Hi had a chat with onc today regarding trial does anyone know how many chemos are avli for tn sec as he sd I can have taxol or xeloda but sd was only a few he cld use just wondered if anyone was on anything else as my prim bc was used by fec tax and didn’t work so I’m a bit limited what I can have I can go into a trial where I might avastin taxol and a new drug called metmab which they hoping might work but he did say because mine as returned in only a yr to both lungs even though only small there is a chance it’s gone to the bones so bone scan thurs sd I can go on me holiday and talk about plan end may he sd with tn the cancer get used to the chemo so whatever one he uses he don’t think I’ll be on it long not what I was hoping for so if anyone else knows of any other chemo I can ask about for tn I wld be gratefull tc laura x
Hi laura,
This is so negative. My onc is so much more positive!! As you know we have similar clinical diagnosis nd im on taxol and avastin, not in a trial. Have you thought of going to the Marsden for a second opp? They were very prompt. I just needed a cd with my scans on.
My Onc said there were lots of things to try. The other suggested for me was gemcarb, but i did not get very far researching it as switched to taxol with avastin. We made this swap as i could only get funding for the avastin if it was used as a first line of defence.
I will be following others comments with interest.
Try and keep positive. My onc said tn can respond v well to chemo!
Sadie Xx
Hi sadiel I’m going to the Marsden on 26th April for sec opion perhaps I was reading to much into what he was saying he just kpt saying there are not many chemos to try and it’s returned so soon after treatment was so positive then u feel they shoot all your dreams down in one go the only way I can have avastin in in this trial he told me it was 2 dear to be used in uk so we have no hope so I might give the trial a go he also sd I wldnt be on chemo long as the cancer get used to it so starts growing again he also sd the se on avastin where mild how u feeling is this right tc laura x
Hi. Cos i have the chemo too, it is hard going at times. But lovely days like today make it all worth it!!! I think the avastin is low in se but the taxol has the usual list!! It is weekly treatment with avastin every two weeks nd i feel the same after treatment if ive had or not had the avastin. I get one week in four off. No idea if it is working yet but ive no clinical signs of the lung mets that has got to be good. My funding came from a specislist chemo pot of money from the government, not the nhs.
Glad you are off to the Marsden!
Sadie Xx
Hi
I was diagnosed June 2010 with secondary at diagnosis in liver. I had 6 EC and worked well. I had reccurrencce local March 2011 and has spread very quick to bone and tiny in liver and lung and in nodes. I am starting weekly taxane. may have avastin but have had clot so not advisable. I was told there are many more options; platinum, capeticabine and gemca??? and then maybe parps.I think there are quite a few options and each of us is different and does usually respond well to some of these drugs. I am hoping so.
I was told I may keep hair on weekly taxane. Has anyone managed to do this ? Is there a TN spec at Marsden
Hope 15
Hi hope I’m going to have my treatment at the Marsden starting 18 may I saw a proff yes seems to be a few things we can have I’ll pm u laura x
I’m so pleased that you had a more positive response at the Marsden. I will be keeping my fingers crossed that the treatment brings every thing you hope for and more.
Hi Laura
I hope your treatment at Marsden is going okay. What did they put you on. I too as you know had v fast recurrence and am on taxane ( paclitaxol) weekly 3 in 4. My Onc said TN v responsive to chemo so hoping is the case but want it to stay away. Seems the other treatments; platinum agents and capecitaine and gemcitabine dont have side effects of EC.
take care
joanna
Wanted to share my great news with you have got tn breast cancer to lungs have had 2 cycles of chemo ct scan wed bcn just rung me to say one side as reduced by 70 percent and other side 50 percent and I’ve only had 2 can’t believe it so all the other ladies out there don’t give up hope Laura x
Hi Hope15 and Laura -I was wondering if you could share with me your initial diagnosis. I was diagnosed TN BC early May 2011, had lump removed 3 weeks later, it was 2 cm, told stage 1 grade 3 because of triple negative, no nodes involved (they did sentinal node) I am awaiting chemo and they are suggesting 6 cycles of FEC. I asked about Taxol and they said that if there is no node involvement they do not give Taxol. I have read a recent finding that giving Tax followed by FEC has better outcomes. I don’t know if I should get a second opinion at Marsden or just go ahead with the FEC treatment. If I go for a second opinion I will possibly delay treatment. Just curious what your diagnosis was to begin with and what treatment you had initially as it came back so fast. thanks for help and that is fantastic news for you, long may it continue (ps what 2 cycles of chemo have you had?) x
hi raemaire i was dx may 09 with 3.5cm grade 3 invasive ductal carcinoma no nodes involved followed by 3 fec which worked very well 2 taxotare which did not work made my lump grow but onc sd it just did not work unsure if hes right but there u go in followed by a mx then rads dec mamogram all clear so i thought i was well on the way to putting this behind me then had few chest pains in march went to gp who done chest x ray and 2 lumps showed up was so shocked as onc sd i was fine and not to go for x ray im so glad i ignored him my oh got me refured to the marsden for second opion and they suggested 6 cycles of carboplatin /taxol have sufferd a bit with se but after todays news i dont care just want little buggers gone it dont hurt to get a second opion u have nothing to loose the marsden are brilliant so nice up there im so glad i went for my treatment there i do belive standard chemo for prim is fec/ tax but it does depend on hos gd luck in y treatment pm me if u would like any further details tc laura
Hi Laura - thank you for letting me know your diagnosis. This is what worries me - I keep reading about women with TN BC who originally had no node involvement that then go on to get a secondary cancer, and this just scares me so much because I had kind of thought that if it isn’t in your nodes its probably not spread but this does not seem to be true for TN. I know I am supposed to have trust in the Dr’s but it just seems to me that there is not really a golden standard for treatment of TNBC. I also think that in the States they are a lot more aggressive with the treatment of early stage TNBC. I think for peace of mind I want to get a second opinion from the Marsden, if they tell me that 6 cycles of FEC is the best and most aggressive treatment then no harm done. My lump has been removed so technically there isn’t anything to shrink other than anything else floating around in me. I wish you all the best and love. Rae
rea yes its a gd idea to get a second opi my nodes and all previous scans where clear t was a total shock to me and tbh to them as well i think they got it very early so im hoping for great responce which i have had so far we dont no how long it will stay away which is the prob with us tn ladies all i can tell u is fec worked really well for me se where hell but we have to do it some ladies take a chance and dont have chemo nut like u say we have to trust our onc i didnt like mine but im over the moon with the marsden they are a cancer unit of excellence so if they cant help us no one can just my opi i was reading a note in my unit the other day which read u come here and put your life in our hands and you deserve the best made me smile because that is what we all deserve the best tc laura
Hi Laura
Thats excellent news Laura that the treatment working and it will continue so obvioulsy much better with combining taxane with carboplatin. Did you ever get your BRAC gene status tested ? I am going to. Hope all continues to go well. I find the paclitaxol gives awful night and day sweats.
Hope 15
Hi Raemarie
I did not have node involvement at diaggnosis but did have large liver secondary at diagnosis but was not given taxane ? I had dose dense EC for 6 cyles and cleared all. Had mastectomy and was back as skin lesions and nodes 3 weeks after mastecomy and clean scan. Also spread elsewhere now too. I am on 6 courses paclitaxol delivered weekly so 18 treatments.
I think I did not have taxane as was quite ill and had a blood clot on lung and just had a baby when diagnosed. I think is usually for node positive people as they like to keep as a second option I think.
Hi hope15 no I didn’t tbh I don’t really no much about it and they sd cos wasn’t in family might not be worth it yea I get sweats but not to bad hope y ok Laura