Well - here I go again

[IRENE FROM TAMPA]

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.

[Mary Jo]

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

[chrisy]

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

[Andrea Barnett Budin]

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

[Joe]

Irene,

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

Regards
Joe

[Lani]

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?

[Andrea Barnett Budin]

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.

[caya]

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

[IRENE FROM TAMPA]

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..

[lilyecuadorian]

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 ....

[Jean]

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

[IRENE FROM TAMPA]

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.

[Bev]

Best wishes Irene. Bev

[Julie2]

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

[Lolly]

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

[Mary Anne in TX]

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

[doh2pa]

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.

[Sheila]

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...

[SoCalGal]

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

[tousled1]

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.

[michka]

Irene,
I am sad about this bad news. After all you went through you have to go back into the battle. Although you are a great warrior, it must be very difficult. I hope you can get several opinions from the Doctors that have been suggested. I send you love and strength. Michka

[Believe51]

Sorry about the progression, all words we cannot stomach to hear. You are a very special lady and I pray that your next move will knock those cells into a fiery death!! Take that you cancer cells; you are messing with our Irene now and you do not know what a fighter she really is!! Continued prayers for those next moves and hoping you find solace on this part of your journey. Just another chapter Irene, time to turn the page on those cells and add a happy ending! Lots of love and continued support.>>Believe51

[PinkGirl]

Hi Irene

I am not qualified to offer any advice on chemo combinations,
but I wish for you all the strength, courage and conviction
you will need to make these upcoming decisions.
I am happy that others have made so many promising
suggestions.

I am sending you good vibes and best wishes from the
far north....good luck.... onward and upward!!!

[Verna]

Irene,
Have you checked with MD Anderson in Orlando? I see a local onc here in Tampa, and follow up every 3 months after scans with an onc at MD Anderson. They seem to work miracles there.
Who do you see here in Tampa if you don't mind me asking.

Verna-

[kareneg]

Hi Irene,

I was thinking of the new drug Ixempra also. As you I have also used a lot of treatments. Just Know I am praying that you find the right treatment and kick butt!

[IRENE FROM TAMPA]

I was so excited to see someone from Tampa also.

I was going to ask you the same thing.

I go to Bay Area Oncology and my doctor is Dr. Chris. George.

He was my orig. onc. and then I transferred to Moffitt. I came back to Dr Onc. last year when they put me on the Tykerb/Xeloda trial.
I did great on that for a year until this Sept.

Thanks let me know where you go.

[StephN]

Irene -
My dear friend we know you are anything but a quitter, so will be watching as you go this next round of battle.

It seems to me that there must be something in your tumor biology that is missed and why you can't get free of mets. Have you ever had the oncotype DX test or other?

Maybe someone like Dr. Pegram would be able to help you in this regard.

I am sending you all best healing wishes for the energy to cope with this new problem.

[Verna]

Irene,

I go to Gulfcoast Onc (St.Josephs), Dr. David Wright. But I also see Nakita Shah at MD Anderson in Orlando every 3 months after scans. They are both great Dr's.,I love them both.

Have you ever heard of the "Pink Dragon Ladies"? We promote health & fitness here
in the Tampa Bay area (downtown behind the University of Tampa), dragon boat racing team, and we are all cancer survivors mostly b/c survivors. We would love for you to join us. If you are interested, let me know.

I do hope and pray you will find the right treatment to put the monster back in check.

Verna-

[Barbara H.]

Hi Irene,
I saw my oncologist who is treating me for this trial. I told him about you and he said that you would not be limited by the treatment you have had to qualify for the trial I am on. I am on a weekly phase 1 trial of this drug that is testing a higher dose. The trial that Lily is on is given every three weeks, is phase two, and has different criteria. It is an offshoot of the the previous stage 1 trial. I would suggest investigating this drug. All of the patients at Dana Farber are doing well on it. My oncologist presented at San Antonio.
I am doing well. My scans look great and my bone scan indicated that the bones are healing. Both of my tumor markers are now normal. CEA is now 1.7.
Best wishes,
Barbara H.

[Lolly]

Barbara, are there other sites doing the Phase I that you're on? Closer to the west coast would be so cool! It's really exciting that you're doing well, CEA normal, bones healing. Wow. I'm hoping to be able to get on it, if not in trial then asap.

<3 Lolly

[chrisy]

Irene,

I've been thinking of you a lot, and how you are again searching for new solutions. Sounds like the Herceptin DM1 might be a possibility, and you certainly have access to the best doctors (including yours who seems endlessly creative and really works hard on your behalf). I heard a discussion in San Antonio on the H-DM1 in which the researcher was saying this agent was great against cancer but in the past it had been TOO TOXIC to use. Now attaching it to the Herceptin (like a guided missile) they could finally use it to benefit patients

I remember your post OVER a year and a half ago which I think was titled "running out of options". Followed by your pioneering with tykerb/xeloda which gave you a longer run than you'd seen in many years.

Here's hoping that you will find an even better weapon this time around.

Much love and many blessings to you, my friend.
Chris

[Vanessa]

I can't give you any better advice than anyone else has, but just know I am thinking of you and praying for you. It sounds like you are in good hands. Keep up the battle!

[dhealey]

Irene, so sorry to hear of your progression. Wishing you a miracle cocktail for christmas. Will keep you in my prayers. Keep the faith and don't give up on hope. The two basics for life. God Bless!

[IRENE FROM TAMPA]

Merry Xmas everyone - as I look out of my window this Christmas morning and everything looks so "peaceful" outside - if only.....

but it is TODAY and that is what counts. Hope everyone's Christmas is a joyous one.

Chrisy - yes, only a year ago I was at the same scary place thinking I had reached the end of my options, but there was Tykerb/Xeloda and I did well on it.

I am sure something else will be there now also. Just keeping the faith.

I checked on the trial for the Heceptin DM-1 as everyone suggested and on the Phase II trial I am excluded of course due to my having had more then 3 chemos. I checked with Dana Farber for the Phase I which did not have this exclusion but their trial is full.

So for now the best I can do is PRAY that they fast track this one for approval quickly. Meantime I will be beginning on Heceptin/Avastin/Taxotere on Friday and hope this carries me for a while.
I will keep checking on other options though.

I thank everyone on this board for their knowledge which has led me to so many new options.

May everyone's day be peaceful and safe as you enjoy this time with your families.

Merry Christmas .....

[runtolive]

IRENE.. here is a list of sites in florida ...

for those interested.. the once a week trial for trastuzumab-dm1 sites in florida..

<TABLE cellSpacing=0 cellPadding=2 border=0><TBODY><TR><TD class=header3 noWrap colSpan=5>United States, Florida</TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Florida Cancer Care </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Davie, Florida, United States, 33328 </TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Joel Espinoza 954-262-7606 crc@flcancercare.com (crc%40flcancercare.com?subject=NCT00509769, TDM4258g, A Study of Trastuzumab-MCC-DM1 Administered Intravenously to Patients With HER2-Positive Metastatic Breast Cancer) </TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Gulfcoast Oncology Associates </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Saint Petersburg, Florida, United States, 33705 </TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Margie Blasek 727-821-0017 smyers@gulfcoastoncology.com (smyers%40gulfcoastoncology.com?subject=NCT0050976 9, TDM4258g, A Study of Trastuzumab-MCC-DM1 Administered Intravenously to Patients With HER2-Positive Metastatic Breast Cancer) </TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Hem/Onc Assoc - Treasure Coast </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Port St Lucie, Florida, United States, 34952 </TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Christine Baker-Gerdes 772-408-5159 cgerdes@hemoncfl.com (cgerdes%40hemoncfl.com?subject=NCT00509769, TDM4258g, A Study of Trastuzumab-MCC-DM1 Administered Intravenously to Patients With HER2-Positive Metastatic Breast Cancer) </TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Bay Area Oncology </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Tampa, Florida, United States, 33607 </TD></TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Julie Hahn 813-875-2300 ext 28 jhahn@bayareaoncology.com (jhahn%40bayareaoncology.com?subject=NCT00509769, TDM4258g, A Study of Trastuzumab-MCC-DM1 Administered Intravenously to Patients With HER2-Positive Metastatic Breast Cancer) </TD></TD></TR></TBODY></TABLE>
runtolive

[runtolive]

irene.. phase 1 clinics.are as follows..
they are doing treatment...every week... with fewer restrictions.. but i expect genentech to have a pivotal phase 3 later this fall..
i have to post in sections.. per her2 ??

[runtolive]

The phase I study for trastuzumab-DM1is located at the following institutions:

dr howard burris at sarah cannon research in nashville tn.. hburris@tnonc.com

dr monica mita at Institute for Drug development san antonio tx. mmita@idd.org (idd.org@idd.org)

dr ian kropp at dana farber in boston mass... ikrop@partners.org
dr shanu modi sloan kettering.. modis@mskcc.org

[Catherine]

Irene,

All the best to you with this new progression. So delighted that there are so many good minds on this site. Glad you have a good mind and a good doctor. I am here as part of the support team.

Hugs from me, Catherine

[jones7676]

I can't offer advice either...I guess I would get another opinion. One thing I do know about Abraxane is that they now follow a new dosing method (3 weeks on, 1 week off) that is 40% more effective (I believe the Northwestern Memorial Hospital in Chicago did the study). I am wondering if they have something similar going with Taxotere or Taxol if they do not want you to do Abraxane again? Whatever your decision/Drs. decision I hope it is right and kicks butt on your recurrence. Good luck.

[runtolive]

http://www.oncology-times.com/pt/pt-core/template-journal/oncotimes/media/Carlson-CFS-Trastuzumab-OT-Jan102008.pdf

link to trastuzumab dm1 article by dr howard burris..
he is running the phase 1 trial for once a week dosing..