her2+ and not able to have herceptin,

Hi Everyone,just wondered out of curiosity has anyone else been offered herceptin for her2+3 early breast cancer(mine was grade 3 lobular,er+ pr+ had wle,6x fec chemo rads now on tamoxifen))only for it to be not possible due to low LVF reading.My years herceptin was cancelled due to low lvf…does anyone know any statistics on outcomes,is risk of recurrence a lot higher,am ok for now but like as much info as can and have always wondered …any comments much appreciated thanks D…x

Hi Longden,

How long since you finished chemo? I know that herceptin must follow within 6 months so wondered if they have offered to rescan you again to see if your LVEF has improved. Often after a course of chemo it can be affected. If they haven’t offered then I would ask if you are not too far out from your last chemo.

Dawnhc

Thankyou for your reply Dawn,finished chemo in nov 06 ,so never had the extra insurance of herceptin and wondered if any stats,but sure too early to tell as not so long ago herceptin not given to early breast cancer cases,guess only time will tell,thankyou so much for your reply,guess I read so much about the her2+ and the relief of herceptin it can play on my mind,especially when feel so under the weather,plays tricks on your mind and the dreaded what if,is looming in the background, have 3 month check early march and will ask for a few tests,aches and pains dont seem to be going away,but thats probably down to tamoxifen,thankyou so much again Dawn…D…x

Hi Dawn - I am in a similar situation to you and only found out today. Originally diagnosed Sep03 - had WLE, 1 node affected , 6 x FEC, 4 weeks rads, ovaries removed and on exemastane. July 07 had high grade DCIS which was hormone negative and had mastectomy. Asked by my BC nurse if I wanted to go on TEACH trial for Tykerb which attacks HER2 cancer in tablet form - so I said yes to HER2 testing only to find out today am HER2 positive but actually now don’t qualify for the trial apparently!!! So should have had Herceptin but can’t now as too late after chemo and can’t get anything else as tykerb not approved by NICE yet.
I feel exactly like you - what is looming in the background that should have been attacked by Herceptin. I am just going to keep as up to date as poss with new developments and will have no qualms about pestering my onc if I am worried - I told them only to test me for HER2 if they could do something about it. Feeling really p*****d off at the moment.
Take care
Sarah x x x
P.S I haven’t looked at stats as not sure if would relate to me and do think everyone is individual - all we know is HER2 is more aggressive.

Oh Sarah can understand how p----d off you must feel,but like you will never hesitate to ask onc if worried,I just hope and pray the chemo and rads mopped every trace of the cells away for as we know her2+ =aggressive and fast growing if left hanging around,but can only keep everything crossed for us that all will be well,Im an information seeker and feel better knowing things than not (wasn’t always when first diagnosed),but with this crappy disease nothing is predictable,take care and best of luck…D…x

Hi Debra - was on Dr Love’s website yesterday (american doctor who specialises in BC) and apparantly if you are her2+++ it is better to be on a drug like Arimadex rather than Tamoxifen - they think her2+++ cancer is more resistant to Tamoxifen apparantly. I don’t know if this is true or not but if you are on Tamoxifen might be worth looking into. I had my ovaires out 3 and hald years ago and am on Exemastane which is like Arimadex.
Take care
Sarah x x x

Thanks Sarah,I have read somewhere ,cant quite recall where that tamoxifen can be less resistant too her2+ too,I had regular periods up to my chemo so think thats why was put on it,but will mention it at check up in march as the bone pains i am having on tamoxifen is rotten,and havent had a period since chemo treatment finished in nov 06,arimadex sounds so much better,with love D…x

Hi Debra - definitley worth asking for - I think guidelines are 2 years on Tamoxifen then switch to an AI - but in your case as you couldn’t have herceptin worth pushing for it asap. Also there is another thread going on about her2+++ testing and apparantly FEC works well for HER2+++ patients - I had FEC too so that is some reassurance.
Take care
Sarah x x x

What’s LVF? I have just started Herceptin but can’t recal hearing of this. I am ER negative though.

Cheers
Carol

Hi Carol,LVEF (sorry missed out the E before) stands for Left Ventricular ejection fraction,your hearts function should be tested before and checked throughout treatment with herceptin.If the ejection function falls below 55%,herceptin should be stopped…nice guidlines attached for you.,
nice.org.uk/newsevents/infocus/update_on_herceptin_appraisal.jsp

Mine was low,after 2 muga scans so never started herceptin,my oncologist thought the risk too great ,best of luck with your treatment,D…x