Well - here I go again
 

Just returned from visit with my onc for results from my latest PT scan.

Not what I wanted to hear...

I began Tykerb with Avastin in September after progression on Tykerb/Xeloda. This scan indicated the 2 tumors in my abdom. area have since grown and I now have 2 tumors in my clavial area of my neck. I could feel one for the last couple of weeks and thought / hoping it was a swollen lymph node due to my sinus'. But the scan indicated there are actually two about 1.5 cm. They seemed to have popped up overnite.

Anyway - he wants to start me on Herceptin/Avastin/Taxotere.
I have taken so many drugs in the last 12 years that we are now returning to old ones I have used years ago. I took some Taxotere back in 1999.
We were thinking of using Herceptin/Abraxane/Avastin but decided Taxotere might be better since I was on Abraxane only about 4 years ago.
If this combo does not show some improvement he wants to re-biospy to see if any changes in the cancer.

My tumors have always stayed pretty much in one area and we have managed to keep them in one place so this "distant" move makes me very nervous. I hope we are making the right decision on the choices. I keep thinking why not stay on Tykerb with the other two. We were not sure how I would react with only the Tykerb/Avastin without a chemo added and I guess we got the answer. Does not work for me for long.

I really rely on everyone's experiences on this board so am asking for your input. He just returned from San Antonio and says there is lots out there in the works but not for now. He did mention Pertuzumab but I do not think I would qualify for that trial (I will check it out) He is also concerned with the combo's that he starts me on since I have had so much in the years (although I have always done well).

Thank you all so much.

Irene,

I'm sorry that I cannot offer any input on treatment options but I can offer you my prayers. I will pray that the right decision is made and that whatever you choose will be successful for you.

God Bless you Irene,

Mary Jo

Well, Irene, I know that was not the news you wanted to hear. Maybe going back to the beginning with some of the earliest chemos you tried will work again - cancer is pretty stupid, so maybe it will have forgotten it's resistance.

Keep us posted, my dear one.
Chris

Irene...
 

Big sigh, Irene. Sorry for your news. But hopeful your new plan will work. You have been through so much. I know your head is wise and you are doing the very best you can with all you have had to handle. Please stay strong. I can feel your radiance all the way down here in Boca. My prayers are with you always and especially now. You are one of our greatest Warriors! A delight to know. So keep on sparkling, even w/ not so good reports. Sending loving, healing energy up to you, my friend...
Andi

Irene,

Ask your onc about the Herceptin-DM1 trial. We heard a lot of good news about it in San Antonio.

Regards
Joe

Also Dr. Mark Pegram who worked with Dr. Slamon for many years
 

has now moved to Miami. He has always been involved with lots of trials of new her2 treatment combinations as I understand it. Would it be possible/practical for you to consult him?

IRENE, I SAW DRS. MARK PEGRAM (AND DENNIS SLAMON) IN CALIF IN FEB '06. SO HE CONTACTED ME WHEN HE MOVED TO UNIVERSITY OF MIAMI, SYLVESTER COMPREHENSIVE CANCER CENTER.

305) 243 - 4909

If it was me, even living in Tampa -- I'd head for Miami.

I'd also head for Tenn (Univ of Tenn) to my fav onc who used to be here. Mohammad Jahanzeb. I trust him with my life! Brilliant, major human being, beyond caring, devoted and highly well informed!

Think about these possibilities please.

Irene,

I cannot offer you any advice, only the best wishes for a great plan that will knock those pesky mets out!!

all the best
caya

Thank you all so very much
 

First thing tomorrow I will start checking all of these possibilities everyone mentioned.

This site is the best. I love you all so much.

Thanks again..

Oh amiga , something that I dont like to hear from no one especially from you ... I was thinking about this drug Ixempra ...I sure you will act quickly in getting a good combo ....

Irene,
I do not have personal experience with mets...but at S.A. I did speak with my onc. who is having great results with Herceptin, taxotere, and
Avastin...(he particularly feels Avastin is a wonder drug) and has been
having great results, he tells me that his center is a major user of the drug. I also had herceptin /taxotere and it is doable. After attending
S.A. I would stress that you have another opinion and just be double
sure what you decide to do.

I am sorry that your scan came back with that news - please keep us updated....

Hugs,
Jean

Joe
 

I just went into the trial on the Herceptin DM1 you mentioned and it turns out that my onc office is offering the trial.

I believe one of the criteria's on it is that you can't have had more then 3 chemo regimens , and I surely have exceeded that I am not sure but I will check with their office tomorrow. I know that a few months ago they mentioned starting up a new trial but since I had had a stem cell transplant that excluded me and they are having trouble recruiting people.
I did not know the name at the time.

I want to check further on this to be sure. I wonder if Genentech could be of further help.

Thanks Joe and everyone.

Best wishes Irene. Bev

Irene,

Sorry to hear the news. Are you also going to consider the heat shock protien trial or Herceptin-MCC-DM1 trail? Wish you the next combo brings you to NED very soon.

Julie

Irene, I'm sorry to hear about the progression. It's always hard to start looking for a new cocktail, but I've read good things about Avastin in combo with taxanes. I've just started Avastin/Taxol/Carboplatin due to progression on Herceptin/Taxotere. I took a 3 week break from Taxotere before starting the new combo, and things really took off, so for now am also taking a Herceptin holiday while we see how I respond to this triplet.
I do know that Ixempra is the next drug my onc wants to use; might be an option for you also if you need it later.
Hang in there my friend, you will rally and we're all behind you.

<3 Lolly

Hi Irene! Your news may not be good, but with all the advice and information you've already gotten, I'll bet that bad news will turn around and be a victory for you. I'll be praying that you choose the right combination the 1st time around and the smiles begin. This crazy BC makes our thinking foggy, but I think the challenges make us wise! You are wise and kind and so loved. Best wishes for a quick "shrinking" success. ma

Hi Irene,

So sorry about your news but we are warriors, sister. So it's time to battle again. I am starting Navilbene/Herceptin today after failing Tykerb/Xeloda after a good 8 month run. I too was looking at the MCC-DM1 trial and thought I was excluded cause I've had 4 chemos. Can you let me know if you find out they are willing to waive that requirement?

Keep pushing - you're a trailblazer and an inspiration to me. My thoughts and prayers are with you.

Irene
As you know, my neck nodes were knocked out totally with Herceptin, Avastin and Taxol.....I just went off the Avastin due to insurance issues...I am hoping my B/P will come down...seems to be a concerning side effect with patients and oncologists with Avastin.....I am so sorry the Tykerb didn't work long enough...I too am wondering about Ixempra, which we heard alot about in S.A., also pertuzamab.....you are in my prayers Irene...

Oh Irene...
 

Not the news any of us want. I think seeing Dr Pegram can give you renewed hope - it's always good to get a "fresh" set of eyes.

I just started back on Herceptin. With the Tykerb. It's always a waiting game. There seem to be many chemo combos - the trick of course, is hitting the right one.

My onc said there was a lot of biology presented at San Antonio and specifically a lot on Her2. Meanwhile, we all need the magic bullet!

Wishing you strength and courage and HOPE and Faith until you are on your next regime. What is required of us as patients is very very difficult.
xoxoFlori

Irene,

I'm so sorry to hear that you have progression. I can't offer you any advise regarding which chemo cocktail might work but want you to know that you are in my prayers. You have been through so much and I know that you will do your research and between you and your oncologist will come up with a combo that will knock the mets out of the ball park.