• looking for experiences with taxol and herceptin

    Asked by Janni on Monday, May 30, 2016

    looking for experiences with taxol and herceptin

    I'm Her2 positive and starting 12 week once per week chemo this thurs. Have one breast not completely healed from surgery. Worried about infection and implant health as well. Already postponed one week due to lack of complete healing. Trying to stay positive !

    19 Answers from the Community

    19 answers
    • Redsoxfan1129's Avatar
      Redsoxfan1129

      Hi - I am also starting taxol and herceptin this Thursday. Looking forward to what others have to share. Did you have a mediport placed for your infusions?

      about 5 years ago
    • Janni's Avatar
      Janni

      Hi ! I had a port put in when I had bilateral mastectomy April 7. Has been flushed and ready to go. Experiencing a little anxiety over the unknown after chemo effects. Also trying a cold cap therapy to preserve my hair -- but make no mistake it should be called FROZEN CAP threrapy. How r u feeling?

      about 5 years ago
    • Redsoxfan1129's Avatar
      Redsoxfan1129

      I'm nervous but anxious to get this process started. I had my mediport surgery last Tuesday. My lumpectomy was easier than that. After the surgery the catheter kinked and the surgeon had to go back in and reposition it...I ended up with two surgeries in one day. It's still tender and healing so the thought of someone accessing it with a needle concerns me.

      about 5 years ago
    • Janni's Avatar
      Janni

      Ouch! Can totally understand the anxiety of someone even touching ur port ! Good luck to u. Let's keep in touch on experiences. It's nice to know someone else is starting same day with same chemo protocol !

      about 5 years ago
    • Redsoxfan1129's Avatar
      Redsoxfan1129

      Absolutely! I feel so much better knowing someone is starting the same day as me. It will be co forging to share our experiences.

      about 5 years ago
    • Ruthieq99's Avatar
      Ruthieq99

      Taxols tend to make your nails peel, split and sometimes fall off. The way to help this is to keep them moisturizer, and hands and feet cool as possible while getting the chemo. There is also something called and and foot syndrome. If you've ever put white glue on your hand and let it dry, so you could peel it off, this is what the skin on your palms and soles may do. It is possible that since you are getting a lower dose weekly, rather than every three weeks dose density like I had, you may not experience this to the same degree. Your nails will definitely look bumpy and lined though. Know that this will pass they will grow out. I still have much of an aversion to chocolate and coffee due to the metallic taste and memory of same during chemo. They were my favorites before. (10 yrs survivor of inflammatory breast cancer). I have not heard that any of my Her2 positive friends had any side effects from Hercepton. Good luck you two! Keep in touch with each other and compare notes... My friends have been buddies for years meeting just like this.

      about 5 years ago
    • Janni's Avatar
      Janni

      Thank u so much Ruthie. I heard taking BIOTIN May help nails - has anyone heard of this?did u experience neuropathy as well. ? Really appreciate ur advice.

      about 5 years ago
    • Ejourneys' Avatar
      Ejourneys

      I'm HER2 negative so did not have Herceptin, but I did have 12 weekly infusions of Taxol after 4 cycles of Adriamycin/Cytoxan. I had some toenail discoloration, nosebleeds (my nose also ran because all my nose hairs were gone, along with all the rest of my hair), and my iron tanked to the point where I needed IV Feraheme. I also had metallic chemo mouth, though it affected only the taste of water. Adding lemon juice to my water bottle helped. Hydration was crucial -- I drank at least 10 glasses of water/day, more on infusion days. (I went off coffee not because of the taste but because it's a diuretic.) I wore an earloop mask mainly to humidify my nasal passages and cut down on the nosebleeds, but the mask also helped protect my lowered immune system from germs.

      Good luck, @Janni and @Redsoxfan1129! (I'm from RSN, myself -- lived in MA for 20 years.)

      about 5 years ago
    • Redsoxfan1129's Avatar
      Redsoxfan1129

      My oncologist has stressed the fact that I am getting the lowest does of taxol possible and that the majority of his patients have tolerated it well. I'm holding out hope that this is true but also being realistic that anything can happen. If not for the HER2+ factor I would not be going through chemo, only radiation. I'll take my path and go with it and hope for the best. Thank you both for commenting.

      about 5 years ago
    • jujurrr's Avatar
      jujurrr

      My DIL just finished 12 weekly taxol, with herceptin and perjeta every 3 weeks. She's HER2+. She had the chemo first and is getting ready for surgery in the next few weeks.. One important thing with the taxol is using ice on the hands and feet. AMAZON , Natracure cold therapy socks ($20). and she used workout gloves with finger nail area cut out from TJ Maxx. This makes it bearable with the ice. She did develop neuropathy form the taxol, but there's 3x the circulation in your hands and feet and the ice constricts the vessels allowing less taxol into them. She started acupuncture too late but it did help mildly. She will continue with it to see if it helps. It can become permanent but she's hoping its temporary. As mentioned, hydration is important the day before up til the day after. In fact she started to develop mouth sores, which she rinsed with baking soda and water which helped. SO we read about ice chips in the mouth too during taxol infusion. I made her homemade gatorade from the HIPPY HOMEMAKER which she loves. lemon, lime maple syrup and himalayan sea salt. Good luck to the both of you. Her nails did discolor but didnt come off. Moisturizing helps with the cracking and drying of the fingernails. God bless you all.

      about 5 years ago
    • Jouska's Avatar
      Jouska

      I had taxotere, which is similar to taxol, also carboplatin, herceptin and perjeta. I also had a port. Ask for a prescrption of EMLA to goop on your port an hour before they access it. Don't apply it lightly but goop in on and cover it. I used saran wrap and medical tape, but I sure there are some sort of bandage that would work. Having a port was wonderful and at the oncology center they used it for blood draws too. I did not know about the cold treatment for hands and feet and do have some neuropathy still in my feet, 18 months later, but it is very mild. Herceptin has very few side effects - I tolerated it well and had 12 more treatments after chemo ended. I think a year of Herceptin is typical. They will do some sort of heart check to ensure Herceptin is not impactng your your heart - I had quarterly MUGA scans. My first chemo was very scary. I was just convinced they would be pouring acid in my veins. Of course it was nothing like that. It doesn't hurt and with the port, you really are not aware of it. Herceptin always felt cold. They will space out the drugs, they are given one at a time, with saline in between and they will monitor you for any reaction. I received an infusion of benadryl the first time too. I also took Zofram, Zortec and a steriod before and after chemo. Zofram for nausea, which seemed to prevent that very nicely, Zortec as a anti-allergy and the steriod to help counteract allergic reaction too. All were ordered by my doctor. You should have someone to be with you especially the first time and to drive you. The benadryl knocked me out a bit. The oncology nurses are the best - I was so impressed with them. Very willing to explain and understand the fear you are going through. With the herceptin alone, I didn't take anything before or after. So no steroid, anti-nausea drugs etc. Wishing you both the best!! Let us know how it goes.

      about 5 years ago
    • Janni's Avatar
      Janni

      Thank you for your responses ! I'm feeling very positive as I hope my new Red Sox friend is as well. Gonna ask about the EMLA. I so appreciate all the experience and advice.

      about 5 years ago
    • Redsoxfan1129's Avatar
      Redsoxfan1129

      I too appreciate all the responses. It is so nice to hear from others that have already gone through this journey. I'm trying to stay as positive as possible. It was suggested during my education meeting that I bring someone with me for the first treatment. My mom will be coming on Thursday. - Ann

      about 5 years ago
    • Sassmat's Avatar
      Sassmat

      Hi ladies!!! I had the A/C chemo first then the Taxol &Herceptin. I know everyone reacts differently, but I tolerated it very well. My only side effect was the splitting of the toe nails, which 2 years later I am still having issues with. I do take Biotin every day and it helped my finger nails but not my toes.
      I also had a port... So much easier & convenient!
      I had revision surgery while in Herceptin. It did take a little longer to heal, but it's all good!!
      Good luck to you!!! You got this!!!

      about 5 years ago
    • Janni's Avatar
      Janni

      Good wishes being sent your way for today Ann! Let the chemo adventure begin - Janice

      about 5 years ago
    • Redsoxfan1129's Avatar
      Redsoxfan1129

      Thanks Janice - good luck to you too. I start at 10 AM. I'll check in later.

      about 5 years ago
    • PinkPickle's Avatar
      PinkPickle

      I'm a 6 year survivor and has Herceptin Taxol and Carboplatin (TCH) as my regime I had 6 rounds of all 3 Then a year of Herceptin. I didn't have any "out of the ordinary side effects. My nails actually grew better. They had ever! About 3 days after each treatment I'd get Chemo fog for about a week. Just lethargic and sleepy. I took a walk every day, nothing major strenuous.
      I did get mouth sores around the 3rd treatment. Nothing horrible.
      When. I was on Herceptin alone I felt like I had a mild flu and my eyes watered. My hair started to grow in but was slow. Once the Herceptin was over, it grew in fast. 5 years after completing Chemo and Herceptin I feel pretty good! Only lasting aide effects I have are from my mastectomy surgery.
      Best of everything to you!

      about 5 years ago
    • Redsoxfan1129's Avatar
      Redsoxfan1129

      Good morning - hope you are feeling well this morning Janice and that your treatment went well. My day was long, started at 10 and left right around 5. Went much better than I expected, although I wasn't really sure what I was expecting lol. I had a slight reaction to the taxol which made them stop it and give me more steroids and Benadryl. After that smooth sailing. Stopped for dinner on the way home, I was starving! I did feel the steroid affects as I was still wide awake at 11:30 last night. I took an Ativan as suggested and slept wonderfully. So far I feel good this morning, just groggy from the Ativan. The good news is we have 1 down and only 11 more to go!!

      about 5 years ago
    • Janni's Avatar
      Janni

      Hi Ann I'm so happy things went well. Mine did too. I probably overdid but I did get the EMLA and gooped over the port as jouska (above) suggested. I put a piece of Saran Wrap over didn't need any tape since my bra held it in. I asked the nurse to spray anyway and I didn't feel a thing. We did the hour of premeds including benedryl then went right to taxol. Reason we didn't do taxol last is I'm using a cold cap therapy for hair preservation and that itself is a process. I have to change the cap every 20 min and it is done b4, during and 4 hrs after chemo. left at 430 pm. Finished up at home by 615. Took longer on the taxol since it was the first time and it was done prior to herceptin they dripped slower. I took anti nausea b4 as a precaution, skelaxin ( muscle relaxer for my chest after mastectomy) and Ativan. I slept between every cap change until mid afternoon !

      Brought protein Pack in to eat and salad for my helpers BUT had weight watchers
      Ice cream when I got home. Double. Maybe triple. Don't be fooled by weight watchers -ice cream is ice cream. Makes me feel better indulging ! Feel good today and nurses told me by mid July as white blood count goes lower will expect to be more fatigued. We also have to closely monitor the one breast that had not yet completely healed from surgery as we don't want the good new tissue to be eaten by chemo. So enjoy your weekend ! More to come with round two! J

      about 5 years ago

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