Anything new that targets Her2 neu?

[evlin75]

Daughter has had kadcyla and prior perjeta but her markers are climbing again. Any new ideas? Thanks for any ideas. Her leptomeningeal is stable but clavicle lymph node swollen and shoulder pain.

Ev

['lizbeth]

I've been searching around for unicorns. I have seen new treatments in Phase I & Phase II trials that are for Her2 positive breast cancer. I've seen some that are for brain mets, I would guess that includes leptomeningeal.

You might want to check in either the clinical trial forum or articles of interest.

[evlin75]

Thanks 'Lizbeth, but I am hesitant at her late stage to recommend most clinical trials. So much in them unproven and possibly toxic. She has done several trials. One was a vaccine trial that seemed to be positive - that was early in her disease discovery. The latest was the IT Herceptin trial which gave her too low a dose without gradual increase to an effective dose, so she stepped out of it. She went to a neurologist oncologist who upped the dose with added chemo.
Right now the leptomeningeal seems stable but other body effects of the mets seem to be elevating tumor markers. She gets a PET Monday so we may know more then.
She has been weakened by treatments and the prior year very sick. Hoping not to go down the road again to anything that will make her so sick....but might smack down the problems a bit.
Again -thanks for your kind reply.

Ev

['lizbeth]

I suppose the best option would be a combination of targeted therapies. Has she tried dual Herceptin & Perjeta?

Is she ER positive?

[evlin75]

Hi again,
I do not believe she has much estrogen reaction- not enough to do therapy for it. Highly her2 positive though. She has had perjeta with progression and Herceptin with progression. Then kadcyla being given now and possible progression. Shoulder pain from bone mets and an enlarged lymph node that radiation did not take down - with the markers rising. Her markers have been accurate in forecasting problems.
She has had a couple oral chemotherapy drugs with progression. She has not had a Taxol and may have to go there if we find nothing else available and the PET is not good. But no hair and sick again with that routine.

Thanks!

Ev

[KDR]

Taxol is a tried and true drug. I disliked it much, but had great success with it on the general whole. The side effects were grueling, but it knocked out all tumors permanently except a few on my liver, in which the tumors seem to find sanctuary. Went through ablation surgery and hope that it has also been a permanent solution, or permanent as permanent goes in our lives.

Best of luck,
Karen

[evlin75]

Thanks Karen,
Your story is hopeful. Hopefully we can get something to work that she can handle. She was hospitalized several times last year because of the chemo used for the leptomeningeal problem. (Vomiting and then mobility restrictions/falling)
She is reluctant to do a taxol as her quality of life is just returning a bit, but she is running out of options. She had done Xeloda, Tykerb, and a few other things that did not seem to keep her stable very long.
I appreciate your input.

Ev

[KDR]

Maybe Rolepaul could chime in? I don't have any experience to date with lepto mets. But I know he is ready and willing to help all of us with his incredible knowledge and expertise.
Karen

[sarah]

Hello,
I also did Taxol but I had it once a week instead of every 3 weeks and I believe this is more tolerable. There is a lot of fatigue but I had no nausea.
What about Avastin. This has been re-introduced because it does seem to work for our type of bc.
Have they tried TDM1 - now called Kadcyla. This has been considered a miracle drug for us the way Herceptin was. I believe it's a sort of super Herceptin that works better and is for people for whom Herceptin stopped working.
Maybe start a new thread asking what to suggest when Herceptin stops working.
ps not that this is a cure but it can help: take tumeric aka curcurmin and vitamin D - check them our but seems to have good influences but we're all different.
Also you didn't mention why the herceptin stopped working - was it progression or heart problems?
Don't forget to take care of yourself also.
hugs
sarah

['lizbeth]

Evlin,

I understand that you are reluctant about clinical trials but it is likely to be the best option at this point. All cancer treatment drugs have toxicities, some worse than others. The ones in studies are no more toxic then Taxol, or TDM1 or Adriamycin that are approved and being used currently.

On the other hand - Targeted treatments such as Herceptin and Perjeta can be effective without the harshest of side effects.

Did you daughter take Herceptin and Perjeta at the same time? Targeted therapies are more likely to be effective when combined.

Had the tumors been genetically tested for other pathways? Perhaps targets outside of the Her2 receptor could be effective as well.

If the node at the clavicle could be removed and sent to Rational Therapeutics for functional profiling they could test with cell death end points to see which treatments would be most effective. I'd talk at least contact them and consider it as an option since your daughter has difficulty tolerating chemo treatments.

I'm sorry that you are back in the search for the next option. How did the PET scan go? And what are the doctors advising? Any word yet?

[evlin75]

Rolepaul has helped prior but this may be systemic instead of the leptomeningeal that appears stable. She has tried Avastin and also navelbine. No heart problems from the Herceptin at all. As you will note from my prior post she has had perjeta and kadcyla....but is still having problems. Thanks everyone! I appreciate all input.
PET today. Should have more information soon.
This is her tenth year post diagnoses in 2003 so she has tried a lot of medications.
Ev

[sarah]

Hello Evlin,
Hope the Pet leads to good solution for her.
You must be so worried but there are so many good drugs out there, just need to find the one or combo that works for her.
big hug
sarah

[CoolBreeze]

Has she tried lapatinib yet? (Tykerb). My understanding is it crosses the blood/brain barrier but my knowledge-base on the drug is pretty weak. You might look into it if you haven't already and see if it's appropriate.

Oh wait, I see she has.

Well, maybe that with another HER2 drug might help? I progressed on Herceptin but adding in Perjeta helped. Maybe you can ask your doctor, I'm sorry.

Also, you might check for a phase III trial. No danger there or any untested side effects - it's Stage I and II that you want to worry about. III they usually know. But they often don't test drugs on heavily pre-treated patients - you haven't listed your daughters treatments so it's hard to know.

I'm terribly sorry, I wish you luck. I'd rather it be me than one of my children so my heart goes out to you.

[evlin75]

The PET was good news overall! The activity all seems to be in the right shoulder and the clavicle area where the node is swollen. Now- how to deal with it. The Kadcyla is causing elevated liver enzymes and low platelets. The onc is considering taking her off it. She has had the shoulder and then the lymph node radiated at different times without success in eliminating the problems.
She has not received a probable plan from her regular oncologist team yet. Her neuro-oncologist where she gets the IT treatment gave her the results today. They send the results to both offices.
Maybe do a biopsy of the node to find what will address it? I am greatly relieved that it is localized but it needs attention.
Thanks to those here with ideas.
Ev

[phil]

sounds like your dau has tried a lot. addition of a taxane or herc/ tykerb might be an option. i'm surprised she didnt get taxotere w/ herc/perjeta. taxanes are tough , but so is xeloda, navelbine for some, adria , etc. some docs might give a taxane at a lower dose or give a week off schedule. it may not be needed for too long . my wife went back to adria , so nasty, to bridge the wait for tdm-1. which has been her miracle .
i heard about a promising early stage trial for her2 at farber. using t dm-1 technology to attach several HER antibodies to a dose of doxil. targeted chemo so hopefully fewer s/e. definitely interesting for those who progress on t dm-1 or perjeta. maybe that trial is at other research hospitals .

[phil]

folow up - a taxane may give some that extra killing power that for some, genetic drugs like herc/ perj . don't have . they shut off overexpression of mutant genes , but then chemo may be needed to kill the cells off for good. plus if theres another unknown pathway for progr., the chemo kills .

[evlin75]

Thanks,Phil, She managed without Taxane for a long time. Because of extenuating circumstance got into the later treatments without having to do it. She did do Adriamycin in 2003.
The new trial is for those newly diagnosed but very interesting and I will certainly explore that avenue to see if she might be able to qualify. I appreciate the info.
Ev

[evlin75]

Any information on infrared heat therapy or cryoblation for small stubborn tumor areas in breast cancer? I know it is being used in some other cancers.

[waterdreamer]

Hi Phil,

Please could you post the trial number for the taxol combined with herceptin. I had a lot of success with taxotere, it knocked the cancer out after the second round of chemo. All lung and bone metastasis cleared up.
I think that would be a great combo, in fact I had asked my doctor, why they weren't doing that a while back...

Thanks again for all you do.
Fern

[phil]

herc/perj/taxotere is not a trial now, that was the trial that led to appr. for first -line tx. but makes sense to me to add tax. for a while to herc/perj. adds punch. a doc can do it "off label ', if ins will pay. if someone gets good response they could scale back tax. or d/c it. some pts like Darlene Gant get great response from just herc/ perj . but we dont know yet by tumor analysis which apparent subtype of her2 gets what response. so go more aggressive w/ a tax. if someone progresses on perj w/o a taxane or progr. on t dm-1 , i would look at adding tax. to herc/perj or using herc/tyk., if someone has hx of brain mets. or this farber trial that shuts off several pathways while delivering a doxil dose directly to mutated cells, as t dm-1 does . but tdm-1 only has HER2 pathway blocked. i want a system where stage ivs can try these combos of appr . drugs , like t dm-1 w/ tykerb. or having more flexible entry regs in phase III trials for drugs like the new t dm-1 style drug at farber , w/ Dr. Krop, described above . or this new er+ drug, pd03391 , that has shown great promise at phase II . phase II already involves yrs of safety , and dosing testing. from the Sacrifices in phase I of .... Stage IVs !!

[evlin75]

The oncologists are thinking of combining Pergeta with the Kadcyla but they do not know if insurance will grant approval. They are still concerned about the liver enzymes and labs indicating some toxicity from Kadcyla. Will do more blood work tomorrow.
Anyone able to get insurance approval for the combination of these two drugs?

thanks for any input.

Ev

[phil]

i don't know of anyone on that combo, i heard of a trial w/ it , i think.
elevated liver enzymes are common with t dm-1. my wifes are always high , from 50's up to just over 100. they drop when tx is delayed by a week or two. we, and our doc , don't worry about them . she has had 41 doses , most at 3.0 dose level, which is reduced from original 3.6 dose.

[evlin75]

Update;
An MRI of the shoulder affected and the enlarged lymph node will be done Monday. They want to check to see if the areas of involvement have any nerves wrapped around them. If not they will schedule cryoblation or infrared heat to these select areas. They will also be checking on approval for the combination of Pergeta and Kadcyla.
In the meantime she will continue to get the Herceptin per Ommaya weekly and the Kadcyla per arm port every three weeks.
She is cheered up by the idea that the lymph node could be shrunk. It is very large and uncomfortable.
Ev

[Lani]

http://annonc.oxfordjournals.org/content/24/10/2492.full.pdf+html

[Pamelamary]

Ev,
The Marianne trial has one arm treated with Kadcyla and perjeta (or placebo). I believe this is still going on - I started on this, but it didn't work for me. There might be some preliminary results available.
Best wishes.... Pam

[evlin75]

The MRI disclosed more enlarged nodes in the same location so the physicians are recommending NanoKnife. Anyone have experience with this procedure? The areas are large and therefore not easily treated by heat or cold therapy.
She has a date for the surgery but is wondering about the dangers.

[evlin75]

Update again. The decision for peripheral therapy is Abraxine combined with Herceptin. I believe this will be weekly and through her regular arm port. She continues to receive large dose Herceptin through the ommaya.
The NanoKnife is still on schedule for the 19th.
It was not an easy decision to choose to probably lose her hair, eyebrows and eyelashes right before Christmas and when her son will be visiting.

It may be the answer to the lingering shoulder and scapula pain and nodes enlarged, though.
Best to all here,
Ev