TRIPLE POSITIVE GROUP

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2017

    shelabela - I was surgically post-meno when I started systemic treatment, so not having regular cycles, but my understanding is that it is not the Herceptin or the Perjeta, but most likely the Taxol that would stop your period. You may, or may not, have a cycle during the time you are receiving chemo - or they may be random, and you may, or may not, restart at some point when you are on Herceptin only. You will find a variety of experiences here - and some who were close to menopause did not re-start, so age can be a factor too.

  • cjs9473
    cjs9473 Member Posts: 37
    edited March 2017

    I was very regular with my periods prior to chemo. I had my period during my first chemo, got another one 3 weeks later, then didn't have any more. I just finished my last chemo two weeks ago. I am 51 and my doctor said I may just go straight into menopause. After I have my surgery and start back on Herceptin, he is putting me on Tamoxifen instead of anti-estrogen.at first to make sure I am actually menopausal.

  • fightergirl711
    fightergirl711 Member Posts: 300
    edited March 2017

    I had my last period around my first chemo, didn't have any periods or spotting during chemo or Herceptin. Got my ovaries removed in December, so I'm officially done.

  • Robin1234
    Robin1234 Member Posts: 45
    edited March 2017

    Hi Ladies it's been a long few weeks but I went to my 2nd MO and she said no chemo or Herceptin to just do tamoxifen and Zoladex so I went with her she wanted me to do. Next day she called me say she has weekly meeting and she brough my case up and her 2 colleagues told her that they would of had me do taxol and herceptin. So i called her back and she is out of the country until this Monday to see what is she thinking now. I went back to my 1 MO and got my bloodwork done and echocardiogram and everything is normal, port in this Wednesday and Taxol and herceptin next friday. Went to chemo class today and scared. I'm not a persin that takes meds at all so all this pre meds and the meds they are going to give me is causes me anxiety. Can you guys tell me your experience. Thank you

  • Taco1946
    Taco1946 Member Posts: 645
    edited March 2017

    Robin, I'm guessing that like me, when your path report came in HER2 +, your MO's recommendation changed. I've had 6 infusions of weekly Taxol and Herceptin, will have 6 more and then will have 13 more (every 3 weeks) of just Herceptin before the tamoxofin. According to my MO, the 10 year survival for HER2+ folks makes a huge jump with the addition of Taxol. I haven't had nearly the side effects that I have read about on these threads. I do get an antibiotic, anti nausea, steroid, and benidryl before. She gave me a prescription for additional anti-nausea medications but have seldom used them. There is a thread for weekly Taxol which you may want to look for. I have added nexium because I realized that I was not nauseated, just having a little acid reflux. During the past several infusions, my hands have been swollen and rashy so I use over the counter benadryl. Yes, it is a handful of pills when I add other things that many in my age group take but I am comfortable with that. As a physician's wife, I know I am more willing to medicate than some are, but I would definitely make the same choices again. I am a hard stick and am very glad to have the port. You may want to look for a thread like "beginning chemo in March or April 2017." The Jan 2017 group has become very close and went to a private Facebook account. We scream and laugh and share haircuts.

    WE CAN DO THIS!

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited March 2017

    shelabela I started chemo in June, and I had my last period in July 2015. I never had another. I'm on lupron and tamoxifen, so no chance of it coming back. It's the one "perk" of cancer. I hated my period and it was heavy and miserable every month so I don't miss it!

  • Kmjb
    Kmjb Member Posts: 4
    edited March 2017

    Hi ladies. Does anyone know why some of us are receiving weekly taxol and some get 21 day cycles of taxotere? I have 21 day cycles of TCHP. This regimen was suggested by my surgeon and MO, so after 2 agreeing opinions I didn't ask many questions (at least about drug choices). I understand different drugs are suggested based on pre- or post-menopausal and that some can only get perjecta if it's given before surgery. Just curious in the difference.

    Robin 1234, I too hated taking any meds and haven't had any except vitamins and supplements in years. So when I was given a list of Otc things to purchase to off set some possible side effects and then saw the list of pre-meds they give you just to get through the chemo infusions, and the prescriptions for steroids and anti-nausea meds, I was a wreck. But, I had to let it go and decide to follow all their guidance. We are in a huge battle that must be won, but I look forward to the day when my medicine cabinet is empty again! Wishing you the very best!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2017

    kmjb - Taxotere is a stonger med than Taxol, has more potency, and would be too toxic given weekly, while Taxol given every three weeks would not be strong enough. I am not sure whether being pre or post menopausal is a factor, as Taxol used as a single agent is prescribed generally for smaller tumors - 1cm or less, or when combined in a regimen with an anthracycline drug like Adriamycin. Combining Taxotere and Adriamycin in the same regimen is pretty brutal, and it is used together pretty rarely (TAC). Some oncologists prescribe Taxotere because they want to avoid using Adriamycin and Herceptin due to the cardiotoxicity, even when not given concurrently. Taxotere is more commonly used with a tumor usually larger than 1cm. Pejeta is currently FDA approved for neoadjuvent administration only, some oncologists have been successful in giving Perjeta after surgery, but this is considered an off-label use for early stage patients right now.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2017

    Kmjb,

    It depends on stage and oncologist preference. My tumor was big (5 cm+), so I did four doses of Adriamycin + Cytoxan, then 12 Taxols (with some Herceptin and Perjeta thrown in there). If my tumor were much smaller (say less than 1 cm) and I had no nodal involvement, I might have been able to get away with just the Taxols. (Taxol is supposed to be the gentler cousin of Taxotere.)

    I could have done TCHP, but, in her experience, more of my MO's patients tolerate AC + T than TCHP. A good number of her patients have tried to quit half-way through TCHP due to gastrointestinal issues. It should also be noted that MO's patient population appears to be older and quite fragile. (I swear, I'm always the youngest person in the infusion room, even now when I get my Zoladex, and I'm in my late 40s.) So, I went with MO's recommendation.

  • Kmjb
    Kmjb Member Posts: 4
    edited March 2017

    Special K and Elaine, thanks for the info!

  • coachvicky
    coachvicky Member Posts: 1,057
    edited March 2017

    Robin1234,

    Here is my treatment and experience:

    I did Taxotere, Carboplatin, and Herceptin every 3 weeks August - December. Now, I am on Herceptin every 3 Weeks thru 14 August.

    My husband used gel caps on me and saved my hair.

    I took every pre med, after med, whatever my Oncologist recommended to help me.

    I worked to walk for at least 2 miles 6 days a week. I think that did more to get the chemo thru my body than anything. Even on those days when I would be tired, I still get on the treadmill walk for 20 minutes.

    Finally, I made up my mind that chemo would not beat me and I would win this battle. I have several sayings that I would read and reread to keep me positive. I also journaled and blogged. This help me deal with my feelings and see my progress.

    Most of my SEs have been from Herceptin but they are not that bad. I have a constant running nose and swelling in my hands and feet. So, I take a diuretic and potassium when ithe swelling gets bad. The best news is that my Roseaca has cleared up! My Dermatologist thinks that the Herceptin killed the facial mite that causes the inflamationfrom Roseaca.

    You can do this! Best wishes.

    Coach Vicky


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2017

    Glad to hear you're doing so well, Coach Vicky! I worked during chemo, but I can't say that I walked two miles a day.

  • Kattis894
    Kattis894 Member Posts: 218
    edited March 2017

    I am so impressed that you managed to work during chemo. Also impressed about your walking and exercising. I am a bit behind in all that just trying to hold things together here for now. Waiting for results for scans and trying to get organised with paperwork etc.

    I started Femara during my radiation and I think my body is starting to feel the effects of the medication in form of slight headaches and body aches and suffering from "chemo brain" or just regular stress and worry about it all.

  • Robin1234
    Robin1234 Member Posts: 45
    edited March 2017

    Thank you so much Ladies for your help. I wish all you the best and God bless you all.

  • kae_md99
    kae_md99 Member Posts: 621
    edited March 2017

    ladies do you know if Taxol is also better as far as reflux is concerned? i have bad reflux with TCHP.did 2 cylces of TCHP already.second was bad with reflux issues that i had to be admitted to the hospital.

  • coachvicky
    coachvicky Member Posts: 1,057
    edited March 2017

    Elaine There and Kattis894

    I was just so scared something would happen to my heart with Herceptin that I walk. Frankly, I hate exercising.

    My Plastic Surgeon wants me to work on my upper body strength. He asked if I had a trainer. When I finally finished laughing, I shared a that I had an exercise room filled with nice, slightly used equipment.

    My next MUGA is Monday. Praying for a great number.

    Coach Vicky

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2017

    Kae,

    Taxol is "supposed" to be gentler than Taxotere. It gave me mild diarrhea and fatigue, but that was about it. However, Taxol can contribute to neuropathy, or the loss of feeling in your extremities (fingers and hands, toes and feet) that can be irreversible. I had mild neuropathy in my fingertips, and still struggle a bit to open those plastic bags at the grocery store to store produce and meat. (I sometimes ask the store employees for help with those bags!) Some women use ice during infusion to avoid neuropathy. Otherwise, I found Taxol/Herceptin/Perjeta to be kinder than Adriamycin and Cytoxan.

    Hope you feel better, Kae! That must have been some awful reflux to send you to the hospital. ((Hugs))

  • kae_md99
    kae_md99 Member Posts: 621
    edited March 2017

    yes, i have delayed gastric emptying too Elaine. my Mo thinks 4 cyles will do me PCR since we cannot palpate it anymore as it was close to skin. doing everything to atleast get 4 rounds if reflux is bad plus the delayed gastric emptying...thanks.hopefully reflux will clear up.

  • Kattis894
    Kattis894 Member Posts: 218
    edited March 2017

    Elaine Therese,

    I am noticing you are taking different hormons than me and it makes me curious to why. We seem to have about the same size tumor to start with. I getting treated in Sweden so protocols might be different. Instead of AC I received FEC for example. Do not know the difference but mine contained 3 different chemo medications that made me loose my hair in 10 days after the first infusion...I am suppose to be on letrozole (same as Femara) for 10 years and getting Zoledronic Acid for my bones every 6 months for 3 years, as well as pills for calcium and Vitamin D.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2017

    Kattis,

    We are both on AIs, which are intended for post-menopausal women. Aromasin and Femara work in similar ways, but their formulas are different. Because I am pre-menopausal, I also receive monthly Zoladex shots which shut down my ovaries. My doctor chose Aromasin because the SOFT study (which shows that AIs can be more effective than Tamoxifen for pre-menopausal women) also used Aromasin. She figured that the insurance company would be more likely to approve of Aromasin for me if we followed the SOFT study protocol.

    As far as chemo goes, I'd think that our doctors may have prescribed different regimens because they operate in different medical universes. In the United States, medical oncologists follow the national standards devised here. For HER2+ cancer, patients usually get either Adriamycin + Cytoxan then 12 Taxols (with Herceptin and Perjeta if tumor is over 2 cm) OR Taxotere + Carboplatin + Herceptin + Perjeta (if tumor is over 2 cm). Your doctors may be following Swedish protocols, which have been developed in that medical community.

    Hope this helps!

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited March 2017

    I'm bearing down on my two year cancerversary. MO next week, and mammogram two weeks later. Feeling the anxiety start to creep in. Sigh...I'm sure I'm fine, so why do I get so worked up?

  • shelabela
    shelabela Member Posts: 584
    edited March 2017

    tresjoli2,

    Praying for good results!

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2017

    Tresjoli,

    Time to dip into the Ativan or Xanax! Seriously, I just had a mammogram, and I always feel different from most of the clientele in the waiting room. They have a special post-scan room for those of us BC veterans. Our scans get looked at by the radiologist immediately. If there's a problem, we get ultrasounds immediately. Everyone else just goes from scan to dressing room.

    OY. Hope your appointments go well!

  • Kattis894
    Kattis894 Member Posts: 218
    edited March 2017

    It is interesting to compare the different approaches. Yes, they are following the standard national treatment plan here. I am not pre-menopausal and not receiving the Zoladex shots but infusions of Zoledronic Acid every 6 months, planned for 3 years to protect bones together with Femara.

    Everyone is truly getting individual treatment plans within the country as well it seems, and in my mind it just means there is a lot they can try if something is not working so for me it means good news that there are so many different options in treatment.

    Tresjoli keeping my fingers and toes crossed it will all go well for you!

  • deni1661
    deni1661 Member Posts: 463
    edited March 2017

    Tresjloi2- congrats on the 2 year milestone, praying for good results!

  • kae_md99
    kae_md99 Member Posts: 621
    edited March 2017

    is chemo side effects cumulative? is does it vary from cycle to cyle? i know every individual is different but cycle 2 was way worse for me than cylce 1 landing me in the hospital.. if its effects are cumulative then i cant imagine cycle 3. thanks!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2017

    kae - some side effects are cumulative, mostly fatigue and worsening of blood counts. Other side effects are better mitigated with each round of chemo due to experience - knowing what to expect and how to behave accordingly. For some, new side effects will crop up, while others will discontinue. It is not necessarily that the same things you are experiencing with each round get worse, just that you know you will have them. If your side effects are cumulative, and worsening, your oncologist can also reduce your doses - this is very common.

  • kae_md99
    kae_md99 Member Posts: 621
    edited March 2017

    thanks SpecialK.will add that to my questions when i see her in 2 days

  • deni1661
    deni1661 Member Posts: 463
    edited March 2017

    kaemd99 - so sorry your last treatment is beating you down. I sent a reply to your message. I am praying your side effects get less intense and you're feeling better soon. Take care

  • Suburbs
    Suburbs Member Posts: 429
    edited March 2017

    Tresjoli2, in my view, it would not be normal to not get worked up. Makes complete sense to me. Mammogram = bete noire! In a few days, you'll post a glowing report and breathe a deep sigh of relief. That's my wish for you

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