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TRIPLE POSITIVE GROUP

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Comments

  • Jkeet
    Jkeet Member Posts: 16

    rlmessy, I had my port put in July 31st and had my first chemo Aug 1st. The hardest part was sleeping because the port hurts for a week or two. Healing from port and chemo at the same time was rough. I wanted to get treatment started as soon as possible though and didn’t want them using my veins. If you can I would wait but if not you can still get through it.

  • coachvicky
    coachvicky Member Posts: 984

    rlmessy,

    My timeline was Tuesday, 12 July 2016 BMX; Wednesday, 10 August 2016 Port Surgery; Monday, 22 August first chemo (TCH). I only agreed to chemo after my Oncologist answered a question that my husband asked (What happens if she chooses not to take chemo?) My Oncologist responded, "She will die." I don't know if that was true but it scared the you-know-what out of me. I really thought that since I had a BMX with no lymph involvement, I could skip chemo, LOL.

    I asked to start chemo on Monday, 22 August not only to give my port time to heal and time for me to adjust (both by the advice from my Surgeon) but that 3 week start date provided us no conflicts with holidays vacations that we celebrate.

    MissouriCL, Great post.

    Taco, Yes. There are always other MDs.

    Have a wonderful weekend.

    Vicky

  • cowgirl13
    cowgirl13 Member Posts: 782

    I had about a week between port surgery and chemo. Since I was one of the few people who had a big time issue of pain after port surgery there is no way I could have had chemo any sooner. But remember, my experience was atypical. I'm sure you will not have this kind of reaction. I had planned that after port insertion that I would have a week's time to just relax, have fun and just have a general good time before starting chemo. No way. It was as if I had been kicked by a horse. But Please Remember, this was only my experience.

  • hapa
    hapa Member Posts: 613

    I started chemo the day after my port was placed. I didn't have a lot of pain with my port surgery (or any other surgery for that matter, not sure how I got off so easy), but I did have a terrible skin reaction to whatever adhesive was on the dressing they put on me after surgery. Waiting a bit to heal first would have been nice, but I was already 3 months post dx before they figured out I needed chemo and hadn't had surgery yet, so I thought it was best to get the show on the road. If I were you, I'd accept the accelerated schedule and just reschedule the start of chemo if you don't feel ready by the 29th. Good luck.

  • specialk
    specialk Member Posts: 9,261

    bird - you look cute in that pic - or at least as cute as possible considering the circumstances...

    On the subject of finding mets as soon as possible, and the methods to do so, there is no universal methodology. For some, tumor markers such as CA15-3, CA27/29, CEA, etc. are reliable for early signs of mets. For others, they can have extensive mets and normal markers, so the science is not there for all of us to count on these particular markers for proof. Hopefully the newer CTC (circulating tumor cell) markers will be more accurate and available soon. Whether or not oncologists use the existing markers, and on which patients, is indicative of their particular philosophy and experience. I do get regular markers drawn, and have been sensitive to them in terms of registering change when inflammation has happened. Whether or not this would hold true if I had mets is currently unknown - so these markers could display a false negative, and have already shown a false positive for me as an individual. As far as finding mets early, I tend not subscribe to the idea that it does not matter when you find them - outcome is the same. The treatment guidelines predicated this concept are based on old studies that pre-date a significant number of treatments that have become available, and also studies that look at how mets occur and when that happens have been done more recently. This information may lead to a better understanding of how and when to look for mets. The very fact that some stage IV patients are living a lot longer than ever before is proof enough to me that the benefits of early detection doesn't just apply to early stage breast cancer. Some think that reducing the tumor burden surgically or with radiation at the outset and then treating systemically with chemo and/or anti-hormonals will extend the length of time to remain alive - I have seen it for myself. Others think that reducing the tumor burden can actually accelerate the aggressiveness, and starting off with aggressive treatment causes you to run out of effective treatment options sooner - and they are also correct. Therein lies the conundrum. My personal, and totally anecdotal, viewpoint - I have two friends who treated aggressively out of the gate with surgery and chemo - one stage IV de novo, while the other had "progression" several years later but our shared oncologist thinks she actually had undiscovered mets at the time of diagnosis. Both are doing well and are working, traveling, and living life and it has been almost 8 years for one, 9 for the other. My dad and brother were both diagnosed with stage IV de novo cancers of differing kinds - my 82 year old dad did two separate rounds of chemo - six months apart - and he lived six times longer than my 55 year old brother who did no treatment at all. Unfortunately, how to pursue information about progression for early stagers, and what to do with that info when you have it, is a complex issue.

  • Adhoney
    Adhoney Member Posts: 65

    MissouriCatLady: I really like the post you shared from Lillian Shockley.

    Rlmessy: welcome to the club that you never wanted to join. These groups have been so helpful, I can’t imagine how lonely it would be without them. Our spouses & Family are supportive, but nobody REALLY understands unless they’re going through it.

    I was on the same meds as you except I also got Perjeta. I tolerated it well except I had extreme fatigue & my taste buds were out of whack for at least a week after chemo. I found crystal light singles, especially lemonade, very helpful. Lemon & lime flavors tasted the best to me.

    I got my port placed on 3/6/19 & had my first chemo 7 days later. My port was really tender for about 3 days, but felt much better by the time chemo started. I was ready to get chemo started so I liked the timeline.

    Anyone know of a Kadcyla thread on here? I’m on K every 3 weeks along with daily Anastrozole and they are causing me so much muscle & joint aching, it’s just really rough. I’m hoping that once K is finished in May that maybe the aching will improve. Anyone have any experience with this?

    Angie


  • kimmh012
    kimmh012 Member Posts: 85

    side effect Questions: last Chemo of Taxotere and H/P was Sept 18th, Then H/P Oct 15th until Sept 2020 ... every since Sept, no matter what I try to eat, I start sweating really bad and I get a stomach pain with nausea. Usually only lasts a few minutes. This is very annoying.

    Also, I have a "stitch" on my left side of waist. When I move wrong, I get a strong debilitating zap.

    I have told my MO and BS, they did blood work that show kidney function is fine. So I see my Ortho on Tuesday thinking it's my Myleopathy (pinched spinal cord) just concerned because it started right after I had the Taxotere.

    Any and all ideas and opinions welcome.

  • bamr
    bamr Member Posts: 52

    I had surgery Oct. 10 and the pathologist is redoing the Her2 test. Haven't heard back yet. Did any of you find out you were Her2 positive after being Her2 negative from your original biopsy months ago? I would hate to find that out after I've finished 5 months of chemo and had the port taken out. I'm scheduled for radiation in 3 weeks. BS tells me not to worry.

  • countca04
    countca04 Member Posts: 33

    I've just started on Kadclya on Oct 1, next treatment this week.

    I have been feeling extremely tired and some bone pain. First week was feeling nauseous and very very tired. It gets better through the weeks after treatment which is also every 3 weeks.

    I'm also on Letrozole, and I know that also causes bone pain.


    Wondering if I should go away south to warmer climate this winter....at least twice try to get away for two and half weeks between treatments....dont know if it helps?


  • 1207262
    1207262 Member Posts: 20

    My mother has seen a couple doctors. One surgeon staged her (clinically) as IB and another at a more reputable hospital gave her a clinical stage IIA.

    What I don't understand is that all three surgeons said that clinically there is no lymph node involvement and the tumor is sized at 1.2 cm or less.

    Two oncologists at the top two breast cancer hospitals in Philadelphia suggested a less extreme regimen and adjuvant treatment because of the prediction of no lymph node involvement and a relatively small tumor.

    One breast surgeon staged her IB at a local treatment center, then at a major hospital the second breast surgeon agreed on the clinical staging, and the third at a different major hospital said IIA. The oncologists have mentioned nothing on staging.

    Should we just disregard this because clinical stagings are just estimates? I just don't understand why they are making these "estimates" and what their bases are for them. Everything I have extensively read up on for both the old format of staging and the latest prognastic staging both would be IA. The local breast surgeon even mentioned, which we were angry he even said this without asking, that my mother's five-year survival rate was 85%. This made absolutely no sense to me as he was the one who estimated IB and was the most confident in his approximation that there was no lymph node involvement.

    All of these stagings were done BEFORE the FISH test came back, too! Which makes it MORE confusing! It is a grade three tumor, but even still, based on everything I've read it doesn't make sense.

    A ≤1.2 cm tumor, no lymph node involvement, ER+/PR+ >90% for each, and they guess IB and IIA before even HER2+ was a consideration?

  • elainetherese
    elainetherese Member Posts: 1,635

    You're right; clinical staging is just an estimate. So, I wouldn't worry about it. The important thing is the treatment options. Your Mom would probably be fine with Taxol + Herceptin, though if you wanted to go super-aggressive your Mom could do Taxotere + Carboplatin + Herceptin + Perjeta or Adriamycin + Cytoxin and Taxol + Herceptin + Perjeta.

  • lulu44
    lulu44 Member Posts: 32

    Hi guys. I’ve been following along but haven’t said much. I’m on cycle 5 day 4 of TCHP. Just wanted to say thank you for all of the sharing & information

  • hapa
    hapa Member Posts: 613

    Staging is just a label, whereas your cancer is your cancer, no matter what label you slap on it. I think your mom should take whichever treatment plan she is more comfortable with. All this stuff is kind of a roll of the dice at the end of the day, no matter how much research you do.

  • rljes
    rljes Member Posts: 499

    BMAR - I had 3 test for HeR2, all coming back inconclusive. finally after my BMX discovered I was Her2+

  • mactaz
    mactaz Member Posts: 592

    lulu44, sorry you are here but welcome to our group. It Has been so helpful to me, 14 months after diagnosis

  • neeli
    neeli Member Posts: 73

    Hi All,

    If anyone has any feedback about my situation please let me know. I am shattered from my pathology report today.

    Pathological report after MX says 0.7cm tumor was residual along with 3 sentinel lymph nodes (3mm,2mm,3mm) testing positive. A 2.4 cm DCIS was also removed during MX. The tumor has mix of invasive ductal carcinoma and invasive micro papillary carcinoma. ( My initial biopsy before chemo reported only invasive ductal carcinoma + 2 lymph nodes). BS wants to remove all axillary lymph nodes next.

    As of now i have 3 cancers - IDC, invasive papillary carcinoma, DCIS. 3 positive lymph nodes, her2+ve, ER+ve, PR +ve. Can i even be hopeful?

  • suburbs
    suburbs Member Posts: 398

    Neeli, when you feel shattered, you have come to a good place to be put back together. The plan for next steps will come together and you can stay on the road to recovery. Towards the end of chemo, I had a bad finding and became unglued. This support group and Prozac ( has shame in using all available curatives). Please hang in there and post as much as you need. Sending hugs and lihht

  • missouricatlady
    missouricatlady Member Posts: 894

    Hugs, Neeli. There are a lot of good treatments for hormone positive cancer that work well!!! Herceptin is one of them!

  • rlmessy
    rlmessy Member Posts: 97

    Hey Neeli,

    I am new to the group too. I have 3 types of cancer from biopsy pathology report. Main is Invasive Micropappilary Carcinoma or IMPC, then there are traces of LCIS and DCIS. ER/PR+ and HER2+. Whew it's a mouthful. I am just dx'd in the last 2 weeks.

    I am scared for sure but hopeful. My mom had IDC with ER/PR+ and HER2+ 13 years ago and she is still her rocking my world. There are medicines that can help us live long and healthy lives. I am counting on that.

    One thing from your description...you used both terms micropappilary and papillary. If my research is correct these are not the same types of cancer and the terms should not be used interchangeably.

    Try to stay hopeful, you are not alone.


  • neeli
    neeli Member Posts: 73

    rlmessy - i meant Invasive Micropappilary Carcinoma. So far i thought i had IDC. I had not heard of IMPC before and little bit of googling says its kind of rare cancer.

  • hapa
    hapa Member Posts: 613

    neeli - last I read, IMPC doesn't have a significant affect on prognosis separate of other factors like nodal or skin involvement. I don't know how big your tumor was to start with, but residual cancer after neoadjuvant chemo is not uncommon in triple positives. I had either 2.1cm or 5mm of residual tumor depending on which biopsy report you read (I had path confirmed elsewhere, long story), plus three positive lymph nodes but apparently the LN had only scattered cells. Will you be needing rads? If so, I'd skip the ALND but that's just me. I had ALND and wish I had refused it (though it was done while I was still on the table) because I still needed radiation anyway.

  • neeli
    neeli Member Posts: 73

    hapa - I will definitely check with my MO about skipping ALND since i will be doing radiation anyway.

    why dont axillary lymph nodes show up on MRI if they are cancerous?

  • Ilaina
    Ilaina Member Posts: 5

    hi. Texting for my mom. She was just diagnosed with triple positive cancer. She had one positive node. Went to oncologist and the only further tested he prescribed was a lung xray.

    I had her2+ 10 yrs ago with no node involvement and they scanned my whole body before chemo. How do they check for Mets if the don’t check rest of the body

    Have things changed that much. ? I am looking to cange doctors after he stated that taxotere didn't cause permanent hair loss. That was just a bunch of greedy people who are suing company. Really!


    We live in northern Delaware. If anyone knows a good oncologist please PM.

  • sportsmom25
    sportsmom25 Member Posts: 2

    I don’t post on here often. I normally just read. That being said, I wanted to let you know that I had the port put in and the next day they started chemo.

    My team is AMAZING and I know them all well. My surgeon included. He put the port in and left it accessableto the nurses and it didn’t hurt at all. He said to either do it like that or wait a few weeks out and the skin wouldn’t be so sore when they did their poking.

    I did three months of chemo once a week. Everything went well and the port was never and still isn’t an issue.

  • TriplePHtown
    TriplePHtown Member Posts: 40

    llaina

    I think your mom should find another doctor. My doctor at a prominent cancer hospital did a bone scan as part of the diagnosis process and then a CT when he wanted to make sure that something they saw was normal. My doctor also mentioned that some women on taxotere choose to cold cap because there is a very small percentage who have permanent hair loss. Best of luck to her in her treatment

  • Adhoney
    Adhoney Member Posts: 65

    Welcome LuLu, I hope that you're tolerating your TCHP without too many side effects.

    This group is so very helpful: sharing info, venting, get ideas on how to many side effects, etc. There is so much knowledge here.

    Angie


  • lulu44
    lulu44 Member Posts: 32

    Thank you! I’m hanging in there but not feeling great. You may have posted this elsewhere but how is the Kadcyla? If I don’t have a pCR to chemo then I’m getting Kadcyla instead of Herceptin after surgery. I’m kinda nervous about the side effects.

  • wheatscapes
    wheatscapes Member Posts: 50

    Hey everyone - I haven’t posted in a while. Completed 12 rounds of Taxol + Herceptin and one Herceptin only infusion. MO now wants to take another CT scan of my chest due to two tiny nodules found on original/baseline CT back in early July. Back then he told me he wasn’t too concerned about the lung nodules because it’s common for people to have them and they’re typically not malignant. But since I have a history of breast cancer they have to follow-up with another CT scan to see if the nodules have changed in any way.

    I feel like I did back in the dark days of early diagnosis. I was doing so well: finished Taxol, have lost a significant amount of weight using weight watchers and Zumba, back to living a semi normal life and now....this. Doesn’t help that I caught a nasty cold and haven’t been able to do anything all week but hack my head off. When will this nightmare be over? When can I get on with my life? Are they going to CT my chest every three months for the rest of my life? I feel like refusing the CT scan. If I have Mets to my lungs I don’t want to know. What are they going to do if I have Mets? I just want to run away.

  • lilych
    lilych Member Posts: 176

    Wheatscapes, you may consider a PET Scan to see if the nodule is active. A similar thing happened to my wife 6 months ago that chest CT scan found a 9.6 mm nodule, then a PET Scan showed it somewhat active and a biopsy confirmed it was cryptococcus infection. My wife has been taking anti fungus medication since then and she is healed now (although that medication will continue for a while).

  • suburbs
    suburbs Member Posts: 398

    Iliana, I can recommend Dr. David Mintzer at Penn Medicine. He’s my oncologist and I have always liked him. And yes, scans are not typically ordered in all cases. Good luck navigating the system.

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