Side Effect TDM-1
 

I been on TDM-1 since July 2010. October, I was denied treatment because my ejection fracture was at 40 and giving medication to help lower my blood pressure. December, I have been dealing with pressure between my breast and treatment was denied again. The doctor order more meds and increase the med I have. January 4, I had a bad night sleep, pressure on my chest got worse and I couldn't breath. I end up in ER and admitting. The treatment I was getting cause Acute Coronary Syndrome and Cardiomyopayhy. My heart wasn't getting enough blood or oxygen and damage to the heart muscle of my heart. The doctor lower my blood pressure so my heart don't work to hard. I came home on the 6th. I feel better but moving slow.
I truly feel they are going to kick me off this clinical trial. :'O(

Re: Side Effect TDM-1
 

Wow, Rendi -
What a New Year you have been having. I knew you were in the T-DM1 trial and was waiting you to post some good news. Very sorry your heart is not handling this drug too well.

Other than your heart issues, how has the drug been working against your mets? Or were you waiting for scans?

Hope the cardio folks can keep you on your feet and moving a little faster!

Re: Side Effect TDM-1
 

The treatment is working very well. It is just the heart issue.

Re: Side Effect TDM-1
 

Rendi, it is good news TDM-1 is working and I really hope you can stay on the trial. I hope your cardiologist will find a way to improve your heart condition. I have no knowledge on that but maybe some here do. Sending Hugs. Michka

Re: Side Effect TDM-1
 

Rendi
I was put on Coreg to strengthen my heart before and after I had the pericardial effusion...and my EF kept dropping. It brought my EF up. I have learned that there is a big difference with my EF fromn a Muga (low) to an Echo (higher reading) . I am also on Lisinopril for B/P and that also strengthens the pumping action of the heart. Hope this helps.

Re: Side Effect TDM-1
 

'I truly feel they are going to kick me off this clinical trial.'

Don't get ahead of yourself. You might be correct, but just take it one day at a time and live in the 'here' and 'now'. Even if they do kick you off the clinical trial, there will be something else available and who knows, it just may work out better for you.

I know it felt like a defeat and there's a feeling of losing control. Concentrate on things you can do and options you can try.

Please keep us updated. I'm sending you good vibes.

Re: Side Effect TDM-1
 

I can sympathize with how you are feeling. After being on the TDM-1 trial for over two years I had to stop taking it because it was causing lung inflammation. It was working for me and I was quite upset at the time. I am currently on Tykerb and Herceptin which is also currently working. I hope that you will be able to continue the trial at some point.
Barbara H.

Re: Side Effect TDM-1
 

Rendi,

You've been through a lot. I hope your onc will be able to keep your heart function up so that you can continue the trial. I'm praying that your onc will work out something.

Joan

Re: Side Effect TDM-1
 

Thanks ladies for your kind words. I'm pretty sure I will not get treatment on the 13th because the cardio lower my blood pressure for my heart don't have to work hard. I have lisinopiril 10mg 1 daily, digoxin 125mcg 1 daily, carvedilol 12.5mg 1 daily, and postumim 40mg daily. After 40 days I will be off the program if I don't receive treatment. The 13th will make it 24 day.

Re: Side Effect TDM-1
 

Rendi
Think of this as healing time for your heart. I'm glad the treatment is working and I hope that you soon feel better. If your heart problems continue let's hope the next treatment option is better suited to you.
Trish

Re: Side Effect TDM-1
 

I too am on TDM-1 and have done over 21 cycles at 3.6 (max dose). My last scan showed a 4mm node in my right upper lung and now I am experiencing a heaviness in my chest, and slight difficulty breathing.
I am not experiencing any of the stabbing lung pains, which I had the first time round with lung mets. So I am thinking that it may be lung inflammation, and then again it may be mets. Otherwise I am feeling good. Platelets are at 109 and liver enzymes are still elevated. I will be doing a scan at the end of this month and will update then. Does anyone have any suggestions of what treatments they would choose next, if I have to. I always like to be prepared and informed. I am looking at Herceptin and Tykerb or Petuzumab.
Fern

Re: Side Effect TDM-1
 

Coming off of tdm1 (pertuzumab or placebo was in the second arm of the study I was on) my oncologist decided on Halaven as I too had developed small lung mets. My current insurance does not cover non-infused drugs or he would have gone to either Tykerb or Xeloda. The Halaven shrunk the mets after just a round or two and kept me stable for 5 or 6 rounds. I too had 1 brain met zapped and my counts became too low... I was given a chemo break (4 months) and am just now going to have a scan for pain in my back again.

Looking forward to what others have to say! Blessings to you for healing!