Second lot of chemo following FEC-T and surgery - refuse or not.

Hi  floss b

I had my operation first then the chemo and radiotherapy  for TNBC but I had small tumours. I have a friend who had chemo and then her op followed by the radiotherapy.  She was TNBC too. Neither of us were asked to have chemo twice.

I can understand why you wouldn't want chemo again if you had difficulties.  I have always said I would think very carefully if my cancer returns but I have never heard of anyone having it twice for the same cancer. So I guess the question you have to ask on Friday is why is the oncologist suggesting this. What does he expect it to achieve that not having it won't.? Once you know that, you will be better informed to make the decision. In my case....the after op chemo was to make sure all the cells had been removed during the op. That is why I felt I could consider not having it if the cancer came back.....because it wouldn't have worked ......but as that is not your situation, you do need more explanation.

Hopefully there will be someone else who found themselves in your position who can give you better advice. I am glad the operation itself seems to have been sucessful.

Love Karen

Thank you Lacomtekp xx

Hi, floss b 

I have TNBC. I was diagnosed in December 2017, & had chemo (EC-T) followed by surgery and radiotherapy in 2018. I was warned before radiotherapy that the likelihood of recurrence was very high, and offered oral chemo (Capecitabine) for 6 months, which I did, starting in September 2018. Capecitabine didn't offer a huge advantage over no more chemo, but I felt I had nothing to lose. I then took part in a clinical trial for immunotherapy (Pembrolizumab).

Unfortunately,  none of this worked for me, not even the miracle drug Pembrolizumab, and the cancer has now spread to my lungs. I'm having chemo again, Eribulin this time, and it seems to be helping. My attitude is still "hit it with everything you've got", as long as I can tolerate the treatment and it seems to be working. 

All this is to say, your team must have a reason for suggesting more chemo, even if it's simply that they like to take a belt & braces approach. Ask them directly on Friday, so you have a clear understanding of the consequences (if any) of rejecting the chemo. With that, & knowledge of what the treatment would entail, you will be able to make a fully informed decision. 

Good luck, whatever you decide.

Thank you AP7 for sharing. The tumour embedded into my skin and under the microscope showed that the blood vessels that fed it contained cancer cells. They want to give me cytoblastin which is Vebe. It doesn’t look as if anyone has heard or used this drug. It is given intravenously and has all the usual side effects. I’m just so tired and suffered most of the side effects with the FEC-T. We’ll see what they say but physically and mentally I would struggle. 

Did they give you the % of how much it would help you before you took the tablet? 

Bless you xx

floss b

As someone who also had a lot of difficulties with chemo and still have problems caused by it, I appreciate the decisions you have to make and am thinking of you. However, at the moment for me the chemo seems to have kept the cancer away but in your case.....if the job isn't finished.....you are going to have to balance survival against the side effects which may be awful but will only last for a relatively short time and that isn't going to be easy. Bon chance!

Cyber hugs.....I can see you are awake very early....

Love Karen

Yes, the advantage for Capecitabine was 7%. Not much, but better than nothing. Pembrolizumab,  on the other hand, is producing wonderful results on most cancers. I think my trial was the first time it was used for TNBC, so it's too early to know how others fared. I may just be the unlucky one.

Thank you. Xx