TRIPLE POSITIVE GROUP

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  • Bren58
    Bren58 Member Posts: 1,048
    edited May 2015

    I had a lot of popping, or clicking, in my ears during chemo and for several months after. I even went to an ENT specialist about it, but he could find nothing wrong. It eventually went away.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2015

    Since I started hormonal therapy, my left ear has felt a little funny. It's not popping, but it feels like it's buzzing. It doesn't interfere with my hearing; it's just a bit odd.

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  • lago
    lago Member Posts: 17,186
    edited May 2015

    Elaine that sounds like tinnitis.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2015

    Lago,

    I thought about that! I don't actually hear a sound like ringing or humming, though. It's more a ticklish sensation that feels like someone is holding a vibrating object (like electronic hair clippers) right near my ear.

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  • Blownaway
    Blownaway Member Posts: 760
    edited May 2015

    My ears ring constantly. I have to keep music on to distract me.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2015

    Elaine - intermittent buzzing is a symptom of tinnitus. Tinnitus is associated with the chemo drugs, particularly platinum based ones.

    http://www.ncbi.nlm.nih.gov/m/pubmed/20701838/


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  • Jumpship
    Jumpship Member Posts: 305
    edited May 2015

    I'm 8 weeks post-chemo, still on Herceptin but not yet started with Tamoxifen. Anyone have pain in the joints of a thumb that makes it tough to pick anything up?

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  • amylsp
    amylsp Member Posts: 188
    edited May 2015

    Hi Minivan. I have generalized joint pain in my hands, wrists, shoulders, low back/hips, and legs. I can pick things up, but it's hard to open bottles or anything that requires a grip. I'm almost 12 weeks PFC, and it didn't really start until after chemo was over. My MO blames it on the taxotere. Hopefully it will get better as time goes by. I sometimes feel like an 80 year old!

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited May 2015

    thank you Runningcello for the uplifting post I have been down the last few days my hair has been falling out a lot and I finally had it shaved today..I was told that wouldn't happen until after my 2nd treatment by my nurse navigator well she was wrong! I did have an appt with my oncologist today she said that my tumor is drastically reduced and the results are remarkable after only 1 treatment that has really lifted my spirits she said she just had a similar patient who had a tumor like mine and had surgery to remove it and they had no cancer cells left! Gives me hope I'm going through all this and will be cured..my next chemo is tomorrow not happy to go through this all over again hopefully I can stay out of the hospital this time!

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  • efcjax
    efcjax Member Posts: 74
    edited May 2015

    Hi Minivan & Amylsp, I am 9 months PFC and still struggle with joint pain, occasional ringing in the ears, hot flashes, weight gain - just to name a few residual SEs My last Herceptin treatment is Friday so hoping I'll see some difference afterward. Having a terrible time with my right thumb. Trigger thumb. Very painful. Using a brace to stabilize it, but doesn't appear to be getting better. My MO said it sometimes takes 2 years to get back to "normal" after treatment. At first I thought that was horrible news, now I just hope she's right and there is a bright light ahead (and it's not a train).

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited May 2015

    oh I am so glad I asked this question about the ears, now I will bring it up to my nurse, and Dr. Cause the chemo nurse said it's not related. Now I can tell them there are at least 4-5 of you with ear issues. I was heading to the ENT. Next week to find out why? What? Etc?

    I asked my yoga teacher today if she ever heard of cranio therapy that was mentioned on these boards, so she had it done to her and advised me that it was done by a massage therapist to her. So at least I know to where to look.

    Chemo for me tomorrow so not looking forward to it, but gonna have to do it. Have a good day girls.

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  • runningcello
    runningcello Member Posts: 110
    edited May 2015

    Stephmoen, I pray that this time because you know what to expect.. You can be more proactive :) hydrate & get ready for nulesta. It causes loads of joint pain but is great for your counts. :) you can come on here & complain all you want in the coming days, I'm hopeful it gets better. Remember each day that passes is closer to the finish line.


    Best of luck! & pretty hats are awesome to wear if you're up for it besides a wig.. Being bald is also sweet at times, cheek bones & facial structure really are accentuated, hehe.

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  • Jumpship
    Jumpship Member Posts: 305
    edited May 2015

    Jersey Girl-My massage therapist also does cranio work. I go to her for oncology massage. There is a Society for Oncology Massage online where you can find the right people. My body is so much better because of her!

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  • sophie14
    sophie14 Member Posts: 44
    edited May 2015

    Good Morning Ladies ... I wish everyone the best day possible ... I was able to do my treatment yesterday ... nine more taxol treatments to go ... H/P treatments until next April. ... It was an interesting day yesterday. I thought I was getting just taxol ... but Surprise ... I got T/H/P because the oncologist is trying to get me back on schedule... He told me he has treated and is now treating a lot of breast cancer patients and most of them have done ok on these treatments. But this time he has four of us that he is having a hard time figuring out what is going on with our very low white blood counts. I have to get the neupogen shots today, Friday, and Monday. They check my blood on Tuesday to see if it's high enough for treatment on Wednesday. I hope the shots work. I dread the bone pain if it happens. He also prescribed Bentyl for the bad abdominal cramps from the taxol. I guess the four of us ladies have turned into an experiment and are putting his skills to a test. I sure hope we all pass it...It's kinda scary. .. But this is where faith steps in and God is in control....

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  • lago
    lago Member Posts: 17,186
    edited May 2015

    Sophie I got nuelasta from the start. First one was the worst one as far as bone pain but only bad for a few days. I just couldn't stand up straight. Narcotics make me sick so I didn't take any.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2015

    Neulasta shots aren't given during weekly Taxol treatments. They can only be given every two weeks so it doesn't help with weekly treatment. I had to get a neupogen shot the day before almost all of my weekly Taxol treatments. My WBC count was always perfect the next day. You shouldn't have any bone pain with neupogen. The neulasta shot is equivalent to (I believe) 10 neupogen shots. They helped keep me on schedule during the full 12 weeks

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  • ang7894
    ang7894 Member Posts: 540
    edited May 2015

    I got my Neulasta shot every time the day after each chemo treatment no matter what chemo I was on.  Until I was totally done with all chemo treatments. And then went on to Herceptin only then no more shots.  Athoough I was on treatments every two weeks.

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  • Cheesequake
    Cheesequake Member Posts: 264
    edited May 2015

    I got my path results yesterday. The tumor was 3.2cm, 0/1 nodes, margins all clear (4mm or greater on all sides but one, which was 3mm.)

    The report also indicates lymphovascular invasion present both in the perinodal adipose tissue, and at the tumor site.

    Anybody know how this could be? I imagine they would've wanted me to do all the treatment options just because I'm triple+, but does this just cement it further?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2015

    cheese - the size of your mass and Her2+ is enough to warrant treatment regardless of LVI. LVI as a prognostic indicator is not well understood, I don't think many oncologists would base treatment decisions off of it only. It wouldn't change the recommended treatment for you anyway

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  • Cheesequake
    Cheesequake Member Posts: 264
    edited May 2015

    Thanks for that SpecialK. I get the impression you're the encyclopedia around here ;) I'm sorry for that, but thank you for sharing your wisdom with us newbs!

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  • lago
    lago Member Posts: 17,186
    edited May 2015

    Cheesequake they used to base recurrence on LVI but they found that node status was more accurate of an indicator. I would ask your MO this question.

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited May 2015

    I just recently saw a study that said 4+ nodes meant an almost 70% chance of recurrence. FREAKED me out. I use to research a lot. Now I drink my green juice, exercise, and stay happy. No need to go looking for trouble.


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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited May 2015

    had chemo yesterday, so today is the neulista shot , I have started my Claritin earlier this weed and will continue on for the next 5 days to see if this helps with the bone pain. Or longer if needed. Thanks for the info on the cranial massage group, I am going to check in on that for a location or specialist near me. I am going for a lymphadema evaluation since I have fluid build up again at the surgery site, this drainage has been ongoing since February. The last biopsy was clear of the bad cells, but guess I can ask if there is some exercise I can do to minimal the fluid, my surgeon thinks I am still doing too much.

    Ok gals have a good day and happy Mother's Day this weekend !

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  • Cheesequake
    Cheesequake Member Posts: 264
    edited May 2015

    lago that is good to hear! I will definitely talk to the MO about it next week. I fired the first MO, we'll see if this one is any better...

    geewhiz, that's a good strategy. I haven't been able to pull myself away from research yet - I keep thinking of questions and potential negotiations with the MO!

    Jerseygirl, good luck!!

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  • lago
    lago Member Posts: 17,186
    edited May 2015

    geewhiz first 2-3 years are highest risk for recurrence. Then first 5. So far you've made it through the highest risk period! Also remember you had Herceptin.

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  • sophie14
    sophie14 Member Posts: 44
    edited May 2015

    Good Morning Ladies ... Happy Mother's Day weekend ! ... I feel like I have been run over by a truck ... Oh well, I think I have just nine more Taxol treatments to go. The chemo nurse said I would be getting Herceptin and Perjeta for a year. I thought I would only have 4 Perjeta treatments. I'm going to ask the oncologist what the plan is... I have had 2 Neupogen shots and will get another one Monday. My blood work will be Tuesday and next treatment Wednesday... I hope my white counts will stay high enough.... The chemo nurse said to get prepared to have the Neupogen shots every week if the counts stay up ... My old body hurts all over ... I don't want to be touched anywhere ...I told my husband if the PA says these treatments are going to be so much easier one more time I might slap her. ( of course I wouldn't).Yesterday I felt like I might not make it .... the chemo nurse said oh yes I would , and I would be back there Monday for another shot. Did any of you get tired of going to the chemo center everyday? .... Take care everyone ....

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  • debiann
    debiann Member Posts: 1,200
    edited May 2015

    Anyone find it true that hair grows faster after herceptin is finished?  I finished two weeks ago, and as happy as I am to have hair again, I can't wait to get a little more length.

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  • Bren58
    Bren58 Member Posts: 1,048
    edited May 2015

    Debiann, my hair did grow faster after finishing herceptin. I also took, and still take, Biotin (vitamin B-7) everyday which is helpful for hair and nail growth. Check with your doc. I think there are a number of women on here who take Biotin.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2015

    Debiann,

    I'm still doing Herceptin, every three weeks. My "head hair" is growing at a decent clip. But, my eyelashes are still sparse, and I no longer need to shave my legs, my armpits, or elsewhere.

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited May 2015

    Thanks for the encouragement ladies. I don't think I realized we were at the highest risk the first 5 years, I thought with ER after 5 years it was a level playing fireld with Her2 with all the same risks. Glad I am wrong, and if I am not I will stay in my bubble today. I have 3 kids and about to shoot my husband. Every year on Mothers Day, he brings his mom over to celebrate (and he has 6 siblings who NEVER take her on holidays, other than the one who gets paid to be her caretaker). She is in diapers with dementia. And he doesn't change her, I do. So I found out that he did it again this year, and I smiled and made lunch reservations at a huge buffet for me and my 3 kids. So instead of sulking, I smiled and said, "Have fun with your mom, I will be spending the day with my kids". Think that was a mean move? I think cancer did it to me, lol. I am definitely not dependent on others to be happy. I know me and the kids will have a great afternoon!!!


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