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-   -   Perjeta failed, changing horses again (https://her2support.org/vbulletin/showthread.php?t=56595)

chrisy 11-20-2012 01:31 PM

Perjeta failed, changing horses again
 
Well, poop,

After all that drama about getting the Perjeta (which is still to unfold as I have not gotten anything from my insurance yet!), it didn't work that well, even after adding the taxotere/herceptin. My scan after 2 cycles including Taxotere shows that although the larger lesions in my liver are unchanged, which is good, there are several smaller new baddies showing up.

Also, which has me very concerned, for the first time they are seeing some (small amount) of ascites in the abdomen and also some "thickening of the pleura" in my rt lung, which may be inflammation and not cancer related (or not). Having liver-only disease while not good, is much better than spread to other places. But we do not know for sure what is going on there yet. Hopefully nothing.

So my new horse is named Navelbine (all horses have the middle name Herceptin). I know that has good activity against liver and lung, at least at earlier intervention. Hopefully it will deliver a good punch for me now that the taxanes seem to have pooped out.
Dr. Rugo's first suggestion was Gemzar/Carbo (and Herceptin) but I asked about Navelbine which she has mentioned before. She said it wouldn't hurt to try for a cycle and see.

Naturally I am supremely bummed, and feel as so many others have, that I am just crossing treatments off the list too fast. I'm not yet out of options but I really need to have something work and regain control over this stupid cancer. I still have a lot to do in this lifetime.

The good news, I guess, is that there are presumably not so many different side effects (and related drugs to control them!) so maybe I can avoid future kittyhead moments of messing up on all the peripheral drugs. All I have to do is remember to show up every week instead of 3, except for week 3 is off so its 2 weeks on one week off....piece of cake, eh?

But they're all on my iphone calendar:)

Any encouraging words appreciated!

karen z 11-20-2012 03:42 PM

Re: Perjeta failed, changing horses again
 
I think it is good that you can make a switch quickly and try this new regime. I am not sure of all of the differences between the two treatments you mention. Why did your doctor want to try Gemzar/Carbo (and Herceptin) first and why did you want to try Navelbine (with Herceptin) first? What are advantages and disadvantages for each plan. I think it is very good that can get started quickly and find out what is going on in the first place - sounds like there is not consensus on what some of this stuff actually is. Hang in there Chrisy. You can switch gears if you have to and it might be the very best thing for you right now. I know how strong you are so fight the good fight. Stay in touch and let us know as you know what some of these issues are. You can do this. I have seen you in action.
K

Paty 11-20-2012 04:12 PM

Re: Perjeta failed, changing horses again
 
Chrisy, I am sorry to hear about the Perjeta, it is a hope for many, but seems that it is not working as the trials have shown. I am sure there ar still options out there to try. Sending you hugs and love. Keep up that great attitude you always have. Love, love, love.

Paty

KDR 11-20-2012 06:40 PM

Re: Perjeta failed, changing horses again
 
Chrisy,
Navelbine is really good and I hope it'll be good for you. I've noticed that many of the signatures of those NED have used it. I have no doubt that you and your medical team will figure this all out, and you'll be back to yourself soon.
Love
Karen

caya 11-20-2012 07:06 PM

Re: Perjeta failed, changing horses again
 
Chrisy,

I am praying that the Navelbine is the magic bullet for you... and I know your onc. Dr. Rugo is top notch, and she will have lots of great ideas to get rid of those mets.

Sending you lots of love and hugs...
all the best

caya

chrisy 11-20-2012 09:36 PM

Re: Perjeta failed, changing horses again
 
Karen Z: over the past months with so many failures and treatment delays dur to my surgery issues, a lot of chemos have been tossed in the ring as far as ideas for "what next". The Perjeta/taxotere/H option was sort of a no brainer if I could get it. All other options for me generated the "why this vs. that?" question. So when she suggested carbo/Gemzar I tossed in what about navelbine. I've noticed this has had good activity in liver and lung mets (although true, as a much earlier treatment). Rugo felt in her experience it works better earlier in the game but also said they use it a lot at one of the east coast centers (I think Dana Farber). So maybe some personal or regional preference. We discussed (well, i asked and she explained) that both taxanes and vinca alkaloids (incl navelbine) hit cell division at the same point and are micro tubular disrupters, but they use different pathways and do not have cross resistance.

We didn't get in as deep with carbo/Gemzar other than I think they work differently from the taxanes, I had carbo (TCH) as part of my initial chemo with great response,and the dumb cancer hasn't seen Gemzar yet.

The interesting thing was I tried to toss it back to her in terms of which she thought was the better choice, and she did not really push back to the carbo/Gemzar option. In a way it was discouraging that at this point there are no clear and obvious choices, no "TDM1, absolutely!" game changers. On The other hand, navelbine is an "easier" treatment and I'm still pretty beat up by 5 cycles with a taxol followed by a one month break due to the surgeries then 2 taxotere cycles. And if navelbine works earlier rather than later, maybe not put it behind yet another chemo.

Her last words were "one step at a time". Which as usual, is wise advice.

chrisy 11-20-2012 09:40 PM

Re: Perjeta failed, changing horses again
 
Paty - I'm disappointed of course, but I don't want my experience to discourage others. Remember the phase III trial results tht led to approval were as a first line metastatic treatment, so those results reflect the relity that the earlier treatments always pack a bigger wallop!

Jackie07 11-20-2012 11:00 PM

Re: Perjeta failed, changing horses again
 
Chrisy,

The following abstract shows the new combination you are trying is a good one:

Gan To Kagaku Ryoho. 2012 Mar;39(3):445-9.
[Remarkable improvement in a patient with metastatic and locally advanced HER2-positive breast cancer treated with trastuzumab plus vinorelbine].

[Article in Japanese]
Kanazawa S, Ogata H, Magoshi S, Saito F, Ito T, Kubota Y, Kaneko H.
Source

Dept. of Breast and Endocrine Surgery, Toho University Medical Center, Japan.

Abstract

A 39-year-old premenopausal nulliparous woman presented with severe pain in her right breast, bleeding and pus-like discharge, and a deep ulcer approximately 18 cm in diameter.Contralateral breast metastasis, bilateral axillary lymph node metastases, and multiple lung and bone metastases were detected on computed tomography.Five years previously she had undergone surgery for ovarian cancer and had prematurely discontinued adjuvant chemotherapy because of side effects. Following the administration of pain control, the patient received trastuzumab(Tr)plus vinorelbine(VNR)for her breast cancer as first-line therapy to avoid hair loss.The ulcer on her right chest wall underwent complete epithelialization and the patient's performance status improved from 3 to 0.The pus-like discharge, pain, bleeding, and odor from the breast resolved completely, and 5 months later, her quality of life had improved.The lung metastases also resolved completely.No adverse affects, including hematotoxicity and hair loss, were seen until treatment failure 12.5 months later. Second-line and third-line treatments were performed, but brain metastases developed, and the patient's overall condition deteriorated because of the development of ileus of unknown etiology... The patient received all therapies on an outpatient basis. Combination therapy using Tr and VNR is superior in safety and tolerability, and has been considered an option for first-line treatment of metastatic, locally advanced HER2-positive breast cancer.

StephN 11-20-2012 11:10 PM

Re: Perjeta failed, changing horses again
 
Dear Chris -
Well, POOP on a POOPSTICK!

I am so sorry (along with you) about the Perjeta combo barely getting off the ground.

The clinical trial that was so successful for me WAS an anti-microtubule approach. The Navelbine and the Taxol work at different points in cell division, and with the Herceptin added in, the fast dividing cells got slapped down.

I am going to expect to hear lots of"slapping" sounds from your direction.

You still have a few more ponies in the stables yet, so as the Good Doctor said, "one step at a time."

Pamelamary 11-20-2012 11:25 PM

Re: Perjeta failed, changing horses again
 
Hi Chris,
Horses for courses indeed! Sorry to hear about the Perjeta, but I have heard good things of the navelbine combination and, yes, there are lots of other options. Fingers crossed for great results on this more "gentle" regime.
Best wishes.... Pam

SoCalGal 11-21-2012 12:18 AM

Re: Perjeta failed, changing horses again
 
Drove past a new restaurant called "Cimple". The spelling really annoyed me. I thought, nothing in life is so "cimple" you idiots!

BUT NOW, in response to your news, I'd like to say oh chit! So it is cimple after all, to dis kanser. Navy beans supposed to be a cimpler keemoh - I pray it kicks your kanser right in the ask-key.
Sending you tons of love, my friend, and the reminder to breathe, and stay focused. Miracles happen every day. Really. We are living proof of that...

Paula O 11-21-2012 07:16 AM

Re: Perjeta failed, changing horses again
 
Chrissy,

I am praying and rooting for ya.

Paula

Mary Anne in TX 11-21-2012 08:36 AM

Re: Perjeta failed, changing horses again
 
Hi Chris! The Navelbine worked well for me for sure...I remember it to be the one that began the drop in the TM numbers. I have always thought that it was the one, but also the one that worked after being hit with some powerful others which at first didn't seem to have worked. Maybe what you've just done will have been the preliminary step to Navy Beans working just GREAT for you. I'm surely praying that this is just the one! luv, ma

Kim in CA 11-21-2012 09:49 AM

Re: Perjeta failed, changing horses again
 
Oh Frog Farts Chrisy!

Not the news I was hoping to hear from you.

Just chiming in to say that I'm majorly hoping this is the one that is going to "get after it" , and hopefully not too tough on you either.

Like Steph said, I'll be listening for some major "slapping" down sounds wafting up here to the north coast!

Kim

PS: If you want to really try changing horses of got 3 hayburners in my barn, that love to give horsie hugs & kisses (in exchange for carrots of course) Its's the best therapy I knowhttp://her2support.org/vbulletin/images/icons/icon7.gif

Becky 11-21-2012 10:19 AM

Re: Perjeta failed, changing horses again
 
Chrisy

Just letting you know that I am also thinking about you with love and a full, hopeful heart.

karen z 11-21-2012 10:30 AM

Re: Perjeta failed, changing horses again
 
Chrisy,
I get it now and from reading other posts this sounds like a good plan. I know what you mean by your doc not saying "do this definitely" but, a lot of times (perhaps most times) it is the reasoning of a good problem solver who knows there are alternatives and really thinking about various combinations (and doesn't try to defend something said first but rather has a discussion- my doc is like that and I mostly appreciate it). I also like the fact that this may not only be a more tolerable treatment right now but one that has been so effective (I expect to hear those "slapping" sounds too). Best always and love,
KZ

Laurel 11-21-2012 04:21 PM

Re: Perjeta failed, changing horses again
 
Chris,

I just feel in my bones this is going to do something good for you. Have to admit I am disappointed in the Perjeta punking out so quickly. I was hoping for a good long run for you on that one. Well, you know that adage about the closing of one door only to open a window. May navy beans be your window!

KsGal 11-21-2012 08:59 PM

Re: Perjeta failed, changing horses again
 
Well, saddle that new horse up and ride it right into the winner's circle. I believe this new one will win you a trophy. Many hopes, prayers and hugs.

Redwolf8812 11-21-2012 11:27 PM

Re: Perjeta failed, changing horses again
 
Phooey.

Prayer going up.

Just curious, did you ever look into SIR-spheres for the liver? The IR at UPenn who I consulted about ablation said that it's good for those with more than one liver tumor or bigger tumors (I mentally put that in my "back pocket").

michka 11-22-2012 03:18 AM

Re: Perjeta failed, changing horses again
 
Dear Chrisy I was so happy when you were able to get Perjeta and now you have to change again. Navelbine worked for many so I hope that it will do the job. After my liver resection I had navelbine with herceptin and Tykerb for 6 months. I had a pet/scan and a liver MRI when I stopped Navelbine and was Ned. Then I continued on H+T alone. I had another Pet/Scan 4 months later and had tumors all over. My feeling is that Navelbine prevented the cancer from spreading during those 6 months and when I stopped my protection was down.
can anybody explain to me why after a certain number of chemos the next one may be less efficient even if it is very different?
I am sending hugs and hugs Chrisy. Michka


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