Advice please

I am about to receive my last chemo (yayyy). I had a mastectomy at the end of April. Yesterday my oncologist said that I should consider having Herceptin for 9 weeks (3 doses 3 weeks apart) but that the decision was mine as I am a “borderline” case.
My question is, I have a blood disorder called Factor V Leiden which means that the blood is susceptable to clotting, so am I at high risk to heart problems if I take Herceptin.
Thank you

Hi AslansMum

You may want to give our helpline team about this as they will be able to talk to you about the concerns you have regarding herceptin treatment and possible side effects due to the blood disorder you have. The helpline team are on 0808 800 6000 Monday to Friday 9am-5pm and Saturday 9am-2pm.

Best wishes

Breast Cancer Care

Sorry I can’t help you with your blood disorder query, but just thought I’d say that I too am borderline for herceptin, and my onc’s advice was to have the full course (ie 18 doses). He said if I was older he wouldn’t recommend it but as I am 45 he thought it was worthwhile.

Thank you for your answers. Lucy I live in Turkey so am unable to phone 0808 numbers from here. Do you know of another number I can call.
RoadRunner it’s interesting your comment about your age because I am 54 and age wasn’t mentioned as a concern. Also the way I understand it I would only be receiving 3 doses so cannot see how effective just 3 doses would be.

Co-incidentally, I was told by my oncologist on Tuesday that there is some research that says that 9 weeks is as effective as a year. I got the impression that as Herceptin is so new, changes could well be made to the amount of treatment given as more becomes known about the effects. Sorry I can’t help re your blood disorder.


Dear AslansMum

We are trying to find out the overseas helpline number for you and will post it as soon as we can. Sorry for any inconvenience caused.

Best wishes

Breast Cancer Care


Don’t know if this helps but they think I have a clotting disorder. I had a DVT while on chemo and lots of phebilitis on my leg and arms. This was the second DVT, has one after birth of daughter. I have now done 14 Heceptins and it has not been an issue, infact it was never even considered an issue. My heart scans have improved. Started at 75 normal range 55 to 70. Last one was 81. I am awaiting results of clotting investigations. I was treated for 6 months with heparin during chemo and while on the first few dosoes ogf Heceptin. My advise is take every thing that is on offer!!!

Thank you again
Geraldine, I too had a DVT but in my twenties and was treated with Warfarin and Heparin. If I require surgery now I have to have a Heparin shot beforehand.
I,m still undecided whether to go ahead with the treartment as it is relatively new so am concerned about any possible side effects.
I also have to take the cost into account. There is no free healthcare here in Turkey. I do have medical insurance but that only covers me for 80% for drugs. The cost per treatment is 6,000 Turkish Lira (about 2,500 GBP per treatment). So I would have to find 500 GBP per treatment which is about a months wages here. I have already spent a small fortune on chemo etc., so I need to be certain that the Herceptin is worth the cost re guarantees etc.

Hi Aslans Mum,

When I last spoke to my oncologist, he said that herceptin was turning out to be safer in the long-term than people had expected. It is mainly herceptin started soon after an anthracycline chemo (epirubicin or adriamycin chemo) that seems to be particularly problematic.

There are three studies that indicate that that herceptin for short durations can be highly effective and safe, but I would caution that in each of these three cases the herceptin was given as part of chemotherapy and always with herceptin being given with a taxane (taxotere or taxol) followed by an anthracycline (FEC or the older and probably not as good adriamycin). The largest trial is FinHer, in which 200 women received taxotere + herceptin for nine weeks, followed by FEC (5-Fu, Epirubicin and Cyclophosphamide chemo) for nine weeks with fewer heart problems than without herceptin. Other really relevant trial is Hurley 2006 (12 weeks Herceptin + Carboplatin + Taxotere followed by 12 weeks Adriamycin + Cyclophosphamide), which again noted no cardiac problems, although many of the participants did not comply with followup screenings. Buzdar also came up with a chemo combination with brilliant results, but although the combination allegedly had no cardiac side effects, it goes against the manufacturer’s recommendations on safe herceptin use, so is probably too risky. I looked for trials in which women had received herceptin alone before surgery, but I could only find studies where women had been given the drug for a few weeks and even then the results seemed somewhat mixed, with at best 23% of women having there tumours reduce in size by half during the first cycle.

Did you have taxane chemo? The latest news is that that type of chemo seems to be particularly effective against her2 positive cancers, with mortality being decreased by about 40%, which might influence your decision. Unfortunately, if you did not have this type of chemo it is about as expensive for a nine week course as herceptin, at least in Britain.

Hi AslansMum

Sorry for the delay in replying to you, the overseas number for helpline is (+44)2076200077.

Kind Regards
Beast Cancer Care

Thank you Sam, I,ll give that number a call.

Christine, thank you so much for all that information.
The drugs used for my chemo are Adriamycin, Endoxon and 5 FU. I am about to have my 6th and final session on Tuesday. I have been told I do not need radiotherapy.
I,m still not sure about the Herceptin but hopefully after I,ve rung the helpline I may have a better idea of what direction to go in.