I’ve received a letter today asking me if I want to join a research trial for women taking hormone treatment, Letrazole/Tamoxifen etc. It’s seeing if giving extra support, nurse support, online information etc at the beginning to see if that improves compliance in taking the medicine.
You are randomised into having the extra support, or alternatively usual support offered. I think I’d be disappointed not to get the extra support.
Anyone else on this trial?
Yes, I got asked today at my meeting with my oncologist if I wanted to take part in the study. I said yes and they’re going to contact me tomorrow to discuss in more detail. It would be nice to get the support, but figured it’s good to help out with a study either way as just being a part of it in general might help change things for the better in the future 
@belle1 I agree. By wanting the extra support we are presuming that will be beneficial, which, of course, is exactly what the study is looking at!
Hi @pat, I just checked and it says it’s closed and no longer recruiting patients. I am very much interested to enroll. What region in the UK you are from? My oncologist never mentioned it to me. I have 5 more years of Letrozole. How strange? Do you think is again post code lottery?
Yes, I am, but randomised into the ‘usual support’ group so will just be followed up with questionnaires. It’s a tiny contribution I’ll be making but I’m happy to be part of research in some way. x
@mun4o Oh that’s disappointing for you. I’m in North Wales. Maybe they are wanting participants for all over the UK and your area is already full? I received a letter and information pack through the post. Im seeing the Oncologist on Tuesday so I’ll see if he knows any more. I was a bit surprised to get the letter as I still have to have my radiotherapy yet and havent started on the tablets, though I was told I would.
@southwest123 I wonder if compliance in the usual support group will go up, just because of being in the study? I guess they will look at that as well.
Potentially, I imagine that will be considered too. I’m actually pleased I was put in the ‘usual support’ group. I’ve been very fortunate with hormone therapy and it’s not causing me any bother so the additional support isn’t needed for me but may be beneficial for another participant in the study. I kind of feel it would have been wasted on me! I do feel strongly about this topic, though, so I am glad there is work being done to see if compliance with the medications can be improved.
@southwest123 its good to hear that you have been well on the hormone therapy as quite a lot of people seem to ha e problems 
. I’ve been trying not think about it as yet as I’ve just been plodding through the chemo, surgery 3 weeks ago and still have the radiotherapy to go.
I agree that it’s really important that people are willing and able to take the tablets! I will be saying yes too if they want me.
Definitely do it. You get minimal information & no support ordinarily so even if youre not chosen for enhanced support you have nothing to loose.
Good luck x
I hadn’t heard of this before but after taking Letrozole for 11 months and having multiple side effects I would think the extra support would be beneficial.
For hot flushes and vaginal dryness I had to pay privately to see a menopause specialist even though I was on the NHS priority list. I waited 4 months and went private, it took 9 months for the NHS appointment to come through. I was referred for CBT in June and still not heard. Aches and pains I did see a physio in May with some success but she wasn’t up to date with cancer treatment. I eventually got to see a physio at the cancer centre in September and they have now said I have cording.
I have read so many ladies wanting to stop their treatment due to side effects so the idea of this trial is great. I really feel the oncologist need to understand the side effects more and the impact they have on our lives. Dani Binnington at the Menopause and Cancer charity is a fantastic advocate and regularly gets to talk to specialists about side effect and what we can do. They also provide training for medical professionals to give them more understanding of how we as patients feel.
Let us know how you get on if you decide to join.
@naughty_boob I’m sorry you’ve not been well on the Letrazole. It’s so exhausting not to mention stressful, trying to find out what’s happening, waiting for appointments and chasing people up, without feeling unwell on top of all that. I’ve been very lucky with my breast cancer treatment so far as it’s all been plain sailing with appointments etc. However I need a gynae procedure under GA done fairly urgently, which had to be delayed because of my breast surgery, and I seem to have disappeared from their system Such a contrast to the breast team.
Thanks @pat . I’m doing ok and just muddling through with the side effects.
I’ve had some immunology tests for nut allergy delayed due to my breast cancer diagnosis. When I finished the Herceptin I called the secretary straight away to say my immune system should be ok 3 months afterwards and not to forget about me!
I hope you hear about your gynae appointment soon.
Thank you, @pat. I share my positive experience of Tamoxifen as it can seem that it is almost certain it will cause difficulties, at least that is how it felt after reading lots of people’s stories when I first started taking them. I had my follow up/sign off from oncology recently and said I have no side effects and was told I was “lucky”. That got me thinking again about this research project. There is lots of information about reducing side effects of Tamoxifen most notably around maintaining a healthy weight, not drinking alcohol, not smoking and regular exercise, all of which I do. Am I lucky? Maybe. Am I following the recommendations and this is stopping any side effects? Also maybe, but that was not even mentioned (and I still seem to refer to myself as “fortunate” rather than as “doing everything in my control” which is interesting). It will be good to know more about what the support is offered to participants as I’m not sure that being classed as “lucky” or “unlucky” is particularly helpful or gives any sense of control.
I hope you are recovering well from your surgery. x
Hi yes I’ve signed up to it.
I was asked when I attended my 1st oncology planning meeting & this week I met with one of the practitioners after my radiotherapy session.
I completed a survey, it took about half an hour to complete. Was straight forward questions about my experience to date of breast cancer. I will be contacted again I believe in about 8 weeks time.
@betsydale Have you been randomised into one group or another yet?
I was phoned today by a research nurse but couldn’t speak to her as i was on my way out. She’s going to phone back next week.
Hmmm I dont think so. I think i’ll be informed of that the next time I attend.
I had to complete a consent form this time & a personal experience survey.
Improving outcomes always sounds good doesnt it 
@betsydale Yes it does. Just from reading this forum its seems that quite a few people give up, or consider it, because of side effects so, hopefully, this may help to reduce that number 
I guess they collect all the information, put it into the computer and then you are allocated one group or the other.
I’ve been prescribed exemestane & so far no immediate side effects just some hot flushes (again) although I had started getting those straight after my op & before starting meds. I’ve been post menopausal for about 18 months 
.
It will be interesting to see what group i’ve been placed in. The practitioner did say about having access to their website to see how user friendly it is too.