Herceptin and progression

Public Archive
1

Hi girls,

I have been recieving Herceptin for 3 years for secondary BC in my liver until in May this year I had slight progression.

I was then put on Vinorelbine chemo only until last month. My tumours have shrunk to less than when I was on Herceptin alone.

I am now off of chemo and on hormone therapy and have been told that I can no longer have Herceptin.

Is this standard practice or are there any of you girls who are still receiving Herceptin after progression?

I consider myself very lucky to have received the drug for this long but I still want to give myself a chance of living a little while longer.

Paulinexx

2

Hi Pauline,
Great news that your tumours have shrunk with the chemo. I still have herceptin despite some progression, and my onc has so far only put me on chemos that you can have along side herceptin-xeloda and abraxane so far. The rational is that although I have had slight progression at times, my lung mets have been stable for oeriods of time as well, probably because of the herceptin.
best wishes,
Nicky

3

Hi Nicky,

That is very reassuring and great news that you remain stable.
I think I will try and investigate this with my Onc. I think our
PCT’s are against giving it once there is progression however small!

Take care

Pauline xx

4

Hi,

I have bone mets and no sign of progression but my onc tells me that if i have signs of progression he will nevertheless keep me on herceptin.

5

Hi Pauline

I have bone and liver mets and have been on herceptin for 2 years. I don’t have progression yet but I have discussed plan B with my onc who said he will give me more chemo and continue with the herceptin. The reason for this is that research shows that conitinuing with herceptin post progression signifcantly (statistically) improves outcomes.

I recently met a woman who has been on heceptin for 5 years and she had bit of ‘blip’ about 3 years ago, she was given chemo and continued with herceptin, 2 years on no evidence of progression. She looks really well.

Hope this helps

6

Hi Pauline,

I have heard this from somewhere recently but when I asked my oncologist at the Marsden she said she had not heard this at all. I was quite concerned at the time because I have progression with a tumour growing outside my lower spine and not related to my bone mets. Having been on herceptin since 2004 I dread the day either my LVEF goes too low or on the grounds that I have progression they will stop herceptin. Thank goodness my consultant doesn’t have that in mind for me.

It is of course great news that your liver tumours have shrunk so much and I do wonder if you were to get more progression after a while if they would then put you back on herceptin.

Dawn
xx

7

Hi girls,

Thank you for all your information. Very interseting.
I have been told that NICE recomends that Herceptin is
discontinued after progression, so unable to have any more.
I wonder if this depends on the hospital?

Think I will have to investigate as I want to give myself every possible chance.

Thanks Girls

Paulinex

8

Hi girls,

Well have found out that my primary care trust abides by the
NICE guidelines so no Herceptin after progression.

So dependent on your trust it seems… thinking of bring this
to light as inconsistent throught the country. Any ideas?

Paulinexx

9

Hi Pauline,

You may want to ask for a second opinion at another hospital. A lot of people go the Marsden.

Some people are being prescribed lapatinib however this has not been recommended by NICE either. As you have probably heard NICE’s role is being reduced regarding what drugs can be used for treatment, this could mean a return to the post code lottery, although the Govt have just introduced a cancer fund so that drugs that provide clinical benefit can be prescribed by Dr’s.

10

Hi
Herceptin can delay a reocurance by 2 years from date of last of herceptin, depending if you had lymph node involevement at original diadnosis.

11

Hi Ladies,

Many thanks for all your comments and help… lots to think
about. You have all been very helpful and reassuring.

I wish you all well with your treatments.

Paulinex