Stage IV and Metastatic members-do you have weekly or every three week treatments

[CarolineC]

I am very blessed that I am able to have Herceptin covered in my province. My doctors have lately recommended TDM1 and have told me to contact our insurance provider to see if it is covered through them because the BC Cancer Agency doesn't fund it at this time.

I phoned insurance and was told that it is covered, however it cannot be administered through a government funded hospital, so I suppose through a private clinic? Or maybe our local drug dealer could help out. Just joking.... I think.

I posted extensively the other day about how I had to miss a Herceptin treatment because my ejection fraction went down. I then had a loading dose of 8mg/kg and I felt much better(I had energy, my back didn't hurt) so much so that I went to have my TMs checked the following week instead of before my next treatment like I normally do. My TMs lowered significantly and I was sure the higher dose had helped. On Monday I had them checked again and they are back up-I kind of figured they would be because my mid upper back was starting to be uncomfortable again.

My onc is convinced that my lowered TM results aren't right. I have asked him to give me a higher dose again and I would get them checked next week and we would see. He says he can't do that without evidence supporting the higher dose and how would I get it funded. I then asked if he would do weekly treatments because I feel that maybe I need the Herceptin weekly to keep it in my system. Again, he can't because there is no evidence and it is not funded.

I was very frustrated but I do understand that his hands are tied because of protocol (hate that word) and we need evidence to support the treatments. I feel strongly that maybe metastatic cancer should be treated with higher or more frequent dosing. I have a chance to be ahead of cancer instead of behind it and would much rather have Herceptin treat it than more chemo.

Those of you that are on Herceptin-is it weekly or every 3 weeks? How do you get your doctor to support you?

Lani, if you're reading this-are there any studies to support the efficacy of weekly or higher doses? I can't seem to find anything and I'm getting tired.

[StephN]

Dear Caroline -

You have had quite a time dealing with your available medical system. It is bad enough for us in the states, as things vary so much from place to place.

I can't think of anyone I know getting/or got Kadcyla on a weekly basis.

In my case I took weekly treatments of a three drug approach until I came to a remission. After that my maintenance Herceptin was taken on the every three weeks schedule. I got the Herceptin a little more slowly - during 60 minutes.

You mentioned our dear departed Gina in your other long post. She had a theory and was a one-woman test. She tried to avoid any chemo and then found she really did need it. I am sorry she was not around to take advantage of the new targeted drugs that might have done well in her case. My best thoughts that this will do the right job for you.

My doctor supported me on Herceptin as long as I needed it. There was NO question. I am the one who opted for a break and then that break became extended ... still is!

[conomyself]

Caroline, I am also on a 3 week schedule.

Here is the U.S. FDA Herceptin label, maybe there is one for your country too?

http://www.accessdata.fda.gov/drugsa...92s5250lbl.pdf

There are four dosing scenarios. It actually says for metastatic breast cancer to administer a 4 mg/kg loading dose then 2 mg/kg weekly.

If this is on the FDA label, there must be studies to back it up. I searched a little but didn't find the studies. I'll bet if you call Genentech they can tell you.

Love,

Rachael

[SoCalGal]

I go every three weeks, too.

[karina14]

Caroline, I am on a weekly Herceptin schedule, but can't say it is better as I started two and a half months ago. No concerns from the doctor vs 3 weeks. If the mets will get stable, we will probably move to 3 weeks.

[CarolineC]

Thank you all for your responses! Karina14 hopefully your current treatment will be effective. How are you handling it? What are you taking as a bone remodeller? Maybe if your mets get stable they should keep you at weekly.

StephN thank you for responding. I have noticed before in your signature line of your weekly treatment. Andi also had it for a number of years. Karen was having weekly treatments before they moved her to every 3 weeks and she recurred. I was just thinking that maybe some of us need to have Herceptin in our system more often because we're possibly clearing it too fast, or possibly a dual blockade with Perjeta or chemo or all three like Rachael and Flori.

Rachael, thank you for the link! I haven't contacted Genentech yet, but I will. I also remembered I met with a doctor over two years ago who was the head of the Neratinib clinical trial in Vancouver. He is the head of the tumour board, I was told by a BC Cancer Agency pharmacist, and maybe he'll have answers to my questions.

I've decided I am going to take a break for a while and just enjoy the upcoming month before I have to deal with scans and the roller coaster. The last few months have been so busy with appointments and scans and reactions to scan solution and Pamidronate. I had a Herceptin treatment last Thursday, we went to Spokane, WA on Friday for my birthday and I was pretty tired on the weekend-we didn't return until Sunday. It was so nice to get away and rejuvenate and today I felt pretty good.

Love to all of you,

Caroline

[CoolBreeze]

Canada is way behind the times on this, I'm so sorry that you have to go through this.

When I get Herceptin kind of depends on what chemo I do. Many of my chemos have been weekly so then I get the weekly dose of herceptin just to make it easier.

Right now, I'm off all chemo as I did gamma knife on my liver and my blood levels would not recover enough to do get back on chemo. So, to give me some freedom, I am on an every 3 week dose - I get perjeta and herceptin every three weeks, and zometa once a month. I was stable as of last scan.

I don't believe that there are studies that show a survival difference between the two but Lani is the one to go to for that.

I don't have horrible side effects from either drug so it doesn't matter to me when I get them.