Decisions...what to do? Chemo related?

Chelee · 10-20-2009, 09:30 PM

Ok, I've seen two 2nd opinions & of course I need to decide on one & get started. As you all know Dr. Slamon wanted me on TDM1 & no chemo. But with my HMO that isn't going to work out. I can't pay out of pocket.

When I called Dr. Slamon's office about this his NP talked to Dr. Sara Hurvitz which works along side Dr. Slamon. She said if I can't do the TDM1 I should go with Herceptin, Zometa & Tykerb. Benefit of Tykerb of course is it crosses the BBB which I like.

Went to the City of Hope onc today...& she said Navelbine, Herceptin & Zometa. I told her what Dr. Slamon's office said about the Tykerb & she wasn't for that? She was also surprised Dr. Slamons office would offer me the TDM1 study because she says you have had to of done other chemo's first and failed to get into that study? (That confused me & I believe she is incorrect about that.) She had no comment when I told her how well the TDM1 trials were doing? Maybe I read her wrong but she shook her head like she wasn't impressed?

My onc orignally said I could take Navelbine, Taxotere, or Tykerb...my choice. The "COH" onc said since my TM'ers have been going up slowly for the last yr thats a good sign that the cancer isn't moving that fast so Navelbine with Herceptin should be fine & easier on me then the Tykerb.

I've only did TCH when first dx. As Chrisy said once, I did a sprint when 1st dx but this time its a marathon I'm gearing up for. So for those of you that have been down this road, & even those that haven't any advice on which chemo combo I should choose would be appreciated. Since I know Herceptin alone works for me since it dropped my TM'ers to 37 in two wks time should I hit this with the Navelbine, or harder a hitter like Tykerb? Is it better to save the big guns for later? (I some times think my onc chooses things by cost because of my HMO.) Whatever is cheaper is what she chooses.

Chelee

Chelee · 10-20-2009, 11:42 PM

I had hoped to get back from "COH" early enough to post my question to you all. But posted too late looks like. I have my onc in the morning & I'm not sure what I should tell her. I know I will be doing my herceptin tomorrow....then I will probably start chemo on Monday? So I'm still open for any & all opinions. Thanks!

Chelee

Sheila · 10-21-2009, 04:36 AM

Chelee
I did Navelbine for 4 months and then it quit working...i did it with herceptin...many others have gotten a long sprint with the "Navy beans" as a few call it. I found it very easy to do.....funny how Dr's think....Dr Slamon and my onc. both like the Tykerb herceptin route...my insuance wont cover the Tykerb...I'll be anxious to see what yours does.... you can always start with navelbine, and if you dont get good results you can switch! I know you will come out on top no matter what....you are strong and focused!!!! You are in my thoughts and prayers Chelee!!!!

Becky · 10-21-2009, 05:53 AM

I think many, many women have difficulty getting Tykerb especially with only the Herceptin (and Zometa of course). One thing you should keep in the back of your mind is that Herceptin works for you and you should always have it as part of your cocktail regardless.

If you can't get Tykerb with Herceptin, perhaps later on you can get it with Xeloda and keep the Herceptin going.

Since you have to make a decision and Tykerb is probably out of the question, you have tried Taxotere (even though it was with Carboplatin) and you got a long run with NED with it. However, it is harder than Navelbine and you lose your hair. Andddd, perhaps it was the Herceptin in the TCH that gave you your long run too. You never really know what's working for you when you take a mix.

Anyway, I am running on here. Navelbine is no steroids too if I remember so you won't have that to deal with and no hair loss either. Navelbine works very well for many people and you may be one of those people.

Both Navelbine and any taxane are synergistic with Herceptin too so no problem there. The choice is yours.

Many oncs try less toxic regimes first. Even Herceptin and Faslodex (with Zometa for your bones) and see if you get a good run on that. I think that is why Dr. Slamon says Herceptin, Tykerb and Zometa because theorectically, none are true chemo but immunotherapies and a bone hardener/repairer.

Ask you onc if you can use Faslodex now that you are Stage 4 and you are also hormone positive. Herceptin works well with that too. You should be able to get Herceptin, Zometa and Faslodex and then only decide on a chemo drug if you truly can't add the Tykerb.

I am hugging you hard from afar.

Love, Becky

StephN · 10-21-2009, 12:35 PM

Dear Chelee -

Looks like you are now going into a pattern of tumor containment and hopefully reduction until T-DM1 has FDA approval, should you still need it.

Is Tykerb very effective against bone mets? Seems I have heard it is not. Please check this or someone else chime in. I think they are working on coming out with a new form of Tykerb that should be more effective for more people.

I have a friend whose cancer returned in 2001 much like yours, with mast scar - chest wall and a few bone mets. This is her story.

She was put on WEEKLY Herceptin, Navelbine and had the old form of Zometa once a month. Femara was added (as Becky suggested), which was later changed to Faslodex, since she was hormone positive.

Friend made it to NED and had another couple of years with the same drugs as prophylactic minus the Navelbine. Her hair did thin, but not to the point of needing a wig.

Cancer eventually did come back in nodes and she is still in the fight doing pretty well right now.

Navelbine with the taxane Taxol plus Herceptin got me to NED and I had much faster moving disease.

Whatever you choose to start with, you know there are more options (maybe NERATINIB, which I don't see mentioned for you yet).

Julie2 · 10-21-2009, 03:07 PM

Cheele,

You can try Tykerb with Herceptin first and see how you respond to it. You can try Navelbine if it doesn't work out. Also if Tykerb doesn't work with Herceptin it doesn't mean they will take Tykerb out of your list becuase it can be tried with Xeloda. Navelbine is easy to tolerate but it is still a chemo and affects the blood counts. I have been on and off Navelbine since two years, and in between was on Tykerb. I am going to try Tykerb once more now. Also try to get Her2 serum test if it is possible. It is easy to monitor the response(It has the side effect of increasing the anxiety).

Julie

Rich66 · 10-21-2009, 03:27 PM

Steph,
Is this the new Tykerb variant you were thinking of?
http://her2support.org/vbulletin/showthread.php?t=41478

Denosumab is promising for bone mets if it gets approved.

Chelee,
Not the norm as far as I can tell..but... My mom is on Navelbine and it wiped her Xeloda preserved hair right off her surprised head. And for some reason, the clinic she goes to gives premeds for the 'bine. My folks are always finding ways to remind me how exceptional they are.
If you get Zometa, you might push to get it 24hrs after whatever traditional chemo you get. There is some indication that Zoledronic acid can synergize chemos (Doxorubicin) when given 24 hrs after.

I can't remember where your mets are but were they biopsied? Herceptin may have upregulated the ER receptors, making Faslodex (another chemo synergizer) attractive.

Lapatinib is supposedly a cancer stem cell (CSC) fighter and can synergize with Herceptin.

Lastly, any other trials involving CSC targeting drugs available to you?

BonnieR · 10-21-2009, 05:14 PM

Chelee, I sent you a pm

Barbara H. · 10-21-2009, 05:29 PM

I am starting Tykerb and Herceptin tomorrow. I had a harder time with Navelbine than many on this site. It depleted my red blood count, my hair thinned and I was tired. At the end I stated to get a little nauseous after my treatment. I was only on it for about a half of a year. After that I took Herceptin until May. I discontinued everything in May and waited until I started the TDM1 trial in September, 2007. Unfortunately It caused lung inflammation and I had to stop it in last month. I have never had an issue with Herceptin. I hope that Tykerb will not be that bad. I have 27 parent conferences plus my teaching load starting next week.

Stephanie, I am taking Tykerb for the bones so I think it must be effective for some people.

Good luck Chelee. I wish you could get into the T-DM1 trial. I found it very easy. I don't really feel any different now that I am off of it. Eventually, it will be approved and then it will be an option for you. I think it is the best option out there now for many with HER2 breast cancer.

Keep us informed.

Barbara H.

BonnieR · 10-21-2009, 08:41 PM

My husband just reminded me that when I was first diagosed that my case was presented to 2 different "tumor boards" for discussion and consensus. Is that something that would apply in your situation?
I also sent another pm. Not sure it went thru...

SoCalGal · 10-21-2009, 09:09 PM

I've had pretty good luck with herceptin, tykerb, zometa, avastin. I would try the targeted therapies before chemo if possible. Tykerb does nothing for bones unless I was absent that day. Tykerb crosses the blood-brain barrier.

You can try the above regime and always add in navelbine if needed.
xo Flori

Chelee · 10-22-2009, 01:16 PM

Lots go great feedback here...thanks! I tried to reply yesterday but lost my reply...it tried to make me sign back in again?
I did see my onc and she and COH onc really think Navy beans, Herceptin, Zometa is the best way to go. They both seem to think I have to have chemo added and they don't understand why Dr. Slamon made the suggestion he did. (Well I do!) I think some of this is exactly what Becky said....it's hard to get Tykerb with Herceptin alone. I think Dr. Slamon is the only one that realizes how serious a problem I have with my lungs/pulmonary issues...thats his biggest concern. Also my Dad died at 36yrs old from massive heart attack. He was very concerned about me after physical exam and with good reason.

My onc wants to start me on wkly Herceptin, Navelbine for 6 months. She said if I tolerate it ok wkly I can always switch to every 2 wks or even 3 wks. She said PET/CT in 3 months to see if its working? I only did my 2nd dose of Herceptin yesterday (Wed) because when I start trt I need to start on a Monday or Tuesday for this to work out at home. So I am tempted to call Dr. Slamons again...I'm frustrated that both onc don't seem to understand Dr. Slamons recommendations on Herceptin/Tykerb, Zometa? I always think it comes back to cost/insurance companies especially since I'm in a HMO. (Or I could add the Faslodex in the mix as Becky suggested...another good option that hasn't been mentioned.)
Who knows I may change my mind by next Tues...I thought she would just go with what Dr. Slamon said.

Chelee