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Topic: Perjeta/Herceptin/Taxotere

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Jul 14, 2012 02:06PM

lilylady wrote:

Looking for partners to share experiences with this new combination. I start Tuesday provided the ins company approves it.

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 14, 2012 03:04PM formygirls wrote:

I will give you company. My first infusion took all day, almost eight hours but that included labs. Ins approval for this drug is very hard, especially if you have had tx before. It took me a month to get ins approval and included many appeals. I will write more later. I have to much tingling in my fingers to type and and am exhausted, feel like a truck hit me. I could not work this week but everyone reacts differently. I do not like Taxotere and hated taxol when I got in 2008. I feel very similar to how I felt then. I am also getting intrathecal chemo so the side effects are cumulative. I had Navelbine before this and that was easier. The steriods for Taxotere and intrathecal chemo have set off diabeties in me and I am also handling the side effects of very high sugars.

I hope this chemo combination lives to its promise. My onc is excited by this drug combo and it could be my last option. I would definitely enjoy food this weekend as my taste buds are shot.

Initially diagnosed with triple neg stage 3 bc in Feb 2008. Mets dx in Feb 2012 with change in receptors .Mets to liver, brain, bone, lung and nodes and central nervous system. Dx 2/3/2012, IDC, 6cm+, Stage IV, Grade 3, 2/29 nodes, ER+/PR-, HER2+
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Jul 14, 2012 06:35PM sueopp wrote:

Folks:  I have never heard of Perjeta - is it the same as pertuzimab (sp?); is it a Her2+ chemo, is it a new drug?  I would love to know more (I have the same receptor status as you both) and thanks - SUE 

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jul 14, 2012 07:21PM deenah wrote:

I will be starting herceptin/pertuzumab/tykerb on Tuesday! Very excited about this combo. No chemo for me! I have been on T/H for 1 1/2 years now.

www.caringbridge.org/visit/dee... Dx 3/22/2010, IDC, 6cm+, Stage IV, Grade 3, 18/40 nodes, ER-/PR-, HER2+
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Jul 14, 2012 09:32PM Chickadee wrote:

Prejeta is pertuzumab.

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jul 15, 2012 05:44AM Tiger_Blood wrote:

I should be there Tuesday along with you! Email me and let me know what time your appointment is. I will bring party favors.
Love you!!!!!!!

My wife has Tiger Blood. Winston Churchill: If you are going through hell, keep going Dx 3/7/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 15, 2012 10:21PM lilylady wrote:

Everything I have read about this combo says it is for Stage IV that haven't done other first line chemo. Who the heck would that be? That would be a very small segment of people becaasue most late stagers didn't start out as IVs.

I am expecting a huge fight. They made me apply to get Tykerb/Xeloda-every 3 weeks when they needed to be renewed. My guy says don't worry-show up Tuesday and he will have it all worked out. They did tell me to expect to stay all day because they will run it very slow to make sure there are no reactions.

sueopp-what have you been on so far?

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 16, 2012 07:39AM sueopp wrote:

Hi Lilylady,  Thanks for the info and please! keep it coming.  My past treatments:  Went metastatic after 2 years of herceptin, switched to TDM1 for 3 months but progressed, moved on to xeloda & tykerb for about a year and a half, now I am back to herceptin and tykerb, which seems to be doing the trick - for now at least, I am "stable".  My doc has been really enthusiastic about pertuzumab and has been waiting for it to be approved.  However I don't think he expected that it would only be approved for folks who have not done other first line chemos.  Like your doc, he told me that getting insurance to cover might be a fight.  On the other hand, he seems to feel that it won't be a fight for long (?) so I am trying to keep track.  Would be really glad to know what happens in your case.  Good luck - you will be breaking new ground for alot of us.  Best to you - SUE 

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jul 16, 2012 11:08AM lilylady wrote:

They have not called me yet to say not to come so I am hopeful. I will have more info after tomorrow for sure. They did tell me to expect to stay at least 6hrs-or longer. Loading doses for all 3 drugs will be 3 90 minute drips-cannot be run at the same time plus the bag of pretreatment stuff plus the labs and the time with the nurse clinician to tell me how to treat SEs. I found the last part hilarious-who doesn;t know how to do most SEs when you have ben at this for a while?

I got my FMLA papers from work today. I told my boss I do not know if I will be in the rest of the week after I leave tomorrow. I have been working 70hr weeks while on Xeloda and Tykerb. I am hoping I can do at least 40 while on this stuff.

  Formygirls told me her ins co approved 3 tx-they want to see if it is working before they approve more. My ons did  say we will scan after 3 tx instead of waiting the usual 12 weeks.

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 16, 2012 05:54PM lilylady wrote:

I was turned down for the Perjeta today by the insurance co beecause I do not fit the FDA guidelines for approval. I have already recieved a first line chemo so they are not obligated to pay. We are appealing but the onc said we will only wait a week before we start something else-which would be Navelbine. Insurance company said if I fail on 2 more traditional chemos they might approve. or comapssionate care if i am almost dying-fat lot of good that will do me then.

Cancer sucks /insurance companies suck more! 

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 16, 2012 06:44PM bhd1 wrote:

its the fda not the insurance who is the problem.  only for first  line.  wtf. 

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Jul 16, 2012 06:58PM SPAMgirl wrote:

Lily lady, what kind of job do you have where you work 70+ hours/week.i used to work that before cancer, butnoe I'm just too tired. I almost feel like I'm more of a hinderence than a help. I can't work enough hours to finish projects that I start. How do you so it?

mets to liver, bone and brain Radiation Therapy 03/05/2010 Surgery 09/01/2010 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast; Reconstruction of my left breast: Nipple reconstruction, Tissue expander placement; Reconstruction of my right breast: Nipple reconstruction, Tissue expander placement Chemotherapy 09/26/2010 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol Hormonal Therapy 02/19/2012 Arimidex (chemical name: anastrozole, class: aromatase inhibitor) Dx 2/20/2012, IDC, 2cm, Stage IV, Grade 2, 4/16 nodes, mets, ER+/PR-, HER2+ Chemotherapy 02/26/2012 Navelbine (chemical name: vinorelbine) Targeted Therapy 02/26/2012 Herceptin (chemical name: trastuzumab) Radiation Therapy 03/16/2012 Chemotherapy 04/05/2012 Halaven (chemical name: eribulin) Targeted Therapy 11/04/2012 Perjeta (chemical name: pertuzumab; also known as Omnitarg) Chemotherapy 11/04/2012 Taxotere (chemical name: docetaxel) Targeted Therapy 11/04/2012 Herceptin (chemical name: trastuzumab) Hormonal Therapy 11/04/2012 Faslodex (chemical name: fulvestrant, class: estrogen receptor downregulator (ERD)) Chemotherapy 03/31/2013 Adriamycin (chemical name: doxorubicin) Chemotherapy 06/16/2013 Xeloda (chemical name: capecitabine) Targeted Therapy 06/23/2013 Tykerb (chemical name: lapatinib)
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Jul 17, 2012 06:54AM sueopp wrote:

Hi Lily - this makes me just furious!  I don't know who to be madder at, the FDA or the insurance company or the pharmaceutical company that did the trials with such limited parameters.  I guess, as always, it still all comes down to the money (and the "staticstics").  I would try to make my anger felt, but I have noticed that in the past, the patient's view doesn't seem to count for much.  I'm sorry Lily.   I know that lots and lots of folks here have had good results on navelbine, and you will be one of them too.  Meanwhile I guess we wait and hope that perjeta moves into the mainstream.  Thanks for keep us in the loop, and keep on truck'n.  Best to you, SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jul 17, 2012 08:20AM formygirls wrote:

Lily,
Do not give up yet. My ins also denied me initially. My onc had to appeal, speak with their medical director and write letters pleading my case. She used that the fact that I have young kids and things are not going well. She sent him copies of studies also. I hope you get this on appeal. I think it is shameful the way FDA has approved this drug. I have also received approval for only 3 txs. They want to see imp in 3 txs or Cigna will remove approval.

Initially diagnosed with triple neg stage 3 bc in Feb 2008. Mets dx in Feb 2012 with change in receptors .Mets to liver, brain, bone, lung and nodes and central nervous system. Dx 2/3/2012, IDC, 6cm+, Stage IV, Grade 3, 2/29 nodes, ER+/PR-, HER2+
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Jul 17, 2012 04:22PM lilylady wrote:

Great news today. I went for my Onc appt and I will start Perjeta Friday. The oncology practice is going to use their slush fund to pay for my first tx while they work thru the appeals process. Each doc has some funds they can use for things that they might have no hope of recouping the cash on. He has picked me to spend his money on. He thinks we will get it done with the insurance company eventually but he doesn't want to wait.   I  think since I am the first in the practice who will get this  they are excited to see how it goes. I have filled out the financial assistance papers to assist in the cost just like I did for Herceptin.

 The nurse clinician and the nurse practioner are going to Perjeta school tonight. Nice dinner, wine, door prizes-all paid for by the drug company-oh and i think they are supposed to learn about the drug and its SEs too. They were pretty dressed up since they were going straight from work. I think I know more about it than they do because when i was talking to them they kept saying "I didn't know that, did you?" to each other.

  I work in a Ford Motor Co transmission plant as an electrician on the main assembly line. I fix the machinery if it breaks down. And in the heat we are having it breaks a lot. Average temp in the plant is well over 100 deg for a while now. I am also the team leader for our area. I have been trying to work as much as possible because I was off 10 months last year. I pretty much went thru my savings and I knew the day was coming when I would have to take off again. My people will do all they can to keep me in there-because no one wants to do my stuff or go to all the stupid meetings. I will cut back my hours and not work weekends til I see how it goes with this. Onc has said the loading dose will be the worst probably. I take Concerta which really helps me. Before i barely got thru the day and died when I got home. Now I feel like my old self most days. I have had very little problem with the Xeloda/Tykerb but seems like the fatigue is what usually gets to me. I got FMLA papers filled out or I can go out on medical if I can't handle it.

  How is going for you formygirls? You have been thru so much I am sure this isn't going to be that easy on you. I hope they can come up withsome things to help you. My brother is on heavy steroids and he has a horrible time with his diabetes. They really make it wacko!

  Deenah-keep us in the loop as to how you are feeling. I have done taxotere and herceptin before and it wasn't horrible for me. Hated the Herceptin worse than the T because it made my knees hurt so bad. You say you have never had chemo? I lost my hair on day 17 the last time I was on the Taxotere-heres hoping I am in the little bitty percentage that dpesn't lose theirs. Also have you read about icing your fingernails and toenails while the T is running in? I never lost a nail-they claim it doesn't help but all the threads talk about doing it.

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 17, 2012 05:01PM lilylady wrote:

Change in plans. First tx will be next Tuesday. Another weekend to take the tastebuds out for a whirl. Carrabas is defintiely on the list. They have advertised non-stop here lately.

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 17, 2012 05:36PM formygirls wrote:

Lilylady,
This is great news. Your onc sounds so wonderful. It gives me hope that doctors care. I go to a big cancer center and they would never do anything like that for me. I am just another patient.

I still feel horrible. I just need to cry. Being exhausted and not being able to eat is hard. My onc refused to give me insulin today. Said I had bigger problems even though my sugars are 300s. It's like they have given up on me.I am vegetarian so a low carb diet is so hard.

Initially diagnosed with triple neg stage 3 bc in Feb 2008. Mets dx in Feb 2012 with change in receptors .Mets to liver, brain, bone, lung and nodes and central nervous system. Dx 2/3/2012, IDC, 6cm+, Stage IV, Grade 3, 2/29 nodes, ER+/PR-, HER2+
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Jul 18, 2012 07:23AM sueopp wrote:

formygirls, I am so very sorry that you are feeling badly.  Don't give up, everyone here is rooting for you.  Hope you are better soon. SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jul 18, 2012 07:28AM sueopp wrote:

Lily - fantastic!  Wow do you have a great team.  Thanks for the info and please keep it coming - I'm really interested in this new drug and how it all works out.  PS:  you are an electrician and mechanic and team leader?  Amazing - sounds like you have already been blazing a trail for women.  Good luck - SUE 

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jul 18, 2012 07:42AM bhd1 wrote:

sounds like you have a great onc.  good luck on the tx.  i love carabas.  muscles for me and chicken bryan for dh

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Jul 18, 2012 04:59PM deenah wrote:

Lily - I have done 3 different chemos in the last 2 years. A/C/T/H, then navelbine/herceptin, then herceptin/tykerb/xeloda. This time no chemo for me! My body so needs a break!

I had my first pertuzumab/herceptin infusion yesterday. It was a breeze. They gave me benadryl with it, but next time I won't need it. I had so e diarhea last night, but 2 Lomotil took care of it. No other side effects. Next week we will start incorporating tykerb into the mix. 1 pill per day the first week, 2 per day the second week, and so on u til I am up to 5 a day. Next infusion in 3 weeks!

Good luck to my fellow pertuzumab people! May this drug be our miracle!

www.caringbridge.org/visit/dee... Dx 3/22/2010, IDC, 6cm+, Stage IV, Grade 3, 18/40 nodes, ER-/PR-, HER2+
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Jul 18, 2012 11:46PM lilylady wrote:

I have done TCH X 6 last summer then Herceptin til it failed In Jan then on to Tykerb/Xeloda. I was never able to get to 5 Tykerb.every time I tried by Day 5 I got an acne like rash on my chest, face and arms. Got some pretty wicked scars on my arms from it because it itched worse than poison ivy. I even tried 4 one day and 5 the next.

Deenah you are so lucky to not have to do the Taxotere. Dreading it but it kicked the crap out of my stuff last year. I usually get the Big D no matter what so i am pretty good at mangaing that. I refuse to do the benadryl on tx day. I told them I am not snoring and drooling in front of strangers. I quit telling them no I just pocket it when they turn their back.

  This has been such an emotional roller coaster. First i was getting the stuff then I wasn't then I was agin. Coupled with another bad scan-seems like when I was first dxed all over again.

  I talked to a nurse who was part of the trialfor Perjeta and she said it was like people either got real sick or they did real well as far as SEs. She said unfortunately alost everyone lost their hair. that won;t probably be you Deenah because I think it is the axol that does that.

  formygirls-what is your name? I feel so bad for you. I just saw your thread about the extreme fatigue and I posted about using Concerta for energy. It works great and he was the one who suggested it to me. I am usually a high energy buzz saw and i hated feeling like I was walking in quick sand. You have been thru so much it is no wonder it is hitting you so hard. Just keep telling yourself we are so lucky to be getting this huge break thru drug and i think it is going to be magic for us!! That nurse i was talling about said it was sogreat to be a part of the trial and it was amazing at some of the results they were getting.

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 21, 2012 06:18PM lilylady wrote:

Ijust saw on another web site that a lady got her first tx and they billed the ins co $27,900 for the Perjeta and $17,900 for the Herceptin. I am also goting to get Taxotere plus the pre-treament drugs. Wow!! No wonder they don't want to pay.

  Every web site I have been on has the same story. Hardly anybody is getting approval for this drug. I will at least get the first tx Tuesday but if we can;t get it approved I will move on to Navelbine.

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 21, 2012 09:22PM bhd1 wrote:

Lilylady good luck. I will be thinking of you and hoping for the best

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Jul 22, 2012 08:10AM sueopp wrote:

Lily, how dare they!  We are talking about lives here, not business and profit.  I read somewhere that a year of perjeta would cost over $250,000, over a quarter of a million dollars - Good luck, Lily, and I will be sending all my fierce karma your way.  You are fighting for all of us who need this drug.  SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jul 23, 2012 06:47PM lilylady wrote:

It has been a while since I have done the chemo room other than to get my port flushed. I have my bag packed with mail,magazines and a new paperback. Also some snacks and will throw the frozen peas in for my fingers and toes.

 They told me a minimum of 5 hrs so I am going for cozy sweatpants-not a germophobe but hate sitting in a chair that so many sick people have sit in so I try to wear pants. I am also a freezecat so I wear a jacket.

  I am going in at 1am so I can get 8hrs in before I leave. Nervous wreck about wether I will be able to make it the rest of the week.

  I will keep you all informed.

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 23, 2012 08:14PM JillThut wrote:

Very interesting post. Recently looked up info on perjeta and on tdm1 due to this discussion. Discussed it with my onc today. In fact that's exactly what she said. Insurance companies are not likely to pay for it because the studies were done on it as a first line drug. Glad you're blazing trails and at least getting it for a while. I'm sure it's scary too...would be for me. Here's wishing you great results and minimal side effects!

bone, liver and brain mets Jill Dx 10/6/2009, Stage IV, mets Dx IDC, Stage IV, Grade 3, 0/8 nodes, mets, ER+/PR+, HER2-
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Jul 23, 2012 08:20PM sueopp wrote:

Thinking of you, Lily, and with you all the way.  Hope you are able to make it for the rest of the week - don't forget to take care of you.   SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jul 24, 2012 01:20PM Tiger_Blood wrote:

So great to see you outside the onc today. You were looking snazzy. Never seen the two nurses working there today and I know Paige is your favorite. Hope you are keeping yourself busy with the looooonnnngg drip. 

My wife has Tiger Blood. Winston Churchill: If you are going through hell, keep going Dx 3/7/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 24, 2012 08:37PM lilylady wrote:

7 hrs today in the chair-I was prepared with a huge bag of magazines, mail, snacks ect. Between waiting for the blood work and having to talk to the NP about SEs and then the nurse questioning me about why the didn;t order a  Muga or an Echo. The onc is on Vac so when I explained we talked about it and he has said he didn;t feel it was necessary unless I started being symtomatic and I totally agreed with this thinking. Both chemo nurses were subs from another office so they were wanting to make sure they didn;t drop the ball.

  Anyway so far so good. Have walked the dog and drinking tons of water to get this stuff moving. NP said the fight for approval was getting extremely ugly. She went to the informational meeting last week put on by the drug company and when she asked about third line chemo patients they shut her down immediately. There were a big group all after the same thing-they want the drug company to get in the fight for off-label use. he told them get in a trial otherwise right now they are not going to be involved.

  I hope today was not both my first and last tx. The waiting to see if the SEs are coming is little nerve wracking. It is going to be 95 tomorr so the factory will be sweltering-guess we will find out how tough it will be.

Lilylady Dx 2/18/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jul 25, 2012 03:31PM sueopp wrote:

Hey Lily, Thanks again for the updates, I watch every day to learn how you are doing and how the fight is going.  What have they told you are the possible side effects of the perjeta?  Best to you - SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+

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