CHEMO NOT WORKING! THE TUMOUR IS GROWING! - HELP!

Hello,

I started another thread a while back called head thinking all kinds of things and the last thing I posted was that claire (my wife) was diagnosed with IDC Grade 2 and the tunour was thought to be around 5.5cm but was in a good position in the side so that the oncologist and consultant both thought chemo to reduce the tumour, then a quadrectomy followed by rads.

The cancer was non hormone receptive and may be herceptin receptive but we are still waiting for those results.

she had one round of fec three weeks ago and has since been convinced it wasn’t reducing but growing.

anyhow we went today for the second round of fec and the oncologist confirmed our fears, it has grown to 8cm!!

he immediately has said that she needs to start docataxil? to see if that works if not then a mastectomy will be the obvious route.

however! what if this thing doesnt respond to chemo and she has a mastectomy but any microscopic cells will clearly survive and we’ll have to do it all again!!

Im so worried. 5 weeks ago it hadn’t spread anywhere else and today he felt her nodes and they appeared fine.

please please please what do we do??? get a second opinion? have a mastectomy immediately?

its xmas and I honestly dont think we will get any action before the new year by which time it could be any kind of size?

we are so worried and dont know what to do

x

Hi Andy

Sorry to hear you’re so worried, do give the helpline a ring and have a chat with one of the nurses here, they’re here to support you. Lines are open now until 5.00 p.m. today, calls are free, 0808 800 6000.

Kind regards,
Jo, Facilitator

Andy so sorry to hear that you are now going through all this…

I had my chemo first and had docetaxol as the second type (first was ac) docetaxol is also called taxotare - they are exactly the same drug…

I have a different type of cancer called IBC (inflammatory breast cancer) but it is usual for us to have chemo first and i have heard of several ladies who had no shrinkage on the first chemo but did on docetaxol if that is any comfort…

I can understand your worries about further growth and certainly with IBC patients i have heard of people who had an immediate mastectomy if the second chemo didn’t seem to be helping…

I’m sure some of the others will be along soon with more advice.

Once again so sorry that you are having this new worry

Theresa x

Ive finished my treatment ( grade 3, WLE, Chemo Rads) and my knee jerk opinion on this is to get a second opinion and probably a mastectomy. I am a mere midwife and NOT NOT medically trained.

Not sure i could sit and wait.

Really really the best of luck with whatever happens

S

Hi, I think after speaking to the oncologist this afternoon we are resigned to a mastectomy and are preparing for that in our heads.

He wants to try docataxil to see if it works but even if it does we think a mastectomy is the only way forward

x

The same thing happened to me in 2003.
My oncologist said that he would be able to tell within two treatments if the chemo (fec) would shrink the tumor it didnt,
so then i changed to taxotere and that worked very well for me .
So i hope it works for your wife.
Regards Janet

thank you janet, your words fill me with hope. A mastectomy is in our head now even if the docataxol works but if it does shrink it then its a significant battle to win.

was your cancer the same as I described claires?

x

More or less the same but mine was a grade3 ,2 1/2 to 3 cms
I had the choice of a mastectomy or chemo first, and of course my husband and myself oppted for chemo first we had to make up our minds on the day i was diagnosed (29/06/03).
I can also remember my oncologist saying that i he cannot remember taxotere not working for any one .I also had ultrasound after one treatment to see if it was working.

Janet x

hi andy
im so sorry to hear chemo not working all i can say is i had fec and it worked a treat on me but i had taxatare to and that didnt work it made my tumour grow they stopped mine early as i cldnt handle the se and went for a masectomy and was luck lymphs were clear so no more chemo for me just 5 wks of rads i hope you get the right info and best of luck to u both laura

Hello all you lovely people,

Well, the docetaxel is working!! Claires tumour has shrunk by 2cm after 1 cycle but the side effects are horrific! She will still have to have a mastectomy because of the aggressive nature this cancer has but we are so relieved its responding to treatment.

It turns out the tumour is triple negative but we’re not concerning ourselves with that at the minute as we are focussing on getting this thing shrunk and removed, then we will move on!

I dont know what to say really after this but if anybody out there is having tumours not responding to one particular type of chemo, keep believing!!

Love to you all and I’ll update more when we I can

x

ps - is there anywhere you can claim back car parking tickets?

and we’ve heard about some pcts doing £100 wig vouchers and claire wants a wig so any discount all helps?

x

Andy, the hospital I go to give me a parking permit to use for all my visits, started when I started chemo and will continue until I finish rads - surely they should have something like that .

Also i think your wife should be entitled to a NHS wig voucher which should cover the cost of the wig - the wigs are not too bad so she should be also be able to find something that suits her.

Hope this helps, and good luck with it all

Dena xx

so glad this chemo is working,as i said before it worked for me
Best Wishes
Janet

Andy,

So pleased to hear Claires tumour is going the right way! Although theres a long way still to go, you must be so relieved its responding. Im on Tax too, and fingers crossed its doing what it should so far.
Youre absolutely right about not even thinking about triple neg status, BC treatment has so many aspects and it would absolutely drive us to desperation if we thought about it all at once! Just take each treatment one step at a time, get that bit sorted, then move onto the next.

Sending hugs to you both,

K x