Herceptin/Timing Question

[DeeUK]

Hi all,

I'm new to this forum, so I'll briefly introduce myself before I launch into my questions!

I'm Dee.. 29 years old and live in the UK.
In July this year, I was diagnosed with 18mm, grade 3, invasive breast cancer. Er- Pr-, HER2+++, vascular invasive, node negative (assumed from sampling).

I'll be having my 5th out of 6 FEC chemos next Wednesday, and have been told by two oncologists that I'd benefit from Herceptin (still waiting to see if local health authority will fund it).

My query is this..

The oncologist I see regularly, says we should wait 6 months between the end of FEC, and the start of Herceptin treament.
The concerns me, as everything I've read and heard, says Herceptin should be started WITHIN 6 months of the end of chemo.
My oncologist says he wants to wait 6 months, because of the effect on the heart, especially after having had Epirubicin.

He doesn't seem to want to listen to anything I say about this (he knows best, and all that).

Would it be reasonable of me to ask about changing to a Taxane, rather than carrying on with FEC, so I can start Herceptin straight after the radiotherapy (which I'll be having when chemo's finished)?

Or should it be ok to start Herceptin sooner than 6 months after my last FEC, if I carry on with this chemo regimen?

I'm verging on going for a second opinion.. especially if my onc maintains that I'll have to wait 6 months.

I'd really appreciate anyones wisdom on this, or any pointers to websites/literature, where I can find any more info on this, and maybe print out things to show my onc.

Love & hope,
Dee
xxx

[doh2pa]

Hi Dee,

Welcome to the forum! It has been such a great source of information and hope for me, I hope it will be for you also.

Not sure I can answer all of your questions (but be assured that other wise women and men on this site will surely be able to point you in the right direction). I wanted to ask if your onc had done any tests to assess your heart function? In the US, most people get heart function assessments prior to herceptin therapy and then periodically throughout. My onc is following MUGA scans and EKGs (every 3 months). So you might want to ask him about that.

Keep on questioning and follow your intuition! If something doesn't sit right with you, get a second opinion. I did and wound up staying with my original onc, but felt better about the decision once I did that.

Donna

[DeeUK]

Hi Donna, thanks for replying and thank you for the welcome

I had a muga scan and an ECG (which I was told were 'fine'. They didn't elaborate on that) before I started FEC chemo. I'd assume they'd do it all again before I start Herceptin.

I could understand having to wait a few months if my heart wasn't functioning properly, but if it's still 'fine' after FEC, I can't understand why I'd have to wait 6 months to start Herceptin.

I've already had a second opinion before I started chemo (I wanted to make sure the chemo regimen they were offering me, was the most suitable for me). I saw Professor Smith at The Royal Marsden, in London for that second opinion, so would most likely go to him again, if I needed second opinions on anything else, as he's quite highly regarded here in the UK.

I'm going to talk to my onc about it again on Wednesday, and see if I can get anywhere with him, but I'm not holding my breath!

Dee
xxx

[RhondaH]

(Taxotere, Epirubicin and Cytoxan) finished on 5/18/05. Started Herceptin every 3 weeks on 8/18/05. Good luck and Good health.

Rhonda Hoffman

[anne]

Hello Dee,
I think your concern is legitimate. I think that waiting 6 months may be too long. I think most people here are having AC and Taxol combined with Herceptin for 12 cycles then Herceptin for the remainder of 52 weeks. It might not be a bad idea to ask to switch to Taxol. Unfortunately, I am not that familiar with the FEC regimen. Good luck to you and wishing to the best of health also.
Anne

[DeeUK]

Thanks for that Anne

I think in the UK, they tend to only use a taxane if we get a recurrence. It isn't usually used as a first line treatment for primary breast cancer (it's often said the the UK are way behind in cancer treatments.. I tend to agree!), so I think I'll struggle to pursuade my onc to change my regimen. But I am going to speak to him about it tomorrow, and if I get no joy from him at all, I'm fully prepared to go down the 'second opinion' route.

[sassy]

I would get second opinion. Current studies show herceptin to be more effective when administered in conjunction with a taxane--taxol or taxotere. And if your heart tests fine, I would think starting sooner rather than later would be best.

Sassy
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[Barbara2]

Hi, Dee,
I had CEF chemo in Nov. 02. The herceptin trials were in full swing but because of heart troubles I couldn't take part. With what we know now about the good results with AC +T&Herceptin, I think I would want to add the Taxol, too, if I were in your shoes.

I asked my onc if I could have Taxol after the 6 rounds of CEF and he agreed I could, if that's what I wanted to do, but I became ill and had to have my port out, so the discussion ended there.

Because Epirubicin is supposed to be kinder on the heart than Adriamycin, maybe you wouldn't have to wait the full 6 months before starting the Herceptin. If you were to have another MUGA which (hopefully)shows your heart is strong enough to continue with treatment, wouldn't that be all the amunition needed to convince your onc? Hang in there. Let us know how you come out.....

Blessings,
Barbara

[DeeUK]

Thanks so much for your replies

Well, I had quite a surprising meeting with my onc.

I was called in for my appointment early, which is unheard of, at my hospital.
I sat down, and he was very pleasant, as usual.
I was all prepared and hyped up for a proper table-thumping session, when he asked if I'd heard about the letter from the Primary Care Trust. "No", I said.
He said they haven't actually said they'll fund Herceptin yet, but he also said he didn't think they'd have written to him, asking his opinion, if they intended to refuse funding. So it looks like I MAY get funding for it.

Then, without me even asking, he told me that my last chemo should be on 21st December (which I knew). Radiotherapy should start 4 to 5 weeks after that, for 6 weeks. And Herceptin should start 6 to 7 weeks after radiotherapy.
He said the info on the timing of Herceptin treatment has come from London (which is where I'd be going for a second opinion.. it's a specialist cancer centre. Said to be just about the best in the country, and the onc I saw there, was one of the people who ran the Herceptin trials in this country. My onc trained with him, and apparently still keeps in contact with him about new treatments), and they're finding out more about it, on a weekly basis.
He told me Herceptin treatment would be for either 1 year, or 2 years. They don't know which works best yet, but by the end of the first year of treatment, they should know more about the benefit of 2 years treatment.

He then went into quite alot of detail about radiotherapy. Telling me how much RT I'd have in total (which will be slightly more than the 'standard'), and the reasons for it.

So yes, the meeting went better than I expected, and my mind's been put at rest a bit.

Love & hugs,
Dee

[doh2pa]

Hi Dee,

I'm so glad that your visit with the onc went so well. This field is changing weekly (honestly I don't know how the oncs keep up with it, treat the volume of patients they do, and still have time to sleep at night!) and it's a good approach to make have a plan now (1 year of herceptin) but continually reevaluate based on new data.

Good luck!
Donna

[caroline]

Dee

I am also on Herceptin here in the UK. I have already had 9 cycles and have another 9 to go,however I understand from my onc yesterday that they are not reporting on the 2year arm of the Hera trial until 2007. I assumed next May at ASCO. Does anybody know?Great site.Thankyou