Morning all,
Happy new year all round and here’s hoping 2009 brings lots of new cures!
I was diagnosed 2 yrs ago today with a breast cancer and after chemo (FEC x 6) mastectomy more chemo (Taxotere x 6) and Herceptin x 20 and radio therpary, and Zolodex, tamoxifen throughout and contunuing, I finally had nearly 4 months with no evidence of disease, only to be told in November that it has now in my bones as a secondary and has been clearly not responded to treatment…
I have begun the Hercptin immediately and start Taxol asap (16th Jan proposed - exactly 2 yrs from when this started) . I have herceptin and Zometa today.
I was dreadfully ill with taxotere last time and wondered if anyone else had taxol after taxotere and if so whether side effects were the same or worse… or maybe better???
Also should I expect any side effects from Zometa as the lists sound similar to taxotere stuff?
Feeling a bit down as led to believe my prognosis is poor and just turned 41 with not much to celebrate! Thank goodness for wonderful friends and family!
Dreading the future, but know I will cope and fight, and hanging on to the good days!
I’m sorry to hear your news Kate. I was diagnosed with bone mets 5 years ago…still here and still having good days…Good Luck with your treatment. I can’t help on Taxol but I think after the initial infusion (you might have a day feeling flu like) most find Zometa trouble free. I’ve not had zometa yet but have had other bisphosphonates, pamidronate infusions and I’m now on ibandronate tablets and they’ve all been ok. Take Care…x
I seem to follow Belinda around the forums when someone posts about bone secondaries. She obviously rises earlier than I do Mine, like yours, has been a very persistent bu**er. But I was dx 19 years ago, managed 5 years without recurrence but then it was 2 yrs to the next one, then 6 months, then 2 years, then another 2 years to secondaries in 2002. They were extensive bone mets and by then I had used up all the options around at the time in chemos. I was then er/pr neg but they checked on previous tissue and found I was HER2 and I was put on herceptin and have had that every 3 weeks since. I also have bisphosphonates - pamidronate and dont really have any side effects with these. There was talk of switching me to zometa but as pamidronate has kept it stable all these years there seemed no point in switching. I have not had taxol so can’t comment on that - I found taxotere tough as well. Like you I have often felt at the turn of each new year there was little to celebrate. But these past few years I really do appreciate being here to see in each new one. I hope you will be able to look back this time next year with disease that is stable.
Sorry to hear about your secondary diagnosis. I can’t help with Taxol although I was in the chemo unit with ladies who were having it at the same time as I was having Taxotere and I think the side effects were similar. They were given an infusion of Piriton before the Taxol infusion which helped with some of the side effects.
Reading your history it occurred to me that you could ask your onc about the possibility of getting lapatinab/Tyverb. This is a new treatment which was only licensed in the UK in 2008 and - if I understand it correctly - can be effective on those HER2 cancers which do not respond to Herceptin. It’s certainly worth asking about.
Hi Kate, really sorry to hear of diagnosis, and you have had such a lot of treatments too. I found out last Nov that mine was back after 9 months, and has spread, so cannot now be gotten rid of, so know exactly how you feel.
I am starting Taxol along with Gemcitabine on Monday, so will let you know how it goes, I am triple neg though, so no other options for me. I had a really, really tough time with Taxotere last year so will admit I am really scared of what this will do, but needs must as the last 2months of treatment have not been working and the disease is marching through my body.
Hi Dawn! Hope you’re keeping well…I think I’ve become nocturnal. Can’t sleep till 3, 4 am most nights…so have an afternoon nap where I can.
Hi Kate I hope you’re feeling ok after yesterday’s treatments. Good Luck for the 16th January.
I had 4 taxotere during primary breast cancer treatment…on a three weekly cycle and found it tough. I was recently on a weekly regime of taxol (3 weeks on, one week off) and found side effects not as bad…mainly fatigue quite badly on two days each week.)…didn’t get any of the muscle aches.
I only had 8 weekly treatments (it didn’t work on the tumours in my neck) but many women have far more…there’s a thread about taxol which you might find helpful.
Hi Kate,
I have bumped up the Back on Taxol thread hope you find it of use. I am on pamidronate for my bones, my onc said if I was in better condition he would be recommending a transplant, been on pam since May and my bones are a lot better. Not had joint pain for a few months and knees not creaking as loudly. Taxol I find hard but others are still working so I think I am a wimp!
Love Debsxxx
Debs, I agree with Jane, you are in no way a wimp!!! This affects us all differently, I was amazed to read about people having worked through Taxotere, I could barely lift my little finger by the end of my treatments, if I could remember where the hell my little finger was that is!!
Nuff of the wimp thing ok, no one going through this is a wimp, ever!
I carried on at uinversity doing my teaching degree through my first chemo (carboplatin, epi and 5FU) and by and large came through OK - although I was wiped out by the end. My second chemo, Taxotere, laid me flat. I don’t see myself as a wimp - I had never had a day off sick before breast cancer - but I think it is true that the taxanes are particularly hard. I sort of say to myself that whatever chemos that may still be to come can’t possibly be as bad as taxotere so having survived that I feel a bit better when I think about chemo options in future.
Thanks for all the information. Might have to put off the chemo as my oncologist now wants to do a bone biopsy as he is only 99% sure it is cancer - but even with a negative biopsy it would not be definitive! How more sure does he need to be and he did admit that even with a negative biopsy he would still advise Taxol… so what is the point! (He did admit to covering his own back to a point).
I just want to crack on now!
Herc and Zometa not too bad today. Thanks for all your help - I really appreciate it!
Hi kate -sorry to hear your news… i have secs in lymph,bones and liver - have just switched today from parridamate to zometa and also 11th weekly taxol today - side efeects not too bad-bit tired and achcy at times - bit of heartburn comes and goes but cant comlpain - well I could!!!just about bloody life!!! when i was dianosed with secondaries they seemed not much a bothered by my bones ( its in about 5 different places in bones - rib, spine x 2 , neck hip) - they were more concerned with lymph and liver - saying they could strngthen the bones so I know least about these bits -at first they called them hot spots saying it was hard to be sure but now they call them cancerl -hope all goes well with biopsy and finding a way through confusong oncs etc Jayne
hi phardy, so sorry your feeling anxious, i think its normal with this bc thing. like someone said they dont seem to be too concerned when its secondaries in the bones, compared to organs because they can strengthen them. i too have bone secondaries, after having a lumpectomy, mastectomy and 6 fec, now tamoxifen, they said it was stable at the last scan. but i worry that i havnt had as much treatment as others, so like i say the worrying bit never goes completly. but theres one good thing from all this. its made me determined to enjoy life whatever the outcome, i enjoy the time spent with family and friends, and am not as serious as before. its like it gives you permission to spoil yourself, and theres the extra attention as well. great! but at the moment im not in much pain, dont know if id be as positive if i was
i really wish you a good outcome,
take care god bless x
Mine, like yours, has been a very persistent bu**er. But I was dx 19 years ago, managed 5 years without recurrence but then it was 2 yrs to the next one, then 6 months, then 2 years, then another 2 years to secondaries in 2002. They were extensive bone mets and by then I had used up all the options around at the time in chemos. I was then er/pr neg but they checked on previous tissue and found I was HER2 and I was put on herceptin and have had that every 3 weeks since. I also have bisphosphonates - pamidronate and dont really have any side effects with these. There was talk of switching me to zometa but as pamidronate has kept it stable all these years there seemed no point in switching. I have not had taxol so can’t comment on that - I found taxotere tough as well. Like you I have often felt at the turn of each new year there was little to celebrate. But these past few years I really do appreciate being here to see in each new one. I hope you will be able to look back this time next year with disease that is stable.