Anyone on TDM1???
 

Hello beautiful ladies,

I am 30 and about to begin the second battle with BC. I am about to start a clinical study involving a drug called TDM1. It is a blind study with 2 test groups; one with TDM1 and Pertuzumab and the other with TDM1 and a placebo pertuzumab. I had a TERRIBLE run the first time with FECT and although I have heard many promising things about this drug, I am still weary about it.

Things I worry about:
-hair loss
-nausea/vomiting
-ability to continue working (I am a teacher)
-ability to continue working out

I would appreciate it if ANYONE can share any of their experiences with me. It would greatly help me prepare for my first treatment this Thursday.

Much luv and support,
N

Re: Anyone on TDM1???
 

Hi
Try posting this on her 2 group on the board. I think you will get more replies and your thread won't get lost.There are certainly a number of sisters on T-DM1 who i am sure will respond.
Ellie

Re: Anyone on TDM1???
 

Oh okay...I'll do that...thank you. I am new to this.

Re: Anyone on TDM1???
 

My wife is on t dm-1, doing great in her 15th month . Very effective w/ strong her2 overexpression. great quality of life, no hair loss, nausea, etc. I dont think you lose hair on pert either. Its an anti-body , like herceptin. Not a chemo. When Lorraine first started t dm-1, at a 3.6 dose level, she got chills , fever for a couple days. She did have a steady , gradual platelet drop, about 30 % + do. Eventually she reduced dose to 3.0, and that has worked great. 7 tumors in liver, 1 on adrenal gland, 1 on right kidney, 1 on bile duct, ALL GONE ! You can see her in our youtube video, " FDA Blocks Life-Saving Cancer Drug ", Part 4. Look at Peter in Part 3, hes on a trial w/ t dm-1, pert. and taxol. Great results after just 3 doses.
It is abreakthrough drug, first of its kind, few s/e and blows up her2. With pertuzumab further weakening the cancer cells, I think t dm-1 will work even better, at lower doses.

Re: Anyone on TDM1???
 

Hello Phil,

Thank you for sharing your wife's TDM1 experience with me. So far, I have heard nothing but good things about it so I feel pretty good about it. I really hope that this drug works for me because I have my whole life ahead of me to live still...just sucks I have to deal with this again. Been so hard trying to juggle this with work...

Thanx again :)

Re: Anyone on TDM1???
 

N,

Just saw your thread - how did your first infusion go? Below is a thread on the hair thinning issue of T-DM1:

http://her2support.org/vbulletin/sho...ighlight=T-DM1

You can look up threads about T-DM1 (use the 'Search' button on top - try both T-DM1 and TDM1; there's also one called 'T-DM!') to find more members who've been on T-DM1. There's a 'calling all stage IV sisters' thread where you can find a chart listing treatments each member has used.

You can then go to 'Members List' and locate past postings of each member.

Sending you good vibes.

Re: Anyone on TDM1???
 

Hi WayTooYoung,

Can I ask a question about your trial? I have not seen many current T-DM1 trials now that do not have the addition of another chemo agent (Taxol, Navelbine, etc.). Is this also the case for your trial? Or are you really just getting T-DM1 + Pertuzumab/placebo? I would imagine that a Taxane would be part of the control of this study?

Re: Anyone on TDM1???
 

Hi Her2newBEE,

The clinical study I am on is TDM1 with or without Pertuzumab. The DM1 is the chemo. There is another experimental group that TDM1 is being compared to; Herceptin and Taxotere.

Below is a summary I copied from my trial website:

Official Title
A Study of Trastuzumab-DM1 Plus Pertuzumab Versus Trastuzumab [Herceptin] Plus a Taxane in Patients With Metastatic Breast Cancer

Summary:
This randomized, 3-arm, multicentre, phase III study will evaluate the efficacy and safety of trastuzumab emtansine (T-DM1) with pertuzumab or trastuzumab emtansine (T-DM1) with pertuzumab-placebo (blinded for pertuzumab), versus the combination of trastuzumab (Herceptin) plus taxane (docetaxel or paclitaxel) in patients with HER2-positive progressive or recurrent locally advanced or previously untreated metastatic breast cancer. Patients will be randomized to 1 of 3 treatment arms (Arms A, B or C). Arm A will be open-label, whereas Arms B and C will be blinded.



I have only had one infusion to date...so far side effects are tolerable. I was able to go to work the next day and I didn't experience any vomiting. I am hopeful for this drug. Are you considering TDM1?

Re: Anyone on TDM1???
 

WTY,
Hi! I have been on a T-DM1 trial with Pertuzumab. Do you know if you are getting the Pertuzumab or not?
Karen

Re: Anyone on TDM1???
 

Hi KDR,

I am not sure if I am getting Pertuzumab or not as that is the "blind" part of the study. How are you finding TDM1?

Re: Anyone on TDM1???
 

WTY,
Since Taxol was just dropped from the group of drugs, I'm not sure yet how I'll feel on T-DM1 with Pertuzumab just yet. This is a very unique and powerful trial. It really knocked me out on some levels, and I am just adjusting to the feel of it without the pre-meds and Taxol. Since these are considered targeted therapies, I'm banking on feeling pretty well. We shall see,
Karen

Re: Anyone on TDM1???
 

Hi there from Australia,
I have just started T-DM1 and perhaps Pertuzamab with the Marianne trial. I believe it will be much easier to tolerate than conventional chemo, and after 2 sessions, so far so good. I have had a bit of a sniffle, slightly upset stomach, a little tired - nothing at all dramatic. The worst so far I think was the flu-like period after my first dose of Zometa. Hair still there!
Hope all goes well for you..... Pam

Re: Anyone on TDM1???
 

Hi,

I am on my 15th cycle of TDM-1. The side affects are for me, platelet drop, and elevated liver enzymes. No hair loss. I do experience slight nausea on the first and second day after treatment. I am able to live a normal life. Please feel free to email me, if you have any other questions.

Best wishes
Fern

Re: Anyone on TDM1???
 

Hi All!

I have been on T-DM1 since July 2011...so far things are STABLE! Hoping they stay this way! (Although a little shrinkage wouldn't be so bad either lol)..I too have had low platelets and elevated liver enzymes...and frequents nose bleeds (which is just annoying, but I can definatly live with them) I had two dose reductions because of the liver enzymes (I think that's my limit) So I'm really hoping and praying that it continues to work for me I go for my 6 week scan this Friday so time will tell! Does anyone experience achy/stiffening of their feet/heels/calves after resting/sleeping?? But once I am up and moving it goes away.. I'm trying to determine if its my meds or just age (although it's much more noticeable and constant in the past few months). I am also on Ixgeva(Denosumab) for my bones, is anyone else on this and if so, do you have these symptoms??

Laurie :)

Re: Anyone on TDM1???
 

On T-DM1 and Pertuzumab only now. Yes, I do have the stiffening and cramping when waking but stand up (and think of Denise Austin) and do exercise. Just reaching down to touch toes and stretch arms out a few times, then I'm off and running all day--till 10:30 PM.
I just spoke with a woman yesterday who has been on T-DM1 for 18 months (and who had extensive liver mets and was, in her words, nearly ready to go). She is NED, with an occasional nosebleed. They have eased up on her dose and placed more time in between scans. Pretty promising meds.
Remember, 8 June is the FDA action date for Pertuzumab and it's looking like December for T-DM1, but letters to Ms. Sebelius can't hurt.
Everyone should have an opportunity to take these drugs or at least have the ability in their back pocket should the need arise.
Karen

Re: Anyone on TDM1???
 

Hello everyone, greetings from the UK :-)
Im janine aged 35 and live in nottingham, robin hood country in the uk.
Im on the tdm1 marianne trial too and have been since dec 2011. I have my 11th cycle next week. I wanted to share my side effects to see if anyone else is experiencing the same and ask a few questions:
Sickness for 2 days
Bad no.2's all the way through
Numb feet
Fever, flu symptoms,
I have had cold after cold on this, bad sinus pain, lose voice frequently, anyone else???
Bleeding nose
And the big thing for me is that my sight is bad, blured vision. I have severe astigmatism casused by this drug, now wear glasses which help but cant drive at night as i see 3 blobs insted if one traffic light?, very weird.
On a plus after 3 cycles my recurrence rash went and my huge half breast lump whuch was so fast growing went. My latest ct scan has showed it to be in the soft tissue of the breast but no lump. Not spread anywhere else as yet alhough my consultant thinks my breast lump was a spread from the first cancer i had ( other breast) ie. secondary bc. I refuse to believe him and want a mastectomy. Does anyone know if you are allowed a mastectomy whilst on tdm1????
Look forward to hearing from you all, thank you. Xxxx janine

Re: Anyone on TDM1???
 

Hi, Janine,
Welcome!
Side effects: runny nose, nosebleeds, weird feeling for two days after and neuropathy
I had vision problems when this protocol still included Taxol.
Karen