Tykerb stopped working
 

So I haven't updated everyone in a while. I got back to Texas, found a good job, and started dating a great guy...

thing is... my liver and bone mets aren't responding to treatment. This is like my 3rd round with NED, now I can't get NED. It seems like I'm not even getting any relief of my symptoms after they just switched me to Herceptin/Navelbine. I feel like someone is stabbing my back and my insides. I'm starting to get scared that this is the calm before the storm.

Since September, I went from Tykerb alone to Tykerb/Xeloda (progression), Tykerb/Gemzar (progression), Herceptin/Navelbine (feels like progression). If they don't hurry up and find a good combo, I won't be able to walk any more. It always seems like we get everything going just right, and then cancer kills ya. I'm so ready to have this stuff get beat back again! I need some real encouragement with people who HAVE BEEN THERE! and I know I am in the right place.

Love, Julie

Julie, don't you need to give Herceptin and Navelbine a little longer to work? It was on these drugs that my markers began to go down after doing all the other stuff. I'm believin', prayin', and thinking good thoughts of NED for you! ma

Julie,
Sorry to hear you're in pain. And I know that must be very scary that you haven't yet found the right combo to regain control over those liver mets - but that doesn't mean it won't happen. Do not lose heart.

I don't really know what to make of the pain you're currently having - you say "feels like progression". Have you experienced similar pain due to progression in the past? Is what you're feeling now an extension or increase in pain you had prior to going on Herceptin/Navelbine? Or is it a new type of symptom since starting the new combo? Remember, "pain at tumor site" is a known possible side effect of Herceptin.

Looking at your history of therapy, it seems that you did well on Herceptin for a good amount of time, then also had a good run on Tykerb based therapy. Unless I'm reading your bio wrong, herceptin+ a chemo has not failed you in the past, what I read is that after the cancer escaped the Herceptin alone, you went on to the Tykerb regimens.

So, going back to a Herceptin/chemo therapy at this point could still work very well for you. Herceptin and Tykerb work differently as you know.

What are you able to do in terms of pain control? Are you working with a pain specialist? If you can get the symptoms managed that will help immensely.

Hang in there, sorry I don't have more to contribute - just know I'm holding you in my thoughts.

Love
Chris

Hi Julie -
Sending prayers your way. I agree with Chris and I think the Herceptin takes a bit of time. I wish more oncs would use tykerb with herceptin. Stay strong!
Flori

I looked at my CT scan yesterday... I'm not sure what to make of it, but the progression I keep thinking is the mets in my spine. I have recently started to really hurt in my back. Maybe you are right about the Herceptin tumor site pain. Since I started Herceptin, I felt the pain in my back just increasing. However, the tumors are looking pretty yuckie. I kinda feel like one of the previous treatments might be a good idea because it was over 2 years ago, and because the tumors are in the same places... just with more frequency. The stuff in my liver originated from the one largest spot I had, the stuff in my back is in the places that were radiated (mostly). So logically, if it's the same stuff that went into hybernation, why not use like my 1st stage 4 treatment that knocked it out in 3 months?

Julie - where are you in Texas? Where are you going for treatment?

I had good runs on both Herceptin and Tykerb in separate settings at different times. I think that there is always life left in both treatments, just that you need to continue trying different combinations. I switched from Tykerb/Xeloda in Sept. back to Herceptin but w/ Tykerb, and it is doing a double targeted smack down for me right now. It is entirely possible that you still have some good efficacy left in both Herceptin and Tykerb, but in combination. Something to consider. (My doc says that if we see any progression on this combo, we will then revisit adding in different chemos that I haven't had yet, including gemzar and navalbine). And, in lieu of that - perhaps the TMD1 trial is offered at your clinic. It got amazing reviews at the SABCS conference last month. Ask Chrisy about it, she has had good response to it.

Keep us posted!

I so empathize
 

Julie, I really understand your frustration and pain, emotional that is. Just when some of our hopes and dreams are coming true-cancer reaches in and sucks some of the joy out of it. It makes me angry for all of us. I have shed many tears in the dark over that. It makes you wonder if we should pursue anything at all in the dark times. I am so sorry about this phase of things for you.

But, I do think some of our resident sages, yourself included, have offered some good advice and experience as well as questions to pursue with your medical team. We have to believe that there is always something else. It is a hard hope to have when you see the word 'progression' over and over again. But there are things out there and the DM1 trial could be a great option for you among several.

Continue to hope and to fight. Be mad and frustrated too when you need to. I know how exhuasting it is.

I know you will find the route you need to take and I am hoping it is effective and fairly easy to take. Being in Texas is a good thing too as was mentioned. As Will Ferrel said in "Blades of Glory": "work the google on your internet machine," and find the trials that apply to you and ask, ask, ask all the questions you can.

I live in DFW. I just got back from the onc, and my liver mets got a little better, my bone mets got worse, and my tumor marker went up. So he wants to go back on Herceptin/Carboplatin/Taxol. If my insurance will allow it, he is going to substitute the Taxol with Abraxane. That should help with toxicity. Anyway, I don't know how I feel about going back to an old treatment that worked, but if it doesn't help, he wants to go to Avastin + chemo. Any thoughts?

I feel so down right now, I just wanna tell the guy I just started seeing that he would be better off without me. I know that's not right, he's been single too much. But it just doesn't seem fair to him at all.

Oh poo,
I just wrote a perfectly worded response, with all the answers to everyones questions and the last piece in the puzzle of finding a cure for this stupid disease...then my login timed out and I lost the post, so now it's back to square one on all those things!

Couple of thoughts:

Are you sure the "getting worse" in the spine is progression? I have heard that effective treatments for bone mets sometimes initially make things look worse and can even elevate markers. Before changing horses, be sure it's not working.

Re going back to an old combo that works: especially since it never failed and it has been several years, that would seem a reasonable approach. Changing it up for Abraxane might be a fight, but in addition to the tolerability it is also proven to be more effective so you could go at it from that angle, too.

Avastin in theory works best when used earlier in therapy rather than later - so you might also consider doing that now along with the taxane and herceptin, maybe instead of the carbo?

Julie, there are so many options, and good ones, still out there. Do what you're doing - collect information, ask questions, maybe get another opinion then trust yourself to make the right decision.

Others here are struggling with similar "relationship" issues and it is so hard. At this point you don't know how any of this will play out, or for that matter what is 'better' for him. Try not to take on the burden of feeling responsible for his well being - focus on your needs. What may be best for him is to be around a powerful lover of life - like yourself.

hang in there, my friend

Re: bone mets, are you getting Zometa infusions? Good results have come from Zometa trials and bone mets... and again, not to be a pest, I would ask the onc about Tykerb/Herceptin combo.

I sure appreciate all the responses. I haven't done Zometa yet. I think Abraxane could be approved pretty easily, for today, we will just use the Taxol.

With Herceptin/Carbo/Taxol I didn't loose much of my hair. But this onc seems to think I will loose it all. I asked him to look at the dosage of what I had last time, and he said it was a light dose. Why does he think it would work any better or worse dependant on the dose? If it is going to work, I would think it wouldn't work any better by adding more. It worked in the past with smaller doses, why try and load me to the point where I will have trouble and might miss doses? I really fought with him on this, and he doesn't seem to want to budge. Isn't it my choice if I want the light or heavy dose? It's not really about vanity, it's about the fact that it worked like a charm in 3 months with the light dose. I had blood count issues too, so they decreased amounts due to that. If he loads me down, I will get low counts and likely miss doses. I don't know how to convince him, or what my rights are.

I will think about my guy in that light too. Maybe I am what he needs. He hasn't been interested in dating anyone in a long time, got close to marrying 2 times, and just seems to kinda given up on it. He's very private, so for him to be opening up to me, it's very special. Maybe I am the one to help him in his journey to opening up and not giving up. If I can have a relationship in my situation, there is no excuse for him - LOL! He's cute, has a sense of humor, has his life so nicely settled, has loads of common sense, a wonderful work ethic ... nothing like my ex... I just find him refreshing and fun to be around. Just yesterday, I shy'ed away from a long hug, and realized what I had done. He told me to stop, and to let him get close, so I guess he really does. It's so hard to believe that my ex gave up on me after 11/12 years of marriage... and someone new, can come along and be stronger of a man in a week. Maybe it's about the charachter and soul? Maybe I overthink? :) I just find myself in awe and I honestly don't get it. I just enjoy the time.

Anyway, does everyone loose their hair on Herceptin/Carbo/Taxol?

Push for Zometa for your bones!! Very important.

I lost all my fur on TCH. We dropped Carbo after 6 treatments as he didn't want it to beat up my bone marrow too much... Something to keep in mind.

Herceptin + Navelbine
 

Dear Julie;

Navelbine and Herceptin works wonders for a lot of us.

As fa as bone mets, I think cyberknife is the answer. My brother in-law had a prostate cancer recurrence with mets to spine and upper neck, after a week of radiation- at first he got really sick, though- he's back to normal, no pain, side effects from radiation, etc., and he actually was able to spent New Year's in beautiful Costa Rica.

Another option would be the MD1 Trial. Stay positive.

Love and prayers,

Adriana

Insurance approved Abraxane
 

I wonder if the Herceptin/Carbo/Abraxane will be easier on my hair than Herceptin/Carbo/Taxol. I didn't loose enough hair that time for people to even notice, but my new oncologist seems to think it was because my doses were smallter than the ones he wants to give me.

I just keep saying "if it's going to work, it will work in the lower dosages. It didn't work when I did dose-dense treatment any better than the lower dose." I almost feel like the adjuvant dose dense treatment was a complete waste of time. I was practically stage 1, and it still came back. The dose-dense combo obviously didn't work.

Why can't I have the lower dose and keep my hair? Why does this oncologist want to trump my old oncologist?

Julie what Oncologist do you see in the DFW area?

Dr. Barry Mirtsching

Julie I would check and see if they are doing the TMD1 trial. I thought I saw where the place your going is doing it.

Julie...
 

prayers are with you. Take care and God bless.