Thank you all so much for your kindness.
The day I got the results I also had a biopsy that went very wrong. So ,I think that added to my anger.
I think when something stops working we have to grieve for the friend we have lost ,but I am getting there .
It is hard work staying positive .
Cancer is a bully !
Love and hugs to all
I understand fully , how the anger takes hold, wish I had eaten cake , drank more and never topped smoking 30 odd years ago. But to answer your question I had 8 months on faslodex, I found it very easy both in the injections being given and , had no side effects.
I am now on Taxol, well just finished , found it a bit rough , with long lasting UTI'S , hope it stops now ive finished
Hope you are ok on faslodex xx
take care xx
A message for Marie...just to say that I have been on Faslodex and found it by far the easiest of my secondary treatments, yes the injections are uncomfortable but not that painful. My lovely nurse makes you lie on your side and injects very slowly so your muscles are relaxed. I've also read that it helps to warm the phials as the liquid is quite viscous, you could ask them to do that.
I have been heavily treated with hormonals since 1996 so it didn't work for me for long, a shame because it had no side effects. Wishing you a long and successful journey with it xx
Anneemay, so sorry to hear about your news. i think getting a second opinion is always a good idea. You don't need to ask your oncologist, just save. up your pennies and make an appointment with a professor of breast oncology. i do this myself from time to time, have found a most wonderful guy who is always so kind and positive but honest at the same time. i find that hospital oncologists are either wonderful or extremely arrogant. the one at my hospital won't see me at all simply because he found out i'd gone for a second opinion
and i have to see a doctor there instead. i know this is unacceptable and that he is very wrong but we are fighting for our lives here, so think of yourself, don't think about wounded prides and go for it.i see the prof once every 18 months and always come out crying with relief.
Marie, thinking of you aswell and sending love to you both and everyone here.
Marie, Sorry the EE combo has failed. A second opinion is a good idea! I don't have any experience with faslodex.I've only had the one hormonal metronome. My experience has been chemo. Have you done chemo? FF
Anneemay, There isn't much I can add that hasn't been said, so I will helo you be angry! Grrrrrrrrrrrrrrrr!!!!! The wait time is horrible!! Especially when you just want a POA and to get on with it!! Hugs, FF
Hello Ann, so sorry I got you mixed up with Marie re Faslodex! Doh!
Sorry to hear that the Cape door is closed to you, but obviously you don't want to be that ill again! Good luck with your new treatment that your Onc has planned for you.
Thank you to everyone for your support and understanding, Barton,I believe Marie123 was asking about Falsodex. Also my oncologist has said that she would not use Cape on me again even on a lower dose because I was so ill on it, possibly due to a lack of an enzyme called dpd which prevents my body metabolising the drug. She said that I was the worst case of ilieitus she has seen in the 12 years that she had prescribed Cape !!! So that avenue is not open to me. Ann xx
Hello Anneemay, sorry to read of your anger and despondency - something we have all known from time to time, but it doesn't lessen the distress when you are experiencing those feelings. I'm afraid I can't help either re the Faslodex, and sorry to read you are having to leave Cape after such initially successful results. Perhaps that is something you could revisit at a later date at a lower dose? I just wanted to offer you some support, and to let you know we are all thinking of you. The waiting times for results are horrible. Hope you manage to get through the next 10 days without too much stress.
Hugs and best wishes. Barton.x
Mnay thanks Moijan , for your kind words, may seek a second opinion.
Feeling more despondent today following a trip to the hospital yesterday. My oncologist had arranged a ultrasound of my left breast and axilla to give her more info. I ended up with additional mammography and biopsies to both areas. I have a small nodual underneath my left breast on top of a rib which, you would not consider breast tissue and enlarged lymph nodes in the axilla. Results won't be known for 10 days for my oncologist to determine whether my planned treatment is the way to go now. So more uncertaintity over the next 10 days equals more anxiety, which occupies my daily thoughts.
I may discuss getting a second opinion with my oncologist just to explore every avenue open to me. Ann xx
i am also sorry, that you too are in the position you are in.....I have no experience of Faslodex, but hopefully you will have a good result from it.....give it a good go at working, but if not, then maybe you ( if you feel you are whizzing through your options), might consider trying a second opinion.
very best wishes
was wondering which kind of bc you have? Mine is lobular, oestrogen pos, but has mutated a few times.
so sorry you are in the place you are.....this disease isnt a kind one( if in fact any of them are!)
one suggestion I can make -is to also ask for a second opinion....my guess is that maybe you are under one of the London hospitals...? Well, if you are under Guys, ask to try a second opinion at Marsden or vice versa...or the Christie.....
i understand exactly how difficult we feel, asking for a second opinion...we worry the onc will be upset or offended...but actually, I believe the best oncs welcome this when their patient goes through a difficult patch...
lets face it...just before we see them they even gather all their consultant colleagues in a kind of conference to discuss each patient and see if everyone agrees the best way forward.....different hospitals have different trials going on, or different protocols for treatment, so chances are - a second opinion at an alternative centre of excellence might just bring forth an approach that works well for you.....
And, remember, this is your life, your body xx
Anne, whatever happens, I wish you the very best results for your treatment.......
Can I join your rant. I too am feeling angry . I have 'obeyed the rules' , but cancer came looking for me too
Routine mammagram that showed the double whammy in 2013. I cannot come to terms with feeling well and then told treatment is not working. I know I am lucky not to be in pain , but find it shocking to be told of progression. The EE combo has been stopped , so now on Faslodex.
If anyone has any experience of Faslodex I would very much appreciate advice.
I feel like I am whizzing through my options.
Best wishes to all , I know lots of you are in a worse postion , but this Marie is bloody annoyed !
I am going to have a rant about my own body, I know it's emotionally negative but I need to get it out of my system.
My recent scan has shown progression of the disease from my pleura,lungs and bones, to liver,left breast and axilla lymph node. There is also something going on in my uterus, although I am not showing any symptoms apart from increased pain in my back and right side. This could be due to pleura effusions that are increasing since having the Pleurx catheters removed at the end of January.
The scan I had in December following x 2 cycles of Cape showed that I had responded positively to the treatment with no new disease detected, unfortunately I became very ill needing to be hospitilised with Ileitus caused by the Cape. My oncologist prescibed Tamoxifen as the scan was so positive and the recent scan was to see how I had responded to this treatment.
The reason I am so angry is that if I had been able to tolerate the Cape, which had seemed to be effective in holding the disease and improving my out come, I possibly would not be in the position I am now.
I am now scheduled to start weekly Taxol infusions on the 15th of this month to hopefully stop the progression and any symptoms that may occur. I am trying to prepare myself mentally for the treatment but finding it difficult as I feel my body keeps letting me down.
I have never smoked, have tried to live a healthy lifetyle with diet and regular exercise and am not overweight. So I keep asking the question what else could I have done to reduce the risks.
The only conclusion I can come to is it is in my genetic make up, as I have 4 sisters who have been diagnosed and treated for BC. None of us are Brach 1 or 2 so we have signed up to the Guy's Genome research project to try to identify whether we have a faulty gene. We won't get any answers if any for 2 years though.
Rant over and feeling a little better. Thankyou for listening. Ann xx