Perjeta/Herceptin/Taxotere

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  • Trish03
    Trish03 Member Posts: 292
    edited August 2013

    Hi, Suniday/Debbie, and welcome,

    I am also a newby to the Stage IV forum. I was dx with liver mets the end of May, 10 years after my original dx. I've had 3 cycles of P/H/T so far, and the side effects haven't been bad. The good news is that last week my onc told me that my liver enzymes are way down and within the normal range now. I have scans in 2 weeks, and I hope that translates into a good report. I was having quite a bit of pain before I started treatment, and it's all gone now and has been since soon after the first treatment.

    I'm also curious about the Neulasta. I had it with my chemo 10 years ago because I had dose dense, every two weeks. This time it isn't necessary because my blood count returns to normal by the time the next treatment comes. At the end of 1 week, it's very low; at 2 weeks it's better; and by 3 weeks it's back to normal.

    I hope the treatment works well for you with very few se's. I'm sorry to hear about your mother. Wow, back after 24 years is tough!

    Hugs, Trish

  • kingcour
    kingcour Member Posts: 93
    edited August 2013

    Claritin worked wonders for me with Neulasta! Be sure and take it the day before the shot, of the shot, and two days after!

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

    Has anyone reduced taxotere. By how much? .did it make a difference? In what way? Thx

  • lalenlou
    lalenlou Member Posts: 25
    edited August 2013

    I had 6 doses of T/P/H.  The taxotere was horrible and it was so nice when I was done with it.  I now take the Arimidex pill instead.  I still get the Perjeta/Herceptin cocktail every 3 weeks and have very little side effects from them.

  • Trish03
    Trish03 Member Posts: 292
    edited August 2013

    Lalenlou, it's great that you were able to go off Taxotere. I'm hoping to do the same after 3 more treatments, but when I asked my onc about it, he didn't give me a definite answer.

    I have a couple of questions for you: When you went off it, had you reached NED? Also, do you have problems with diarrhea when just on Perjeta and Herceptin? That has been my worst se on this drug combination, and my life would be totally different if I could get rid of that.

    Thanks, Trish

  • CarlaK
    CarlaK Member Posts: 158
    edited August 2013

    Hello and an update: I've now been off the tax for 6 weeks and had 2 rounds of herceptin/perjeta alone. Sooo much better! I have a bit of fatigue and achiness the day of and the day after but nothing like the horrible week after taxotere. Trish, I was worried about the diarrhea thing but it only hits me about 1-2 days per round, so I'm lucky. I'm definitely not NED yet but maybe you will be by the time you're done with your 6 rounds.

    I'm one week post mastectomy now...my docs are continuing to encourage an aggressive program since I am "oligometastatic" with just lung mets. Will get my path Monday and probably go on to rads, while staying on herceptin/perjeta as long as nothing new crops up. Fingers crossed!

  • Trish03
    Trish03 Member Posts: 292
    edited August 2013

    Carla, it's wonderful to hear that you're doing better after dropping the taxotere. I really hope my onc lets me do that after 3 more treatments. My scans earlier this week showed 30-40% decrease in the size of the tumors in my liver, so that's very encouraging. 

    I hope you're having an easy recovery from your mastectomy. What does "oligometastic" mean? I'm not familiar with that term. I hope rads goes well for you and that you remain stable on H/P only.

    Hugs, Trish

  • CarlaK
    CarlaK Member Posts: 158
    edited August 2013

    It means the mets are isolated to one organ (bone, lung or liver for example) and fewer than 5 spots in that organ. The thought is that maybe people with really limited mets could be in prolonged remission (or cured?) if treated aggressively in other words all the typical treatments for Stage 3 plus removing the mets with surgery or stereotactic radiation.

    It's a controversial idea, not all oncologists believe it. I'm probably less optimistic than my onc, only because I'm trying to shield myself from disappointment. But I'm going through with all this stuff anyway, just in case I get to be the lucky one who beats the odds...

  • Trish03
    Trish03 Member Posts: 292
    edited August 2013

    Carla, thank you for your explanation. Your treatment certainly sounds interesting. It sounds as though your onc is very progressive and not afraid to try new things. I hope that the plan works wonders for you. Prolonged remission sounds wonderful!!!!

    Hugs, Trish

  • fujiimama
    fujiimama Member Posts: 800
    edited August 2013

    CarlaK I'm oliglomestatic too. I had a single tumor to my T11. I had a fairly agressive treatment. In October I will hit one year of being on p/h only. I've been NED the entire time. My tumor was surgically removed, 23 rads, 2 p/h/t, ph every 21 days. I tried femera and had to stop. I also get xgiva. I hope you get to the lasting remission too. I aslo tend to be hesitant, but it's working.

  • CarlaK
    CarlaK Member Posts: 158
    edited August 2013

    Fujimama-hooray for a year of NED! That's great to hear. I would love to stay on p/h for awhile....I just got my mastectomy path report, apparently the taxotere wasn't all that kick ass. Still with 3 positive axillary nodes, and some invasion of the pec muscle...for how crappy I felt on it, I was expecting complete obliteration!

    So on to rads for me...if my lung mets behave over the next 6 months, then we'll be talking about surgically removing them. Weird to be rooting for a chance to do major surgery-ouch!

  • inazc
    inazc Member Posts: 1
    edited August 2013

    Thank you for your sharing with your experience on Perjeta/Herceptin/Taxotere.

    Can I share a coupon for Perjeta  http://www.manufacturerdrugcoupons.com/perjeta-coupon/

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

    I get a burning warm itchy feeling in the affected breast after tph. Anyone know about this. !

  • Suniday
    Suniday Member Posts: 4
    edited August 2013

    Had my 2nd treatment (of 6) of PHT last friday, and must say that the se's are somewhat milder, although this time I do have the dreaded diahrea issues that I have heard some of you mention.  My Onc decided not to give me the Neulasta shot after this one due to my extreme painful reaction to it the first time.  My blood counts were pretty low on Tues. after the chemo, but I am hoping next week they will show some improvement:) 

    bhd1- funny that you mentioned the sensation in the breast after pht, I noticed a definite "twinge" in my breast during the Perjeta and Taxotere injections during my first treatment. I did not notice it during the 2nd round.  I mentioned it to my Onc, and he gave me a big smile and said he felt that meant it was targeting the right area.  I hope he's right!

    Can someone please tell me what NED stands for?


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

    Ned is no evidence of disease. I have never had neulasta. Do many peo on pht take it?

  • Kjones13
    Kjones13 Member Posts: 1,520
    edited August 2013

    I think...neulasta and neupogen are similar...and they are for any patient with low white blood counts. Somehow they stimulate the bone marrow to produce more, faster? I could have that all wrong and i will blame it on chemo brain :)

  • Trish_is_me
    Trish_is_me Member Posts: 8
    edited September 2013

    Hi,  I am also newly diagnosed stage IV with liver mets (8), numerous mets to both lungs and mets to tons of bones. Literally skull to feet. I am going in for my 3d chemo treatment of Perjeta, Taxotere and Herceptin. The first one kicked my butt pretty bad. Sores in my mouth, thrush, Diarreah, vomiting. My tumor markers were 2400.2 before the first tx and after they dropped to 1200.1 so they dropped by half... But my tumor markers are still very high. The second tx landed me in the hospital for the weekend. My WBC dropped to ZERO... had neutropenia which was totally not fun. Was pumped full of fluids and 3 different types of antibiotics and then sent home with 2 more antibiotics. So I am hoping to get a little better reaction to this next round of tx on Thursday. I am really hoping to get back to NED. Hope I am not wishing too much out of the possibilities. Any advice would be greatly appreciated. I will say this... I had the worse case of thrush after the first tx and then someone told me to eat ice chips during the actual infusion and my tongue would not be able to absorb so much of them chemo... I will try anthing once. I tried it the next round and it totally WORKED!!!! no thrush at all. Here's to ALL of us looking for NED!!!! :-)

  • fujiimama
    fujiimama Member Posts: 800
    edited September 2013

    Hi Trish,

    PHT is quite the kicker. Wow on getting your tumor markers in half. How many treatments are planned? Taxotere is most likely to be the one killing your wbc. It's hard on everybody. Neulasta or nuprogen shots can help. At this point in the game it becomes a love hate relationship. This is an amazing group of women. Each of us is very different. I have been on the NED end for almost a year, but I only had one met on my spine. For me perjeta is the one, my met was growing while I was on herceptin only. I tell everyone because we all need hope that it is possible. Even my MO isn't sure what to expect from me. We are in a group that is forging a new path.

    Shaunna

  • Trish_is_me
    Trish_is_me Member Posts: 8
    edited September 2013

    Hi Fujiimama ... Glad to see you are NED Smile I had been getting regular scans by my Onc and never went more than 3 months in between visits... I had a clear scan in February 2013... and In May/June started having some serious stomach issues with losing weight, no appetite, terrile heart burn. I had seen my primary Dr. whom thought I had an ulcer. Had an EGD and found nothing other than a severly inflammed stomach, by this time it was time for my usual follow up with my Onc who said my liver enzymes were high and he sent me in for a CT-scan of chest and abdomen. Voila it showed the liver and lung mets which then started the ball rolling for the typical Pet/bone/brain scans and they found all the bone mets. Thats the cause of most of my pain now. After the first round of chemo I could feel changes in my liver because I no longer had the heartburn and stuff. But its crazy how all this happened in the time of about 2-3 months. EEEEK!!!! I did have neupogen injections the first time I did chemo in 2007 I did Carboplatin/Taxol?herceptin. But this time my Onc didn't give me the injections, however once I was in the hospital they gave me 2 injections and then my WBC went way too high. But they leveled out within a few days. We will see how this next chemo does. I don't know how long I will be on this tx, my once says I will be doing some kind of treatment the rest of my life.  I usually hang out in the YSC facebook groups... on my iphone but I just got started on here and this seems to be much more officially informative... some of the facebook stuff can be catty and some what or a more "social" place. 

  • BethCon1
    BethCon1 Member Posts: 132
    edited September 2013

    Hello, I'm new to the group. I was just rediagnosed as stage 4 with mets to the liver and spine. I'll be getting radiation to the spine first and then herceptin/pertuzumab/taxotere. From the way they made it sound I will be on it indefinitely. Does everyone lose their hair on this combo? I was almost done with all of this, October was supposed to be my last herceptin, I was supposed to be ok, grow old with my husband and be able to watch my children grow up. I feel cheated and angry lately. The rest of my life I will be bald and sick? Ugh.

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

    I am sorry u have to join us a d at such a young age. You will loose your hair in this tx. Get a pretty wig. Inhope you will find lots of support and help on this board. Of you have any questions about thp let us know

  • kingcour
    kingcour Member Posts: 93
    edited September 2013

    I am leaving you girls for Kadcyla because of brain mets. Not what I wanted to hear, and came about so quickly, but I am in great hands and my doctors are very optimistic. I am very tired and have to wean off of steroids, but he says I should feel "normal" (haha) by the middle of October. Praying for that to be true! I will keep up with you guys here and thank you for your tips and support!

  • JillThut
    JillThut Member Posts: 1,470
    edited September 2013

    Sorry about the brain mets, Kingcour. I have also joined the kadcyla camp as of two weeks ago. So far..side effect wise I'm just loving it. Haven't felt this good in months. I also have brain mets since 12/2011 albeit few and small ones. I've had two gamma knife procedures and zero symptoms from the brain mets thus far.



    Not good news for you no matter how you slice it. But hope you get off as easy as I have thus far or even better. And I hope you have lots of healthy happy days on the kadcyla.

  • kingcour
    kingcour Member Posts: 93
    edited September 2013

    Thank you! That news is very promising! My docs are awesome! They have high hopes! :)

  • Trish03
    Trish03 Member Posts: 292
    edited September 2013

    Beth, I'm very sorry that you have to join this group, but I know that you will find a lot of support here. At the end of May, I was also diagnosed with liver mets. The good new is that after 3 cycles of P/H/T, my tumors have shrunk by 30-40%. My onc was really pleased with the response. I feel very good most of the time and am able to do pretty much whatever I want. I hope that you have great results with this chemo combination and that you'll be able to enjoy your children for many, many years. I know it's overwhelming right now, but know that lots of women live for a long time with liver mets.

    Hugs, Trish

  • Trish03
    Trish03 Member Posts: 292
    edited September 2013

    Kingcour, I'm sorry to hear about the brain mets. I know that must have been a terrible shock. I hope that you have a great response on the Kadcyla and that you don't have any bad se's. 

    Hugs, Trish

  • BethCon1
    BethCon1 Member Posts: 132
    edited September 2013

    Kadcycla is supposed to be fantastic for mets. I hope it works well for you. I am unsure about what chemo I will be getting now. My original cancer was triple positive, after a spine biopsy it came back that its only estrogen positive. I had a liver biopsy today to see if that is also only estrogen positive. I'm not sure if that will change things...

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

    Kingcour I am so sorry about the brain mets but glad the docs are optimistic. I wish you the very best if luck in kadacia. Keep in touch. We care

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

    Kingcour what is the plan for treating the brain mets?

  • Trish_is_me
    Trish_is_me Member Posts: 8
    edited September 2013

    Hi Ladies, I have had an interesting few days. I had my third treatment with P/H/Taxotere on Thursday and My Onc decided to drop the the Taxotere by 20%... Because of the neutropenic fever that keeps hitting me and also have now become severly anemic :-( He said next treatment I will start blood transfusions. He also gave me my official Prognosis.... 6 months or less if I stop the chemo...and 2-3 years with chemo. This makes me very sad. He said on average we get about 6 months out of a chemo and that we will keep trying one after the other until we have exausted all chemo options and I pass away. WHAT???? and he said I can only have 3 more treatments of the Taxotere, so after that 3d one if I am stable he will give me a little break and then switch me to that TDM-1 stuff and keep me on Perjeta/Herceptin.... and see what that combo does for me. I am a little confused as after the first treatment my tumor markers dropped by half.. they were 2400.2 and dropped to 1300.1. Does this makes sense to you? I know that like 70% of my bones are covered with mets and I have 8 liver mets and enumral lungs mets in each lunch but those are so small they are giving me ZERO problems at this point. I am really trying to get pass this sadness but finding it very hard. I am 38 years old, with an 8 year old and 2- 15 year olds... and of course my lovely hubby. Any suggestions, thoughts or ideas????

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