71.2K
members
210
online
1.2M
posts
Turn on suggestions
Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type.
Showing results for
- Home
- :
- About ponsmuir
ponsmuir
Member
since
17-02-2013
79
Posts
0
Hugs
21-10-2014
09:38
Good luck with the blood tests. It's an expensive treatment costing £3k a month, funded by the Cancer Drug Fund, so yes, a limited number are eligible for it. My Onc is hoping that as a I had a great response to Letrozole (lasted 9 months), I will do well on this. We will see! I know of one other person who is on it, and she has had a couple of mouth ulcers. And another couple of people, one who did well for 22 months and the other for whom e/e did nothing at all. Were you offered Faslodex, by any chance, as an alternative treatment?
... View more
20-10-2014
07:12
Hi Nicky and Kimmy I'm glad to hear from others on the e/e combo. I have just posted under the treatments section. Hoping to see you both there xx
... View more
20-10-2014
07:06
Glo, Thank you so much for bumping the e/e thread up. I was getting the impression that fewer people were on it? Like you, I'm new to this combo, my second month, and am taking it as a maintenance treatment after 6 cycles of FEC chemo which was hard but effective. So far I haven't had the dreaded mouth ulcers, though I have been warned. I checked it out with my dentist who said they are caused by a deficient immune system. So no point really in doing all the mouthwashing until they appear. Good dental hygiene is a must of course and I've changed to using a soft children's toothbrush. I'm still on the 10mg dose - are you? My Onc is very careful to keep an eye on my neutrophils as they can crash. I do get joint aches and pains, though. Best of luck with the combo x
... View more
13-03-2014
08:02
Hello Danica, I'm sorry you have this worry. We are all different so what suits one person may not be effective for another. I did well on Letrozole after my very extensive bone mets were discovered in December 2013. After 9 months it was beginning to stop working and I went on a hormonal trial. Sadly that did not work and I now have mets in my liver. My Onc has started me on Capcitabine - I am on day 10 of the first cycle so early days...it's an oral Chemo and there is lots of info on a dedicated thread on here. Your Onc may have a different suggestion but I thought you'd like a reply. All the best.
... View more
17-02-2014
09:14
Desi, I was within a whisker of spinal cord compression just over a year ago. I was in a lot of pain with it but had no idea what was wrong with me. I was admitted as an acute case through A&E and spent 3 weeks in hospital. I had extensive rads, steroid treatment and Letrozole. Letrozole can give a lot of people dull aches in joints and bones which can be alleviated with Paracetemol. I had a great response to it and discomfort even when it was working well. Unfortunately Letrozole is now less effective and I am taking Irosustrat on a trial to help with the blocking of oestrogen. I have more aches and pains than before, 5 weeks into the trial. As someone has said on this page, it's a question of holding one's nerve and trusting that you'll be rescued quickly in the event of more spread. Not an easy journey, but there are lots of treatments and help available.
... View more
13-01-2014
08:38
Dear Scottishlass (rubbish spell checker again gives me Scottish Ass) It is so good to read you here. You were such an inspiration a year ago when I had a dx of very extensive bone mets. Thanks for helping me remain positive with the hope that 'a few years' might become a bit more with all the developments going on.
... View more
13-01-2014
08:34
Go get it checked out properly. Ask your GP to refer you to an Onc. You may be able to pick your hospital so a bit of homework would be good. Don't get fobbed off. If you have a history of BC, you need a proper check. It may be nothing to worry about, but if there is cause for concern, the sooner it is addresses the better.
... View more
12-01-2014
06:07
Beanbob - may I ask why you changed? I've been on Zometa a year now and agree the infusion is not ideal. But ok. I think it's cheaper than Denosumab which is why I have it.
... View more
11-01-2014
10:25
Sorry to share your worry about stability at the moment. I know how you feel Coco, but we are doing something about it. I found rads a great help last year and have gone from being bedridden to walking well. Rads certainly reduced the pain considerably. And yes, the tummy issues sound familiar but they come and go. Hope they will for you soon.
... View more
11-01-2014
10:20
Thanks Vercors. My Onc told me my tumours 'chuck out' a lot of the right sort of protein to make the markers useful. I loved her technical terminology . Other people's don't. I am glad that this is the case with me as on this Iris trial she will see how I'm going after 6 weeks and put me on something else if needs be. Good I don't have to wait 3 months for a scan.
... View more
11-01-2014
10:37
Glad to hear you're stable on Letrozole, Vercors. Long may it continue. My Onc has found my tumour markers to be a very reliable way of finding out how I am doing. It just shows how individual we all are, and how what works for one person may not for another.
... View more
11-01-2014
10:25
Helen, I've read this too but no one has mentioned it to me. I am not a fan of grapefruit so it's not a problem. I love satsumas though! I should imagine that as the specialist who wrote that on the Macmillan site is so specific. it just applies to grapefruit. Ask your Onc if you are worried. Or maybe a pharmacist.
... View more
09-01-2014
10:22
I'm joining this thread as, like Chris 007, Letrozole has stopped working as well as it did after a year now and I now have progression in my liver. I am starting a trial on Monday to see if Irosustrat will help block the other oestrogen pathway and will be reviewed after 6 weeks. How is the Xeloda going, Chris?
... View more
09-01-2014
10:13
I'm not on Fulvestrant but yesterday was asked if I'd like to take part in a screening AstraZeneca are doing to see if AZD4547 used in conjunction with Fulvestrant could slow down progression. I just had to give permission for a sample of my 2012 biopsy to be sent off to a lab in Belgium. If it is found to have an increase in the number of FGFR1 cells (30% of tumours do) I am told it might increase treatment options further down the line. I thought I had nothing to lose by taking part and possibly something to gain.
... View more
08-01-2014
02:50
Helen, It's good to hear you have an Onc appointment coming up soon. Letrozole has stopped being as effective for me after a year and I am being put on another treatment. It will be great to find out what treatment plans are available to you.
... View more
07-01-2014
01:37
Belinda, Thank you for being such a faithful member of this forum and for giving us relative newbies such inspiration in the roller coaster of this experience. It really helps to hear that if one treatment stops working, another is available and you just have to work through the darker moments of uncertainty. Glad you're marching on with great courage.
... View more
11-12-2013
02:47
Sorry Jo, but until the Live Chat welcomes people who use an iPad, I can't take part.
... View more
09-12-2013
03:27
Hi Helen I am sorry you have had this double whammy of a diagnosis but very glad you are being looked after now and that treatment has started. I have now been on Letrozole for 11 months now (primary diagnosed in 1994) and have had a great response with it. Yes, I have plenty of aches and pains, and my breast where the original tumour was and another one has popped up is also sore. I gave up wearing a bra a year ago. I get scanned every 3 months now as my Onc is monitoring the effectiveness of the Letrozole. I asked about a mastectomy but was told that I have other places affected. Well, I know I have extensive bone mets which are stable for now. I accept that. I have monthly Zometa. I think the Denosumab is more expensive but see that plenty of others are getting it. It's done a great job too and hopefully you will feel the benefit before long. xx Susan
... View more
