday to start the denosumab injection but only after my blood test to make sure all is well. Im a bit confused about " markers" I keep reading about on the board ........do they show on blood tests or scans ? Carolyn xxxxxxxxxxxxxxx
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19-01-2016
05:24
Just reading these threads and I wondered if anyone had had a nail put into their femur to stop it breaking through the cancer damage in hip and pelvis etc. Even in hospital back in November when I had this op - there was no one else with similar and so I feel a little bit out on a limb. Obviously I have googled this but would like to hear from anyone else that has actually had the same. I take letrozole and adcal daily and next week start denosumab injections for my bones. I had primary breast cancer in 2004 and after 11 years its come back with vengeance now and Im still trying to get to grips with all this !!!
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19-01-2016
05:04
Phew happened to come across this and I too have been on Letrozole for 10 weeks now and have noticed the urgent need to go to the loo. It happens at night mostly but at least I know what is causing it now !!!! I have bone mets to the hips, legs and knees and so my problems are walking and moving but I can get about on a single crutch. Seeing Oncologist next week to start on Denosumab Xgeva injections and for some reason Im scared of this with the side effect of the jaw and teeth problems it causes but I have to trust the judgement of my Oncologist . I also notice that I get different brands of Letrozole - and this last batch seem to be causing a lot more side effects like the bladder thing.
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