It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Scrap the Temsirolimus and Neratinib! Already!
Three weeks into the game, and enduring the horrible side effects, apparently it is over! CEA started creeping up first week, then by 10 second week, another 10 in third week. At first, my oncologist was willing to put the rise on intestinal inflammation (Immodium/Lomotil are the other "drugs"). But, now with the two big jumps in my ever-accurate marker, CEA, it's over.
She's thinking Doxil. I'd like a kinder, gentler med that will take me down the road. Please, if you can conjure up some thoughts, we'll be making a decision this week. Bear in mind I am HER2+++, high grade, poorly differentiated, somewhat ER/PR positive.

Thanks,
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen, no advice but I just wanted you to know I am praying and rooting for you.

Carol Ann

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen, sorry, I too have no suggestions, but hope you get some good advice. Big hugs xo

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Another person with no advice, just good thoughts sent your way
Keep the faith. You always have

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen. I am so sorry the new treatment did not work. I was hoping so much that your very personalized approach would be rewarded.

Just trying to think. I know you have neuropathy from Taxol.
However, when I read your profile I see that you had Taxol and Herceptin but not TCH at the start. It worked. Then when you started TDM1 you had it with Taxol again and it worked. I am wondering if it is not the Taxol that worked when you had the Taxol/TDM1/Perjeta combo. Is there a combo where you could add a taxane, maybe Abraxane this time. This may be stupid because I am not an onc. and it may just not be possible because of the Taxol damage.

Your onc is thinking about Doxil. I figure in a combo? Is it your genomic sequencing that lead her to think of it?

I hope some brilliant minds will come in with suggestions. You deserve to find the right weapon. Stay strong. Sending hugs. Michka

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen,

Noticed this line in your signature: Genomic sequencing completed for future treatments, if necessary.

I'm certain your doctor will have a good idea what to do next based on the Genomic sequencing result.

Sending you good vibes.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Praying...keep us posted.

:-) Penny

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen

You say you are somewhat ER positive. After all these "anti HER2" treatments, maybe you are a lot more positive. Have you tried anything for ER? Maybe adding in something like that will help - maybe even help alot. Maybe its those cells that were the survivors thru all this.

What about Havolen? Just thinking out loud here. But Doxil or AC is also a good choice but you cannot receive Herceptin concurently with those because together the potential heart issues increases.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Thinking about you. Sending you hugs and prayers for a quick solution that works. Wish I had more to give.
Cathy

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Sorry Karen that this is not working for you. My daughter who is also highly her2 and slightly hormone positive as you are, was looking to this new treatment as a possible next step if she would progress.
Right now the PET shows only activity in the supra-clavicle lymph node. She is doing Abraxine weekly now but continues with the every three weeks Herceptin total body treatment and every week Herceptin IT.
My daughter did not want to go to the Abraxine but it has shrunk the node with the last PET showing no activity except in the node.
Hope you find something that works.

Ev

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Oh Karen I am so sorry to hear this. Much love and prayers coming your way

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen, Also I would recommend getting a biopsy to determine if the status of the cancer has changed. My daughter is thinking of getting a biopsy of her lymph node to ascertain if the hormone status has increased or she might be less her2.
The targeted drugs she thought would work for her - such as perjeta and kadcyla did NOT work for her. So maybe things have changed.
Ev

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

I'm a noob so no real advice here other than you are in my prayers.

I do like the biopsy suggestion from ev if you don't have a recent one. My onc loves to biopsy mets.....Good to know thine enemy approach...

Best to you during this transition in treatment.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Thanks, everyone. I was on Arimidex, Perjeta and Herceptin before the trial.

We have a biopsy from January, pre and post ablation.

There have been changes in the makeup, with some cells strongly HER2 and some not.

Slowly, gathering information, from all of you, and the guidance is appreciated and necessary. BY THE WAY, PLEASE do NOT think the trial will NOT work for YOU (Temsirolimus/Neratinib). I have gotten PMs about this. One of my friends with extensive mets did it for 16 months. It COULD work for you, don't base your decisions on my experience. Go into it believing it IS for you. It has a better response rate than T-DM1 and is similar in that it either works or doesn't.

We have the genomic sequencing and will be discussing further, using that information with the biopsy information.

Thank you for supporting me and sending love and best wishes when I'm trapped in a corner.

Love
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Best wishes Karen. Xxx

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen,

I'm very sorry to hear this! STUPID cancer!!!

I noticed that you haven't tried any of the platinum drugs, as in carboplatin. Some oncologists have replaced Adriamycin with Carboplatin, due to A's known potential cardiac toxicity. They use TCH, or taxotere, Carboplatin and Herceptin.

Here's a metastatic HER2+ trial in Italy that's using Carboplatin:
http://clinicaltrials.gov/ct2/show/N...static&rank=74

Here are some other trials for HER2+ advanced bc. Some of them are not in our area, but since you go to MSKCC, you might be able to enroll in them anyway via various arrangement. Also, some of these trials are phase 1, or dose escalation trials. But that's not necessary bad, since H started that way at some point. Also, those trials also look at efficacy, and your onc would be able to give you input. Also, sometimes an onc may use an FDA-approved, even if it was approved for some other cancer or something else. Hence, survivors taking metformin, etc.

Ruxolitinib, which is already FDA approved for myelofibrosis. The trial is at Columbia U Medical Center. They're not yet recruiting, but the drug is already FDA approved. It's just a matter of whether is will work for advanced, HER2 bc.
http://clinicaltrials.gov/ct2/show/N...astatic&rank=3

PD-0332991. This drug made a big splash at ASCO last year based on a trial for solid tumors. The drug is a CDK 4/6 checkpoint inhibitor. The trial includes Kadcyla. U Penn. They are not recruiting yet, but you could find out when they might be. It could be close.
http://clinicaltrials.gov/ct2/show/N...static&rank=99

City of Hope. Paclitaxel albumin-stabilized nanoparticle formulation.
http://clinicaltrials.gov/ct2/show/N...static&rank=44

Entinostat. Some sort of inhibitor. MD Andersen.
http://clinicaltrials.gov/ct2/show/N...static&rank=77

BYL719 with Kadcyla. A kinase inhibitor. Northwestern.
http://clinicaltrials.gov/ct2/show/N...static&rank=79

LJM716. HER3 antibody that is a AKT inhibitor. Mass General.
http://clinicaltrials.gov/ct2/show/N...tatic&rank=100

ONT-380 with capecitabine and/or trastuzumab. Several U.S. locations.
http://clinicaltrials.gov/ct2/show/N...tatic&rank=100

ONT-380 with Kadcyla.
http://www.clinicaltrials.gov/ct2/sh...+Cancer&rank=1

ganetespib (see modi)
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=128

another ganetespib study
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=193

BIBW 2992 (afatinib). Phase 3. This trial is ongoing, but not recruiting. However, the FDA already approved the drug as Gilotrif for the treatment of NSCLC. It's a TKI that I believe addresses EGFR mutations. The drug is put out by Boehringer Ingelheim. We met with them two years ago at SABCS, but they seemed more interested in having us get out the word then wanting input from HER2+ mets survivors!
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=132

Irinotecan. UCSF. I know somebody who's onc is giving her this drug for mets. She's doing pretty well. She's not HER2+.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=152

212 Pb-TCMC-Trastuzumab Radio Immunotherapy. University of Birmingham and UCSD. Mimicking Kadcyla ... sort of.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=203

Agatolimod and Herceptin. Stimulating the immune system. Ohio State U.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=155

Hang in there. You have options!!

Joan
xoxo

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen,

After reviewing your signature I was thinking along the lines that Michka has suggested. Looks like you have missed out on Carboplatin and the Anthracyclines, both of which can kick Her2's butt. Like Michka, I was noting that Taxol appears to have been a friend to you with the exception of the neuropathy. None of the drugs I have suggested are easy, so I really hate throwing them into the ring, but they do work. Haleven is not an easy one either, but has knocked Her2 on its ass as well.

I am praying you find a combo that is perfect for you. I remain so sorry that you are having to deal with this again.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

I too am hoping and praying for you And your family that your drs. come up with the right combo for you. His peace my friend��

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Sorry to hear your news, Karen. No advice, but love and best wishes from Australia.... Pam

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Praying for you! ! I too had three months of misery with no results...with Perjeta.. Tumor markers continued to decrease so thought it was working. After third treatment, MRI indicated tumor had continued to grow....now 1/3 larger (size of small lemon in node just above pelvic area) identified last October 2013. Three months of real misery...hair loss and all that goes along with it....Then in February and March...changed regime to Kadcyla infusions... Third infusion next week.... Minimal side affects as Kadcyla kills only the cancer cells....leaves the healthy ones alone. Hair growing back...but feel tired most of the time.
Diagnosed 9 years ago..breast cancer Hr2... reocured five years later with cancer in broken shoulder, sternum, rib in back, lower spine and Adrenal Glands (located top of kidneys). . All stable with Tykerb and Xelota oral chemo for following year. Reocurrence finally identified with very accurate tumor markers. No symptoms ...
Has anyone out there been on Kadcyla?
Praying for good results for you and praying for strength to handle whatever the good Lord sends my way........depression is so difficult to overcome.....