TDM1 is bust for me
 

Oh well I did suspect it wasn't doing much for me. Scans today seem to show progression. I haven't seen the report, I saw the films and suspected progression so rang my oncologist who spoke to the radiologist who confirmed it looks like progression - new spots and about 25% increase in size of existing spots. No new sites and apparently lymph nodes are stable which is surprising.

So... not even 4 months of stability on the "wonder drug". What next? Talking Pertuzamab, herceptin and Abraxane combo though I am wondering about DeenaH's combo of Avastin, Herceptin, Tykerb and Abraxane? I'm still asymptomatic and able to swim for an hour. I get tired but hell - I've had chemo for nearly 2 years continuously now so I guess that's a given.

Feeling bummed the "best" didn't work for me. Onto the next thing - maybe something will work.

Re: TDM1 is bust for me
 

Just a thought but would Mamacze's experience help you and your onc's identify a new treatment. She posted:


I am writing to share news about what I think is extraordinary pathology testing. I had a small tumor pop up in my lungs when I went on a short Herceptin holiday. My oncologist had it biopsied a couple of weeks ago and sent the tissue samples to Precipio Diagnostics at Yale in New Haven CT.
The report was amazing. They did a complete tumor profile; identified the exact gene mutation I am experiencing in that tumor (PIK3CA G1049S); then identified a promising med that will target that particular type of mutation. They also listed relevant available clinical trials with a link on clinical trials.gov. This is MUCH more info than from a standard lab and of course gives me the HOPE that comes from recommended trials and treatments.

Their web site (if you want to check it out) http://www.precipiodx.com/physicians...profiling.html

Also, when I called them to ask how I can get a bx sample to them; they sent me the FedEx package to mail the Biopsy results in. They consulted with my doc; all in all a great experience!!

I am happy to send a copy of my report if you are interested in seeing how it looks if you PM me.

All the very best,

Cathy

Re: TDM1 is bust for me
 

Very sorry you didn't get the kick out of t dm-1 that others have. both combos you mention are promising. did deena h have lung issues ? one of our friends had to stop t dm-1 months ago, has been doing well on herc/navelbine. God Bless, Good Luck .

Re: TDM1 is bust for me
 

Has there been any discussion about a beta blocker? Have you had your hormones and cortisol levels tested by saliva testing?

There have been abstracts and articles posted on this site about beta blockers possibly slowing down metastasis (?). At least two of them; News posted in, I believe, March 2010 and Lani on July 20, 2012. It seems that the beta blockers work on the adrenaline receptors and possibly slow down metastasis.

I have been using Metoprolol since Nov of 2009. I finished my first treatments by Nov 2010. When my sternal metastasis was found in October of last year it was 3 cm but undected anywhere else and I had been unprotected for nearly a year against the Her2 and ER. I have been on Herceptin and Clasteon (an oral bisposphonate) since then and I have just added Letrozole; the whole time, though, I have continued on the beta blocker. I have just had CT/Bone scan, head MRI, mammo and it is still undectable anywhere else. I have a doctor who is certain I had adrenal exhaustion before I was first diagnosed.

I don't know, just a thought.

Re: TDM1 is bust for me
 

What about Avastin (bevacizumab), I know the FDA nixed it for BC but some people on this site and in the news had very good results with it.
Also look at this, it hasn't started human trials yet but might be worth following:
http://www.dailymail.co.uk/health/ar...Herceptin.html
The tumor testing sounded very positive that Kim (mamacze) did.
Are you getting a second opinion?
hugs and love
sarah

Re: TDM1 is bust for me
 

I'm sorry to hear tdm1 did not work for you. It wiped out my liver mets and then kept me stable for 10 months. Progression was called when I developed lung mets. Because my insurance would not cover oral treatments- ie Tykerb or Xeloda, my Onc went with Halaven/Herceptin I had an excellent response to it and have now been stable on Herceptin and Tamoxifen. It seems there are some good treatment options out there and I pray the next one can knock back those mets!

Re: TDM1 is bust for me
 

I need to amend my post; I was "protected" against the ER after my treatments for early stage because I was taking Tamoxifen, but I think I wasn't metabolizing it or it fueled the Her2 back up or a combination of the two.

The suggestions of getting the tumor tested sound good and getting a second opinion. What about a phone consultation with Dr. Slamon?

You have been doing alot of good things lifestylewise. Do you use any lotions or sunscreen that have chemicals? A great website is the environmental working group at www.ewg.org. Input your cosmetics or creams and they have assessed the ingredients. So many things that we're exposed to could be hormone disrupting; car exhaust, costmetics, and sometimes we need to be as careful about what we put on our bodies as what we put in. I used to use Lubriderm everyday, not anymore.

Maybe something else is the driver. How is your bloodwork? Is anything out of sorts that shows such as diabetes? Metformin is also used in clinical trials for breast cancer. Maybe there's some truth to the thought that cancer and diabetes have the same metabolic pathway; my mother was an insulin-dependent diabetic. Do you have diabetes in your family or did you have gestationel diabetes when you had your children? Do you have your glucose tested?

Amanda, I am sorry about this news. I have hope that you will find something very soon to help you.

Re: TDM1 is bust for me
 

Oh geez Amanda, I hoped ths one would work for you. I hope you get some good suggestions here, as to what to try. Best wishes
Dawn

Re: TDM1 is bust for me
 

Thanks for the thoughts and options.
I have had preliminary assays done which were not especially helpful. I live in Australia so there can be some issues with tissue getting to the US safely and intact - live tissue if required may be difficult. I am investigating my options.
My intuition has always told me that I need a multiple pathway blockade - but how is this sustained long term?

My Onc said I have lots of options yet though to get such a poor result from the supposed best drug available is just a kick in the guts.

We are also considering the german clinics but I can't imagine being away on the other side of the world from my babies however I was born in the Black Forrest and there is something strangely attractive about a "rebirth" there.

I am here drinking my anti cancer smoothie - I will not give up on my path to becoming and staying well. Maybe Sheila will help to guide me.

Re: TDM1 is bust for me
 

Amanda, You are simply amazing. Your positive attitude makes me feel strong. Its almost as if your saying to each treatment "your not stong enough move on next" Your determination inspires me so. I feel like you will get the right treatment and you will kick some serious cancer fanny. Gods blessings to you and your family. Please know that you are in my prayers.

Peace, your friend,

Nancy

Re: TDM1 is bust for me
 

Oh bugger, Amanda..... sorry to hear that TDM-1 wasn't for you. From what I read in your posts, it seems you have a team who is batting for you all the way. And of course, you are an intelligent woman with a very strong will, which is really important in all of this.
Thinking of you....
Best, Marie

Re: TDM1 is bust for me
 

Amanda,
I am sooo sorry that T-DM1 was not the "bullet" for you. I am totally disheartened by this news, but like you, am looking up at other options for you. I know you and your medical team will come together and find the right regimen for you.
Yours,
Karen

Re: TDM1 is bust for me
 

Hi there. I am getting my tumor tested at Precipio. I spoke to Ilan, their CEO and he is simply wonderful. I posted his response to some questions I had on Mamacze's original Tumor Profiling post. I believe the testing is covered by insurance since it's considered genetic testing.

Re: TDM1 is bust for me
 

*&&%(*)O!!
That just s%$ks! I'm so sorry!
I hope your next combo is the best one yet. You deserve a break!

Praying for you (and your babies)...keeping all my fingers and toes crossed. Looking forward to hearing your new plan soon.
Sending love and a giant hug,
Denise

Re: TDM1 is bust for me
 

I will be getting profiling done - waiting to get info from oncologist on the company that has people here in Australia to facilitate the testing.

For now we are trying to get Pertuzamab access and Herceptin and Abraxane - weekly dosing.

We feel there is still hope to control things and get to stability again with a dual/multi blockade approach. She was skeptical about adding avastin but we will see the results of the testing before making a decision there.

I feel good - sad I'll lose my hair again as it looks awesome at the moment.

And so I keep trying... :-)

Re: TDM1 is bust for me
 

Amanda
I love your tenacity I really hope the profiling throws up something amazing to fight with - good luck,
Jenny

Re: TDM1 is bust for me
 

Well Amanda, that is a disappointment to be sure. Sounds like you are to on the trail of other good options tho - DO NOT give up.

Re: TDM1 is bust for me
 

I forgot to add...cancer sucks.

Re: TDM1 is bust for me
 

Oh Amanda, I'm so sorry to hear that TDM1 didn't work for you - not for me either. At least there are lots of options, and I know you are capable of working with your medical team to find the magic bullet. Glad to hear you are asymptomatic; we need to grab quality of life with both hands! Pity about the hair, but you'll look great anyway, and it is summer.
Best wishes.... Pam

Re: TDM1 is bust for me
 

Praying for you, Amanda, for all of us. There's been too much bad news the past few days. Better days are just around the corner. I just know it.

- Penny