TDM-1. How quickly did it show it was working

[Nancy L]

I have some difficult decisions to make next week---Wait to see if I get approved for th3resa which will take at least a month or start a chemo???? And i may not get tdm-1--- need to factor that in too.

how soon after you started TDM-1 did they know if it was working? Were you feeling ill when you started TDM-1. My biggest problems are breathlessness and difficulty swallowing. I am dropping weight quickly. I have one more week of rads to reduce supraclavical tumor pressing on brachial plexus. The pain is intense. Had numerous scans and this is ths only tumor they can find but I don't believe it.

I am corresponding with Sheila because our journey's have similar twists---neck nodes and vocal cord paralysis. Sheila had good success with eribiulan. Anyone else have experience with this chemo for stage iv BC?

Anyone else faced with a similar decision--all feedback welcome.

Thanks for listening

[Jackie07]

Nancy,

Sorry to hear about your current dilemma.

This is one of the threads about T-DM1 http://her2support.org/vbulletin/sho...hlight=T-DM%21 You can find others by using the 'Search' button on top. Hopefully others will see this thread and respond.

Sending you good vibes...

[KDR]

Nancy,
I have been on T-DM1 for almost eight months. It's really hard to gauge how to tell if it's working because everyone is on different doses and schedules. In my case, I started this trial with Taxol, T-DM1 and Pertuzumab. Taxol was dropped after four months. The side effects were severe, but I was NED on the first cycle (I only had three areas of affliction when starting this journey: breast, lymph and liver). Only the liver spots remained when I began.
I am tired. T-DM1 is very hard on platelets, too. I don't consider this a walk in the park, but it is doing the job, so that's the trade off. I have terrible neuropathy (and onco says T-DM1 definitely causes it).
I am SORRY you are in pain. Do you have a pain management team?
You had asked me about certain trials at my facility recently. You could also look into Dr. Ian Kropp in Boston. (Hope I spelled that right).
Please keep us updated on your plan.
Warmly,
Karen

[Vicky]

Hi Nancy,

I've actually done both tdm1 and eribulin, or halaven. After three doses of tdm1 all of my liver lesions disappeared and both my breast tumor, mets in spine and lymph nodes all shrunk. I remained stable after that for almost a year. When I progressed in my lungs I started halaven and herceptin and in 3 treatments again the lung mets were disappearing. I finished 5 treatments before my counts kept dropping and after 15 months of nonstop treatment I am on a short chemo break.

I was not feeling ill before I started tdm1 but I did have some discomfort in my back. As for side effects I had 2-3 days of nausea and some fatigue, but it was manageable.

I wish you healing and wellness as you navigate this next chapter!

[pibikay]

Thanks for your thoughts.Hemas specimen block has been sent to Basel and we are awaiting the result / dercision of Roche.The Onc says after the second infusion you can feel the results