Re: TDM-1 side effects
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?
__________________
Karen
Age 49 - 1/24: dx IDC in right breast
- 2/16: lumpectomy, axillary node removal
- path: Stage 3 grade 3 IDC, ER+, PR+, Her2+++, 5/13 nodes
- 3/10: began 4x AC
- 5/12: began 17x T-DM1
- 8/1: 6 weeks rads
- 9/20: started Tamoxifen
- 4/12: Last T-DM1 infusion!!!!
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