TRIPLE POSITIVE GROUP

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  • Abbasi
    Abbasi Member Posts: 6
    edited December 2015

    Hello ladies, had my last herceptin tx 2 weeks ago .Now feel more scared as if protection is gone.

    Had nasty stage 3c tumor. 😩😩😩

    I am 35 and have developed sever hypertension during treatment anyone else had this problem?

    My love to all of you fighting this monster may God protect you all.

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

    Abbasi,

    My blood pressure is high, but it was high before treatment, so I'm not sure what's to blame. High blood pressure runs in my family, and all four of my grandparents had strokes (my last grandparent died last year of a massive stroke at age 95). I do know that during chemo, my blood pressure was nice and low. My MO's nurse speculates that my low blood pressure was due to all the fluids they pumped into me during chemo. As for now, I'm on three blood pressure meds and the combination of them isn't doing much. I go back to my general practitioner on Monday to see if he has any better ideas.

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  • wabals
    wabals Member Posts: 242
    edited December 2015

    My blood pressure went up and I am now on a beta blocker

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  • DurhamGirl
    DurhamGirl Member Posts: 100
    edited December 2015

    amylsp, I wish I had asked my MO for the source of the newest research (about carboplatin and HER2+ disease) at my appointment the other day, but I was too wrapped up in the moment to think about it. I can email her and ask, as I am curious, too. It's possible that the research hasn't even been officially published yet--it could have just been presented in advance of publication as an abstract at the conference last week. I'll see what I can find out.

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

    dawntastic - some of us have LVI, some don't. Oncologists are divided regarding the importance. Some will give it more weight if nodes are negative, but if nodes are positive it makes sense for it to be present. Some oncologists also regard IST in the sentinel to be "clinically" node negative, particularly if you are in a situation where chemo is less of a question mark. It factors into rads decisions more in these cases. There is some thought that IST can be artifact, or the sentinel doing its filtering job without really being an indicator ofadditional nodal involvement. Your pathology report shows classification using the TNM staging system - this is common. Here is a link that explains it:

    http://emedicine.medscape.com/article/2007112-over...

    You can take the TNM info and compare it to regular staging criteria and figure it out.

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  • dawntastic
    dawntastic Member Posts: 17
    edited December 2015

    Special K - Thank you so much. That sheds some light on the subject. All very confusing but I'm slowly learning!!

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited December 2015

    Warrior sisters, feeling a bit weirded out about this Monday. I have my first Herceptin only IV, meet with MO for postop reports, and rad onc to discuss rads schedule. I've been feeling so good since my last chemo on Nov. 10th. I guess I'm just freaking myself out. I pray for no side effects and that it will be smooth sailing through the holidays. I'm feeling great since the BMX, still have a lot of work to do with range of motion, (trying to be patient with myself while doing exercises) and then rads... but for some reason Monday is just weighing on me... prayers, good mojo, positive vibes, anything you can offer would be appreciated.

    Warrior On!

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2015

    Thinking good thoughts for you on Monday.

    Just a suggestion...have them run the drip for 1 hr and not l/2 hour. This can make a big difference and sometimes it's run for 90 minutes to help with side effects. Hoping Special K will add her wisdom here.

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited December 2015

    wow, that sounds interesting about the l-carnitine. I have fairly numb toes, and have been hoping for some good news about something that could help it. I got my first Prolia shot and due for second one in April. Glad there is positive results about cancer preventative and this, but I am having some tooth issues and not sure if this is going to be a problem. Hope not. Prolia has a jaw necrosis as a side effect. And if I should need dental work, I am going to ask both dentist and MO about this.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited December 2015

    jersey, i didn't slow the Herceptin drip when I did Herceptin only. I had to quit H after only 2 H only infusion because if heart issues. So if you can slow it down do that. You may be blessed to avoid trouble.

    Much live to all.

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited December 2015

    I was worried when I switched to herceptin only too. So far no issues except my voice is hoarse for a couple days after treatment

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

    Jerseygirl,

    I just finished my year of Herceptin only. I didn't have any side effects; it was just a minor inconvenience in my life. I just had my last heart scan, too -- everything's A-OK. Now, it's on to MO visits that are every three months.

    I know that treating HER2+ cancer seems like it goes on forever (I also had rads), but if you take it one step at a time, it'll be over before you know it.

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  • amylsp
    amylsp Member Posts: 188
    edited December 2015

    @ Jerseygirl

    I also just finished my year of Herceptin. Minimal side effects that I could tell. The only SE I could directly attribute to the Herceptin was a runny nose. That, and I was tired for a day or two after infusion. I did the 30 minute infusion with no problems. Some women seem to tolerate it fine, others seem to need a slower infusion. Advocate for yourself, that's what's important. Good luck tomorrow! Just remember every treatment brings you one closer to being done! :)

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  • KateB79
    KateB79 Member Posts: 747
    edited December 2015

    I had my first Herceptin-only last Thursday, and had them run it over 60 minutes. No side effects to report, other than some minor muscle soreness the next day. I'm feeling better and better every day!

    Next step is a prophy MX on the other side and then rads, but I think I'm ready.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited December 2015

    Thank you my lovelies! I feel better already... As we all know, you start feeling better and want to have all of this just over and done with. I never thought I'd get through chemo and it was over before I knew! I didn't think 'd be able to move at all after BMX and I was walking back and forth to the bathroom by myself 2 hours after surgery, so I know I can do this... Just want to get through the looonnngggg after noon tomorrow with the IV and then back to back doc appts. Plan to come home, eat dinner, and watch silly Christmas movies with my kids (who are 13 & 15 and still snuggle under tons of blankets on our bed to watch holiday favorites)....

    I've been to support groups and the like, yet all of you are far more to me than the people I've met face to face during this time. You are all truly a blessing to me, and to each other.

    The fight is hard, the struggle is real, and yet we will all Warrior On!

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  • Truffles1968
    Truffles1968 Member Posts: 33
    edited December 2015

    I just found out I am Her2+ after the final pathology came out from my BMX on 12/4. I am so overwhelmed right now. I know I have to do chemo and am mad I didn't get the chance to do it neoadjuvantly and don't have it set up yet. My local hospital read my biopsy FISH as negative after an equivocal on ICH. The local dr also said tumor was 1.7, it was 3 cm.

    I had my surgery up at Johns Hopkins 5 hours from me but near my parents. I recovered at my parents house since my house is in the middle of a major remodel and I have 4 young children. I knew I wouldn't rest with a house full of hammering and kids.

    My treatment plan was hormone therapy, now it is chemo and herceptin. I am trying to figure out if I can even be seen locally any time soon, especially With the holidays. It looks like everyone starts chemo within a month after therapy if they start it after. I am so worried- I could start chemo and herceptin up at Hopkins earlier, I already have an MO there but I can't go up there every 3 weeks for a year for the Herceptin.

    Has anyone changed to local infusions mid treatment?


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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited December 2015

    truffles, I'm sorry for the Her2 news... I'm Her2+ but was fortunate that it was at initial diagnosis... I was just talking to a woman who was in the same position you are with regard to distance, etc. She contacted her insurance company, insisted on speaking with a case manager and was able to get in home infusions for the Herceptin.. it took a little doing, but she was able to get it. Key things to mention were that bit can be done by visiting nurses trained to administer the Herceptin in the home setting. Maybe you can do that if the docs and insurance will work together... please PM me if you need more info and I'll see what I can do/ask...

    Praying for you to have some peace...

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  • rleepac
    rleepac Member Posts: 755
    edited December 2015

    I know you feel like you need to rush and start treatment but waiting a few weeks to get started locally usually isn't a problem. Especially since you've already had BMX. I was diagnosed 1/6 but didn't start treatment until 3/5 so I could do it locally. I had a pathologic complete response. I think they would prefer you delay start rather than switch halfway but share your concerns with your MO and see if the extra time is an issue.

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

    Truffles the true pathology is after surgery. Biopsies can be unreliable since they only get small portions of the tumor and can be missed. It's not unusual for a tumor to be larger or smaller by 1cm or more.

    I didn't get chemo/herceptin neoadjuvantly. I also didn't get Perjeta because it wasn't approved yet. I was more than happy to get the cancer out of me sooner. I am 5+ years from diagnosis and still NED. It's a shock I'm sure but there are many like me. You are at Hopkins which is a great place but you can get your infusions elsewhere closer to home. Talk to your oncologist about this.

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited December 2015

    hi all. I do take hercepton on the 60 minute course, dr was not happy, says there is no difference, but I felt the slower the infusion, the less taxing it is on anything, got the echo results and I am still in th 60's range, so no changes . I will watch my salt intake maybe that's a culprit, cause ankles swelled again? And as for tiredness, it's got to be the aromataes or the herceptin? Been off chemo since end of May ...what else could it be?

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

    Jerseygirl don't be surprised if it's the ESD (estrogen sucking drug) that's causing it. I did retain more on Anastrozole. Not sure if I am on Exemestane because I've also added another med and I think it could be that

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited December 2015

    lago, did you/do you have SEs from Tamoxifen? They keep tossing that drug in my conversations for after Herceptin and rads...

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  • wabals
    wabals Member Posts: 242
    edited December 2015

    Truffles where do you live

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  • Truffles1968
    Truffles1968 Member Posts: 33
    edited December 2015

    wabals I am in Virginia Beach.

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

    Jersey my MO decided to start me on ESD. I was so close to menopause given my mom's and sister's history. Already peri although my cycles were still like clockwork. She tested me for 5 months to see if I stayed in chemopause. I had a much easier time than my sister. Hot flashes only at night were very minimal and I had no mood swings.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited December 2015

    Truffles, I moved to another state after my treatment started. It wasn't a big deal at all. I met my new MO and we sent up the appointments there.

    JerseyGirl22, I took Tamoxifen for about four months before I switched to Anastrozole (Arimidex). I didn't have any side effects at all. Well, I did occasionally have leg cramps at night but those stopped after I made sure I drank plenty of water during the day.

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  • wabals
    wabals Member Posts: 242
    edited December 2015

    Truffles what I would do is start treatment at Hopkins, if you can start sooner. Then switch to more convenient location. I would still keep your MO at Hopkins so they can check all labs echoes etc. I would be wary of the first MO since they got things so wrong. Find one at home who is willing to share your info with JH. I get my treatment there. They are the best

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited December 2015

    Ok, so, met with Mo yesterday. They've declared me cancer free after neoadjuvant chemo and BMX. Had first Herceptin only IV yesterday and rads due to start next month... Then came the discussion on "well, 5/23 nodes were positive" so there are options to pursue... a "bit" more chemo, stronger, harder chemo at that - NO. My body had a really hard time with chemo to begin with, and I got the impression that was not going to be her recommendation, anyway. Then, it was rads, Herceptin, and then Tamoxifen for a very short time to see if my periods come back or not. If not, then move to an AI. If they do come back, the prophylactic ovary removal and AI... Xeloda was tossed around in conversation, but dropped....

    Anyone have any thoughts here... SpecialK, and lago, I'm thinking you might have some insight here...

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

    jersey - sounds like a reasonable game plan to me, with rads providing clean up in the axilla and the continuing protection of Herceptin and the addition of anti-hormonals.  I think the Tamoxifen in the short term until your menopausal status is determined is good - with ooph and AI in the wings.  I would ask your MO to lay out any specifics regarding ILC with this plan.  Here is some info from BCO on this:

    http://www.breastcancer.org/research-news/20121217-5

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited December 2015

    Thanks, SpecialK!

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