Allergic reaction to Herceptin

jpuk · 10-30-2005, 10:43 AM

I was diagnosed in December 2004 with Inflammatory Breast Cancer, a rare and particularly aggressive variety of this vile dsease; there followed chemotherapy, mastectomy and currently radiotherapy. Post-op pathology revealed 5 of 13 nodes positive but mercifully no evidence of extranodal or vascular invasion.

Because of the advanced nature of the diagnosis I have been put on Herceptin and have now had 3 treatments. I was warned to expect a 'flu-type reaction, but each session has been completely uneventful. My consultant oncologist has now told me that this is a good sign, and indicates there must be few if any cancer cells left as it is the interaction of the Herceptin antibody with the protein on the cancer cells which causes allergic reaction, i.e. it is not what it is but what it does that sets up reaction. This sounded like good news, but after the consultation I recalled that the more less senior doctor who went throught he consenting process with me before treatment started had said that an allergic reaction is caused because Herceptin is a "humanised" product based on a substance originally derived from mice!

I shall raise the issue when I see the consultant again next week but meanwhile I wonder if anyone else has discussed or read about the causes of allergic reaction to Herceptin?

jpuk · 10-30-2005, 10:45 AM

Should have typed "less senior doctor" who consented me!

Christine MH-UK · 10-30-2005, 02:38 PM

Hi JP,

On the product insert, it specifically mentions that people who are allergic to 'murine proteins' may have problems with herceptin. Murine means rat or mouse, although I think with herceptin it is actual chinese hamster ovarian cells that are used The less senior doctor is definitely on to something.

Of course, maybe I'm just trying to cheer myself up because herceptin makes my nose run.

I am sure that other people on this board know more about this, though.

PatS · 10-31-2005, 05:40 AM

A few weeks ago, at a local support group meeting, there were two reps from Genentech and a local onc who did a talk on Herceptin. They also said it was the small amount of mouse that caused an allergic reaction in some people.

Pat

kk1 · 10-31-2005, 07:36 AM

I don't think I would use that consulting onc again!---it was not a very bright thing to say even for a first year med student. Statements like that would make me really worry about anything he/she might say in the future.

jpuk · 10-31-2005, 08:47 AM

I have great faith in him. He is in fact the most senior clinical oncologist at one of the leading hospitals in London: a centre of excellence for breast cancer medicine where the pool of medical expertise is second to none in the world. Moreover he has put himself out to prescribe the most up-to-date leading edge medicine for me, with drugs which are not usually available in the UK. He is a careful Scot, and my guess is that there was some truth in what both he and his registrar have said.

By the way, in the UK we cannot just switch about between hospitals like changing supermarkets. It is possible to transfer, but only for good cause and it requires a referral from one consultant to another. Transfer can also risk building in delays to treatment, as the second consultant can decline the transfer, especially if the lists are full. Of course, if you pay privately you can shop around as you please until you find someone who will tell you what you want to hear (although as a lawyer I must say that shopping around will not necessarily procure the best professional advice) but thank goodness I do not have to pay the colossal costs of my treatment.

Lisa · 10-31-2005, 12:22 PM

EEK! I had no idea I was injecting mouse weekly. That explains why my cats have become so needy.

Whatever the reason it works, it does work for most women, especially combined with chemo. My onc just said a couple of weeks ago, that he has seen a definite increase in the lifespan of his patients on Herceptin. Like the others, I too have a constantly runny nose (2 years now). My heart is tested regularly and never been a problem.

I don't know why it works, but I focus more on the fact that I'm still around to not worry why.

Love and light,

Lisa

Sandy H · 10-31-2005, 02:25 PM

You were put on Herceptin because you are Her2 positive. I am inflammatory breast cancer and Her2 positive. There are many on this board who are not inflammatory and are on Herceptin because of the Her2. I have never heard this reason given for a reaction. I was told by my oncologist that there is no way of really knowing if Herceptin works or not. Its best to stay on it unless there is a heart problem because with the right chemo sometimes it will work. It may prevent reoccurence, progression or slow the disease down. Good luck to you. hugs, Sandy

StephN · 10-31-2005, 03:46 PM

Hi -
We are always saying on this board that each one of us will have some individual twist in how our bodies use and react to the various drugs we are subjected to.

My first dose of Herceptin was as a Stage IV patient with rampant liver mets and a climbing CA27-29 tumor marker that reached over 100 at times. I also had it with my first doses of Taxol and Navelbine. Now you have to admit that this is quite a slam to one's system.

As I recall (it was about 4 years ago this took place) I had some slight fever that first evening but did eat the dinner my hubby fixed. The next day I felt fine - and was pleasantly surprised at how good I felt. No flu -like feelings, but LOTS of cancer cells running around!
I proceeded to the cancer center to have a bone scan and saw my nurse case manager. She was glad I did not have any ill effects and said they like to check up on us as each patient will react differently.

So, my experience does NOT match with what your consultant said about the cancer cells being a reason for a reaction. I also am allergic to all sorts of furry animals as well as horses. Guess a little side of "mouse" with my drug is tolerated ok due to my taking regular allergy meds.

Glad you are doing well within the UK medical system - we have some women who post real problems over there.

jpuk · 10-31-2005, 05:40 PM

StephN, with respect I think you misunderstood what I wrote. You said that you had a lot of cancer cells and that you suffered an allergic ‘flu-like reaction when you first had Herceptin. This description precisely reflects what my consultant said, viz. that the Herceptin acting on the protein bearing cancer cells would cause a reaction! What he was commenting on was my situation, i.e. the fact that – happily – I have experienced NIL reaction whatsoever, and suggesting this might indicate there were few if any cells left behind with me. As I said in my original post, I shall discuss the matter again when I next see him later this week.

Sandy H: thanks for your friendly contact. The wretched IBC diagnosis is so rare that it is unusual to come across anyone else with it – in fact most people have never heard of it (including the client services manager at the cancer care centre where I go). Once again, what you have said reflects what I was told at the outset to this treatment, viz. that there is no way of measuring whether Herceptin is working, merely that it produces a statistical effect. The treatment program provides for 3-monthly MUGA heart scans, so my next one will be due in a couple of weeks.

I am content to remain on this treatment for as long as advised. The only inconvenience to me is the hospital visit for the 3-weekly treatment session – plus of course having another recovering incision from the operation to instal the port in my chest, the line for which had to be inserted through the jugular vein. This gives an unsightly bulge and I feel it is vulnerable, as it lies just under the skin in my neck – but it’s a thousand times better than the previous Hickman line which was a daily, day-long source of pain and anxiety. I think of these wounds as battle scars.

StephN · 10-31-2005, 08:23 PM

Dear JP -
In the above post I said NO flu-like feelings - that I felt just fine. Sometimes the operative word is missed in a wordy post. Maybe I should be more brief, but I wanted to say that even with the addition of Taxol and Navelbine at the same time as my loading dose of Herceptin I did not have those symptoms.
It was not until I was metastatic that I was able to get Herceptin. Be glad you can get it now, as it could save you some difficult days down the road!

The drug that gave me the flu-like symptoms was Taxotere. That one was hard on me and does not seem to have stopped my cancer advancing.

I have never had an allergic reaction to Herceptin or any of the other cancer drugs I have taken. But I DO have other kinds of allergies that pester me for which I take Allegra to keep under control. My point is that perhaps since I am always "on" allergy pills, maybe this keeps me from having any of the reactions or even running nose that others experience with Herceptin.

I really hope you continue to feel well on this drug, as it is really easy to tolerate compared to the rest we have had.

About the port. Since I felt it was very possible I would need mine for a long time, I had it put in lower down, but I also did not have a mastectomy so there was a lot of room to place it for maximum comfort. I also wanted to avoid the seat belt rubbing or pushing on it when I am driving. Port is on my left side.

As you aptly say - another battle scar!

Also Sandy H who posted had to stop her radiotherapy early due to problems. If you have any questions about this, she can help you.

jpuk · 11-01-2005, 02:58 AM

Yes, it seems I missed out the all-important negative. Sorry! I shall mention your comments to my consultant when I see him again later this week.