Perjeta/Herceptin/Taxotere

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  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited January 2013

    RonnieKay- Thanks. It's my favorite picture. Actually was taken when I was first diagnosed Stage IV in 2007. All my friends threw this huge party for me to let me know they were there for me. So far my side effects have been really tolerable, in comparison to some tx I have had. My doc thinks it is a good choice because I responded so well to Herceptin for so long.

  • aic
    aic Member Posts: 417
    edited January 2013

    Scan after 6 txs still am NED!!!!!!! Start on just p&h Monday. Looking forward to a break but nervous at the same time.

  • aic
    aic Member Posts: 417
    edited January 2013

    Lori, did you have liver mets from the start in 07?

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited January 2013

    i've never had nueropathy with this cocktail.  I had it when I was on Halaven, but so far, so good on this one.

  • hope4acure
    hope4acure Member Posts: 29
    edited January 2013

    It is really nice to find this forum. I begin treatment with Perjeta/Herceptin/Taxotere tomorrow. I was wondering how everyone did after a loading dose treatment? 

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited January 2013

    AIC, I had mets only in lungs when I wa first diagnosed. September last year was the first time there was any mets outside of my lungs. They picked up a 7mm liver met on my PET, among other new hot spots. 8 weeks later it was 16mm. I had been stable for so long that when things started spreading it felt like getting the Stage IV diagnoses all over again. Your post makes me so optimistic!

    Regarding neuropathy, my doc has me taking 50 mg B6 daily and 10grams glutemine powder 3 times a day. I am doing that, so we shall see.

    This is day 4 from my tx and my joints ache like crazy! I am not even sure it is joints. I think it is my bones in general.

    All in all, nothing I won't be able to tolerate. Tomorrow night will be my first time back to work since I started treatment Monday. Wish me luck.

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited January 2013

    My onc did prescribe Lyrica for my neuropathy when I was on Halaven. It did help with the numbness.

  • hope4acure
    hope4acure Member Posts: 29
    edited January 2013

    I can honestly say Lyrica has been the best thing for neuropathy that I have taken. Can be expensive so check with your insurance.

  • aic
    aic Member Posts: 417
    edited January 2013

    Lori, that is wonderful that you were stable for so long. Hopefully this combo will do the trick! Good luck back at work! I found I missed 4 days during the week of treatment but have been able to keep a normal work schedule outside of that.

  • pearlady
    pearlady Member Posts: 882
    edited January 2013

    AIC such great news.  So happy for you.  It is also inspiring for all of us.

    Lorijo best of luck to you going back to work.  The fact that you were stable for so long is great and there's a good chance on his new treatment along with the upcoming TDM1 you will reach that point again.

    I was at my onc yesterday for my usual Herceptin/Perjeta.  The nurse advised that the drug comany reps are coming next week to discuss TDM1.  My onc says it is scheduled to be approved in Mid February and they should have by early March.  Now that is really exciting news in that although this combo plus the afinitor has kept me stable, my onc is hoping for major regression with the TDM1.  I'm hoping this will help all of us, with suppossidly minimal side effects.  Prayers for all!

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited January 2013

    Good luck with your treatment today, hope4cure. I've done OK after the loading dose treatment. Dry mucus membranes, aching bones/joints and fatigue are the worst of my complaints, so not too bad. I didn't need any nausea meds, either. I think I will be able to tolerate this one alright.

    Let me know how things go. Our start dates are almost the same.

  • Bondgirl
    Bondgirl Member Posts: 140
    edited January 2013

    Hi ladies. After 3 treatments total response in my liver! My solitary lesion disappeared! The lungs are a bit of an unknown since the mets did not actually show on lasts scans. Probably due to severe infection and inflammation at that time. So radiologist is calling it progression in lungs. Oncologist and pulmonologist at MDA a bit more positive in saying no way to know whether this is really progression. Tumor markers did not change much which is a little of a bummer as mine are reliable. But I'll take a clean liver and pray that 3 more rounds with the taxotere will be a success!

  • hope4acure
    hope4acure Member Posts: 29
    edited January 2013

    Well today didn't go as planned because my brain MRI came back with very bad news.My mri showed three lesions in total. So today we only did the perjeta/herceptin till i see my radiation oncologist and my neurologist next week then we will add taxotere. 

  • Logtown
    Logtown Member Posts: 2
    edited January 2013

    Hello. I am new to this site and posted under newly diagnosed. It was suggested I post to this forum. I am 51 years old and was diagnosed on Dec 14th with stage IV breast cancer with mets to brain, spinal cord, bone and lung cells. I spent two and 1/2 weeks in the hospital and received my first chemo combination while there. I am on Taxotere, Perjeta and Herceptin. I had a bad reaction as the Herceptin was running in and spiked a fever and went into rigors. They stopped the infusion, loaded me up with Benadryl and then proceeded to infuse at a much slower pace. My second treatment was January 21st and I tolerated it well. It took seven hours! I am not sure what drug is causing my side effects. My skin is beat red, especially my face. My hair fell out in about ten days. About day four i get stomach cramps and diarreah but the lomotil helps. I also got radiation on my brain and spinal cord so unsure if some of the side effects are related to that.

    I have rheumatoid arthritis and kept telling myself that my symptoms were due to that. The diagnosis of stage IV breast cancer came as a total surprise. I had a fractured disc in my cervical region and got a kypoplasty surgery while in the hospital. It really helped that pain! My oncologist gave me the name of the company that makes Perjeta and Herceptin. If you have not already done so call them. They are paying a lot of money towards my co-pay. The name is Genentech inc. 888-249-4918. Just tell them you need assistance with paying for these meds. They are very helpful.

    I am glad to have found this site. I think it will be very beneficial. Wendy

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited January 2013

    Hope4acure...I'm sending my hope & prayers to you...be strong, friend. 

    AIC...so happy that your scan was good.  I was wondering how you've had just 6 treatments since Sept?  I'm having treatment w/navelbine, perjeta & herceptin every week.  Have had 3 treatments w/n & h but had my first perjeta on Friday.  It seems to have made me pretty tired.  Was so glad to finally have it approved. Good luck on having just h/p combo...hope it keeps you NED forever!  Do you have liver mets?  That's the beast I'm going to beat!

    Logtown...I had the same reaction to the herceptin loading dose...surprised everyone because I had it for a year 09-10.  They said they rarely see reaction when you've had it before.  They stopped it, added benadryl and continued.  They've given me a benadryl tablet both times since but may not next time. Wondering why they don't just continue.  Don't want it to happen again.  You're dealing with a lot and I hope the ses calm down soon. 

    Bondgirl...what great news!  Will continue to pray liver stays clean.  I have to tell you that my friend was given the diagnosis of lung cancer w/scans, etc.  They went in surgically to biopsy and it turned out it was infection...completely!  I'm hoping the same for you. 

    Pearl..please tell me what TDM1 is.  I've seen it mentioned before. 

    Lorijo...Hope that work went well for you!

    Wishing all a restful Sunday tomorrow.  May go to Mariner Fan Fest with the grandsons tomorrow....Go M's!!!

  • fujiimama
    fujiimama Member Posts: 800
    edited January 2013

    Wow aic and bond girl love the good news. My MRI was of my cervical spine came back clean. Bulging discs in C3-C7 none are herniated, just protruding enough to cause pain. I went to my PT that I saw after my bmx and she made my neck and hands feel so much better. My neuropathy and headaches are from my neck being out of wack. Silly me, I'm excited it's just a normal back problem. I have my bone scan and CT on Tuesday. Poor DH has to deal with another few days of a crazy me.

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited January 2013

    Fujii...yeah for a clean spin & hoping for the same w/bones!  Sometimes I wonder how much my DH can take...can feel for yours too!

    Just an fyi...how do you add your comments under diagnosis...ie, where mets are located, etc????

    ALSO...My center does mostly ct/mri.  Only if they're not sure of what they're seeing do they do PET scans.  Does anyone else have this protocol?  Just wondering....like I don't have enough to wonder about...LOL!

  • fujiimama
    fujiimama Member Posts: 800
    edited January 2013

    Ronniekay don't quite remember how I added comment. Silly chemo brain. My Onc. office is in Spokane and they tend to prefer CT as well. Lower radiation exposure is what I was told. My Once. only does PET if he thinks I'm on fire. So far the two PET scans I've had were pretty useless.

  • hope4acure
    hope4acure Member Posts: 29
    edited January 2013

    Thanks everyone for your thoughts and prayers. Day three after perjeta/herceptin and the fatigue is horrible. But let me say folks the diarreha is no joke.

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited January 2013

    I worked Friday and did OK. The fatigue has lightened up (I'm on day 7 after treatment) but my bones still ache. All in all, it is not as bad as I was preparing myself for so i am actually pretty happy. The chemo brain the first 5 days was awful, though!

    In regards to PET vs CT, my doc runs PET on me because the CT isn't showing enough. My understanding is that a CT picks up masses and the PET can show cancerous activity before a mass is formed. It also shows activity in lymph nodes.

    Logtown, I was also really flushed for the first 4 days. I also had a lot of water retention. That ended last night. I must've got up every half an hour to pee, lol. I feel fairly normal today.

    Everyone have a great weekend!

  • Bondgirl
    Bondgirl Member Posts: 140
    edited January 2013

    Glad to hear many of you who just started are managing so well with side effects. As I have posted all over the place since Friday (sorry if you all are getting sick of me!), after 3 rounds my liver met is gone but lung mets still present in pleura. Because previous scans inconclusive on my lung mets we really don't know if they are progressing or not. To add to the stress, my CT report notes numerous sclerotic lesion in spine likely mets. However, my oncologist did not even mention this. Got the report after the appt. I've already emailed so I expect response on Monday since its MDA. The crazy part is the radiologist who read this scan noted there was one previous lesion in my spine from October scan. However, I have read those scans over and over including the October bone scan and it clearly states nothing in bones. WTF? My onco must be concerned bc he scheduled bone scan for after my 6th round (end of March) but why didn't he discuss and why conflicting info in radiology reports. i just expect more from MDA. I'm driving myself mad wondering if this treatment is working. What do you do if you have response is some areas (ie liver) but progression in others? Ugh....I hate all this uncertainty. I see my local onco on the 6th and will also discuss with her. Thanks for listening to the vent!

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited January 2013

    Bondgirl...you gotta vent somewhere & this is the place.  Hope you get some answers as to what's up with your spine. I think it's much easier when you know what you're facing..and I know in our situation, it's clear as mud much of the time.  Remember your liver is clear...maybe the rest of your body will follow!  Always hoping and praying for NED for all of us!  Hope you hear soon from MDA.

    Thanks for scoop on ct/mri vs PET...and Fujii...I grew up close to Spokane & we still have the family home there.  Remember a great restaurant in Post Falls!   No play time for me after load dose of perjeta...the tireds got me 2 days later.  Since navelbine constipates & perjeta causes diarrhea, I decided not to take a softener, mistake.  Better this afternoon.  

  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited January 2013

    Halaven gave me mixed reviews. My current liver lesions were shrinking and my bone mets were stage. But, I had a new crop of lesions appear so they switched chemos. My TM and liver enzymes had been going up. Now I'm here on this board.



    It is true, the treatments do get better around 5 or 6. I started taking the taxotere weekly instead of 1/3 weeks. But, I still clear out 6 days later. (It's just the right balance to my constipation.)

  • aic
    aic Member Posts: 417
    edited January 2013

    RonnieKay, I get tx every three weeks. I got all drugs/antibodies on that same schedule. Fujiimama, hope Tuesday gets here soon for you. Waiting is madness. Bond girl, vent away! I would be going nuts too with all that. Hope you get some answers soon. Thank you all for the kind news regarding my scan news! Just p&h tomorrow and I'm nervous. Go figure!

  • bhd1
    bhd1 Member Posts: 3,874
    edited January 2013

    Do u think once tdm1 is approved some of us might be on a combo of tdm1 and perjeta?

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited January 2013

    Barb, I believe that TDM1 is almost the same as the perjeta/herceptin/taxotere combo. What is different is that they have fused the taxotere directly to the targeted therapy drug, thereby delivering it directly to the cancer cells instead of it flowing widespread throughout the body.

  • redwolf8812
    redwolf8812 Member Posts: 2,463
    edited January 2013

    To those of you who are on this treatment and it's not first-line, can you tell me how long you waited for your insurance to approve it?  I've been waiting almost 3 weeks now for the oncologist to be able to convince the insurance company to pay for it.  Thanks for any advice you can give.

    - Penny

  • bhd1
    bhd1 Member Posts: 3,874
    edited January 2013

    lori i do  not think tdm 1  has taxotere in it.  or am i wrong?

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited January 2013

    You are right. Not taxotere but a similar chemotherapy drug called dm1. It was described to me as similar to what I am on only the chemo drug is bonded to the targeted drugs. Hence it is delivered only to the cancer cells.

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited January 2013

    Penny, my insurance didn't even fight it at all. I was approved on the first request. My doctor told me a lot of insurance companies automatically deny it but, ultimately, it is usually approved on appeal. I would assume it is a matter of the usual paperwork b.s. I would think you would hear something real soon.

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