Question: low dose Herceptin

[bluesigo]

Hello, Does anyone have experience using a decreased dose of Herceptin to manage side effects while obviously maintaining efficacy? My wife has been metastatic for 5 years (liver). December 2011 she had a Cyberknife tx to the largest met followed by 4 months of Doxil to tx smaller liver mets followed by Herceptin alone which began April 2012. Scans progressively improved month after month to essentially NED (doctor won't say that though) and CA 27/29 is now 21.

Herceptin has been a mainstay of her treatment regimen for years and appears to be exceptionally effective. However, her side effects are becoming worse, specifically extreme fatigue, very significant full body pain and GI fx. The side effects are definitely dose related as she cannot tolerate the higher every 3 week dose.

On Monday she will try standard weekly doses for a month but I suspect this will not have any affect on the side fx. I believe the decreased tumor burden, hence more free herceptin, is responsible for the problems she is experiencing. So, I'm asking, does anyone have experience using lower than standard dosing to manage side fx?

Thanks to all.

[Lauriesh]

I have not done a dose reduction, but I have taken breaks from treatment because of side effects.

I have been stage 4 for 2 1/2 years and have been NED for almost 2 years.

I took last summer off, 3 months of no treatment, and it was wonderful. Side effects went away, and now that I am back on for the last 5 months, the side effects are coming back, but still not as bad as they were last spring.

My ca 27/29 has been reliable for me, so we closely monitored that and the her2 serum over the break, with the understanding if it started rising at all, I would go back on treatment.

My dr was not thrilled with me taking the break, telling me that it obviously increases the risk of the cancer coming back, but my thought was I am on this med to keep me alive, but if the side effects are so bad that my qol is so crappy, what is the point of staying on the meds.
I plan on taking another break this summer as well, as long as my scans still show ned and my tm's are still low.

There have also been discussions on here about how a preservative, benzyl alcohol, is added to Herceptin when it is mixed, and how that contributes to the joint pain from Herceptin. I now have mine mixed without this, and it does help cut down on joint pain.

Laurie

['lizbeth]

I did weekly Herceptin during initial treatment to minimize heart damage. I don't remember having the every 3 week dose.

I did well, and I am hoping that your wife does too. I saw a discussion on these side effects and believe it has something to do with what Herceptin is mixed with to prepare it.

Hopefully one of the ladies in the know will pop up and give their advice. Perhaps it is not the Herceptin, but the solvent that is causing the pain and distress.

[Lani]

if you go up to the red-purple bar above , click on search and put in Lani and alcohol you will get the posts.

['lizbeth]

Here is a post that contains some of the information I was thinking of:

Yes, my joint/muscle/bone pain went away in a few days after having the Herceptin reconstituted with saline water instead of benzyl alcohol. I don't quite understand it, but it works. Now I know I can finish my year of Herceptin.

[tricia keegan]

I did weekly herceptin on initial dx and had no side effects at all and hoping this will be the same for your wife.

[bluesigo]

Thank you for sending this information. We will definitely try removing the benzyl alcohol.

[bluesigo]

We wanted to use a 1 week dose today without the benzyl alcohol (BA) but doctor said this would require them to discard the unused Herceptin which would be very expensive and not reimbursed by insurance. He calculated the dose a full vial would supply as 2.5 weeks so my wife received that w/o the BA. We'll see how it goes but she will try at least 2 of these doses before trying either weekly (presumably with BA) or a lowered dose. We'll see how the side effects are in the coming weeks.

[bluesigo]

Dose administered on Monday ... so far no improvement without BA.

[bluesigo]

elimination of BA did not help