Hello IBC'ers

Hi everyone - havn’t been on here for quite a while (have sadly just had to make a post about a friend who has recently died) but thought I would just pop on here and say hello xxx

I still see some of you on facebook and hope that everyone is doing well x I’m now just over 4 years since diagnosis, going through a bit of a scare at the moment as my sternum has been hurting so had a nuclear bone scan which has shown up a hotspot which I am having mri’d on Tuesday to confirm what it is… Will get the results on Wed afternoon off my onc (she won’t have the full report but should have seen the scan on the system by then).

Take care everyone x

Hi Rhapsodyangel ! nice to hear from you again, sorry your having a scare at the moment, have fingers crossed for you. I am nearly a year and a half since Dx , so far all reasonably good. I am having my ‘MOT’ in next couple of weeks, not had a scan for 12 months so will be hoping the Lung met I have has either gone or is stable. Also having a bone scan as my ribs on Mx side are still sore so just hoping it’s Rads damage, but I am on Herceptin and Onc thinks I should have no problems.
It’s really good to hear from IBC ladies as we are few and far between, I think I am the only one in my Breast Clinic.
Hope everyone is enjoying the sunshine xx

hi tillybob,
i am the only one in my clinic with ibc and also the complications i have had in the past two years nearly, but still we are all soldiers are we take care xxx

Hey there, I have been following various threads and I often find you Tillybob on the ones which seem to be relevant to me. Mum was diagnosed with IBC is strongly HER2 weakly hormone receptive. Had 2 sessions of chemo. Was told this week that she has 2 lung ‘lesions’. They put in a Porto cath this week and added Herceptin into her cocktail. She is doing very well and is staying active. She is early 60s. Any advice? She will have 6 sessions of chemo then mascetomy then rads. Is Herceptin for life? What implications does this have? Can it kill secondaries or just stop spreading? Iappreciate that somequestions will be hard for you to answer but I think personal journeys are worth a lot and this site and your comments have been a God send to me in keeping strong and being there for my mum…so thank you x x Nik

hi nik,
i also have ibc dx sept 2010, usually you have herceptin for one year if you are her2, i had chemo first for 4and half months, then mx recon but that failed, 15 rads. but then i had a few local recurrances, and then dx with lung mets 5 and half months, i have just had the results of my second scan yesterday and the lung mets have gone and i am clear everywhere else, waiting now to stop chemo and just stay on the herceptin which will be for life if you have secondries. i hope this helps and all the best to your mum.
lollypop59 x

sorry nik, forgot to mention the herceptin stops the spreading and the chemo attacks the cancer.
lollypop59 x

Thank you lollipop…you all are helping me get my mum through this. X x

By the way ladiesany advice on hot weather, mum is suffering today. Is the Herceptin a problem in the heat? X

hi nik,
i dont think the herceptin is much of a problem with the heat but with having chemo they say keep out of the sun, hope you mum does not have to much side affects. all the best.lollypop59 x