Herceptin (52 week study)

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michrja
michrja Member Posts: 4
edited March 2014 in Breast Cancer #1
Currently in 6th month of Hercepitn, with 6 to go, after 12 weekly Herceptin/Taxol treatments. Has anyone had any side effects from Herceptin? I have had joint stiffness, muscle soreness. Can anyone confirm similar effects? Now my eyebrows and lashes are starting to thin after they grew back. I currently take Arimidex.

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  • tulip66
    tulip66 Member Posts: 32
    #2
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    Yes, to all the side effects you have listed. My eyelashes and eyebrows really thinned a couple of months ago and now it seems they are growing in again. I have joint pain and muscle stiffness but not everyday. It seems to come in spurts for me. I am will finish with my 52nd treatment of Herceptin in August. Last week they let me know that we no longer need to take Tylenol and benedryl with it. I'm glad because the sleepiness would ruin the rest of my day. Sometimes with my symptoms I can't figure out if it is residual from the Taxol or radiation? I finished radiation in January but I think it stills affects me sometimes. I was also put into early menopause (I'm 37) and I think that also saps your energy? What our poor bodies have to go through! You are definitely not alone with your symptoms.
  • SusanAnne
    SusanAnne Member Posts: 245
    #3
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    I have 10 more weeks of Herceptin left. I never attributed joint stiffness or muscle soreness to it though; thought that was more caused by the tamoxifen I'm on (I will be switching to Arimidex soon though) Have you been getting Tylenol and benedryl with the herceptin like tulip? After my 12 treatments along with the taxol, I've just gotten the herceptin alone. I think being thrown into early menopause causes a lot of symptoms as well, we can never be certain what the culprit is. Hang in there.
    Susan
  • kennethewood
    kennethewood Member Posts: 10
    #4
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    My onc. says that the Herceptin is like water (no side effects). He further says that all of the hair thinning, joint and muscle aches and pains, and so forth, are due to the Docetaxel (taxotere)and the Carboplatin (paraplatin). I finish the D&C end of August and go on the Herceptin alone for an additional six months. I was planning on all of my adverse symptoms disappearing once I got on the herceptin alone. Am I naive on this one?
  • Onyx
    Onyx Member Posts: 7
    #5
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    My treatments also include Dexamethasone, Doxil, taxotere along with the herceptin. I do not get a symptoms from the herceptin but I do get the worst symptoms from the Taxotere! Im going on my 4th treatment of Taxotere & my symptoms are 3 days later which include the stiffness, nervousness, and lack of sleep. My head also feels so tight for at least a week later. I thought I would get use to the symptoms of the Taxotere but they still come on full force each time and I have 4 more to go. I don't want jinx myself but when I don't mind going for the Herceptin! Good luck on the rest of your treatments and if you have any tips to give me I would really appreciate anything. Thanks Onyx
  • michrja
    michrja Member Posts: 4
    #6
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    tulip66 said:

    Yes, to all the side effects you have listed. My eyelashes and eyebrows really thinned a couple of months ago and now it seems they are growing in again. I have joint pain and muscle stiffness but not everyday. It seems to come in spurts for me. I am will finish with my 52nd treatment of Herceptin in August. Last week they let me know that we no longer need to take Tylenol and benedryl with it. I'm glad because the sleepiness would ruin the rest of my day. Sometimes with my symptoms I can't figure out if it is residual from the Taxol or radiation? I finished radiation in January but I think it stills affects me sometimes. I was also put into early menopause (I'm 37) and I think that also saps your energy? What our poor bodies have to go through! You are definitely not alone with your symptoms.

    Thank you for your prompt response. It's good to know that your brows and lashes are coming back while you are on the Herceptin. Being that I still have until October, I can't imagine being without them for so long. I am not taking Tylenol or benedryl in conjunction with my Herceptin. Can you tell me why you are? I too am post menopausal due to Chemo, and I am 43. My thyroid appears to also have suffered. So I also take synthroid to help stabilize it. Are you currently taking Arimidex or Tamoxifen? Look forward to hearing from you. Thanks again.

    Jane
  • michrja
    michrja Member Posts: 4
    #7
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    kennethewood said:

    My onc. says that the Herceptin is like water (no side effects). He further says that all of the hair thinning, joint and muscle aches and pains, and so forth, are due to the Docetaxel (taxotere)and the Carboplatin (paraplatin). I finish the D&C end of August and go on the Herceptin alone for an additional six months. I was planning on all of my adverse symptoms disappearing once I got on the herceptin alone. Am I naive on this one?

    Dear Ken,
    You are right. Most hair loss is due to Taxotere. Your hair will probably grow back to its original form, as did mine, upon completion of Taxotere (I had taxol). I finished my Taxol at the end of December and all my body hair did grow back. It is only recently that they are again beginning to thin. Good luck on the Herceptin.

    Jane
  • michrja
    michrja Member Posts: 4
    #8
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    SusanAnne said:

    I have 10 more weeks of Herceptin left. I never attributed joint stiffness or muscle soreness to it though; thought that was more caused by the tamoxifen I'm on (I will be switching to Arimidex soon though) Have you been getting Tylenol and benedryl with the herceptin like tulip? After my 12 treatments along with the taxol, I've just gotten the herceptin alone. I think being thrown into early menopause causes a lot of symptoms as well, we can never be certain what the culprit is. Hang in there.
    Susan

    Hi Susan,

    I have not been getting Tylenol or benadryl with my Herceptin. I am wondering why. I go tomorrow for my weekly herceptin treatment and will ask someone. Why are you switching from Tamoxifen to Arimidex? Thanks for your response.

    Jane
  • tulip66
    tulip66 Member Posts: 32
    #9
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    michrja said:

    Thank you for your prompt response. It's good to know that your brows and lashes are coming back while you are on the Herceptin. Being that I still have until October, I can't imagine being without them for so long. I am not taking Tylenol or benedryl in conjunction with my Herceptin. Can you tell me why you are? I too am post menopausal due to Chemo, and I am 43. My thyroid appears to also have suffered. So I also take synthroid to help stabilize it. Are you currently taking Arimidex or Tamoxifen? Look forward to hearing from you. Thanks again.

    Jane

    Hi Jane - The reasoning behind taking Tylenol & benedryl with the Herceptin is that Herceptin has a mouse compound in it...exactly what it is I am not sure. No wonder I am eating so much cheese :-)! Well, it is some kind of protein. But it also has human proteins in it. Last week they announced that the amount of mice that is in Herceptin is not significant enough to warrant continued use of Tylenol & benedryl...due to very low allergic reactions. My Onc.'s are very conservative and that is why I probably was on it in case I would have an reaction. Once I sat next to a lady that went into shock from Carboplatin and that was a scary thing to see (they had given her Benedryl already too!). I was ER- so they don't have me taking Arimidex or Tamoxifen. Sounds like we have lived a very similar year. I had 4 rounds dose-dense A/C; then surgery; then 12 weeks Taxol/Herceptin and now 40 weeks just Herceptin. What a ride! Don't worry the lashes do come back. It truly freaked me out to see them coming out again. I had lost every hair on my body with the Taxol and didn't want that to happen again. Take care and lets try to keep in touch. Ruth
  • SusanAnne
    SusanAnne Member Posts: 245
    #10
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    michrja said:

    Hi Susan,

    I have not been getting Tylenol or benadryl with my Herceptin. I am wondering why. I go tomorrow for my weekly herceptin treatment and will ask someone. Why are you switching from Tamoxifen to Arimidex? Thanks for your response.

    Jane

    Hi Jane,

    When I first started treatment I was premenopausal (I'm 47). After about 6 mos. of not having a period, I asked to have the hormonal tests done to check my status. When it showed that I was in menopause, I started reading all the studies regarding the aromatase inhibitors. To me they seemed to be more effective and a more aggressive treatment. After discussing it with my doctor, he agreed to switch me over. I haven't switched yet since that was right before my reconstructive surgery two weeks ago. I didn't want to confuse my body any more than I was about to so I'll make the change in a few weeks when I'm feeling more like myself again. What is the actual trial number you are involved with? There are a number of them going on, I wonder if we are in the same one.
    Susan
  • inkblot
    inkblot Member Posts: 698 Member
    #11
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    kennethewood said:

    My onc. says that the Herceptin is like water (no side effects). He further says that all of the hair thinning, joint and muscle aches and pains, and so forth, are due to the Docetaxel (taxotere)and the Carboplatin (paraplatin). I finish the D&C end of August and go on the Herceptin alone for an additional six months. I was planning on all of my adverse symptoms disappearing once I got on the herceptin alone. Am I naive on this one?

    Hi Ken:

    Noticed your post re Herceptin:

    I doubt that you're naive about it, however, for your doc to say that it's like water, with no side effects, is quite a shocking statement. Although it is not noted for causing hair loss, etc. and most people have fewer side effects compared to A/C, it is, nontheless, quite a potent drug. Most doctor's order a MUGA scan (cardiac screening) or an Echocardiogram, prior to beginning Herceptin, something you may want to ask your doc about.

    You can go to: www.nci.nih.gov and go to "breast cancer" and then to "types of treatment" and you will find quite a bit of info re Herceptin, which may be beneficial to you. Also, check out Google, (or any good search engine). Just type in Herceptin and you will find quite a few good sites to peruse. Hope that's helpful and good luck.

    Love, light and laughter,
    Ink
  • dee9191
    dee9191 Member Posts: 6
    #12
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    michrja said:

    Hi Susan,

    I have not been getting Tylenol or benadryl with my Herceptin. I am wondering why. I go tomorrow for my weekly herceptin treatment and will ask someone. Why are you switching from Tamoxifen to Arimidex? Thanks for your response.

    Jane

    In response to Jane who said "I have not been getting Tylenol or benadryl with my Herceptin. I am wondering why".

    Most of the ladies at my clinic don't get the "pre-meds" unless they show some symptoms during/right after infusion. I get the benedryl because the infusion causes me to ITCH ITCH ITCH! I also infuse over 45 minutes instead of 30. It's kind of fun sometimes. The nurses try to remember who is a Tylenol/ benedrl/ 30; who is just Tylenol/30; and me just a Benedryl/45 :) Btw, I have been on weekly Herceptin for close to two years now. Aching joints, fatigue, and a dropping EF as shown on my MUGA's are the only side effects I experience.

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