8 Rounds of Taxotere, Perjeta, Herceptin? Or not?

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rosetide
rosetide Member Posts: 29
edited April 2017 in Stage IV/Metastatic Breast Cancer ONLY

Hi ladies,

I have had 7 treatments of the 3 and my oncologist wants me to keep going as long as I can handle the side effects. Has anyone had this treatment and did more than 6 rounds? How many did you do? How were your side effects? Did it give you a better result in the long run? I know lots of questions, please answer any that you can, I am beating my head over here trying to decide if I should continue or stop the taxotere, I am uncertain if I am going to be setting myself up for failure with my decision. Thank you for any help in this matter!


Rosetide:)

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  • kwagart
    kwagart Member Posts: 77
    edited August 2016

    Hi Rosetide,

    I did six rounds of taxotere and then continued on h&p. I finished taxotere 3/15 and had good scans for a year, however My tumor markers started slowly inching up after about 9 months and went above normal in June 2016. I had a pet scan in July and some of my bone mets were showing activity. My second opinion doctor said that the decision to drop taxotere after six rounds was arbitrary in the cleopatra trial and he keeps women on it until progression or until they are not able to tolerate side effects. I decided to go back on taxotere to get the most mileage out of my first line treatment (he didsay taht I could choose to go to the next line). The doctor said that breaks and dosage adjustments can help manage long term use. That being said, many women do well with h&p alone or with a hormonal. I think that I would discuss options for revisiting taxotere if h&p alone do not seem to be getting the job done. I have had two doses of taxotere since restarting, we dropped femara and I think that the joint pain from that was worse than the chemo side effects for me!

    Good luck with whatever you choose,

    Kim

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  • rosetide
    rosetide Member Posts: 29
    edited August 2016

    Hi Kim,

    Thank you for taking the time to respond. Wow! That is alot of useful information. I am going to do one more of the taxotere and that will be 8 in total. I feel that the taxotere is doing a big job with keeping this at bay right now. When I began it was bad, really bad, and after a few treatments it was like a miracle! I could breath, I could take deep breaths. Real air was moving in my lungs not wispy gurgly moist air. The major side effect I have is being tired. I am just so tired. I get spurges of energy but they don't last. I get winded quickly. I need to move more I know but it makes me feel sick. I try to stay still from getting sick then it doesn't allow me to move as much as I should. I eat alot, healthy food. My weight is steady. My bloodwork is great. Mentally though I am checking out of this a bit, I am tired. I am mentally tired. I need a break. The thought of going back in there Friday and having them hook me up again is a nightmare. I will do it. I have no pain. I feel fine except for constant fatigue nausea. I keep it under control with promethazine. I just need to toughen up do one more call it a break, and then see what happens with the HnP pretty much what you have explained and I was picturing the results of excaclty what happened to you from what I gathered from my doc. He wants me to keep pushing forward because he knows that is the heavy hitter. I am just tired. Hope I can do this lol! I have alot more to go, who thought that the very thing I disliked the most in my life would be the thing that I would have to do to keep me alive lol! God has a sense of humor! For sure! lol! I appreciate you taking the time to respond, I will let you know what I decide. God willing I make it to next Friday! lol! Wishing you good health!

    Positive thoughts,

    Rosetide:)

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited August 2016

    Dear Rosetide: I made it through 7 of of taxotere and H&P. I was willing to go for one more taxoterrible but my onco felt like enough was enough. My blood counts had remained stable throughout, but I did develop neuropathy in feet and fingers, and extreme fatigue. I'm still on H & P as a lifer. Sounds like you are doing well compared to many on the taxotere. Best of luck to you

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  • kwagart
    kwagart Member Posts: 77
    edited August 2016

    Rosetide,

    You're welcome and I hope that you do awesome on h&p!

    Kim

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited August 2016

    Asking you to continue on this regiment is really tough. I only did six rounds back in 2008 just Taxotere, Carboplatin and Herceptin and it was all I could do to finish six. Have they scanned you to see if you have had a good response? I was so luckily to have had a total response after three cycles (liver and bones) and Herceptin only now has held me there since then. Taxotere is the devil though. I can appreciate your fatigue and sick feeling. Sure seems like a break is in order after your 8th cycles. Seems like most people who are on a chemo longer than this are doing Taxol or even Abraxane and not something so strong.

    Jennifer

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  • rosetide
    rosetide Member Posts: 29
    edited August 2016

    Hi Beatmon,

    Thanx for responding and sharing your situation. That is very positive to hear that you are on HnP and it is working well for you, I am very happy to hear that and for you! It is Sunday, I am still having the bathroom woes from the last treatment and I have to go back in 5 days for another hit lol! It seems to all melt together now. It is reassuring to hear that I am doing "well" to what I could be experiencing lol! This is all some nasty stuff but it is keeping me alive so that is the crazy part lol! Here is to one more of the taxoterrible, that is perfectly put lol!, hoping it does it's job:)

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  • rosetide
    rosetide Member Posts: 29
    edited August 2016

    Hi Jennifer,

    Thank you for responding and sharing your story. I have not had a scan done yet since starting this treatment. My onco said because my bloodwork is great and my physical appearance and overall health is really good. I know he wants to do one now after this treatment to see where we are. He had said that no matter what the results showed we would continue with the tax,hnp regimen? He tells me since I am 42 years old that I should be able to handle more of the tough stuff, he always brings up that he has patients that are in their 60's and 70's that have done this treatment it should be a breeze for me lol! He also knows the first treatment regimen I had was that for Incredible Hulk not a woman! lol! I have yet to meet another person that had my treatment from my first diagnosis. I was treated at MD Anderson in Houston, and that treatment was a doozy! 12 weeks of taxol once a week then 12 weeks of Flourcil, Adriamicin(RED DEVIL) and Chlroymidide?? AND a booster on the 3rd day of Adriamicin! You talk about feeling like your dying! lol! And I was between stage 1 to stage 2! So my onco looks at that and thinks I can handle all this I guess lol! I think what is getting the better of me is the mental game. I have to get my game face on, and it has been tough this time. Stage 4 and hearing you will be in treatment indef is big words to swallow lol! Esp since chemo is literally what I imagine hell to be, a whole bunch of chairs with people hooked up to chemo for all eternity!lol! YIKES! It is a nightmare. But it is doable. That is so reassuring to hear that you are sustained with just herceptin! WOW! That is fantastic to hear! So happy for you! I am going to ask my doc about the meds you mentioned. Have a great day!

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  • jen76
    jen76 Member Posts: 14
    edited August 2016

    I did 9. The last one was rough but worth it. It brought me to Ned. Keep going if you ca

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited August 2016

    The Cleopatra study reported up to 8 rounds of Taxotere. When your oncologist says for as long as you can tolerate it, then you need to watch for symptoms of peripheral neuropathy. If you develop neuropathy on Taxotere, the hope is that it will get better or go away after you stop the drug, but that isn't always the case. I have peripheral neuropathy and have been off of Taxotere for 18 months. The damage from the Taxotere is permanent. If you don't stop the Taxotere soon enough, you could end up with the type of damage that impacts the quality of your life and limits your mobility and ability to walk and do simple things like type on a keyboard, or button your clothes.

    I don't mean to frighten you, but there was a story on Dateline about an oncologist in Michigan who was giving high doses of chemotherapy to patients without cancer. Many of them developed peripheral neuropathy that greatly reduced the quality of their lives. Instead of stopping the drugs, he would keep them on the drugs, while their symptoms got worse and worse. It was very sad to watch the damage that was done to these people by a greedy doctor who was administering these drugs so he could bill Medicare and the insurance companies. Eventually that oncologist was charged with murder and sentenced to prison.

    So I wouldn't say to stop the drug, but you need to be cautious if you go beyond 8 doses. And speak up and squawk if you develop any unusual sensations in your fingers and toes.

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  • rosetide
    rosetide Member Posts: 29
    edited August 2016

    Jen76,

    Thanx for your responce, you are the ONLY person that I have read or heard from that did more than 7! So I am going to stick to the plan and do 8. In a weird way I am getting use to it lol! I am going to guess that your younger? I am 42. My doc says since I am younger I should easily handle several of these rounds lol! LOVE how they speak so freely about something that they have never experinced lol!

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  • rosetide
    rosetide Member Posts: 29
    edited August 2016

    Pwilmarth,

    Hi, thanx for your responce! I did see that show, what a nightmare! Forunately I have not had any symptoms such as those. I have a funny stomach and am tired at any given moment just out of nowhere. Beings that I have been a super hyper person my whole life, I could never handle caffiene I would bounce off the walls lol!, now being LOWKEY like a sloth is some getting use to...but I am starting to get use to my new norm. If these are the things I have to endure to stay alive and with my family it really isn't bad, not bad at all lol! Hoping for good health and positive results for you!

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited August 2016

    Rosetide

    Although I can't tell you if this is totally true, but I have heard several times that older patients can actually do better with the strong chemos and it is the younger ones that have more trouble with it. While you are young and you do want to be able to hit it hard.. you also want to be able to live a long life and not have the chemo disable or kill you either. It is a delicate dance between controlling the cancer and having quality of life. You have certainly been through some difficult treatment plans. The HER2 targeted drugs are very good at maintaining if you respond well and they can do this alone. Good luck to you. We don't all call it Taxoterrible for nothing.

    Jennifer

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  • rosetide
    rosetide Member Posts: 29
    edited August 2016

    Jennifer,

    I agree 100%. That is where I am on the fence. My onc is like let's do 10 or 11 you should be able to handle it. He is also I think going off my rigourous treatment from the first dx, which I was clueless, I trusted my doctors and they really ran with it. Granted I was clear for 8 years till this came in full swing lol! I would like to find a happy place where I didn't feel like this stuff wasnt eating up my insides, I see what it is doing to my hands on the outside so I can only imagine the inside lol! I feel confident I can complete one more, once I talk to my onc tommorow we will see what he says about my bloodwork and my increasing fatigue. We have a tropical storm coming thru our state my treatment day lol! Maybe God will make the decision for me lol! Will post after treatment with what happens, thank you for your input! Sending happy positive healthy results!

    Rosetide:)

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  • rosetide
    rosetide Member Posts: 29
    edited September 2016

    Hi ladies,

    Just a quick update. I did the 8th treatment and am going in tommorow for my 9th treatment of just H and P. The side effects from the last one was pretty yuck! lol! My nails on my left hand are going to fall off and I was extremely fatigued. I bounced back quicker though and now am having a tough time sleeping lol! I was so tired then went from sleepy, super sleepy, to now I am wide awake lol! I guess it is because my energy is coming back. I have my PET scan on the 29th to see where I stand with everything. I am not looking forward to it at all. I am so use to bad news after scans I don't think I can fool myself anymore lol! Either way, noone is guaranteed tommorow. That is my reality. I am fortunate I am here right now. Whether I have cancer or not I can be taken out of this world at any moment. Also, that God is a good God, He will not forsake me. He has me in His sights. I will be just fine. Ok ladies, I thank you all for sharing your experience with me, please feel free to pm me anytime. God Bless. Happy treatments to all!


    Rose Tide :)

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited September 2016

    Congrats on finishing Taxoterrible 8! I had 6 together with AC. Then scans showed NED which let me off the hook for more cycles.  So good luck on the scans on the 29th. Will be thinking of you.

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  • rosetide
    rosetide Member Posts: 29
    edited January 2017

    Hi Everyone!

    Just a quick update I haven't been on here in forever! I am doing GREAT!!!! I feel GREAT!!! I am on Herceptin and Perjeta every 21 days and have a tube in my left lung lol! that I get drained at home but I feel fantastic lol! I am happier than I have been in years and thank cancer for bringing me closer to God. I have had the coolest journey and am a whole new soul through this diagnosis. I want to spread my love, hope, and prayers to everyone that is going through this journey!! DON"T WORRRRRRRYYYYYY this is just a moment take it in TRUST the LORD and everything will be ok. I hope everyone is doing wonderful would love to hear from anyone if you want any advise or any tips on how to get through!!!! Peace and Hope!

    RoseTide:)

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  • Wiegp22
    Wiegp22 Member Posts: 268
    edited January 2017

    rosetide, I have been on taxotere, hp, cut the dosage after 1st thx of taxotere and now se are less, had 3 tx's so far will have 8 in all then stay onboard for as long as I can.


    Paula

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  • Wiegp22
    Wiegp22 Member Posts: 268
    edited February 2017

    rose tidehow is the taxotere and hand painted going? Any diarrhea or neuropathy ?

    Wiegp

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  • rosetide
    rosetide Member Posts: 29
    edited February 2017

    Paula,

    Hi, I did not have any hand pain, but my skin peeled off and so did my nails. They have grown back lol! All of the really bad symptoms have stopped since eating, sleeping, praying and mentallly getting healthier. And of course, since the Taxotere treatments stopped as well. It was pretty nasty business. Not as bad as FAC but in the family. Hang in there!

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  • Wiegp22
    Wiegp22 Member Posts: 268
    edited February 2017

    Thanks rosetide, had an abdominal scan yesterday before my 5th thx, but only abdominal scan don't know why they didn't do a full body scan, good news liver tumor was to small to see, so taxotere must be working but what about BBC and bones no idea why they didn't scan

    Thank you again

    Paul

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  • rosetide
    rosetide Member Posts: 29
    edited April 2017

    Hi Paula,

    How did the scan go? I can't stand those scans lol! They freak me out. I would ask why they chose to only do your stomach, sometimes I have heard they try not to expose you to the radiation those scans expose you to. Maybe they only had concern for that area? When you have questions ask before and after. It is your body and your health, ultimately it will be you paying the price lol! I am sure your doctors have your best interest but just in case ASK why lol!

    Rosetide :)

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