TRIPLE POSITIVE GROUP

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited March 2016

    Sammy, I've been on Tamoxifen for nearly a year now with no troubling SEs. So it is possible.

    Buffalex, my platelets dropped too, after rebounding after chemo, though not as significantly as yours (they have remained above 100,000) so we are not alarmed. My onc ran several blood trsts, and so far we have no news. He's watching and waiting.

  • RobinLK
    RobinLK Member Posts: 840
    edited March 2016

    Lisaj - sorry to read about your sister. Is it Robin? A good oncology counselor and patient navigator can get you pretty far. I know you found encouragement at BCO, I hope she is able to also.

    Oranje - the steps your doctor is suggesting sound pretty thorough. They need to address the current issues. As far as medication options, there are AIs with either ovarian suppression or removal. They come with their own set of SEs. You may also want a bone density scan to see if you have osteopenia or osteoporosis before starting an AI. I have stayed with the devil I know, tamoxifen, after removing my ovaries. I had a hyst in '99 so did not have to worry about the uterine thickening.

  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited March 2016

    mltdd, thanks for the info... I'm done chemo, my SEs are from the Tamoxifen...

    I've been the queen of SEs from chemo on through, so please don't let me SEs scare anyone... Most people do just fine with very little except for hot flashes...


  • chevygirl54
    chevygirl54 Member Posts: 18
    edited March 2016

    Hi all, hope everyone is doing better. Cancer sucks!! I finished my chemo on Dec 4th,& finished radiation on Jan 26th, still doing Herceptin. I have refused Tamoxifen as I really would rather not take it still have my uterus and ovaries. My oncologist isn't happy about it but agrees, it's my choice. I am having terrible joint pain now with my knees and feet and am wondering if it is the herceptin? Is anyone out there is having joint pain and is in menopause? Happy Spring

  • kiwikid
    kiwikid Member Posts: 204
    edited March 2016

    Hi Blessedbe

    I found this on this site and hope it's helpful

    Pregnancy After Diagnosis Doesn't Seem to Affect Recurrence Risk

    Save as Favorite

    It's estimated that there are about 400,000 breast cancer survivors younger than 45 in the United States. Many of these women might want to have children, but some doctors have been concerned that getting pregnant after a breast cancer diagnosis might affect the risk of breast cancer coming back (recurrence). This is because hormones can promote the growth and spread of breast cancer, and during pregnancy, hormone levels change.

    Many women who get pregnant after a breast cancer diagnosis end their pregnancies because they've been told it would reduce their risk of recurrence, especially if they had been diagnosed with hormone-receptor-positive breast cancer and got pregnant within 5 years after diagnosis – getting pregnant would have meant their hormone therapy treatment would have been interrupted.

    A study suggests that women who get pregnant after being diagnosed with breast cancer have the same recurrence risk as women who don't get pregnant after being diagnosed, no matter the hormone-receptor status of the breast cancer.

    The research was published online on Nov. 19, 2012 by the Journal of Clinical Oncology. Read the abstract of "Prognostic Impact of Pregnancy After Breast Cancer According to Estrogen Receptor Status: A Multicenter Retrospective Study."

    The study matched 333 women who became pregnant any time after a breast cancer diagnosis with 874 similar women who didn't get pregnant after diagnosis. The women were similar in terms of:

    • cancer hormone-receptor status
    • number of lymph nodes involved
    • type of treatment(s) after surgery
    • age
    • year of diagnosis

    The researchers found that there was no difference in the risk of recurrence between the two groups of women. Even when the researchers looked at only women diagnosed with estrogen-receptor-positive disease and only women diagnosed with estrogen-receptor-negative disease, there was no difference in recurrence risk.

    The researchers also compared the recurrence risk of women who ended their pregnancies (30% of the women) to women who went full-term and delivered babies. There was no difference in recurrence risk between these two groups of women. So there is no reason to tell women who've been diagnosed with breast cancer that ending a pregnancy after diagnosis will reduce their recurrence risk.

    Interestingly, the researchers found that women who got pregnant after a breast cancer diagnosis had better overall survival than women who didn't get pregnant after being diagnosed. This benefit also was independent of the cancer's hormone-receptor status. Overall survival is how long a woman lives, with or without the cancer coming back.

    It's not clear why the women who got pregnant had better overall survival. It could be that the better overall survival was due to better overall health and not because of being pregnant. So we can't conclude from this study that pregnancy after breast cancer improves survival. But the good news is that pregnancy doesn't negatively affect recurrence risk or future survival in women who've been diagnosed.

    This study was a retrospective study, which means the researchers analyzed information that had been collected before the study was designed. Retrospective studies aren't considered as good as studies that are designed first and then collect new information specifically for that study.

    If you're currently being treated for breast cancer or have been treated in the past and think you might want to become pregnant in the future, this study is reassuring. It suggests that you can get pregnant without affecting your risk of recurrence or survival, no matter the hormone-receptor status of the cancer. You can learn more about fertility issues and planning for children after breast cancer treatment in the Fertility and Pregnancy Issues During and After Breast Cancer pages in the Breastcancer.org Day-to-Day Matterssection.

  • cgesq
    cgesq Member Posts: 319
    edited March 2016

    GingerChi,

    I too got woozy, and sleepy after herceptin. What worked wonders was asking the nurses to run the herceptin over a longer period of time. They normally ran the drip over half an hr. Extending the infusion time to one hour, or ever ninety minutes, significantly reduced my side effects. I could actually function after infusions.

    Good luck!!

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited March 2016

    robinlk, nice to see you. This is my older sister by 2 yrs recently dx with triple+ and pagets of the nipple, L side. Not Robin, Robin is the RN on infusion unit. My sister is sch for bmx on Monday 3/28 and is very scared. I think the major surgery is scaring her the most. It's so much more than lx which I had.I've been finding info about her dx on these sites as her dx and tx is diff from mine. She just was finishing tx for non Hodgkin's lymphoma and bc showed up on pet scan. She is going to reconstruct with expanders and then implants. So far looks small <1cm and no nodes showed up in pet scan. Hoping she can just do 12 taxol. My sister robin is the nurse on infusion unit at LIJ hospital on LI and our info gatherer and explainer although I've learned a lot through this journey.

    Take care all you ladies. I will be lurking here to gather info for her until she is ready to join herself. Too overwhelming for her right now I think.

  • RobinLK
    RobinLK Member Posts: 840
    edited March 2016

    Lisa, she is in my thoughts and prayers. This is the worst time as you are well aware. Hopefully she will find calmer times once her treatment plan is fully in place. If not, she has two wonderful, knowledgeable women for support!

  • fightergirl711
    fightergirl711 Member Posts: 300
    edited March 2016

    Lisa so sorry about your sister.

    Not sure on stage, but this refers to an excellent study done regarding Taxol+Herceptin: http://www.breastcancer.org/research-news/hercepti...

    In fact, my oncologist at Dana-Farber had put me on the Taxol+Hercepting/Perjeta FIRST, once that's done I'll switch to the AC to address the more systemic issues since I was node positive.

    Hope this helps.


  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    I skipped through a few pages so... Heres my catch up.


    Runsway ( and anyone else) i was diagnosed at 55. Not in menopause. Chemo threw me in also. I started on tamoxifen. My worst symptom was horrendous hot flashes ALL the time. Ob/gyn did vaginal u/s every six months to keep an eye on things as he isnt a particular fan of it. I lasted just short of 3 years, when my pap showed endometrial cells (not cancerous but shouldnt be there).

    He got on the phone with my onc and I was immediately switched to arimidex. Ive been on it 2 years. Hot flashes much better. Changed to warm.

    I dont sleep well. I had a LOT of joint pain. Onc had me try Cymbalta as it has been used off label for that and there are studies on it now. Huge improvement within 48 hours.

    Since I started Arimidex, however, I have places of arthritis showing up everywhere. New onc (first one passed away) thinks it is more related to menopause. I think thats baloney since I had virtually nothing before that.

    I do get a prolia shot as my density dropped some after I finished chemo. Ill have a density test in december and evaluate then.

    I really would prefer tamoxifen if i could control the hot flashes, but they were so bad, I would rather have the joint pain.


    Regarding food during chemo....cooked food tasted terrible to me. Someplace along the line, I missed the neutropenia diet talk, lol, so I was eating raw veggies, salads, etc. smoothies every day with kale, cucumber. When the nurse saw me bring one in, she questioned it. Onc wasnt concerned as my counts stayed within normal, vut said to make sure I only ate the stuff I washed and to do it really well. I fave up salads at rhe restaurant. Wine tasted like acid.


    I too became a 90 minite hercetin girl. Made a big differenc

  • ang7894
    ang7894 Member Posts: 540
    edited March 2016

    For 3 years I complained about the pain from my hips to my feet . Kept telling my oncologist about it because I did not have this pain before dx./before chemo/tamox . I was dx at 43 pre-menopause . When I get up I'm very stiff and walk like I'm 80 years old. MY feet feel like they are in pain all the time and standing for long times about kill me. I had a bone scan in 2013 another in 2014 AND just now in 2016 turns out I have Arthritis in both Ankles and in my right hip. So on to another Doctor

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited March 2016

    just a suggestion for the nausea, ginger and ginger ale work pretty good on the tummy, but try ginger tea, lemon, honey and a dash of o.j. Really is calming, and if you prefer ginger ale, get rid of the bubbles/ carbonation by stirring them away, that might make it more tolerable. It helped me, both of these drinks. You can make your own ginger tea with fresh ginger steeped in hot water for 15 minutes and sweeten with thee rest, honey, oj and lemon if you want

  • scally1
    scally1 Member Posts: 9
    edited March 2016

    My first post! I also had terrible nausea. I couldn't move. We tried Varubi (newer drug) and pulsing my steroids over the week. The nausea didn"t go away, but it was reduced and I bounced back faster. Rather than a week of hell, it was 2-3 bad days. Sipping on ginger and limeade was a go to drink. I hope it gets better soon.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    scally - welcome! Just looked up Varubi, interesting that it is a long acting drug, useful in delayed nausea. Sounds like a wonderful new option! Another possibility for others if this drug is unavailable is to go back to the infusion center and receive IV fluids, alone, or with additional dexamethasone - this can be done for several days if necessary.

  • Musosgirl
    Musosgirl Member Posts: 387
    edited March 2016
    I found chemo-induced nausea to be different than my severe hyperemesis (vomiting) when pregnant. BUT, some of the tricks still applied. First and foremost, stay hydrated. At the first sign you start to feel like you can't do this or feel depressed--get to hospital and get fluids! That was a mantra on our hyperemesis boards. Being even slightly dehydrated worsens nausea/vomiting and a nasty cycle ensues. Secondly, stay on top of your anti-nausea medication, and don't worry about taking more than 1 or 2 meds either. Find your cocktail and use it! Eat what you can stand. Yes, ginger and lemon ease stomach ache, and carbs are easier to keep down, but ultimately whatever you find that you can keep down, eat it. Lastly, separate liquids and solids by at least 30 minutes. When I was pregnant I waited at LEAST an hour between drinking and eating, but didn't find it necessary to be that extreme during chemo. So unless chicken noodle soup is your go-to food, avoid soups.
  • Maggie330
    Maggie330 Member Posts: 2
    edited March 2016

    I was diagnosed w/ triple positive breast cancer in my left breast on 2/04/16. I'll be 71 on 3/30 and that was my first mammogram! I think some higher power was looking out for me!

    Had the lumpectomy on 2/24 - tumor was 2.3cm and 3 of my lymph nodes were clear.

    I'm starting Taxotere, Herceptin and Carboplatin today - first day of chemo on the full moon!

    For my joint pain, my oncologist is giving me the antihistamine Claratin. She says it really works and they don't know why. Have you tried it?



  • Maggie330
    Maggie330 Member Posts: 2
    edited March 2016

    I'm starting the same drugs today - 1st day of chemo. My oncologist didn't tell me all this! She ordered Ondansetron HCL - 4mg every 6 hours and Compazine 10mg every 6 hours. Both for Nausea and Vomiting. I had a lumpectomy, tumor was 2.3cm, on 2/24 and 3 of my lymph nodes were clear,

    I'll be 71 on 3/30/16 and have high anxiety about how my 71 year old body is going to handle it. All my tests were very good: EKG, blood work, echocardiogram, etc.

    Gotta go - have to be there at 9:00

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    Maggie - welcome, but sorry you find yourself here! I took Claritin during chemo to help with bone pain from the Neulasta injection given to keep my blood counts up. I took one 10mg Claritin (not Claritin D) at least an hour prior to the injection which I received a day after chemo. I continued taking the Calritin at 24 hour intervals for several days afterward. The antihistamine helps by controlling the edema in the marrow as it works to produce lots of new blood cells. Some have also found it is helpful with bone pain from taxane chemo drugs, and even from the AI drugs used as anti-hormonals. As far as tolerating chemo - there seems to be no rhyme or reason as to who does well, and age does not seem to be a factor. I received chemo at the same time as several ladies who were about your age - they did great! Keep your oncologist informed of all of your side effects, that way they can offer mitigation as needed. I used these forms and found them helpful for tracking how I was feeling. It helped document specifics so I didn't have to rely on memory when talking to my MO. I printed a set for each infusion:

    http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf
  • KHinMD
    KHinMD Member Posts: 44
    edited March 2016

    Maggie330 - Sorry you have to be here. I just finished a regimen similar to yours, except I was also taking Perjeta. I'm about to start Herceptin only until December. In addition to the advice from SpecialK, I want to add the same thing about not thinking about your age. My grandmother was in her late 60s when she battled BC 15 years ago. There have been many advances in the field of cancer research since then, and I think it is easier to go through treatments now. My grandmother is now a survivor and she has been an inspiration to me during my own battle. It is tough but doable. The first treatment was the hardest for me as I experienced the side effects for the first time, but with each treatment they were so predictable that I could anticipate them. Most of them can be handled with prescribed and OTC medication. Unfortunately there is nothing you can do about some SEs like neuropathy and anemia. My doctor told me it wasn't worth it to take iron pills because they wouldn't work against chemo-induced anemia. I do try to eat iron rich food, but I have been anemic for a couple of months. Once you finish chemo, you can look forward to crossing those temporary problems off your list. The last week before your next treatment should be your best one. You will probably be almost back to normal and feel more like yourself. Then the cycle will continue again. Stay strong and positive and it will be over in no time.

  • ashla
    ashla Member Posts: 1,581
    edited March 2016

    Nutrition Advice for Cancer Survivors....actually good advice for everyone..from MD Anderson


    https://www.mdanderson.org/patient-and-cancer-info...

  • ashla
    ashla Member Posts: 1,581
    edited March 2016
  • Blownaway
    Blownaway Member Posts: 760
    edited March 2016

    My annual mammogram is scheduled for 4th April. About 2 months ago I noticed a 1/2 BB sized "lump" for lack of a better word at 6 o'clock 1" below the nipple area on the breast that didn't have cancer. It hasn't grown or changed in that time period. It is near the skin and I can sort of pinch it within the skin. It feels hard. Has anyone else had something similar? I feel like April 4th will never get here.

  • Nolagirl1126
    Nolagirl1126 Member Posts: 196
    edited March 2016
    • Ashla- thanks for the nutrition info. I love to soak up what I should be eating/taking for preventative measures.
    • Blown away- April 4th is less than 1 week away! I would mention it to Dr and Radiologist so they can watch for it on imaging.
  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited March 2016

    I have my first mammogram on Monday since all of this happened. I'm having a really hard time. I'm not even sure I can walk back in that room? I had a nightmare about it last night.

    I've never had a normal mammogram. I went in thinking this was routine...and it was very traumatic, and sudden, and scary. Go in for my baseline and bang! 3 weeks later I had cancer.

    I took the day as a vacation day. But what else do I do? I'm sure I'm fine...so why am I so stressed and anxious

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    tres - it is a hard thing to go back where scary stuff happened - it makes total sense to me. Just know what you have endured so far means you are a brave soul - you can do this.

  • Nolagirl1126
    Nolagirl1126 Member Posts: 196
    edited March 2016

    Tresjolie- Think of everything you have accomplished in the last year. You may have some PTSD. Take some deep breaths and relax...You got this 😎

  • Musosgirl
    Musosgirl Member Posts: 387
    edited March 2016
    It is completely understandable that any of us could develop PTSD from this experience. Talking with a therapist could be beneficial--if you are experiencing actual panic or flashbacks I would recommend finding a therapist with actual trauma therapy experience.
  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited March 2016

    No..no flashbacks or panic attacks. In general I am doing great! I came through all of this very well, and have been happy in general and no issues. I'm almost all done with herceptin! It's just something about the mammogram itself that has rattled me rattled. I booked a spa pedicure later in the day on Monday :-)

  • KateB79
    KateB79 Member Posts: 747
    edited March 2016

    tresjoli, I understand. When I had to return to my primary care doctor's office for the first time, which was the site of the mammogram and ultrasound that swept me into whatever the last six months have been, I did just fine until I was in the car after the appointment. I lost it. But letting myself cry like that helped; I've since been back again (just for a routine appointment), and I did okay.

    Sending good vibes and reassurance that yes, what you're describing is a thing.

  • KarenInCanada
    KarenInCanada Member Posts: 271
    edited March 2016

    tresjoli, I know how you feel! I went in for my first mammogram and bang, my life turned upside down in no time at all!

    I still have 3 chemo's to go, radiation and the year of Hercepton so another mammo is not in my immediate future yet, but I know I'll likely get some flutters reliving that experience again.

    Positive vibes and thoughts being sent your way! Enjoy your spa time

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