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gmc
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since
24-03-2014
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10-03-2019
04:30
Hallo Dis I am on the E&E combo too, for the last 6 months, and have been told that it's vital to take them both together. I had my dose reduced 50% due to lung side effects but find I can tolerate this well now and at the last scan was told the bone mets were stable. Good luck with your treatment and maybe try the prednisole prescribed mouthwash - I've found it very good at preventing the ulcers and notice if I miss it for a day or so ! Gill x
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09-01-2019
10:56
Hi Sarah Louise I'm on this combination of drugs. I was on Letrozole for 4 years after BC but when secondaries were discovered in Aug 18 I was changed to Exemeestane and Everolimus. Are you still taking this. I've had my dosage reduced 50% and feel all the better for it . Cheers, Gill
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01-12-2018
01:20
Sorry not to have replied earlier Riversidedawn - I thought I had already but obviously not .....which is another thing I'll put down to chemo brain..again ! I don't appear so far to have had any SE from the denosumab . The everolimus and exermestane are the tough ones for me. Even the BC nurse said they can be hard to tolerate but I was crying at the time so maybe she was just being kind to me !. After a scan 2 weeks ago they discovered pneuminitis in my lungs so have had a 2 week break to clear it up as caused by the treatment. Now I'm back on it at a reduced rate and so far so good....although worried that it will only be half as effective now! Good wishes to everyone on this thread, Gill x
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14-11-2018
11:42
1 Hug
Hi Jayrand56 I can truly identify with your post as I'm in much the same situation. My emotions are all over the place and I still don't think I can believe this is happening. I had BC in left breast in 2002 then again in right breast in 2014. Despite the SE of hormone pills I felt better than ever recently so was mortified to be diagnosed in August with bone and lung mets following investigations of a non-healing rib fracture. I am seeing a counsellor but not too sure if that's helping really. I think that hopefully this thread may be a good way to let off steam and chat to others feeling the same. Gill x
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14-11-2018
11:34
Hallo Ladies I had a Power Port fitted a couple of months ago following diagnosis of mets and had it used today for a CT with contrast scan for the first time. None of the staff in the CT unit knew how to access it but thankfully the hospital were aware of that when the appointment was booked and I had a member of the vascular access team fit the attachment and then she came with me for the scan, waited to remove it and flushed it through afterwards. I had a portocath inserted back in 2014 at 2nd diagnosis of BC as I'd had total lymph clearance and it proved to be a pretty much painless way of having bloods taken and chemo infusions. I'd thoroughly recommend one although I do agree that there needs to be more training of staff to be able to access it with confidence ! Now I just need to learn how to deal with my "scanxiety" waiting for the results !!!! Gill x
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14-11-2018
11:05
Hallo Ladies My bone mets (and lung) were discovered in August this year after I broke a rib back in Dec and it wouldn't heal. Eventually a nuclear scan showed up the secondaries ! I had BC in 2002 and in the other breast in 2014 and am now devestated that this has now happened. My treatment for the last 3 months has been Denos umab injections, Exemestane and Everolimus which I've found nearly as tough as the chemo back in May 2014. I had a ct with contrast scan today and see the consultant next Tues for a comparison to see if the treatment is doing anything positive. I found the BCC forums really supportive before and although I never wanted to be back here it's a relief to read your threads and understand I'm not alone ! Cheers, Gill
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17-03-2017
11:42
Wow "Hello", life really does seem to be throwing you an awful lot of curve balls! You're doing so well to even write down the catalogue of disasters that's happened to you in the last 12 years. The best thing about the BCC forums is that you don't have to attempt to pretend to be positive as you can just be yourself, rant and rave, ask for advise and be yourself. I know personally how devastating it is to have a second diagnosis as I had BC in one breast in 2002 and then again in the other breast in 2014. I don't know about you but first time around I didn't have any support network. Luckily I found this website second time around and it was just what I needed. I joined a group of ladies who were all going through chemo at the same time as me and used the forum practically every day. I've also found other forums on here useful and have phoned the help line for advise. Please take advantage of anything offered - councelling was invaluable much to my surprise as I was very sceptical about the benefits. Good luck with whatever treatment you're going through, Best wishes, Gill
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24-02-2017
12:22
Hi Ladies I've had lymphoeda in my right arm for the last 2 years following a second round with BC. Every time I have my arm measured by the lymphoedema nurse there is an increase in size and I've had a variety of stronger sleeves to wear but sadly it hasn't helped. I'm now going to have my arm bandaged for two weeks to see if that can make a difference starting on Monday. Can anyone tell me what to expect, were you able to drive anad was it all very uncomfortable ? Any advice or tips grat3efully received, Thanks, Gill
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06-06-2016
05:39
1 Hug
That's tough Buster. I had a couple of stays in isolation during my chemo days for infections. Hope you have plenty of things to occupy yourself with plus a good internet connection ! A life saver when it works. Also at least you are in the right place to mention your heart problem and get them to check it out so you can hopefully set your mind at reast - one less thing to worry about. Thinking of you and wishing you a speedy end to the infection, Best wishes, Gill x
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05-06-2016
10:36
Hi Goldie Your post could have been written by me! I completely understand how you feel as I too have a fat arm, thin hair, weight gain- not to mention the aching joints ! I've had to wear a sleeve for two years now and it always feels worse in the summer when I can't hide it. To make matters worse if I ever do leave it off my arm is lily-white compared to the other one ! I think it is a constant reminder that we've had cancer and I can never think of the right thing to say when asked "what have you done to your arm ?". I know what I'd like to say !! I'd love to say something to make you feel better but quite honestly I think the best thing to do is to have a rant on this site as we are probably the only people who can truly understand our complex feelings. Big but gentle hug, Gill x
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17-05-2016
11:11
Hi Chilik I've had to experiment with a few sleeves before finding one that feels comfy. I do hate having to wear them as it seems a constant reminder of having had breast cancer! I, too, found the glove uncomfy so was given a different size - slightly larger - which I only wear if my hand gets a bit puffy and I usually find that it goes back to normal in just a couple of hours and I can then remove it. Sadly the arm doesn't respond so well but I made a pest of myself and went back several times and I now have a sleeve with silicone dots at the top which holds up very well and it's also been made a little longer at the outer edge of my arm so is a much better fit. The sleeve is not meant to be uncomfortable so I'd advise to give the lymphodema nurse a call and tell them how you feel. Hope you can get some success xx
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16-05-2016
11:06
I can certainly "sing the praises" of the benefits of joining a choir. After being diagnosed and going through treatment for the 2nd time with breast cancer I was asked by my Breast Care Nurse if I enjoyed singing. She had recently formed a choir made up entirely of ladies who had either had BC or were going through treatment for it.I was feeling very tired and anxious after the end of chemo but decided to give it a go - especially as a couple of ladies from the choir had come along to a Moving On course I attended and were really enthusiastic about it. As the choir used a venue nearby to me in Farnborough I went along to a session, albeit with a lot of apprehension and doubt but I can truly say that it has been one of the most enjoyable things I have ever done. It is a combination of a support group, finding new friends who have a common bond , lots of laughter, a few tears, uplifting singing and a time to forget one's problems or to share them if it helps. Our choir is called" Kindred Spirits" and no-one is turned away - no auditions, so quite amateur, but we don't make too bad a sound - even been asked to sing at a few weddings which has been delightful. I can thoroughly recommend joining a choir as you can get sooooo much out of it. Best wishes, Gill
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10-02-2016
09:01
Hi LainieG, Excuse me gate crashing your thread but we used to chat on the radiotherapy thread when we were going through that together and you always made me laugh. I'm so sorry to read of your further problems and treatment. As I'd had BC previously in 2002 and then it came back in the other boob 2014 I had a portocath fitted for the chemo (as had had all lymph nodes removed.) It made life much easier so I wondered if that could be an option for you? I guess there may be a reason that they haven't suggested it. I do wish you all the very, very best , Love Gill x
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28-05-2015
12:08
Hallo Tri. I haven't posted on this thread before but felt I had to after reading your post. There is so much "virtual" support you can get here on-line so don't worry about upsetting anyone. This is the one place you can release your true, innermost feelings and talk to people in similar circumstances, Gill XX
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20-05-2015
09:58
That made me chuckle HelenRose! I'm impressed with your 3 bottles - my GP issued a prescription for just the 1 bottle - she probably looked at my ridiculous post chemo hair, weight gain and aching bones and decided I bottle was more than enough for me!!!! xx
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20-05-2015
09:53
Good news Carole. Good luck for Friday and the outcome. Hopefully once the op is done you'll be able to recuperate in some nice warm weather. Everything OK with you Rattles and the others on this thread? All the best, Gill x
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18-05-2015
10:06
Hi Pandorra, I do agree that "Yes" lubricants are the best so far out of all that I've tried. I asked my GP last week if I could have them on prescription (as bit pricey) so she looked them up and said that sadly they weren't available on the NHS. Did you manage to get some from your GP ? If so I'll try again - thanks, Gill x
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12-05-2015
08:02
Hi again, Glad you're getting some help - I resorted to it all and it was really good- especially being able to sleep again and not lie awake clock watching. Good luck for the scan and keep in touch. Gill xx
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12-05-2015
06:44
Hi Carole. I do think second time around is when you need to accept any help going - counselling, sleeping pills, support groups.It's a worrying time for you and it's good to talk your worries through with someone not emotionally involved I found. Thinking of you, Gill x
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07-05-2015
10:40
Good luck Dollie. Let us know how you get on. My Mammo results were good thankfully but I did have to email breast care nurse after a couple of weeks as they hadn't sent them through!
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