Hi all. I’m a bit confused.
I’ve got bone mets dx Jan 16 and was put straight back on tamoxifen which I’d have for 5 years with primary bc. I read others of you talking about letrozole Which I think is another ER+ hormone treatment… Am I right? (I’m ER +)
My question is … are some of you on that as well as tamoxifen or is it either one or the other? Was expecting something more than tamoxifen… They are sorting out biphosphates for bone strengthening soon.
I have spent last 2 months with big problems with lungs which is how they stumplbed a cross the bone mets… now my onc thinks is asthma rather than mets in airways… So he was considering chemo but now holding back on that a while so perhaps he was waiting to be clear about that. It’s been 2 months of a complete waiting game where he told me to bring my wedding forward from June because of the airways problems… I really have believed I only had months left. And now fingers crossed (another chest ct on Thursday should confirm) that it’s really asthma.
ill be glad when I’ve got a treatment plan in place for sure. So back to the question (!!) do you have both tamoxifen and letrozole ?
many thanks X
Hiya. I will b the first to reply but I’m not sure if my information is correct.
There are several types and of hormone drugs but I think tamox is mainly if you are pre menopausal. There is arimidex , letrozole and another one beginning with E…for post menopausal. Think they all work the same sort of way and its just getting the right one.
The bone strengthener is to protect the bones from breaking etc. I think I was told they fill in the gaps of bone that is damaged by cancer and coat them to protect.
I hope that you get the correct dx and then the treatment plan can start.
It’s a scary time …after five months I’m still a quivering wreck when I see oncologist.
Hugs xx
Hello Helen
I was ER+ but I am now ER- because hormone drugs do not work for me. I started on tomoxifen back in 1996 had that for 5 years given ll clear so came off it. Then when my dx in 1913 it was still ER+ but after Letrozole didn’t work the onc then was considering putting me on tomoxifen I wasn’t keen but he decided to put me on Exemestane (tomoxifen is not just for pre menstral Carolyn) anyway the onc decided to put me on a combo with Everolimus and Exemestane which worked very well for 16 months but when it stopped I became ER-. I have chest wall and left breast tumour tumour in sacrum (spine) left pelvis femur tibia right femur and ribs and I feel I am not going anywhere yet because if my treatment stops working there are others to try.
So don’t give up hope Helen I don’t think your onc should have said bring the wedding forward until they know for definate what your results should be. But keep on to them for proper answers they should not give you such stress at a time like this.
The bone strenghner may be Denosumab I think the majority are on this one Just a quick jab in the stomach
I shall keep my fingers crossed for you that the results will be ok let us know how you get on
Love xxx
Hi Helen, I had tamoxifen for 5 years after my initial dx and am now on Letrozole. I think Carolyn is right in that Letrizole is forvpost menpausal ladies but I recall my onc saying he might put me back on Tamoxifen as it did the job in the past. I don’t think they use both together. All the best to you xxxx
Hi Helen, I’m also one of the er+ gang, looks like you have had your answers but i will give you my story anyway. Was put on tamoxifen when dx with mets to hips ribs and spine in March 2014, last year I was changed to letrozole as I had stopped responding so well to tamoxifen, it is correct you are on only one of these not both at the same time. When I got my bone met dx I assumed I would be on chemo and and didn’t see a long future ahead for me, Well I went straight on hormone treatment, do not be fooled by this little tablet they are powerful little uggers! I’m also on denosumab injections and zoladex.
Take time to absorb things Helen it is a massive shock to be told you have this disease but as you will be able see by reading our stores it can be managed and you can still lead a relatively normal life, so go and look forward to your special day!!
Hugs Janette xxxx
Grr. Just going to have a little moan and its trivial really but in eight months I have been having letrozole …I have had four different brands. The last one cipra …I have had for four months …it’s settled down with se but the last few days I felt out of sorts …just noticed the new pack I opened is accord!
Phoned boots and they say that unless the doctor authorises a certain brand …I have to have what they have in stock as they buy in bulk for the best deal.
There is a difference in brands and once again I feel palmed off with a cheap version.
Rant over now …
Xxxc
I have no choice as boots are attached to our doctors surgery so they are the preferred chemist.
Never mind I will grin and bear the change of brand but there is definately a difference.
Xx
Hiya Barton.
Yes I did think about using the other chemist but will use these tablets this month and hope they settle. A lot of people poo poo different brands but there is a difference .
When I was on tamox …I got the original brand and not generic and that’s why I didn’t get the se too much.
Weather gorgeous …two of grandchildren now gone so just got the twelve year old …he’s still asleep ! Roast dinner in so yum .
Hope u can find a nice sunny spot to enjoy some UK Sumner.
Hiya fredflowerpot!!
I think the zoladex injection is a monthly treatment to start and finish the menopause as you are young and then the exemestance is a hormone therapy to stop the oestrogen feeding the cancer. There are lots of hormone pills …tamoxifen , arimidex and letrozole and I think a monthly injection fulvestrant ( or something similar) …your oncologist will decide which is most suitable.
They are powerful little pills and always the first line in secondaries before other options like chemo etc.
My oncologist says that they can work for 3 months or up to 3 years …everyone reacts differently.
I would imagine that you are plagued with hot flushes at the moment and there are a lot of threads with cooling ideas here around the board’s.
Hugs xxx