"More than 20 lesions" - MRI report
 

In my liver! What the heck did I go through all these months of chemo and an ablation for? Even the ablated area is growing again! I'm so angry! I also feel hopeless. I'm supposed to start TDM1 but herceptin doesn't work for me and isn't TDM1 based on herceptin? Why bother? This is ridiculous!

- Penny

Re: "More than 20 lesions" - MRI report
 

I am sorry to read your news. Perhaps you can ask your doctors about tumor profiling to see which medicines will work the best.
Hang in there and keep going.

Re: "More than 20 lesions" - MRI report
 

Penny,
We all seem to take our turns in the barrel. I am really sorry to hear this news, but don't let it get you down-I know, easier said than done. When I was searching for a trial when it wasn't available at my center AT THE TIME , a MD (minor deity) actually told me Herceptin doesn't work for me. He was irked that I didn't stay on his trial when I wasn't randomized to T-DM1. Long story short, I went back to my "house" and got on the T-DM1 trial, and thus far, the results have been good. I always try to stay one step ahead, looking for what's next...which I believe is somewhere in the immunotherapy department. Why bother? YOU MUST and YOU WILL!
Keep going,
Karen

Re: "More than 20 lesions" - MRI report
 

Oh Penny, I am so sorry to read this. I have no words...only prayers prayers prayers.
Leah

Re: "More than 20 lesions" - MRI report
 

I can certainly understand you feeling angry, and Im so sorry to hear this news. If Herceptin didn't work for you, I don't think that necessarily means the TDM1 won't as well. Different combinations work for different people. I am always inspired when I see all those NEDs in KDRs signature! Lots of prayers headed your way...

Re: "More than 20 lesions" - MRI report
 

Penny,
By definition herceptin alone doesn't work if you have had progression. It needs hep.

I asked the same question before I went on TDM1 - why would this work if herceptin.

My dr gave a much better answer. Because its different! You are not relying on the herceptin to deal with the dancer...you are using it as a targeting mechanism to find the cancer cells and deliver the payload directly to the cell. Keep faith..

Brenda, Sheila and I had a response for that kind of MRI news. It began with W and ended with F.

Hang in here!
Chris

Re: "More than 20 lesions" - MRI report
 

Penny, I understand you so well. I had the same questions about TDM1. Herceptin never worked for me. I had 2 dozens of tumors all over, including the liver, when I relapsed. As KDR wrote , "thus far" TDM1 is working well for me. It is worth trying. Be angry and go! Hugs. Michka

Re: "More than 20 lesions" - MRI report
 

Wondered if that's one of the reasons why the name has been changed to 'Kadcyla' http://www.immunogen.com/pipeline/tr...mab-emtansine/

Looks like Herceptin only plays the role of a 'vehicle' in this one. The 'toxin' (emtansine) is the one that kills the cancer cells.

Re: "More than 20 lesions" - MRI report
 

Thanks everyone. I was hesitant to post because I feel like all I do lately is whine, but I knew you'd all make me feel better. Chrisy, you don't know how badly I wanted to title my post with the "begins with W and ends with F"!

I've been praying so hard to decide what to do about work. I just couldn't give it up even though going gave me anxiety. I'm just too hooked on the income. I kind of always thought in my head that the day I have major progression will be the day I definitely retire/quit/go out on disability. So this is it! My husband has been telling me it will be ok, God ALWAYS provides for us, so I've already warned the kids. We're officially low-income. Go get jobs! LOL.

Re: "More than 20 lesions" - MRI report
 

As Chrisy said, herceptin alone doesnt work for many, but many of those get a tremendous kick from T DM-1. Lorraine had 7 measureable tumors , and more smaller lesions , never counted. Our oncologist used an analogy at the time about L's liver : " Its' now like weeds in the lawn , the weeds are growing, and more are popping up " , very scary, that was October 2010, and she is now ned since Nov, 2011, in her 29th month . GET T DM-1 ASAP

Re: "More than 20 lesions" - MRI report
 

TDM-1 since Nov. 24th , 2010. All those lesions were in liver , and cancer had started squeezing R kidney, and bile duct shut. ALL Gone !! Praise God !

Re: "More than 20 lesions" - MRI report
 

Phil - Praise God indeed!

Re: "More than 20 lesions" - MRI report
 

Jackie,
KADCYCLA was born to include the ADC (antibody drug conjugate).

All,
God is ever-present. Listen and you will hear. I must pass on the loving kindness of St. Therese, Little Flower, Tender of the Gardens of Heaven, the saint who has carried me through. OK--it's not for everyone. But let me share this with you: Once before I went for treatment and news of my scans about two years ago, my husband, father and I huddled in prayer and asked St. Therese for a sign of her presence, which is usually a rose. We left for the appointment and stopped at a red light on one of the avenues. People had the light and were crossing the street. A woman rushed across the street, holding a bouquet of roses in her arms; she stopped in front of our car and smiled broadly before going on. It was miraculous! Please do not be afraid to ask for help from outside our realm. They ARE listening.

With love,
Karen

Re: "More than 20 lesions" - MRI report
 

Penny,
Well...that sucks!
Period.

I have a friend who has a habit of looking up and asking..."If this is how you treat your friends...is it any wonder you have so few of us these days?!" I mean really.

Now, having said that...I'm sure He has a plan (not willing to concede that I approve of it yet) so of course...being Penny, you'll relocate your hope, strength, resolve...and faith (but not immediately...be pissed for a bit first!) and keep going.

Lots of sage advice about the wonders of Herceptin combinations already here.

I totally get the whole income vs disability thing...but honestly...not having to juggle illness, work, and appointments...doesn't suck either. I figure, no matter how much my income gets cut...it will never be as low as when we first got married. Geez, we were like church mice. And besides...I can only handle one full time job right now,,,and 'not dying' is my current profession! :)

PM if you ever want to vent, or compare miseries. One of these days we both have to be in Philly on the same day! I am soooo saving a GIANT hug for you, my friend!

Praying for you...every single day!
Denise

Oh...and BTW gals the "phrase" technically starts with W and ends with K :) just sayin'...but I'm totally with you on the sentiment...times infinity!

Re: "More than 20 lesions" - MRI report
 

I'd like to buy a vowel.

Re: "More than 20 lesions" - MRI report
 

Penny -

I am so sorry you have to dal with this... Sending good juju your way.

Re: "More than 20 lesions" - MRI report
 

SoCalGal - LOL!!!!

Re: "More than 20 lesions" - MRI report
 

Hi Penny I am sorry to hear about the progression after all you have been through. Phil posted in another thread about a woman in LA treated at UCLA got out of hospice shortly after she received the 1st infusion of TMD1. She was fighting metastatic BC for 14 years and herceptin kept her stable until it progressed. Her doctor at UCLA called ger in hospice after FDA approved TMD1. Now she is planning on a vacation in Hawaii. Please don't lose hope !!

Re: "More than 20 lesions" - MRI report
 

Thank You, Lord, for today's treatment. Please bless it and use it for Your Truth & Healing in me. In Jesus' Name, I pray. Amen.

Re: "More than 20 lesions" - MRI report
 

Hi Penny
I was upset to read your news but glad that there were good options for you to try. The explanation of how T-DM1 works differently is certainly my understanding from across the pond. A young woman at my centre has kept her liver mets stable for 5 years on herceptin alone but then had progression. She was able to get into a T-DM1 trial and has now been 2 years NED. Expect a miracle, I'm sure they happen!
Hugs
Ellie

Re: "More than 20 lesions" - MRI report
 

Dear Penny,

I'm so sorry! What a blow!

To what everyone else has said, let me add that a woman in my in-person group had extensive liver involvement and is doing well on TDM-1. We all thought she was done, but she's not.

Go ahead and give it a try. We're rooting for you.

Re: "More than 20 lesions" - MRI report
 

Penny,

If you don't try TDM1 you'll never know if its your unicorn. Give it a whirl.

I think its okay to whine really. 20 liver mets, blah! And you worked so hard to eradicate them.

Re: "More than 20 lesions" - MRI report
 

"Expect Miracles"
Now that sounds like my friend, Penny!
You go girl!

I can almost hear those met screaming from here!!!
Remember...rest easy, but lean hard...He's got you...
Denise

Re: "More than 20 lesions" - MRI report
 

Penny, I'm so sorry to hear the news. I remember how upset I was, after having a liver resection, to have cancer grow back. I mean, I cut out half my liver!! All that pain and suffering and even going septic, all those articles about oligomets and living 10 years cancer-free - and I didn't even get a year without cancer. It's hard to face all this failure when you are doing everything in your power to help yourself but sometimes that's the way it works.

But, TDM1 is different than herceptin, and here is the way it was explained to me, but ask your doctor, and take it for what it's worth: Herceptin gets to a tumor and targets the HER2 protein, but not the HER3 or 4, which is why it only works for about 20% of us. We are overexpressing more than just HER2. TDM1 takes a specific chemo and molecularly binds to it, and hand-delivers it directly to the tumor. This is a chemo we wouldn't be able to tolerate if it was just pumped into us, it's so strong, but because it binds with the TDM1, we can handle it. And, the herceptin part also targets other HER2 proteins. SO it is NOT the same thing. That is why it is working on women who have progressed on herceptin. I mean, you can't get it until you have had failure with a taxane and herceptin and it still works for many of those woman, right?

It doesn't work on all of them, but it works on some. So I can't think of any reason not to try it. It will be my next chemo and had I not gotten regression with Gemzar, I'd probably be starting it next week.

I'm incredibly impressed that you have been able to continue to work. There is no chance that I could have held down a job this past year. I gave mine up nearly a year ago - it was a terrible decision to have to make but I was only working half time and I knew I couldn't go back to full time. I was right. So now I'm on disability which isn't much money but helps. I also spend almost nothing if that helps you. I used to be buzzing around, shopping, buying food, spending money and now I don't leave the house much so a lot of my expenses have gone. Maybe you didn't do that but not spending money helped us stay within our budget.

The fact that you have worked going through all of what you have is amazing and shows what a strong woman you are. And, your fight isn't over yet - get on TDM1 and get yourself NED, is what I say! :)