Perjeta/Herceptin/Taxotere

Yahoooooooooooooooo! I'm so happy for you, formygirls! What terrific news! You can stay aloft a long time on good news like that. Celebrate somehow. Go on zappos and buy some some shoes. Have dessert for dinner. Treat yourself extra well. Thanks so much for letting us know. I've been hoping all day for good news. So happy for you!

Thank you for the words of wisdom and encouragement. I am just trying to prep my mom for what's to come. Hoping to hear from people with brain mets to hear their course. Funny enough, I am a Nurse Practitioner (primary care) and can read all the journals and medication known side effects but to hear from those who have actually experienced it, means the world. Thanks for the help info- will pass on to my mother who is scared to death of all of the upcoming treatments.

Thankyou Sue, surly and Warriorprincess.



Formymomal- I do have brain mets but have not had WBR yet. They are not sure if the SE are worth it for me at this stage. I did have radio surgery to the initial mets in April but have had more new ones since then. They are just watching my mets for now.



All- I asked my onc how many txs I will get. My ins had only approved me for 3 txs as a special case. She had to have many telconferences with my ins to make this happen and i am glad she persisted. Now my onc is now going to send my scans to them and get me approval for more txs. Hopefully ins wil approve given the good response. My TM also fell again yesterday. She wants me to continue for 3 more months and then rescan. She said she looked at safety data for this study and 8 txs was average and some in the study had been on this for 18 months. Basically we would continue as long as it worked and I could handle the SE.

Great news Formygirls....hope you keep on 'en!

Well ladies it is day 8 after treatment 1 for me so I went for labs. I found my WBC .06 with only 100 neutriphils in the whole place. You begin to think, hey, maybe its me, my eyelashes and hair are retreating, now my WBC's jumped ship. Maybe I'm a bad captain, hard to work for, maybe I should have said yes to that raise 6 months ago. But sadly all I could do was take my Neulasta, my lovely yellow mask, and trugde home to the comforts of my newly sanitized room. I'm in till Sunday....not making light of our situation but hoping to give someone a chuckle.

Hi everyone. I check in here daily but haven't been posting updates because I'm mostly rolling along. Fatigue is still a big bear. I'm still working full time, and the other night I got home and slept a good 3 hours, didn't hear my husband clanking around or the phone ringing or anything. But I had to go to the PA on Tuesday because I had swollen and tender nodes in my neck and had been running a 99-100 degree temp for a couple days. I have some little infections inside my nostril/s and in a blemish under my chin I picked at without thinking and by the nail on my big toe (an ongoing leftover issue from Tykerb/Xeloda that keeps recurring). Every little scrape--a nick on my finger, a sandal chafe on my foot--all are showing irritation/infection. So I'm on antiobiotics. I got frightened by the c.diff thread and so am going to go pick up some probiotics (Flor-A-Stor). 

When I went in to be checked out on Tuesday, they did a blood draw and my WBC was 2.3. Normal is between 4 and 11. Do you know what your WBC levels are? And how low does it have to be before they give you neupogen or neulasta? I have my next tx in a week. I'm two weeks post my second tx and am finally feeling kind of back to normal--i.e., more perky and not like I could fall asleep behind the wheel or sitting at the computer two hours after getting 8 hours of sleep.

Formygirls, do you get a shot of neupogen every day for five days after tx? Or what is the drill for you?

Hope you all have a nice weekend.

Yeah, my counts took a hit on Navelbine too. I was on it about 18 months and had to miss it a few times; it just wouldn't bounce back enough. Oh, I loved missing it though. The only SE I had was fatigue, and boy did I feel great when I could go an extra week without. FMG, I hope the neupogen does the trick for you. I don't know enough about those boosters and whether they take their toll. But I hope you're still feeling good about your scan results. I am so happy for you and am trying not to get overconfident that that is what I'll hear as well. I know that everyone is different. ...Since I'm feeling so much better today, I might put a different kind of toxin in me this weekend, something with a little tequila in it. I can't rule out all the fun stuff in life, right?

Take care! 

Formygirls, seriously?  What is the worst thing that's going to happen?  I went to Coppola Winery for lunch today, 2 glasses of wine.  Came home and had a glass with my adorable husband.  I take 4 mgs of steroids a day.  Never give it a second thought.  What's going to happen?  Will I get cancer?  Will it go to my brain?  I do whatever the hell I want now.  You should see my diet.  Oink.

Jodi,

I agree. What is the worst that could happen now? I will try some tonight. Just felt too crappy for alcohol yesterday as I had 16 mg of steriods.



Jill,

This is not first line tx for me. I was denied twice. But I persisted and arranged tel calls between my onc and the med director at the ins. My onc spoke to him twice, pleaded my case and sent him letters documenting the benefits. My onc appealed on compassionate grounds and mentioned my young kids and the extensive disease i have. In the end, they agreed to approve 3 txs for me. I was just lucky that my onc was persistent and the med director at the ins finally gave in. My 3 txs are now over and they will review my scans from this week and decided if they will approve the next round of txs. Given that my scans showed some imp, they should not deny but I am nervous again.

Don't blame you for being nervous. Hopefully they will approve it. Thanks for your response. I will pass it along to her.

Regarding the question about how I'm getting my Perjeta treatments covered: I have no idea. I didn't know that coverage was an issue until I joined BCO and saw on this thread that people were fighting their insurance companies. I didn't join until after my first treatment, on July 20. A week earlier I had seen my onc to review my latest CT scan, and that's when he told me that I'd had disease progression (liver tumor growth) but that there was this new regimen just approved and he almost went ahead and ordered it for me but decided to wait until my appointment to talk to me about it. I agreed to the treatment and asked him if I could get it right there and he said I could. After I learned about the coverage problem (and that it had been approved only for first line) I asked my onc at my next appointment, August 10, if there were any problems getting it approved. He just shrugged and said no. He also said that technically I wasn't approved for an earlier regimen--I think involving Tykerb--but I hadn't known that. (I have been on Herceptin, Carboplatin, Taxotere, Navelbine, Tykerb, Xeloda). He also said that he would fight for coverage if I were refused and added that the insurance company wouldn't want headlines about me being denied this treatment and would probably bend. I have heard former insurance company execs say that insurance companies will succumb to negative publicity, so I would advise people to use whatever tools they have--Facebook, twitter, blogs, tips to the media--if they're denied lifesaving treatment.  

Here's my confession: I say that cancer has made me pretty fearless. But I'm afraid to open the EOBs that I've received since this tx started. I've not received any bills yet, so want to believe it's all covered, though I know there can sometimes be a lag in billing. But I admit I'm not ready to know the truth. If it weren't covered, I would still pursue the treatments and figure out later how to pay for it. It's not an option for me right now to forgo treatments, though there is no question this would quickly become a hardship.

Lilylady, I'm so sorry you're dealing with the coverage problem plus the medical leave issue! You don't need that. I advise you to document every attempt to contact caseworkers. E-mail is good for documenting, but keep a pen and paper list of every call you place and the time and what you said. And maybe keep a daily journal of how you're faring, what you're experiencing, every little side effect, fever, headache, ache, dehydration. I haven't had to do that but will if I find myself in your spot.  

Formygirls, I did have two Margaritas last night. One for you and one for me. They were kind of weak though. I rarely drink now because I have enough trouble sitting up straight while sober! And though I never drink enough to do anything embarrassing (not that I recall, anyway), I certainly can feel the impact the next day. So I get why you'd want to be cautious. I hadn't thought about the mixing of steroids and alcohol. I'll have to look into that. You're on a pretty heavy dose. My onc let me cut mine back to 4mg twice a day for the three days around chemo and none beyond that. They give me 10 mg in a bag in the premeds.

Take care. 

oh formygirl i am so happy for you.  i am sitting here crying for you and how happy you must be.  see we are going to do this and beat it.  you are doing it.  you are a strong woman you keep up your strength and faith.  i am so happy for you!!!!!!!

sending you love, hugs, and rays of sunshine

michele

Surly..all good questions. I'm not on perjeta but in the case of the woman for whom I asked the question, her onc is trying to get it pre-approved. I believe it would be prudent for any office to check with the insurance companies for the drugs they are giving to be sure they are covered and don't require per-authorization but whether that is standard practice in every office....I doubt it....that would be too easy. And your onc being in network only means that his fee is covered at the in network rate but it doesn't automatically cover any treatment he chooses to give you. If he failed to get the necessary approvals and went out on a limb and gave it to you anyway I would definitely take issue with his trying to bill you if that were to happen.



Don't open the EOBs. And don't worry about them either....put it on a back burner for now.



And Lily...forgot to say, I'm not surprised you're the pet!



And thanks all for your input on the approval thing.

JillThut, thanks so much for permission to let those EOBs stack up in my inbox! I felt phsyical relief upon reading that. One of these days--maybe after washing down a bunch of steroids with a tumbler of tequila, I'll be brave enough to open them and square off with the insurance co.