A bit of advice and possibly some hope please

Hello everyone

I have posted here once or twice before and now I’m back again! (My mum has secondary breast cancer).

First of all, I just want to say how welcoming and inspirational you have all been to everybody on here! I am also aware of some of the very upsetting and heart breaking situations some of you guys are currently going through, and I wish there was some help I could offer you.

Just to fill you in, my mum was diagnosed with secondary breast cancer in her bones in September 07. She had two years ‘disease free’ while taking tamoxifen (which obviously didn’t work) and in September she was given Ferma (Letrozole) along with the bisonoposphate, Zometa. Today she was told that the cancer has spread further into her spine. She is now going to start taking Megestrol acetate (Megace).

I was just wondering if anyone had been in a similar situation or is currently taking Megace. What are side effects like? Its just very worrying. It seems to me that the cancer seems to be spreading very quickly. I’m also worried that she has used up/failed on one form of treatment (Ferma) so quickly.

Does anyone have any advice or do you know of anyone who failed a treatment quickly but went on to do well with Megace??

Wishing you all the best!

Nipper xx

Hi nipper

I haven’t been in a similar situation to your mum, but wondered if she was put on a bisphosphonate when first dx with secondaries. When I was first dx with bone secondaries in 2002 it was already very advanced when discovered, and although I was put on bisphosphonates straight away, the disease continued to spread further in my bones for about 5 months. It seemed that the bisphos. kicked in then and the pain went, and the disease stabilised. The last few bone scans have even shown some improvement. I know that no two people respond exactly the same way but wondered how long mum had been on the bisphos. My cancer is her2 positive so the only other drug I am on is herceptin.

Dawnhc

Hi dawnhc

She started bisphosphonate (zomata) about a month later (Oct I think) so she has been on them for about 5 months now. Thats interesting to know that the bisphosphonate helped to stablise the disease after a few months. I didnt know bisphosphonates actually helpd reduce spread, I thought they just repaired some of the damage??!

Thanks for your quick response!

Hi Nipper,

Saw your enquiry regarding Megace, and yes I have tried that one. The main side effect for me was weight gain, didn’t affect my moods much and didn’t really have much in the way of sweats managed about 14 -16 months before the disease spread further. Apparently from what I remember Megace target progestorone (excuse the spelling).

kiwi

Sorry should have said I failed tamoxifen first after 18 months then had to move to Megace.

kiwi

Hi Nipper, there’s also Faslodex, which is a newer hormonal. Has your Mum been offered any chemotherapy? I was diagnosed with bone mets in 2003 and have had a good run with hormonals but might be having chemo soon. Best Wishes to you both…xx

Hi Belinda

She hasn’t been offered any chemo yet. It just seems that if Megace doesn’t work, then she has used up the hormone options very quickly, as she was only diagnosed with secondaries 6 months ago. I really hoped that Ferma would have worked as so many others have said they have been on it (or similar hormonal drugs for years), so we are feeling a bit gutted. I’m not very hopeful about Megace.

xx

Ps Belinda

I forgot to say, I always like reading your comments and I find you very inspiring. I was sorry to hear that your hormonal treatment might be reaching an end or changing x

Hi Nipper

Just to say that I started on Megace about a month ago - too early to tell you obviously whether it is being effective or not, and of course people react in very different ways to the different drugs. No side effects really - a tiny bit of bleeding recently and I was warned about the dangers of weight increase. My onc explained to me that it was from a 3rd group of hormone treatments (Arimidex and Tamoxifen being 2 common drugs used from the other 2 groups) and each group works in a slightly different way. So having had Arimidex and Tamoxifen already, he wanted to try me on this 3rd type. Think Letrozole is from the same group as Arimidex (the aromatase inhibitors). He’s hoping that because it works in a different way it may be more effective with me than the Arimidex and Tamoxifen have been and said he felt hopefully it should “hold things” for a minimum of 6 months but didn’t expect it to work for more than 18 months.

Best wishes to both you and your mum

Kay

There is also aromasion (also called exemestane) which is another hormonal drug like arimidex, but it has a steroidal part to it. It works for about a third of women who have been through arimidex and tamoxifen.

Deirdre

Femara (letrozole) and Arimidex (anastrozole) are closely related drugs. I’m on letrozole, which seems to be the minority option - no idea why - hospital policy?

Thanks for the responses. I was just wondering if anyone knew what options there were for bone secondaries once all the hormonals have all been tried?? Does chemo work on all types of bone mets??

Also, are there some people that manage bone mets on bisphosphonates alone?? So much about this disease that I don’t know!!

Hi again nipper, there are several chemo’s that are suitable for bone mets. If I have to have chemo next I’ll be guided by my onc but it’s likely I’ll be offered taxotere first. Some do manage on bisphosphonates alone. I think for most of us though over time the bc finds a way round the hormonal treatments and chemotherapy might then be much more effective at knocking things back, hopefully for a good while. Love to you and your Mum…xx