Need Help Undertstanding Herceptin Side Effects

[amdoyle]

Hi, I was diagnosed with BC Last February and received treatment.
My Chemo Cocktail was ACT and I started Herceptin with the Taxol. I finished Chemo August 8th and still am receiving Herceptin every 3 weeks.
From the Taxol I experienced the neuropathy, joint and muscle pain and it finally dissipated in Nov/Dec. I thought I was out of the tunnel but now it seems with every herceptin treatment about 10 days later, I feel similar pains.
I was wondering if anyone else experienced similar symptoms and can offer any hints on how to deal with them.
Thanks!!

[Paty]

Dear Amdoyle,

Welcome to this board. I am a 7-yo survivor and I also received Herceptin for a year every three weeks. Yes, I had muscle and joint pain during Herceptin treatment, I also had a runny nose during same period. That was about it, no other symptoms. Very good quality of life in comparison with Chemo time (I received 6 FAC rounds).

[IrvineFriend]

Herceptin is known to cause flu like symptoms. I always thought I was coming down with something, then I would remember I was infused x days ago. My last was about a month ago and all symptoms are gone. You're almost there!

[amdoyle]

Thank you Ladies. Your answers have helped me make sense of what is happening.

The effects are nothing compared to Chemo, thank goodness..

So I have narrowed it down that 10 days after infusion, I do get flu like symptoms and they are gone within a day. Unfortunately this brutal cold is making the neuropathy, which was minimal, act up at the same time.

Since I felt fine right after infusion, I did not think my symptoms were related to Herceptin.

Thanks again for input

[Becky]

I had headaches, runny nose, achiness and fatigue. Because Herceptin was not available when I was first diagnosed, I ended up truly having Herceptin alone - 4 months after chemo was done and 2 months after radiation was done so I kinda know (for me) what was more Herceptin related.

I also felt that my hair didn't grow as fast and my fingernails were very thin (this could be chemo related as these things could be slow to "reawaken").

[SusanN]

Hello,
I will be finished with my Herceptin end of March, first of April...I also have experienced joint pain...mainly in my hands...in fact, at night when I pull up my covers, that is when my hands ache...kinda odd. I also have had a runny nose, along with my eyes twitching.
Lastly, kinda strange, my lashes will start to grow in...then, they will fall out, not all of them, but some. Not sure what is going on...I'm just thankful I'm alive and nearly done!!

Hang in there...we're all in this together!!

[Lani]

Welcome. Please go to the Herceptin/Tykerb board and search

HER2 Support Group Forums > Herceptin / Tykerb
Please post your two cents on Herceptin "side effects" real or perceived!

There are 644 entrys.

Please also note my previous posts/reposts--about once ever year or two, about asking your infusion nurse to mix your herceptin with saline only, skipping the benzyl alcohol as a trial to see if that avoids your post infusion pains. This has been tried by quite a few on these boards , apparently with good effect.

Skipping mixing with the benzyl alcohol can only be done with the herceptin vial you alone get ie if your weight is such that you need more than one vial, say 1.25 vials, they will only be able to do it with the 1 vial and not the .25 vial as herceptin is too expensive to waste the other .74 (benoyl alcohol is a preservative and necessary if they are not giving the other .75 to someone else right away).

Again, it seems not to have been published but has been noted by quite a few who frequent these boards, that skipping the benzoyl alcohol avoids many of the musculoskeletal aches and pains that some experience.

I am in no position to and am not qualified to make any recommendations--am just reporting what others have found.

Others have asked their oncologist and infusion nurse--to my knowledge noone has reported that either their oncologist or nurse could fathom any harm in skipping mixing the preservative in as long as the infusion will be given upon mixture of the herceptin and saline.

Good luck and please post your experience on theHER2 Support Group Forums > Herceptin / Tykerb

Please post your two cents on Herceptin "side effects" real or perceived!

thread so others can benefit from your experience. I am hoping someday someone will "do something" with the experiences described as pharmaceutical companies seem not to complete their required post-marketing analysis though promised when FDA approval received (there doesn't seem to be as great a motivator as $$$$--once approved, there seems to be much less passion to ensure it is safe, help find ways to avoid side effects in the much larger ** group of people taking the drug)

** compared with those in the original trials which gained drug approval