Back From Results From My Pet Scan

[IRENE FROM TAMPA]

NOT GOOD - (as I thought)

It seems like the different combination of chemos I have tried in the last 6 months are not working for me.
The latest Ixempra/Xeloda seems to have also failed and I now have several spots showing in the spine. Several new spots in the right and the left lobes of the liver. The spots in my neck and in the retroperitoneum (in the abdomin are) are still there with some growth.

Like I said - NOT GOOD. And the worse part is that since I have tried just about every chemo out there, it seems like the cancer is no longer responding to them and changing its pattern (which has always been somewhat controlled)

My onc is checking (again) on trying to somehow get me on the Herceptin/DM1 trial of which I was excluded due to the Adria I took back in 1996. This is the one he really wants me on but I have a feeling they are going to deny me. I don't know if they have a compassionate use on this one. He is going to check tomorrow.

If that does not work, he might start me on -
CISPLATEN/IRINOTECAN combo?? He is trying something that I have not been exposed to as yet, although I did take carboplatin a few years back and it did not work either.

Has anyone experienced any of these drugs?

Other then these, we don't know of much more.

I will let you know what happens tomorrow or by end of week. I need to get on something by the end of this week.

Thanks my friends

[Joan M]

Irene,

I'm sorry to hear that your scan could have been better.

I'm praying that you'll be able to get in the trial.

At least it seems that your onc is somebody whose willing to go the extra mile for you.

Joan

[lilyecuadorian]

Hey Irene do you check this ??

http://radonc.urmc.rochester.edu/novalis_brochure/FlavinCenter.html

call maybe is something for you ...or DM1 ....rezare mas por ti mi amiga !!!no dejes de buscar mas options !!!!

[Faith in Him]

I just wanted to let you know I will also be praying that you get into the trial.

Hugs,
Tonya

[eric]

Irene,
I'm sorry about the results. Caryn received Adria and is now in a phase 1 weekly trial of T-DM1. Maybe it'll be an option for you as well. Another consideration may be HSP90 trials. One at Sloan was recommended for Caryn in addition to the T-DM1.
Eric

[Sheila]

Irene
You are in my prayers that you will get into the trial...or a better alternative will be available....you are a strong woman Irene....you have overcome so much already, this is but another hurdle...get your track shoes on, you are a proven runner...we are all beside you cheering you on. Sending you a big hug and much love Irene

[Mary Anne in TX]

Irene, I'm sending prayers, hugs, and belief your way. Rotten news, but they'd just better let you in that trial. If there is some new outrageous stuff available, I hope that you get it as an option. You are one terrific lady...a successful fighter....one of my heroes. I'm cheering for you, ma

[Mary Jo]

Just wanting to send you my love and my prayers Irene. You are one of my hero's at her2support. I love your drive, your no nonsense attitude and your positive outlook on all you've been through.

God's Peace and Strength be yours....

Mary Jo

[Joy]

You are one of my heros and I'm sad that this is a such a frustrating time for you, well that is an understatement isn't it? On this site there was recently posted in either articles or trials something about herceptin and tykerb. I'm not sure if that would be of any help, I'm just trying to think of anything. I am sure we will all be watching ASCO with you in mind and I think trials are a great way to go. I am also hoping that the herceptin dm1 trial will work out. With all of this junk going on, how are you feeling? Sending you much love and best, best wishes for you!

Oh, and how is that gorgeous grandbaby-any new pics?

[Joy]

I went back through the trials forum and saw the one from Eric about radioembolization, would that be a possibility? I know you have extrahepatic mets, but since the liver is involved and rather important, maybe it would be a good option.

[sassy]

Irene,

My prayers are with you as you continue on this journey.

[Joy]

Hey Irene, have you looked at this http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=07-123)
Eric posted in the trials and I know it has some "buzz" around it.

[Bill]

Irene, you are so wonderful! I hope you get into the trial. We'll be praying for you. Wish I could help more. Peace and Love to you, Bill

[Lani]

are any of your mets amenable to biopsy? A recent lecture I attended by Stefanie Jeffrey of Stanford reported the results of a study (to be published in June) of Circulating tumor cells in patients with metastatic breast cancer and their genetic make-up. CTCs were found to be very heterogeneous and in two cases studied of patients with metastatic her2+ bc patients ON HERCEPTIN, there were triple negative CTCS among their CTCs. Their preliminary recommendation was to perhaps treat these patients with dasatinib in order to keep those CTCs or the sites of micrometastasis from which they came/went from fluorishing as triple negative metastases.

If your disease now has a different genetic makeup than your primary disease did, perhaps different targetted and chemotherapies might be used.

I have been reviewing hundreds of abstracts from the upcoming asco meeting and these include mentions of various ongoing trials AND THERE ARE MANY .

To find the abstracts, go to www.asco.org and click on the area for online abstracts just posted.

I hope some of this is helpful! I am sure all of our best wishes and prayers are with you.

[IRENE FROM TAMPA]

for your prayers and wonderful information.

I get so comforted hearing from my sisters and brothers....

I am taking in everything like a sponge and checking it out.

JOY - I do have two nodes in my neck that can easily be
biopsied or even removed.

Lilly and Lani - I am checking on those sites you gave me. Believe me, I will not leave any stones unturned if I can help it.

I asked my onc yesterday about removing those and he said we could but since my tumors have now spread to so many places he does not see a reason, but for my piece of mind.
also asked him about abalatiing the tumors in my liver or some type of procedure without major surgery. He also said to this that there are seeds (?) that they could inject directly to the liver.... but again

I know they do not like to do these types of procedures but I would still continue on chemo for the rest. I also asked about radiating the area in the neck and the spine. I guess if I could somehow reduce the number, in my mind I would feel more comfortable which I believe is so important. I need to retrieve my "Power" over this again - and I will.....

Believe it or not, I have such a hard time breaking the news to my family and friends. I hate to see them get so upset. Once I have talked about it to them, then I start feeling better. I have not even told my daughters yet which I dread.

And for this I thank you all for being here for me.....

I am contemplating taking a leave of absense so I can give some time to researching my options again...my company is wonderful to me (like a family) so I am sure I can work something out with them.

Well, I will let everyone know what they find out about the DM1 trial - yea or nay and if the Cisplatin/Irinotecan is approved by my insurance in case.

Take care my friends.







Am I crazy for even thinking this way or does anyone agree. Of course, only if the procedures are not so invasive as to cause immune suppression.

[Julie2]

Irene,

You are in my thoughts. I am sure you will find a way to come over this hurdle. Be strong.

Julie

[chrisy]

Irene,
I think your doctor is talking about the radioactive spheres which are injected directly into the liver. There have been some recent studies showing good results in liver mets....which as Joy mentioned is important and may buy some time to find other options.
You're right, you do need to find a systemic approach that will work, but with the spine and liver, the whack-a-mole approach is also valid right now in terms of urgency and QOL. And that is, as you say, very important.

Have you considered sending a tissue sample to be assayed, where they test multiple chemo agents to find what may work best? You haven't ACTUALLY tried every chemo, even tho it seems like it I'm sure...

I know how hard it is to break bad news to your loved ones. You've mentioned before how this is the hardest part. Neither of you able to bear the thought of your loved one being in pain. Yet, the "not knowing" is hard, too. Thinking of you having to do this yet again is making me cry right now as I send loving prayers to wrap themselves around you all.

I almost missed your last comment...Crazy? I think not, unless being greedy for more of a life you love is crazy.

Sending much much love,
Chris

[Mary Anne in TX]

I think that it is a brilliant idea to put every single option on the table. You can always pitch them out during decision time. Who knows???? It might be one of those "way out" ideas that proves to turn the tide for you.
You are powerful, smart, and up to the task. Take time and let your brain run wild with ideas. I'm praying for a brain storm of ideas to flow! Luv, ma

[Lani]

Time and time again at meetings I hear the researchers and oncologists say "we wish we had a biopsy of the metastasis to clarify what is going on"

Here is why:


Molecular changes in the primary breast cancer versus the relapsed/metastatic lesion from a large population-based database and tissue microarray series.
Sub-category:
Metastatic Breast Cancer
Category:
Breast Cancer--Metastatic Breast Cancer
Meeting:
2008 ASCO Annual Meeting



Abstract No:
1000
Citation:
J Clin Oncol 26: 2008 (May 20 suppl; abstr 1000)
Author(s):
R. MacFarlane, C. Speers, H. Masoudi, S. Chia
Abstract:
Background: Relapsed/metastatic breast cancers are presumed to have the same predictive factors as the initial primary tumour. As such, the majority of patients do not have additional biopsies performed at the time of relapse. Recent small studies have suggested that a significant proportion of relapsed lesions may have a change in the hormone receptor and/or HER2 receptor status from the original tumour. We sought to compare the hormonal and HER2 receptor status of relapsed/metastatic breast cancer tumours with those of the original tumour from a large population-based database and tissue microarray (TMA) cohort. Methods: Using the BCCA Breast Cancer Outcomes Unit Database from 1986-1992, patients with biopsy proven relapses were identified. These identified patients were linked to a current large TMA series (n=4,444) of primary breast cancers. Charts were reviewed, and available tissue blocks of the relapsed/metastatic cancer were requested and collected. An additional TMA was created of the relapsed/metastatic tumours. IHC was performed for ER (LabVision SP 1 antibody), PR (Ventana 1E2 antibody) and HER2 (LabVision SP 3 antibody) on both the primary and relapsed tumours. The pathologist was blinded to knowledge of the primary tumour receptor status. Results: 281 cases were linked between the BCOU database and the TMA series. Of the 281 cases, 184 tissue blocks were received, and 160 had adequate tumour for analyses. Of the 160 blocks, 115 (72%) had no changes in either the ER/ PR or HER2 status. Of the 45 (28%) tumours that did have changes in the receptor status, 11 (7%) were local recurrence, 34 (21%) were regional or distant relapses. Among the 34 regional/distant relapses 11 went from ER/PR(+) to ER/PR(-), 14 went from ER/PR(-) to ER/PR(+), 3 went from HER2(-) to HER2(+), and 6 went from HER2(+) to HER2(-). Conclusions: This is one of the largest known studies assessing for changes in molecular phenotype between the primary and relapsed breast cancer. A significant proportion (21%) of relapsed tumours had changes in either ER/PR or HER2 receptor status. This study suggests that biopsies of relapsed/metastatic breast cancers should be performed routinely.

[Leslie's sister]

Just wanted to post my sentiment regarding your recent news. You are in my thoughts and prayers. I know that you will keep fighting, researching etc.

Lani is so awesome. One of the things I appreciate the most about her is how she jumps in with all her vast knowledge in this field, always suggesting things to look into.

You sound like you are ready to fight. Put on those pink boxing gloves, we are on your side!

Lisa

[Catherine]

Irene,

This is all way over my head. But I am glad that you and the rest of the crew, know all the right things to research. I, too, have always enjoyed your posts. When I look at your list of treatments, it is a wow. So keep up the good work and bring on the power.

Praying that you get into the trial.
Catherine

[Barbara H.]

HI Irene,
You are certainly in my thoughts. You are a fighter and I am sure you will find a way. Nevertheless, I hope, hope, hope, that you can find a way to be accepted into the Herceptin MCC-DM1 trial. It seems to be very effective for most patients, easy for most to tolerate, and it might work for you.
I would certainly fight for it.
Best wishes,
Barbara H.

[Gerri]

Irene,

I can only echo what everyone else has said - you are an inspiration to so many. You have such a fighting spirit, I know it will continue to carry you through the rough times. I truly hope you can be enrolled in a trial and you will find the magic combo.

Stay strong and keep on fighting.

[dhealey]

Irene,
Just wanted you to know you are in my prayers. Reading your Bio, you have been at this a long time and a great inspriation to us all to keep pressing forward. Peace be with you and may they find answers for you soon.

[Patb]

Irene in Tampa

You are in my thoughts and prayers and I hope you
get in the trial and get the drugs you need.
patb

[Believe51]

Good Morning My Hero!! I was a bit sad to read of these issues you have encountered on this already rough journey. I have known you for quite some time now and have seen the fighter you are. Although you have been through so much already I know you will fight back with all your might. Irene, you have been such a large part of Mighty Oak's journey. You have given us hope when we did not see any, you have pushed us forward when we thought we could not move anymore, you have helped us delve into new possibilities when we thought there was no other options. Sweetheart, you have recued us from the dark and showed us the light. You are such an inspiration to us all.

I will hold you close to heart as you enter this new path on this journey. I shall be praying that you shall get back all that you give to us. I hope you are rescued from the dark you may feel you are in. I pray for you anyhow, just need to adjust my wishes for you!!

Oh, Mighty Oak just put in two cents, he loves you and so do I. Hang in there our Sweet. You are a warrior, a hero, an inspiration....You are our Dear Irene!! Keep that positive attitude girl....show that cancer just how unwelcomed it is!>>Believe51

[Jean]

Dear Irene,
NO you are not crazy....you are a strong wise women who knows how to place your options on the table and
fight back.

My heart breaks for you that you have to tell your family this news, but hopefully this week you will hear positive news to tag onto about your new treatment plan.

There are many new drugs to be considered/and/trials.
Please know you and your loved ones are in my prayers.

Sending you a huge healing hug,
Jean

[Vi Schorpp]

Our hearts are heavy with your latest burden...you are much loved and much respected on this board. I can only reiterate what everyone else has said and that is that our collective thoughts, prayers, and strength go out to you.

[hutchibk]

HI Irene - take Lani's post to your doc - it should create a compelling conversation. I learned from some MDAnderson docs last November that they are starting to see that certain treatments in 'heavily pre-treated' patients might be actually changing the biology of the cancer, and I assume that that could maybe mean that it becomes sensitive to treatments that didn't seem to work before. Also, what about the Tykerb/Herceptin combination? Has you doc considered that one? Also, you and he should investigate whatever Dr. Kent Osborne is working on at the Baylor College of Medicine Breast Center in Houston. He is doing really interesting Her2 research and trials that he presented at SABCS in December. Have your doc put a call into him...

[SoCalGal]

Irene-
I feel the same way - I HATE to tell my kids and family & friends bad news. For me once I have a plan it's easier to tell them what's going on. My disease is not yet under control and most days I just try to block what that really means from my life.

I don't have any chemo info to add - just wanted to say you are in my prayers. xxoo Flori

[tricia keegan]

Irene

I'm sorry I can't help or advise you either but please know I'll be keeping you in my thoughts and praying you get into the trial.
Seems like you're due some good news soon on this!

[Ceesun]

Irene, As all of the others have said, you are the best among us and I am pulling for you, too. Want to meet you! Love, Ceesun

[Paty]

Irene,

All my love to you, I will be praying that a prompt suitable treatment is found for you. Dios te bendiga.

Paty

[caya]

Irene,

Just wanted to let you know I am thinking of you, and praying the docs will find the magic chemo for you soon.

all the best
caya

[IRENE FROM TAMPA]

Lani

I had a recheck of my cancer when I had my liver surgery back in 2005 which I requested to be sure nothing had changed in my HER2 status, and it was the same at that time. I will speak to my onc again and see what he thinks about rechecking again at this time.

I know they can get to my neck nodes pretty easily and we spoke about it earlier until my latest scan.

I am certainly heeding everyone's advise and checking everything out.

Has anyone heard / experienced this trio -

HERCEPTIN/ IRESSA/ PERTUZUMAB

I have not tried the Iressa or the Pertuzumab as yet. Maybe another option...

They still have not heard back about the DM1 trial and my insurance approve Cisplatin but is reviewing the Irinotecan which is another option. I am just not sure of this combo (what do I know huh) just a gut feeling.

I will keep on doing more homework and see what we decide on... I am getting fidgidy(?) since we have a long week-end and I have not been on any chemo for three weeks now.

Wishing everyone a wonder holiday weekend.

[lilyecuadorian]

HERCEPTIN/ IRESSA/ PERTUZUMAB


this is the trial that Lani what post it many times ....with the mice's
I will love to try this combo ....

[chrisy]

Yep, Irene, Iressa/Herceptin/Pertuzumab is the trial with the mice where the cancer went away and never came back...which Dr. Kent Osborne spoke of in San Antonio saying trials would be starting this year.
You should get your pathology checked again for ER/PR as well, as the rest of the "blockade" is to block ER.

I've been waiting for trials on this one for about 3 years now, it looks like they are finally getting close.

Also, the T-DM1 does have an exclusion for adriamycin above a certain amount, but you may not have had "excessive" adria and may still qualify.

Keep pushin, girl!

[hutchibk]

Irene - like Chrisy said, that is the combo that Dr. Kent Osborne and his colleagues have been working on. Here's his info:
http://www.breastcancercenter.net/faculty/osborne.htm

Here's the link to their clinical trials, and they have one for Herceptin/Tykerb too, it looks like...
http://www.breastcancercenter.net/clinic/trials/index.htm

[kareneg]

Dear Irene,
You are always in my prayers, all my love my sister!

[unregistererd]

Thinking of you Irene. Hoping you can find something to work. Bev