Perjeta/Herceptin/Taxotere

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  • fujiimama
    fujiimama Member Posts: 800
    edited October 2012

    FMG that sucks!

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  • LoriKnous
    LoriKnous Member Posts: 80
    edited October 2012

    Hoping that somthing comes through for you FMG's.

    I know i'm kinda worried about having my first CT/bone scan since  I stopped my taxol. They should be calling soon to make an apt. for early Dec.  After reading so many post here I really have to read up on such a collection of meds. 

    I did meet with a surgon about removing my mets to the ovary. Looks like it's not gonna happen unless it's a life/death situation. Then they'll have to take the whole mass witch includes the bladder. Always seems to be complications of some sort in this battle. Over one hill, just to find a mountain around the bend.

    Just a note of information. Someone was just telling me about "Cold Caps". I looked it up and found out that this is used in Europe and just finding it's way here. The cap freezes the hair folicle so the chemo drugs aren't absorbed. This helps us not to loose our hair. Might be something to check into or even just pass on to others. 

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  • warriorprincess1971
    warriorprincess1971 Member Posts: 27
    edited October 2012

    FMG- sorry is such an inadequate word in the face of such a monster. My thoughts and positive energy I can muster, I send it your way. Too you and you family. You will know when you've had enough, it is your body and you say when you are done. And if it ever comes to that youre not giving up, you will be making an active choice enjoy the months, years you have. Always doing the right thing can be very stifling after a time. Sometimes it is freeing to so the opposite of what is expected, even if just for a short while. I hope you find peace and many blessings after all you have been through.



    You all move me in different ways. The strength shown her could...love you guys and have never met you.

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  • warriorprincess1971
    warriorprincess1971 Member Posts: 27
    edited October 2012

    Loriknous...they are using them somewhere in KY. No other info, I will look around. I personally think hair is overrated, men always have it right they have been wearing short hair for years.

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  • nicole0714
    nicole0714 Member Posts: 48
    edited October 2012

    Praying and thinking of you formygirls. TDM-1 is the supposed to be the biggest thing for breast ca since herceptin in 2000. Saw the "launch guy" yesterday, and said it will be out by January, at the latest....

    Compassionate use until then for you!

    Thinking of you...

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  • nicole0714
    nicole0714 Member Posts: 48
    edited October 2012

    Lori,

    Been using the cold caps. Never lost my hair....

    They are very cold and very labor-intensive, but they work.

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  • MichelleAM
    MichelleAM Member Posts: 12
    edited October 2012

    I just joined the boards today. I was diagnosed stage 4 with bone mets and was put on this combo. Unfortunately, I was misdiagnosed with mastitis (even though I haven't nursed in over a decade) and the tumor was essentially the size of my entire breast upon diagnosis. There was never a lump and it couldn't be seen on mammogram or ultrasound due to dense breast tissue. I had a dense breast tissue scan at mayo with 'no sign of disease' last month. Last Friday, I had a follow up PET and am in 'complete remission'. Now, I am on herceptin and perjeta...and I am supposed to possibly start bone meds in two weeks. I never had surgery because it already spread upon diagnosis. I am interested to hear how this combo has worked for others.

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  • fujiimama
    fujiimama Member Posts: 800
    edited October 2012

    I just graduated to doing just perjeta and herceptin. As of right now I'm considered NED, my CA27.29 was at 25. And since my scans before treatment were clean my M.O. has me back in the land of NED just praying I get to stay here for a long while.

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  • LoriKnous
    LoriKnous Member Posts: 80
    edited October 2012

    MichelleAM, Don't mean to scare you but, I want everyone to know that statistics are just a number and cancer has a mind of it's own. I'm not sure about your mets diagnosis but, I have to say that I would ask for checks and double checks.

    My first time around (5 years ago) I was told I had clear margins after my mast and 15 clear lymph nodes. Now they found mets to my ovary/bladder and so on. I now am told that "as big as the tumor was, we just figured it had gone into the nodes".........ie mets. Seriously, this was never mentioned to me 5 years ago. I even asked about having a historectomy to eliminate the possibilities and was told it wasn't nessasary. The only thing I can say is that I had chemo before my surgery and it most likely "masked" any positive cells that could have been found. I am ALL for second opinions especially if your tumor was so large and being Her2+

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  • kingcour
    kingcour Member Posts: 93
    edited October 2012

    Had tx 5 on Friday. So far, so good! I haven't really slowed down to experience any SE's! I don't want to jinx it, but this one seems to be easier. I sure hope so, because we are about to move! Purging and packing for a family of 6 while on chemo should be fun!



    Wishing great health to you all!

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  • MichelleAM
    MichelleAM Member Posts: 12
    edited October 2012

    @LoriKnous... Oh, it's all pretty scary and I will take all the advice I can get. Do you think I need another opinion?



    At this point, I've had three opinions. One from my local Omaha oncologist, one from a Lincoln oncologist and one from the Mayo Clinic. By the time I went to chemo, my tumor was huge. It doubled in size in a matter of a week. The bone scan showed two spots: one on the rib under my left breast and then on the posterior side. So, since it is in my bones, the assumption is that it went to my lymph nodes. Also, there were a couple other spots on the PET that showed Mets on bone... Neck, right pelvic. I haven't had any bone pain other than left rib prior to chemo.

    Although there have been several cases of breast cancer in my family on my dad's side, my brac1/2 tests came out negative.



    I understand what you are saying about chemo masking the cancer cells and them having a mind of their own. From what I've read about breast cancer...once you have it, you are likely to get ur again.



    I will be on perjeta and herceptin continually; just stopped taxotere and carboplatin on this round. My doctor is assessing the damage to my bones and going to decide what treatment makes sense. I sent updated scans to Mayo, too. I was told surgery was not an option for me because it was systemic and I can't afford healing time without treatment due to how fast my tumor grew. Grade 3, I think the said. It has been a crappy 6 months and I am happy to be alive. Dealing with it day by day.



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  • raccoony
    raccoony Member Posts: 72
    edited October 2012

    MichelleAM, this may sound crazy but i swear I've read that the more aggressive grade the tumor is, the better it responds to treatment? Anyone else heard this?

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  • MichelleAM
    MichelleAM Member Posts: 12
    edited October 2012

    I hadn't heard that about tumor grades. I am just hoping that the cancer doesn't rear its ugly head anytime soon... Well, just anytime really. I got engaged two months prior to my diagnosis and would like to get back to my regularly scheduled program.

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  • fujiimama
    fujiimama Member Posts: 800
    edited October 2012

    MichelleAM totally get the wanting to get back to the regularly scheduled program. Got there once and should be almost there again. Being on just the PH plan is helping already.

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  • gbensonmp
    gbensonmp Member Posts: 4
    edited November 2012

    Hi ,, I am from Philippines, our oncologist prescribed perjeta to my sister, but it is not available in Philippines... Can I buy it from USA or any other country? I m searching for it day & night,, pls help...

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  • gbensonmp
    gbensonmp Member Posts: 4
    edited November 2012

    Hi ,, I am from Philippines, our oncologist prescribed perjeta to my sister, but it is not available in Philippines... Can I buy it from USA or any other country? I m searching for it day & night,, pls help,, it is her last resort.

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  • gbensonmp
    gbensonmp Member Posts: 4
    edited November 2012

    Hi ,, I am from Philippines, our oncologist prescribed perjeta to my sister, but it is not available in Philippines... Can I buy it from USA or any other country? I m searching for it day & night,, pls help,, it is her last resort.

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2012

    gbensonmp, we don't know if this will help you outside the US, but check the Perjeta Access Solutions information from Genentech, the makers of Perjeta. They have programs to help patients pay for their medications, and may be a source of information for you and your sister too.

    • The Mods

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  • gbensonmp
    gbensonmp Member Posts: 4
    edited November 2012

    Thank u soo much for the link . But there also , company don't say anything bout patients from other countries. I have money ,, I can pay ,, I need medicine for my sister. A medicine should be useful for humanity ,, not only for a group of selected people. At least open the doors to people who are ready to pay for it.. I'm not asking any charity ,, I ll pay full amount . I need medicine for my sister. Can any one help? Please.... This is her last treatment option

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  • LoriKnous
    LoriKnous Member Posts: 80
    edited November 2012

    MichelleAM, Sorry I guess I hadn't realized you had plenty of opinions already. I too am on H/P and hope it does the trick. I go back in Dec. for ct and bone scan to see if their working. Until then it's infusions and gettin on with life. Just hopin' they've found our combo!

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  • MichelleAM
    MichelleAM Member Posts: 12
    edited November 2012

    LoriKnous, I pray it does the trick for you. I am only a little over a week out from my remission diagnosis and I am stressed/semi-obsessed with preventing recurrence. I think I need to go to yoga and chill somehow. Yet, happy that I am in remission for now.

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  • Shaysmom
    Shaysmom Member Posts: 25
    edited November 2012

    Finally have power so I can catch up.

    AIC glad you are out of hospital.

    FMG that stinks so much. I feel same way about TDM1 but I know people stable two years later, maybe there will be Another great Her 2 drug in 2 years.

    I maybe switching to TDM1 in late Nov.



    1st 21 day round of p/j/t have me one good day 3 ok days.One good day was my 10 year cancerversay of mets RX and 11 years with BC. So I got out for day with my son.



    Taxotere is the worst thing I've ever taken. We cut my dose back bc I'm malnourished and dehydrated on this.

    I did have less severe, pain and fevers. But had them. Had day and half of 10/10 pain.



    Like clock work one week after infusion and I was up all night 7pm-830am with the big D. That I can't be more than inches from bath room.

    I take so much Imodium and limo til but nothing slows it. Still bad nose bleeds. This diarrhea makes me miserable bc I have no quality of life. Scans in two weeks I think.



    I may need MRI developed strange jerks that can be sign of disease. Started when I started drug though .

    I prayed this round would be easier. Whoever mentioned gemzar that was a wonderful easy drug for me .



    I do have friend from another list who is about to start this.



    Kelly





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  • raccoony
    raccoony Member Posts: 72
    edited November 2012

    My mom had her third treatment today. Since she has started perjeta/herceptin/taxotere regimen, she hasn't had a day without diarrhea. The doctor switched her from immodium and lomotil to paregoric. I hope this will give her some relief. I suppose we'll find out if all the trouble is worth it when she gets her first set of scans in two weeks since beginning treatment

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  • sueopp
    sueopp Member Posts: 1,541
    edited November 2012

    I hope your mom gets some relief too, raccoony.  You are a great daughter, and I know your mom is so glad to have you on her side.   SUE

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  • raccoony
    raccoony Member Posts: 72
    edited November 2012

    Thank you, i have high hopes she can survive her cancer for a few years atleast.

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  • lilylady
    lilylady Member Posts: 1,079
    edited November 2012

    I get my last tx with the Taxotere on Tuesday. I will be so glad to get that crap behind me. Not looking forward to the next couple of weeks though. Just doing the P/H should be a breeze. Hoping to stay on that for a long long time. I have moved my scan that was Dec 21 to Jan. Decided I didn't need the stress at the holidays and what diffence does a couple of weeks make anyway.

      The drippy nose is making me absolutey nuts. Has anyone tried any OTC stuff that stops the nose but doesn't dry everything else out also?

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  • aic
    aic Member Posts: 417
    edited November 2012

    Congrats on the last tx....that is awesome!!! I will be halfway through after Monday.

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  • kingcour
    kingcour Member Posts: 93
    edited November 2012

    Lily lady- I have stayed on Claritin instead of just taking it at Neulasta time. It seems to have helped my taxotears and the drippy nose!

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  • fujiimama
    fujiimama Member Posts: 800
    edited November 2012

    Lily lady thanks for the tip. P/H its much easier. Still very sore, if I remember last time it took several months after rads to finish feeling loopy.

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  • sueopp
    sueopp Member Posts: 1,541
    edited November 2012

    Lily, I'm not taking your tx, but combo of herceptin and tykerb keeps my nose in a permanent drip.  The doctor recommended Allegra, and this works (some) without any nasty SE's.  Sometimes the small things can just drive us nuts!  Good luck - SUE

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