[Cellomomof5]

Hi Fern,

I am also in a T-DM1 trial - I just had round 3 yesterday. My notable side effects have been:

• Neutropenia - my neutrophils dropped below 1000 and I had to have a T-DM1 dose reduction. Even with the dose reduction, they are still low.
• Muscle and join aches, pain & cramping - consistent throughout the three weeks - worst in hands and feet
• Mouth sores & dry mouth - better with dose reduction and a prescription for Chlorhexadine

Other side effects have been minor (drippy nose, mild platelet reduction, liver enzyme elevation). I also had loss of appetite the first week that "returned with a revenge" the second week - I ended up gaining weight overall, and am working hard to try to stabilize it. My doctor suggested drinking tonic water to help the muscle spasms - I'm going to try it. My night sweats & hot flashes have increased, but they think that is my hormones still all over the place since the A/C - I haven't had a period in three months.

I don't know about you, but for me, the achiness and stiffness is pretty significant, and hard to live with. Every time I sit or lie down, getting up and going again is painful! The rest is livable. I'm hoping I adjust to it as the year passes. How long have you been taking T-DM1?

Thanks for posting this - I've been interested in hearing how others are faring. Which trial are you in?