News from Adriana 2nd part after combo

[Adriana Mangus]

Hi everyone,

Just a short note to let everyone know I'm still around, that's good news.

The not so good news is that the Herceptin-Perjeta-Taxotere combo didn't work for me.

I have been on Herceptin for over 10 years now, and my concern is that perhaps I have reached the rejection period in which my body can no longer "digest" herceptin. I'm concerned but not out of options.

I have nothing else to say, other than tomorrow Saturday I will have a chest ct-scan to evaluate where to go from here. The CA 2729 jumped from 193 to 304 after two taxotere treatments.

As usual, you members of this great organization are my main resource.

Please any ideas, suggestions, prayers are very much appreciated.

Love,

Adriana

[Pamelamary]

Hi Adriana,
Sorry to hear this and can't really offer advice, but glad to hear from you and will be sending lots of positive vibes your way. Let us know where you go from here. Hope you and your doctors can quickly work out a new treatment plan.
Best wishes.... Pam

[Jackie07]

Adriana,

You'd had some success with Navelbine (trade name of Vinorelbine) early on, perhaps you can try it again with the Metronomic way? The abstract below sounds encouraging.

Int J Breast Cancer. 2014;2014:769790. doi: 10.1155/2014/769790. Epub 2014 Jan 16.
Efficacy and Safety of the All-Oral Schedule of Metronomic Vinorelbine and Capecitabine in Locally Advanced or Metastatic Breast Cancer Patients: The Phase I-II VICTOR-1 Study.
Cazzaniga ME1, Torri V2, Villa F1, Giuntini N1, Riva F1, Zeppellini A1, Cortinovis D1, Bidoli P1.
Author information
Abstract
Background. Vinorelbine (VRB) and capecitabine (CAPE) are demonstrated to be active in pretreated metastatic breast cancer patients. Different studies have demonstrated that the metronomic treatment is active with an acceptable toxicity profile. We designed a Phases I-II study to define the MTD of oral metronomic, VRB, and CAPE. Patients and Methods. Phase I: fixed dose of CAPE was 500 mg thrice a day, continuously. Level I of VRB was 20 mg/tot thrice a week for 3 weeks (1 cycle). Subsequent levels were 30 mg/tot and 40 mg/tot (Level III), respectively, if no Grades 3-4 toxicity were observed in the previous level. Phase II: further 32 patients received the MTD of VRB plus CAPE for a total of 187 cycles to confirm toxicity profile. Results. 12 patients were enrolled in Phase I and 22 in Phase II. Phase I: the MTD of VRB was 40 mg. Phase II: 187 cycles were delivered, observing 5.9% of Grades 3-4 toxicity. 31 patients are evaluable for efficacy, obtaining a clinical benefit rate of 58.1%. Conclusion. MTD of VRB with fixed dose of CAPE was 40 mg thrice a week and was the recommended dose for the ongoing Phase II multicenter study.

[KDR]

Adriana,
Can you find a trial with Neratinib close by? This is another HER2 targeted therapy.
Also, if you have genomic sequencing done (mine was done by Foundation One), they can identify your mutations and tell you where trials are that you might benefit from.

Best of luck, my friend,
Warmly,
Karen

[Adriana Mangus]

Hi Karen,

Hope all is well with you. I have been on navelbine before and worked for me. I have other options at this time, I have to wait for the CT-Scan results. I just had it done last night, March 23.

This is just the beginning for you, Karen. You have so many options to treat lung mets. Just curious did you test positive for the P53?

50% of patients do test positive for this mutation, my oncologist is well aware of it. I don't know why they don't communicate any of this to us. It bugs me!!! Are we too stupid to understand the medical lingo or what??? Argh....

I, too had the genomic studies done by Foundation One, they identified three clinical trials for me;

Genomic alteration detected

GNAS amplification - equivocal FDA approved therapy; trametibin


PIK3CA amplification FDA approved therapy;Everolimus Temsirolimus I heard serious side effects with
everolimus might occur


and.....
TP53

therapy has not been FDA approved but a potential clinical trial is taking place in Cambridge, MA. This is something I would like to enroll in, - providing at the time of enrolling my brian shows NED as the clinic does not accept patients with brain metastases, I understand most clinical trial don't because of poor prognosis. I say heck with the statistics, as long as I'm here I will try everything in my power to continue fighthing this beast- -, kevetrin is the drug that activates p53 and may be effective in treatment of drug resistant cancer with mutant p53. Phase 1 clinical trial is underway. One problem for me is the distance, I live in California. I will definitely talk with my oncologist next week about this.

Take care and please keep us posted.

Love,

Adriana

[KDR]

Hi, Adriana,
So far, I am well. I also had a nice conversation with another person in my clinic who was on this trial and did very well (excuse me if I have said this already). Temsirolimus and Neratinib is what I'm on. Did you, by chance, misread Neratinib for Navelbine? Because I wanted to know is if you looked into "Neratinib." You mentioned at one point that Herceptin and Perjeta weren't working as well as they should.
I don't know about p53, but I believe I am PIC3CA negatory.
Your February brain MRI is clear. I hope you get that TP53 trial if it gets off the ground. So glad to hear you had the sequencing done.
Things are going to be bright, don't worry,
Love
Karen

[michka]

Adriana, I am thinking of you, hoping your scan was not too bad and that you have a new very personalized plan now. I believe that the genomic sequencing approach will be effective for you and for Karen. Love, Michka

[KsGal]

Sending you positive energy and lots of prayers. Jody

[Becky]

I am thinking about you everyday. I have no advice to give but you are in my heart.

[IrvineFriend]

Sorry to hear about this latest progression Adriana. Let me know if you need help with anything, I'm close to you. You're in my thoughts.

-Julie