After using Tamoxifen for 18 months successfully following her initial diagnosis in 2005 Vicky, my wife, was put back on it following her 6 cycles of Taxotere last year. Unfortunately it has only been effective for 6 months or so this time around.
We are waiting for her consultant to get back off leave so that we can talk about what treatment should come next. (Vicky had Zolodex aafter the Tamoxifen 1st time round, then 6 cycles of EC, 2 of Vinorelbine and then 6 of the Taxotere). So any thoughts on what might be coming her way would be useful please.
The registrar we saw yesterday measured the primary at 11x7cm, nodes are clear but mets in spine, pelvis, pituitary gland & spread to muscle behind her right eye within 2 months of finishing the EC chemo at the end of 2008. Bone mets have got steadily worse so Vicky is now supposed to use crutches to get about.
In some ways I guess I’m having a bit of a rant, so please forgive me. Any advice would be useful and any questions readily answered.
Stuart
Stuart,
I’m sorry the tamoxifen hasn’t worked this time round. There are several other hormonal treatments available, and it may be that she’ll be offered an aromatase inhibitor such as arimidex. I have just started exemestane, which is similar. I hope she gets a treatment plan sorted out soon as I know I always feel a bit better when I know what’s next
best wishes,
nicky
Hi Stuart,
I’m sorry Vicky and you and left without her consultant at the mo. I don’t have too much thoughts because I’m relatively new to this horrible illness (dx June, 09). I’ve been on Tamoxifen for about 3 months now (after 6 months of paclitaxel), and it’s already showing clear signs of failing! My onc has referred me for scans and is going to start me on Zoladex straight way (yes, before the results come back).
Thought just to mention my situation to let you know that you are not alone in this “Tamoxifen failing” club at the mo! It’s awful while waiting for the new treatment plan to be sorted out and started. I’m constantly getting voices in my head “how worse will my bone mets get before my new treatment plan is start?” I think we will all feel better when those cancer cells are dealt with properly.
Take care
I’m a bit calmer today but thank you both for your kind words.
Vicky has a very good Macmillan nurse as well as a good palliative care team that she sees up at our local hospice on a regular basis, so she’s being pretty well looked after until the next course of action is decided upon.
We always knew that Tamoxifen would only work for so long but I guess we were hoping for it to be a similar length of time to the first time around. I doubt they’ll try the zolodex or arimidex again as they weren’t hugely effective when Vicky was on them before but I guess we’ll just have to wait and see what our consultant says next week.
(He’s very good by the way, just a pity that he needed a holiday the same as everyone else does 
)
Thanks again and take care, Stuart
Ok, we saw Vicky’s consultant on Tuesday (he’s been looking after her for nearly 5 years now) and she has had x-rays of her pelvis and L & T spine. We are also waiting for appointments for full MRI & CT scans.
Vicky already has a lot of metal work in her spine due to a collapsed vertebrae and with the condition of her bones even with biphosphonates, more surgery is out of the question unfortunately.
Her Oncologist wants to see the results and then give her some radiotherapy to aid the pain relief but in his own words chemotherapy is now a bit hit & miss. Vicky is also waiting on an appointment to see about bone cement for her pelvis to strengthen it as the orthopaedic surgeon she was referred to decided that a hip replacement would cause unnecessary pain and may not resolve the issues anyway.
The only positive thing to come of all this is that in the car on the way home Vicky told me that she’s not ready to give up yet. It’s all about quality of life now.
Hi Stuart,
Thanks for keeping us updated despite the fact that you both had a tough time. Hope you get the appts soon and the results are not as bad as you are expecting.
Not sure whether you were able to follow my development on other threads. If not, here it is in brief: my last scans revealed further progression and liver mets, so the Zoladex plan was cancelled and I’m back on FEC chemo and having a pretty rough time of it. My onc didn’t use the phrase “hit and miss”, but he’s very unsure of whether this will work and would like to keep a close eye on it. If any signs of it not working is spotted, he’d send me for scans straight away and change me to another chemo. We all need to keep fighting!!! Will power is really important.
Take care and keep fighting
Hi, just to let you know I had a hip replacement 7 years ago as I was diagnosed with both bone mets and breast cancer when my hip spontaneously fractured…my hip replacement has been great and trouble free. I have a very long pin, nearly to the knee…so if things get easier for Vicky treatment wise maybe it might hopefully still be an option. I also know others who have found a great improvement after bone cement has been used (and I think plates, titanium?) can be used to strengthen the pelvis. Tamoxifen was my first treatment which worked well for 18 months. After Arimidex, which worked for nearly 3 years my next hormonal, Aromasin, failed after a few months and I was started on Xeloda (Capecitabine)…(chemo tablets) this treatment is still working and has been effective for over 2 years now…for me it’s been a great quality of life chemo. I’ve had lots of energy and it just does not feel as though I’m on chemo. Just wanted to let you know about a chemo that might, may be an option for Vicky…Take Care both of you…xx
Thanks for your kind words m1yu & Belinda. Neither of us are ready to give up just yet but we both recognise that treatment options are running a bit thin on the ground.
Belinda, I’m glad to hear the Xeloda is working well for you and I think Vicky’s oncologist may well try her on this but wants to ensure that she doesn’t end up with permanent nerve damage first.
m1yu, Sorry to hear about the further progression 
FEC isn’t fun as I recall how Vicky was with it in 2008.
Thoughts are with you both 
Hi all,
My names Linda and I am new to the site. I had my op on March 4th. Start Rads next Wednesday 5th May.
I am on Tamoxifen also and at the risk of sounding daft… How do you know or what do you all mean they are failing?
Again soz for sounding stupid but new to all this and very confussed.
x
Hi Linda,
Sorry you have to join us, but welcome… and it’s not a stupid question.
For me, because I didn’t have an op, I’ve got the lump to refer to as an indication. When it is growing and other (new) lumps emerging, I kind of panicked and called my onc and he sent me for scans straight way, which confirmed my worst fears. Also, my period came back, which was stopped during chemo. However, my onc did said period is not a reliable indication of whether the Tamoxifen is working or not.
I’m sure you will be “monitored” on a regular bases while you are on Tamoxifen (I was asked to see him every 6 weeks, then that reduced to every 4 weeks when I felt a bit insecure). Hope your Rads go well and if you need some info in coping with side effects, I’m sure you’ll find lots of useful tips on this site (I didn’t have it so not sure what it’s like).
Others might be in a more similar situation than me (they might have had op before taking Tamoxifen), hope they come along and might have some more helpful tips.
Take care xx
Thank you so much for your reply. Isn’t this such a confussing time for us all?
Wow what a roller coaster!!
Ive never even been on a chat site or anything like this before but I feeel so much better now knowing that everyone is here and Im not alone.
xx