Back From Results From My Pet Scan

IRENE FROM TAMPA · 05-20-2008, 03:31 PM

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 · 05-20-2008, 04:30 PM

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 · 05-20-2008, 04:33 PM

Hey Irene do you check this ??

http://radonc.urmc.rochester.edu/nov...vinCenter.html

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

Faith in Him · 05-20-2008, 04:35 PM

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

Hugs,
Tonya

eric · 05-20-2008, 04:45 PM

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 · 05-20-2008, 05:43 PM

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 · 05-20-2008, 06:50 PM

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 · 05-20-2008, 06:55 PM

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 · 05-20-2008, 09:11 PM

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?

sassy · 05-20-2008, 09:22 PM

Irene,

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

Joy · 05-20-2008, 09:35 PM

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.

Joy · 05-20-2008, 09:15 PM

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.

Bill · 05-20-2008, 10:18 PM

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 · 05-20-2008, 11:38 PM

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 · 05-21-2008, 04:59 AM

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 · 05-21-2008, 08:04 AM

Irene,

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

Julie

chrisy · 05-21-2008, 10:34 AM

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 · 05-21-2008, 11:16 AM

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 · 05-21-2008, 01:00 PM

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 · 05-21-2008, 01:10 PM

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