Hi Ladies
I would be grateful if some-one could offer me some advice. I have been on zoladex and letrozole since bone mets (hip) were diagnosed at same time as primary Mar 2007. I had my hip repaired, (Mar 2007) followed by a mastectomy and auxilliary lymph node clearance (2 /18 nodes affected) 3 mnths later I have been reatively well since then and continue to work full-time. However recently I have ben starting to experience feelings of panic regarding how long my medication while remain effective. How will I know the treatment is no longer working? Will I have to wait until I develop other symptoms? Will the side effects assosciated with the hormone diminish? Any advice would be gratefully appreciated
Your fears echo mine - I am on Tamoxifen - diagnosed primary and secondaries to the lungs also in March 2007…However, I have a really good support service offered by Guys Hospital…a nurse calls me about every 2 weeks or so…I have poured my fears out to her about how long, how will I know if…etc…she has reassured me that these feelings and fears are quite mormal and understandable…
Although I am not being treated at Guys it is a service offered after I had radiotherapy there…
My own hospital does insist on regular scans to see any changes. I was scanned in January and have another lined up for October…
Obivously it is a bit of an ordeal to have the tests done, but hopefully if I get favourable results, it settles the mind for a little while.
Are you monitored at all…
As regards the side effects, I have found that some of the Tamoxifen ones have diminished…I don’t feel quite so hairy (facially!!!) although I do still get quite severe cramp in the legs at night. I have been thinking about asking to come off of the drug and change to another but I am fearful of wasting one of the lifelines…decisions are so hard.
Hope this helps a bit and that someone with bone mets can advise further.
Regards
Heather
Hi
I was dx with bone mets in April this year. I’ve just finished a course of chemo and am now moving on to Letrozole and possibly Zoladex (again!) if the chemo hasn’t pushed me into the menopause. I’ve been told that my follow up tests will include a CT scan every 3 months as well as an ultrasound as I also have a local recurrence. This will go to 6 monthly eventually if everything is stable. Maybe you can talk to your BCN and/or onc to find out how they keep an eye on things? If you’re already having scans etc then they should show up any progression in the disease and other treatments can be considered. I attended a secondary BC day yesterday in the South and there were quite a few of us ladies there, all of whom had received different treatments over the years so there does seem to be various options available.
Nicky x
Thanks Nicky and Heather for taking the time to reply. I do attend the hosp every 4 wks for Pamidronate and also see ONC every 3mths -always told I look soo well and everything is fine!!! Often feel like saying ’ Shouldn’t I look well…???’ I am sure I am just panicking at the moment because my next follow up appt is next week and every ache and pain has to be something sinister – can you relate to these feelings/ Anyway it has been helpful to chat and hope to chat again sometime. Of to work now so that will give me different stress and strain for the next 8 hours!! O the joys!!! Hope you are both feeling well to-day
I bet the thought of the follow up appt is what’s making you nervous and finding all sorts of reasons to worry, I know mine do! I’m due an appt with my onc next week after CT scan, blood tests and ultrasound and although I think everything is OK I’ll be a bag of nerves beforehand. If it’s not OK then I’ve just been through 4 months of FEC for nothing! However halfway tests showed improvement so I’m hoping that continues. I’m also due my 1st pamidronate on it’s own rather than with chemo so I’m hoping the overall visit will be far better and shorter than I’ve been having. I’m sure your onc will take any worries seriously and, fingers crossed, there’s nothing to worry about and you can go about your life until the next appt with no worries. Just to let you know that everyone says how well I look, and that’s having just finished chemo so I’m quite surprised but I do find it a boost. Also, at this 2ndaries day this week I thought we all looked well and I said to my OH that an ‘outsider’ would never have guessed that all the women there had secondaries - I certainly wouldn’t have. Long may it last for all of us.
Take care, hope all goes well next week and let us know how you get on.
Nicky x
Hi Nicky
I am sure your are correct- I am suffering from PAT - pre appointment tension! PMT is a thing of the past due to zoladex. I hope everything goes well with your appointment next week. My appointment is on Friday -have to keep busy until then. It is great being able to chat to some-one who truly understands. Anyway -off to feed the family and then of to a Salsa class -that will keep my mind of things and provide other class members with a laugh at my lack of dance sense!!
Take care and please keep in touch
Hi,
Just wanted to add my own experience of hormonals. They are very, very effective and in my own case ( was diagnoised 9 years ago with primary and secondary cancer) they kept me well for most of that time. Yes, I did have ups and downs (we all do) but only now have I had to change to xeloda. So keep the faith, when they work well, they work very well.
kiwi
Hi Kiwi - it’s always good to know of ladies going so long on less invasive treatments when they’ve got 2ndaries, especially when you’re diagnosed with them yourself. It’s what’s kept me hopeful and stories like yours are such a boost. I hope you cope well with xeloda and it works well for you.
ot2walk - very difficult to not think about appts! Hope you can keep busy until next Friday and that the appt goes well, let us know won’t you? I’ll make sure I post on here once I’ve heard, again hoping it’s good news for both of us.
Nicky x
Nicky, pamidronate usually takes an hour and a half for the IV infusion. Take a book / a friend / an mp3 player! I have bone mets (dx 3 weeks after primary) and am on letrozole, still working well after 2 years, never had chemo.
ot2walk - “PAT” yes indeed, another one for the abbreviations list?? Pre-appointment tension, don’t we all know … aaarghh!
Do let us know how things go.
Hi
I get these worries too. Diagnosed a year ago with secondaries in bone, peritoneum and other places but not lung or liver. Prognosis was pretty awful until the histology showed ER+ and PR+, Was put onto tamoxifen and zoladex and they have done wonders! Shrinkage everywhere but now have one node that has grown a bit…grrr!
Anyway, I like taking my tamoxifen and I wanted to stay with it for longer if I could. Anyway, we’ll see- it would be an aromatase inhibitor next- I just don’t want to go on to my second line yet.
Kiwi, you are my inspiration- so good to hear of people like you and thanks for putting some words on here to calm me down a bit!
Anne x
Kiwigirl - I just wanted to let you know you have given me a lift too. I am very hormone sensitive - and actually was absolutely fine until I stopped Zoladex for primary BC and in my mind that is evidence that it does work too. Not on any hormonals at the moment as on the avastin trial, but good to know there is some hope that the hormonal stuff works if and when I need something else - potentially without automatically being chemo. Thank you for sharing your experiences. We all need to live off hope! x
Hi KindredS - I’m sure I was fine until I stopped the 2 years of Zoladex. Obviously no proof of this but I’m very hormone sensitive so I’m back onto AI’s next week and more zoladex if my chemo hasn’t made me post menopausal. If I’m not I’ll want my ovaries out asap so I don’t need the 4 weekly stabbing! Good luck on the trial.
mrsblue - I’ve already had 6 pamidronates so know what to expect in terms of time etc but thanks for the reply - I’m just hoping I wasn’t getting any side effects that the chemo was hiding from me! Unfortunately it will be hunt the vein next week as FEC has shot them to pieces and need to see how we progress from there. Glad the bisph and Letrozole are working well for you, I’m crossing my fingers that they’ll be good to me as well.
AnneTh - glad you’ve had such good results as well but sorry to hear there’s been some changes - good luck with that one.
Nicky x
Hi ladies
just to let you know everything was OK at the hosp on Friday. I have to have another bone scan before my next appoint in Jan. One good thing to come from the appointment is that I have been referred to have my ovaries removed… so hopefully I will soon be stopping the zoladex!!! Strange how you can get excited at the thought of more surgery. I know I should be pleased that I received no bad news at my appointment but for some-reason I feel rather down and concerned -do not ask me why I can not put my finger on it … sorry if I sound depressing , I certainly do not mean to be. Anyway thanks to all who offered advice. no doubt you wil hear from me again. Now I have the courage to use this site i am finding it a god send
Glad you had a good appointment - i know what you mean, you come away and you then think hmmm what else and start thinking about things again even if there is no bad news. I think that is perfectly natural and not at all depressing, its justa reflection of the fact we know we have to go back again, but in the meantime I am glad you have had good news at moment,
Cathy