T-DM1: 1st scans, tm's and side effect

[eric]

TM's came down close to 50% and CAT showed about 30% reduction!!! We're happy with the start and hope and pray it continues to get better and better.

On the not so great side, Caryn had to miss todays treatment due to high liver function and her eyes are really bothering her. The opthamologist said that the treatment has caused some bumps on her cornea that is causing some bad burning. Not typical for this treatment but it's there for her. She's a trooper and the good news makes it more tolerable.

[Joan M]

Eric, I'm praying that Caryn will be NED and that her eyes will be okay. Best, Joan

[lilyecuadorian]

the important things here is the tumors markets when down 50% and 30% of reduction .....great ...and the fever soon is going to be bye bye too ....

[chrisy]

Eric, that's great news! This stuff is pretty darn powerful, and I know you must be really heartened by the results so far.

I also have been dealing with elevated liver markers since starting this trial. They have never come back to anywhere near normal, but are now at least back in a "grade 1" toxicity range. I've not had to skip a treatment (not yet anyway!) but I know that one of the options in the trial is that your doctor can decide that a 28 day cycle would be safer and go with that. It might give a little more time to recover.

Interesting comment on the eye problems. I've also had problems with one eye since starting this, they thought it was maybe some conjunctivitis, but it sounds like a visit to the eye doctor is in order. So, it seems Caryn and I may both have stumbled upon a lesser known side effect.

I hope Caryn continues to feel well and can get back on a treatment schedule soon. You didn't mention fever in this post, but my experience has been I would feel feverish about 1-2 says after treatment, but this diminished with each treatment. Last week I couldn't get that lousy thermometer over 98.4. So no more laying around collecting sympathy for me!

Thanks for posting your update!

[caya]

Great news Eric - Thanks for sharing, as we LOVE to hear good news. I hope Caryn's eye and liver function problems improve ASAP.

all the best
caya

[Julie2]

Great news Eric. Wishing continuous improvement and total NED by the end of the trial.

Julie

[Verna]

I to just had my 4th T-DM1 treatment. All is going well, my tumors have gone away completly. Interesting regarding the eyes. I have been having trouble as well. I'm 45, and I just thought maybe my age was the problem. Guess I better make an appointment and get this checked out.
Thanks for sharing.
-Verna

[Kim in DC]

Eric,

I was thinking about you guys. I'm glad things are going well!!! I'm sending positive vibes

Kim

[hutchibk]

Yeah RunDMC1 trial! So what are the components in the trial besides Herceptin?

[Mary Anne in TX]

Wonderful news today! Can't wait to hear even more good news from you Eric about Caryn! ma

[chrisy]

Hi Brenda,

Ha ha, I thought I was the only one who called it that! Well, maybe Flori, too - she even had a rap about it...

The drug itself is a herceptin molecule linked to a toxin called DM1. The "linker" molecule is called MCC. So the full name of this crazy ass wonder drug is

Trastuzumab-MCC-DM1.

So, there are 3 components but only one actual drug. Sort of like a reeses peanut butter cup but not as tasty.

The MCC is important because it is the first one that actually worked in the sense of "hanging on" to the toxin long enough to get it into the cancer cells - as opposed to releasing it into the general bloodstream. A critical factor, as the DM1 has had limited usefulness in the past because it is umm TOO TOXIC.

DM1 is in a class of drugs called maytansinoid. It is supposed to be 100x as strong as Vincristine. I heard that during the poster presentation at San Antonio.

It's given in a 1/2 hour infusion but it actually takes an hour because they have to do a blood draw 30 minutes post infusion.

Overall, there seems to me to be a TON of data being collected...weekly labs and lots of blood tests to determine how much of the drug is in the bloodstream (hopefully a lot) and how much "free DM1" is in the bloodstream (hopefully not much). Other than that and the odd bit of liver and platelet toxicity, it's pretty tolerable.

[Jean]

Eric and Chrisy,
This trial sounds so hopeful...
Please keep all of us updated and my prayers and healing wishes are with both of you.

Hugs,
Jean

[hutchibk]

Thanks Chrisy... this is one of the things in the 'pipeline' that is on my back burner, should I lose favor with Tykerb/Xeloda...

I am happy to have the info. Does anyone here know the details and status of the Herceptin/Tykerb trials?

[eric]

Sorry for the following not so great news but I think it's important to share as someone else might benefit...

Some good news, some not such good news and some positive news...

* Good news: Caryn's 1st scan results came back reinforcing the positive story her tumor markers told us last week. The drugs not only kept the cancer from growing but showed about a 30% shrinkage in certain areas. A GREAT start that everyone's very happy with. YEAAAAHHHH!!!

* Not such good news: Caryn's been having a TERRIBLE time with the treatment. She's had burning in her eyes that has gotten worse over the few weeks and she ended up in the ER last night with terrible chest pain. All tests in the hospital revealed no abnormality in her heart and lungs. Additionally, she had a recent physical where they were concerned about her breathing capacity and recommended that she see a pulmonologist. Between feeling badly physically and the stress and time investment for going into the city each and every week, it's no wonder that Caryn is not a happy camper these days. She has had a difficult time in light and has spent a good deal of time sleeping due to fatigue and the pain in her eyes. The doctor at Sloan heading up this trial hasn't seen this kind of reaction and really had no idea of what was going on so she recommended going to a cardiologist in addition to the pulmonologist.

* Positive news: Caryn went to an Opthamologist for her eyes. This Dr. saw bumps around her corneas but wasn't sure how to proceed so she referred Caryn to a Cornea Specialist. We saw the specialist today who id'd the bumps and feels that they can be managed while continuing her treatment. While still at this specialist, Caryn asked me to call the cardiologist to schedule a stress test and call her primary Onc to get the name of a good pulmonologist. Upon hearing about the series of events and how badly Caryn had been feeling, the Onc INSISTED that Caryn come right in. Thankfully, he seems to have put the pieces together. It appears that the treatment is causing inflamation in Caryn's system. He wants to put her on a brief steroid regimen to reduce the inflamation and prevent any lung damage. He agrees with the decision to see a Pulmonologist and has given her a name. He has also confident that there is no need for a stress test. For now we continue on treatment full steam ahead!

[chrisy]

Eric,
Thanks for the update, I hope Caryn feels better soon. I think this is one of the downsides of early trials - they just don't know what to expect in terms of side effects, so neither do we. Your sharing this is very helpful to those currently in or considering this trial, as it gives us one more piece of information.

Nice to hear Caryn doesn't need a stress test. I think you've had enough stress testing over the past few weeks already.

Hugs
Chris

[Bill]

Eric, wow, I feel for you, brother, and Caryn, as well. You both are in my thoughts and prayers. I'm glad to hear about the TM results, but sorry to hear about the eye troubles from you and the other Ladies. Regarding the steroid "thing", Nikki was on Dexamethasone for awhile, and her glucose levels went up to where she required insulin shots, so keep an eye on that, too. She had one failed port removed, and another one installed "next door", and the removal site never healed properly, until she had a few insulin injections, and then she healed right up. Keep fighting the good fight!