Any Sistas on TDM1???

WayTooYoung · 02-04-2012, 09:48 AM

Hello beautiful ladies,

I am 30 and am dealing with recurrent BC. I just got randomized into a clinical trial for TDM1. It is a blind study with two experimental groups; one with TDM1 and Pertuzumab vs TDM1 w/Pertuzumab Placebo. Although I hear many great things about this drug...I still have many reservations about it because I had a rough spell with my treatments first time around.

I am REALLY concerned about the following things:

-hair loss
-nausea/vomiting
-inability to work (I am a teacher)
-inability to work out (I love the gym)

If anyone can share ANY of their experiences with me, I would greatly appreciate it. I begin my first treatment this Thursday.

Thank You and God Bless,
N

chrisy · 02-04-2012, 11:49 AM

I was on tdm1 for 3+ years as a single agent with excellent qol. No hair loss, worked full time, travelled all over the world...it's a great therapy and very easy to tolerate. The only symptom I ever had was slight headache/fever on the day of infusion (this is immune response to the herceptin).. It beat up my platelets and liver function tests but that did not affect my daily life

Pertuzumab is also well tolerated and not going to cause hair loss.

I think you are very lucky to be I this trial!

WayTooYoung · 02-04-2012, 12:18 PM

Hey Chrissy,

You say that you have been on TDM1 for 3 years and i see that you were fortunate enough to have achieved NED in your bio...but then it came back? Is TDM1 not able to cure us?

I am having a tough time thinking about having to be on meds for the rest of my life...and constantly fighting to maintain or jumping from drug to drug.

How are you coping?

Thanx for sharing your experiences with me.

yanyan · 02-04-2012, 05:29 PM

Hi,waytooyoung! You are Very lucky to be on the trial. Although many have proven its effect FDA still has not approved it. I read about on Inspire victorygirls husband going to genetech begging them to.put her in the trial but got denied and that Kaiser called on her passing while he was still there. The trial.is closed in the US. Maybe they should tell patients to seek trial outside Usa. I hope this drug works for you as it did for others.

Vicky · 02-04-2012, 07:24 PM

Hi N,

I was also randomized to tdm1 in the first arm of the Marianne trial and get either pertuzamab or placebo in the second arm. I have all my hair and other than low platelets and some nausea/acid reflux issues (which are well managed with meds) I feel good and function well in daily life. Its truly awesome to be part of this trial. Tdm1 did not cure me, or get me to NED, but its given me a good run at stable and I'll take that!

Will be thinking of you come Thursday! Let us know how it goes!

Kathy T · 02-05-2012, 12:46 PM

I have been on T-DM1 for 2 1/2 years and remain stable. Very easy drug to tolerate. Side effects for me have been low platelets and increased liver functions enzymes. Good luck.
Kathy T

chrisy · 02-05-2012, 01:23 PM

Well, TDM1 did not turn out to be MY cure, but that doesn't mean that it won't be for somebody, particularly in combination with something else. We just don't know. I still believe that cure is possible, and that all the pieces may even be out there already but just not assembled properly yet. And of course, everyone is different.

Your situation may be very different in that your recurrence seems to be more localized.

I won't lie, I was majorly bummed when after 3 years on tdm1 the cancer recurred. On the other hand I had thought I'd never see NED again yet I did. And maybe he'll be back again and stay longer or maybe forever. I still believe this is possible.

My second choice (and I do realize its not necessarily up to me!) is to get the cancer under control and be able to keep it under control, managing it as more of a chronic condition with minimal impact to my quality of life. Despite the setbacks I experienced last year, I believe this is possible, and this is the goal of my rock star oncology team (although they won't mind a bit if I'm accidentally cured instead!). I guess instead of "cure", for me TDM1 turned out to be a great maintenance therapy which kept things under control with great QOL for 3+ years.

I get what you are asking...it is the same question my hubby asked my onc back in 2004: how can people ever live with this? (the mental, not the physical coping). Her wise answer was, with a slight shrug, "you just do".
The spirit piece of this whole thing is in many ways the hardest part. It is not something a doctor can infuse. Those who love you can help but so much of the battle is just you harnessing whatever you can to strengthen your spirit; keeping faith and being resilient. Repeatedly, over a long period of time.

Will you learn to do this?... Yes, you just do.

Hang in there.

WayTooYoung · 02-05-2012, 07:41 PM

Wow, thank you for sharing your TDM1 experiences with me. I feel a huge weight has been lifted off my shoulders...I do feel a wee bit edgy still...but not nearly as much as before.

Currently, I have 2 confirmed mets but they are local. One is in my chest wall (1cm), one is in my musculature (1cm), and the third area is in my mammory lymph node next to my Aorta. The biopsy for the lymph node came back inconclusive so DRs decided to eer on the positive side. Since its so close to the aorta, no Dr wants to biopsy the site again. Believe it or not, that 3rd site is what made me eligible for this TDM1 trial but only by default. Drs initially believed that my mets were surgically removable, thus making me curable...but now it's questionable because of the third spot. I am hoping that TDM1 will shrink things enough to make it surgically removable...would be even better if I can achieve NED.

I wonder, is it possible to remain NED forever? If so, how long do you need to be NED before they wean you off treatments?

WayTooYoung · 02-09-2012, 03:50 PM

Hello ladies,

Just wanted to say I just finished my first round of TDM1 with or without Pertuzumab. So far I am okay, the infusion took all day because they wanted to make sure I didn't have any reactions. Besides a little fatigued, I am okay. I will continue to keep everyone posted. Thank you for all your support.

Cellomomof5 · 02-12-2012, 08:56 AM

Hi N,
Hope you are still feeling ok after round 1. I have been on TDM1 for about 10 months - I have three more infusions of it to go to finish out the year long study. My reactions are fairly mild and predictable, and I've learned to work my life around them for the most part. I get TDM1 on a Thursday, start to feel a bit feverish and achy Friday night, and feel a bit flu-ey for most of that weekend. I use 3 Advil every 8 hours to get through that part while doing a normal weekend schedule. Monday can be a bit tough at work - tired and achy, but then things improve fast, and I'm fine until the next infusion. Like others said, elevated liver enzymes, low platelets, and for me, muscle aches and cramps are pretty much it. Occasional nosebleeds at night - particularly in the winter time when it's dry.

Compared to the other drugs such as Adriamycin and Cytoxan, it's a drug on which you can live, work and even enjoy your life.

Hope it works well for you.
-Karen

WayTooYoung · 02-12-2012, 07:21 PM

Hello Cellomomof5,

Thank you for sharing your TDM1 experience with me. So far I have been doing well except I have this slight headache which started today. It's annoying. I hope it goes away soon. Has TDM1 been effective for you? What will happen after you finish your last treatment?

I am on a study that does not have a set number of infusions...it's basically ongoing till it doesn't work or I develope toxicity. Scary to not be able to see an end to these treatments.

I hope your last treatment goes well, keep us posted.