Trying not to panic

[Pam P]

I got a call from the onc. nurse today. My last ca2729 is up 400 pts from last month! A pretty good indicator that this current treatment is already not working.

I'd been on xeloda/tykerb/herceptin/aromosin/zometa since April. At first a drop in tumor markers, then last monlth a 90 increase & now this.

I had a pet scan in early July which showed stable so that's good but obviously something not good is going on.

I don't see the onc. until Aug. 19 and am going in for another tm test a week before that. I suspect my onc. will want to switch treatments. I don't have many options left.

Of course I'm interested in t-dm1 and see from the other thread that it's in Cedar Rapids IA. I live in Minneapolis and I guess that would be the closest for me. How do I start the process of seeing if I could get accepte there?

On the t-dm1 thread I read (by Sheila I think) that it only works for 25% of people! That's depressing - I hadn't heard that before.... even though this is supposed to be a great drug those are such low odds.

For over the last year or more I've been on chemos that I'd had success with in the past: xeloda, navelbine, taxol --- none have worked for long and didn't do nearly as well as the 1st time I had them. Abraxane and ixempra I think are the only ones I haven't had.

I hate this so much and feel so deflated today. "Funny" how one can be having a routine day and a phone call like this can send everything spinning. Now the wait until Aug. 19 to learn what's next.

[schoonder]

Pam, I would not just focus on that 25% figure.
Apparently follow up testing has been performed on candidates that partook in the trials and it was learned that those that more closely matched trial's entrance profile indeed had better reponse rates.
http://www.medpagetoday.com/MeetingCoverage/ASCO/20498

[Jackie07]

Pam,

Sorry for the high number on your tumor marker. But I'm glad you came to the Board to share it with us.

Schoonder is right. Don't focus on the figure. You probably heard me talking about it more than 10 times: "Positive thinking leads to the release of endorphin which leads to stronger immune ability and better tumor control..."

Sending good vibes your way...

[Chelee]

Pam, I can relate to how one phone call can instantly turn your life upside down and spinning in the blink of an eye! Argh! I have personally talked to Dr. Slamon about T-DM1 and I really believe this drug is going to be a magic bullet for so many here. I'm not sure where that 25% came from? But if it is correct...someone has to fall in that area...why not you.

Wasn't it Esther that was doing so well on TDM1 until she had elevated liver enzymes and had to drop out of the trial. But my point being...Esther had went thur so many chemo combo's like you...and this turned out to be a magic bullet for her until she ran into the liver issues with the drug. So always hang on to hope. If there is anyway you can get into a TDM1 trial...I would certainly go for it. Have you called Genenetech and double checked to make sure there aren't any other TDM1 trials that may of opened up closer to you? I will be keeping you in my thoughts and prayers for a good trt options that will blow your cancer cells into smithereens ! They lose every time...and they will again! Sending lots of positive energy your way.

Chelee

[Sandra in GA]

Pam,
I am so sorry you are facing this. My hope for you is that you get on the T-DM1 as soon as possible. When I finished my initial treatment, my onc. told me, "Not that you need it, but if you do there is a new treatment (T-DM1) that is being very successful." I believe that 25% number is coming from trials where it has been given to all BC patients, not just the ones who are HER2+. When getting one of my treatments, I met a young lady down at Mayo in Jacksonville who was in the T-DM1 trial down there. She was doing great and said there were no side effects. I don't know how far you will have to travel, but I am sure this will not detur you. Lots of hugs!!!
Sandra

[mmoons]

Pam-

I am so sorry you got that call and news. I think of you so often and marvel at your strength and generous spirit...you are always lifting all of us up.

The most exciting thing about the article Schoonder sent is the quote that T-DM1 "is beginning to stand out as a treatment for women who have been heavily pretreated for metastatic breast cancer."

Sending you hugs and prayers, Pam

Maureen

[Mary Anne in TX]

Pam, I just wanted to check in and tell you that you can do this!
Many prayers and lots of belief in your victory! Luv ya, ma

[ElaineM]

I have my fingers crossed for you Pam !!
Here is a number you can call to see if there is a T DM1 center close to your home.
1-888-662-6728 Genetech Clinical Trials
or
clinicaltrials.gov
TDM4884G
Take good care of yourself and try not to worry too much until you see the oncologist.

[Midwest Alice]

Just wanted you to know you are in my thoughts. Warm hugs. TmD-1 is the new hope and made for you. You have had many treatments that have held you over till.. TMD1 was ready. We all hope and pray that this will prove to be another Herceptin. We need to find out where you need to go to get it.

[Carolyns]

Hi Pam,

I am sorry that you are going through this. It is so scary. I got about 7 months out of TDM1 and then on to Doxil... for 3 months. Now I am on to Ixempra after progression on Doxil. I start Ixempra tomorrow.

When I went on TDM1 the screening was much tougher that early trials.

I wish you luck on your findings.

Love, Hope, Peace, Carolyn

[hutchibk]

Pam, ask your onc what they think about a small measure change... switching your aromasin to tamoxifen (which I had already been on for a year at my initial dx). It has worked great for me since April, when we saw my TMs rising and found a small spot on my adrenal. TMs have dropped and adrenal spot is stable and a little smaller. I am on everything you are, except Xeloda.

Abraxane is also on my "to do" list along with Gemzar and Navalbine... and TDM1.

TDM1 EAP is available in Cedar Rapids, about 4 hrs from you.

[StephN]

Sorry for your unwelcome phone call.
A call like that will send a person scurrying for the next treatment.

Here is some info from the Clinicaltrials.Gov web site:

Please refer to this study by its ClinicalTrials.gov identifier: NCT01120561

Contacts
Contact: Trial Information Support Line888-662-6728



This is the same phone number that Elaine kindly posted, but this also has the identifier number.

Just tell them you want to contact the Cedar Rapids location to get the ball rolling. Their number was not on the site where I looked.

Brenda does have a good suggestion. And I am wondering if the TM is picking up a lot of dead cell material, since the scan was basically stable. That happened to me, but I did not have a number that high.

[Sherryg683]

I am praying for you Pam...sherry

[Pam P]

Thank you to everyone for your kindness and support. It means so much.

Thanks Elaine & Steph for contact info on t-dm1 access. I will start calling this week to see if it's possible to arrange a screening. Then I can take any info I get to my onc. on 8-19.

It sounds like t-dm1 would be my most optimistice choice. But in case I can't do that now for whatever reason, what do you think would be my next best treatment options now?

Brenda you mentioned just switching aromosin to tamox. or something similar - a small shift in meds. My onc. might agree since my July scan was stable. I'll ask about that.

I have not had abraxane, doxil, ixempra. Are there other options I haven't had that I'm not aware of?

If I can find a treatment that can hold me at least until early 2011 ---- then hopefully as I read somewhere on this board - t-dm1 might be available to all.

Carolyn - please let me know how the ixempra goes for you today.

Chelee - that was Irene from Tampa who did so well on t-dm1 until she was eliminated from the trial for liver enzymes issues. Our hearts all broke for her when she was denied to continue that. I know with the liver issues she no longer fit the criteria of the trial so they eliminated her from the study. But I was never clear though - was the liver issue a sign that the t dm1 wasn't working for her at that point anyway or was that something that if it wasn't a clinical trial situation she would have just had to manage and continue.... and might be with us today?

Thank you all for your great wisdom and encouragemnt. Pam

[Lori R]

Pam,
So sorry to hear about the disconcerting TMs.

As we know....waiting is the worst, so I think you should start dialing for data....I encourage you to make contact with the TDM-1 folks in Iowa. Even if you don't use it, understanding who to contact and how you would go about entering the trial would provide you with another option. You know, our fall back lists that we love to keep.

If you decide to give Abraxane a try....I'm a cheerleader for it. I was on it for 18 weekly cycles. It was very tolerable. In my office, there are women that remain on it for extended periods of time.

The positive aspect of TMs is that you have this time to gather options, ponder how YOU want to manage this disease and have some ideas lined up before you speak with your Onc.

Thinking of you so much...Lori

[Barbara H.]

HI Pam,
I do not have any suggestions, but I hope that the T-DM1 trial will work for you at some point. Irene was taken off the trial because of one of her liver tests. If this drug had been approved she could have gone back on it. It had been working for her when she was forced to discontinue it.

I was on this drug for two years and it was still working when I had to go off the trial due to the side effect of lung inflammation. As far as I know, I am the only one who has had that effect. Nevertheless, I could still use it again with caution when it becomes available.

Best wishes,
Barbara

[Sheila]

Pam
I am so sorry you are back in the treatment change stage yet again....I also think you should persue the TDM-1 EAP, but also keep Ixempra or Doxil as an option...maybe even the metronomic chemo to "tide you over"....I will know tomorrow if mine is working as I have scans again...but I am feeling much better, walking alot and think that this might be shrinking or at least controlling things for right now....and it is pill form Cytoxan and Methotroxate combined with IV Herceptin..I am half way through my 3rd cycle with this combo....stay strong, the right treatment is there for you, its just finding it....when I am in "treatment exchange" as I call it, I keep thinking of the wise proverb, you have to kiss alot of frogs before you meet your prince!....kind of the same with the chemo merry go round....they have to shoot you with alot of stuff before the magic bullet is found.
You are in my prayers pam for quick resolve in finding your magic! You so deserve it!

[schoonder]

This T-DM1 extension trial is now conducted at eight sites.

Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01120561



Contacts
Contact: Trial Information Support Line
888-662-6728




Locations
United States, California
Investigational Site
Recruiting
Highland, California, United States, 92346
Investigational Site
Recruiting
Stockton, California, United States, 95204
United States, Colorado
Investigational Site
Recruiting
Denver, Colorado, United States, 80220
United States, Florida
Investigational Site
Recruiting
Davie, Florida, United States, 33328
United States, Iowa
Investigational Site
Recruiting
Cedar Rapids, Iowa, United States, 52403
United States, Michigan
Investigational Site
Recruiting
Detroit, Michigan, United States, 48201
United States, Missouri
Investigational Site
Recruiting
St. Louis, Missouri, United States, 63141
United States, Tennessee
Investigational Site
Recruiting
Nashville, Tennessee, United States, 37203

[Emelie B]

Pam,
I am so sorry you got THAT CALL. I also can't give you any more advice on your treatment options, except to say the other ladies are right on letting you know that there is something that will work for you.
Hopefully, TDM will be available to you and work it's magic.
Thinking of you and sending you positive thoughts,
Emelie

[Patb]

Can not add any advice but my care and support.
The trial has worked for several of my friends for
now and everyone has added new suggestions.
Whatever you and your Dr. decide to do good luck
and prayers for you.
patb