12 Weeks of Herceptin

[Angela]

I had my 6 months appt today and he said everything was fine. Then he wrote down herceptin and told me he would like for me to take herceptin once every 2 weeks for 12 weeks. Has anyone done this? I have so many question. Side effects? Is it worth the heart risk? Why if everything is ok should I put myself through more medicine? Will insurance pay?

My History: Dx May 2003, DC 2.5 tumor, had mastectomey, no node involvement. Did 4 round AC. Had a hard time with the chemo. Extremely low blood count, reaction to procet (sp?) - rash, reaction to neulasta - trouble swollowing. Extreme constipation with AC. I have been doing fine since treatment. It took a while for my energy to come back and it is still not what it was before treatment.

Any words of wisdom, oppinions, and prays will be greatly appreciated. I hate making decisions like this. If I had signs of the cancer returning it would be a no brainer.

Thanks,
Angela

[Becky]

Herceptin is a very easy drug to take. Did your onco order a muga or echocardiogram to see if your heart is in decent enough shape to take Herceptin.


You will find the first dose tiring and you may get a headache and achy. But otherwise, its really ok. Did you ask why you are only getting 6 doses as most get 52 weeks of the drug (18 treatments, one treatment every 3 weeks and some people get weekly treatments for a year).

You will not lose your hair (it is an immunotherapy not chemotherapy) and it does help with the risk of recurrence.

Kind regards

Becky

[suzan w]

Hi Angela, I also had 4 rounds of A/C and had a VERY hard time with it. Was supposed to have 6, but oncologist cut it short-too many side effects. For me, the chemo was preventative-I had an Oncotype DX test done-put me at a high-intermediate risk for recurrence. I had invasive lobular carcinoma-small tumor 7mm, ER+,PR+,Her2+++.Had bilateral mastectomy (June "05). Am now doing a year of herceptin-started last Oct. will be done Oct. '06, every 3 weeks. I have almost no side effects from the Herceptin-especially compared with the A/C! I am having more side effects from the Arimidex (for the ER+). You will do fine with the Herceptin! I consider myself lucky (ha! who would ever have thought any of this would be lucky!!??) to get Herceptin!

[Bev]

Hi Angela,

Tune into this board closely during the next 2 weeks as the latest ASCO studies will be released. Maybe looking at stats will help.

I have very similiar DX and am tolerating herceptin fine. Onc nurse did say if you tolerate A/C fine you tend to do well with all the rest. But if you don't.... who knows?

There does seem to be a lot of other drugs on the horizon, but I've noticed that there aren't as many trials available for stage 2.

Lots of people in your shoes would do herceptin. The somewhat rare heart failure is usually reversible. You need to be monitored. Long term, I guess we don't know, so I guess it's a bit like gambling. I'm going to worry about tomorrow, tomorrow, and do herceptin now. Good Luck, BB

[MJo]

I am Stage 1. I had a rough time with AC too. Funny thing...I was afraid of the Taxol and Herceptin and thought AC would be tolerable. The opposite happened. I feel tired for a day or two after Herceptin. Also get a mild headache for a day or two. I had a drop in my MUGA, but am still taking Herceptin. Oncologists don't Herceptin unless MUGA drops below 50, and I have 9 points to go. It's a good drug. A very good drug. I told my oncologist I have very high expectations -- I expect a cure. He laughed and said I'm not being unreasonable.

[Christine MH-UK]

The heart problems for this use of herceptin are well worth the risks, particularly if you are ER-/PR-, since there isn't anything else they can give you to keep the cancer from coming back. Compared with chemo, herceptin is a doddle. On herceptin, I can work and spend time with my child, whereas on chemo I did neither. I do get more tired on herceptin, but a year in the HERA trial halved the risk of the cancer coming back, so I think that it is worth it.

The only questions I have are why your oncologist is only recommending 12 weeks and why he or she is acting so late (since the herceptin story broke about this time last year).

[atdec05]

Hi Angela,

I'm surprised that your doctor is recommended that schedule for Herceptin. All the trials so far have established that Herceptin be given every 3 weeks or every week. Except for one trial where it was given only 9 weeks, all other trials have been one year or more.

You should ask your doctor whether this is a new trial, or why he is doing something different from established regimes.

- Anna

[Bev]

Hi, Regarding insurance. call them. ask for the manager and have them review it. If you and your doc write letters I think they will cover it. Initially they told me they couldn't tell me if they would cover until after I had treatment, but they covered after I contacted the state insurance board.BB