TRIPLE POSITIVE GROUP
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SpecialK- thanks for all of the info and links! It’s really helpful. You’re a wealth of knowledge and I appreciate it
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@speicalk - thanks for the reply, I'll read through the links.
I find the vaccine treatment/trials fascinating
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Hey everyone -
Just wanted to say hi. Finally finished my year of Herceptin at the end of June. 🥳 Have one, maybe two more fat grafting surgeries on my BMX, port removal next surgery. Had to take Tamoxifen, then Fareston b/c Tamoxifen was causing my hair to fall out in handfuls and be incredibly nasty to my husband. I took Tamoxifen for four months then Fareston for four months ($800/mo! 😮), and just switched to an AI, Letrozole, this week. So far so good on the Letrozole. 🤞🏼
So now I am trying to figure-out what is this pain in my shin bone? Does Herceptin cause chronic bone pain in only one bone? It is like six inch area on the front of my shin that’s been hurting on and off since May. WTH. I told my MO and she doesn’t think it’s bone mets, but told me if it continues for two or three weeks to call her. Frankly, I am so PTSD’d from this whole ordeal I don’t think I would survive another scan and the scanxiety it would produce.
Anyone experience bone pain in one bone from Herceptin
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SpecialK--I love when you weigh in on things. You are a treasure!!
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Thanks guys! I try to give info, with links when I can, in answer to questions that come up during/after treatment for all of us, or things I have personal experience with. Breast cancer comes with a steep learning curve and any elucidation I can provide is my silver lining. I have been on this site for almost ten years and I still learn things every time I come on here - BCO is not only support for each other, it is a learning tool for sure!
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ajminn3 - it's interesting that your friend calls hers a "recurrence" since the 2nd set has different markers - everything I've read and what I've heard from others if that it's a different tumor (positive vs. negative for any of the three) it's considered a totally different cancer.
Wheatscapes - bone pain can definitely be a side effect of AI - so maybe the Letrozole. One of the reasons I'm researching really carefully before I agree to AI.
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info seeking - I SWEAR someone mentioned here something about a lymph node procedure (after mastectomy) that did NOT involve taking a giant swath of them. I will get 3 removed during surgery in August, because one was originally positive. Looks like the cancer is now NED there, so hopefully that's it. But if anything comes back, she is talking about take the next batch, with no guarantee on number. I do NOT want a bunch removed. I thought there was another procedure mentioned that just does individual ones for biopsy to try and preserve as many as possible. Help me out if you know!
I want to propose strategy to the surgeon next week at my appointment.
Kris
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Hmmm.... Good question, Wahoomama! There are three levels of lymph nodes in the breast area -- for an ALND (which I had), the surgeon took out all of the Levels 1 and 2 nodes or 20 in total. In fact, most surgeons don't touch the Level 3 nodes. If a compromised node is Level 1, maybe your surgeon could just remove those at Level 1?
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I recently had to go back for an axillary lymph node dissection after my sentinel nodes tested positive during my DMX. My breast surgeon took the whole batch of 24 nodes to test (thankfully only one more tested positive). My plastic surgeon than performed a Lympha procedure before they closed me up. It’s a microsurgery where the plastic surgeon finds a lymph channel and attaches it to a different vein in the armto allow the drainage through the lymph channel to continue and not be cut off. It’s very new and still often considered investigational, so there isn’t much data on its effectiveness. I went for it, it seemed very low risk, and hopefully decreases my likelihood of developing lymphedema from 1 in 4 to 1 in 10 or even better.
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Fab4Mom- that's exactly what I was thinking of! Thank you!
Elaine - I definitely had one positive, which they think was the sentinel. It has a clip in there, so she will be able to tell exactly once she maps with the dye. Really hoping she checks those first 3 and they are negative. If not, she'll take the next "batch" she says, which I don't want.
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wahoomama - from what I understand, it’s more common procedure in Asia and Europe. I’m not sure how many doctors in the US do it yet, but it seemed like a no brainer to me. Just added about 45 minutes to my axillary dissection surgery.
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Hello, all, just wanted to check in with the group’s wisdom about a few symptoms. I’m on day 7 after my first TCHP infusion and today I feel like I have a cold. My nose is runny (haven’t lost nose hairs yet) and my sinuses and ears feel clogged and I’m achy. No fever, thank goodness, so I’m not worried. Just wondering if it’s an actual cold or if this is a side effect others have experienced. Thanks for your help
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AnnaTheBrave, I have experienced the same side effect - (cold like symptoms) especially after my first treatment. Cold symptoms, for me, seemed to be less severe after each treatment, but I still experienced mild symptoms until this week (#11 treatment). My cold symptoms this week were pretty severe. I also started having nosebleeds about my 3rd treatment along with the continued cold symptom side effects. My MO told me to take Claritin which helped. Hang in there!
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AnnatheBrave- I ended up with a sinus infection my first round and continued sinus issues for the duration of treatments (sinus headaches/pressure, drainage, stuffy, all the things mixed together!). I ended up taking Claritin and Flonase everyday of treatment and it really helped. Thankfully now that I’m done with the TC part my sinus stuff cleared up.
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Thanks so much for the reassurance that this is all part of “normal” (by which I mean a great big suckfest!).
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Hey Anna!
I had the same thing happen to me on TCHP. It’s still happening a bit on Kadcyla. I just made sure I had tissues with me everywhere
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Did anyone opt to have their port removed during surgery and finish up the immunotherapy using their arm veins instead? I asked my MO about it and she said it could be done as long as my veins were good enough, but didn't seem thrilled about it. I just honestly hate the port and can't wait to get it out. The thought of having it for a year really stresses me out. It just represents being sick to me.
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As of right now, I plan to keep it in until the exchange surgery which will be after I complete Kadcyla. My BS wants to take it out as soon as I'm done. I haven't asked my MO about it. He may want to leave it in a little longer. Guess we'll see next year
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Anna -
I definitely have those symptoms - and I take Claritan every day. It's intermittent - worse some times than others. I keep tissue with me at all times! I also find it disconcerting that ALL the COVID symptoms are the same as chemo side effects. It's become a bit of a joke in our house at this point. COVID? Chemo?
All along, I have also kept copious notes on a daily basis about side effects so that I can go back and refer to them the next round. It has helped me on a lot of levels - knowing how to plan, changing what I do to respond and get ahead of some things. Knowing what has become unmanageable so that my doctor can tell me what to do differently. I just finished my final round (6) last week and can't believe I'm done and made it through.
Kris
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Smichaels -
Something I'm debating as well. I have a friend who kept hers in and still has it after 17 years, because she gets Herceptin monthly. I would like it out ASAP - because I HATE it. But I also really can't deal with an IV, so I think I'm keeping it for the year, until I'm done with HErceptin. I know it's another procedure, but I'm having my BMX in a few weeks and I can't see already getting it out. It's a love/hate relationship, because I definitely love it for all the blood draws at the MO and the infusion.
Kris
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I hated my port but I somehow dealt with it. Now that I have read a few people's experience here on this board with having their veins so compromised they had to have their blood accessed from their foot. I also didn't know that I might really need good veins at some point a number of years later due to serious illness. What I did do was have my port out several days after my last Herceptin and was I thrilled to get it out. I didn't even know I was supposed to ask/consult my oncologist and boy was he surprised. What I didn't know if that he would have preferred that I leave it in for 2 years because recurrence with triple positive tends to recur within the first several. Even with that knowledge I still would have had it out. They could just put another damn port in if I needed it later on. So just consider everything and you will be making an informed decision.
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Thank you for the info!! Definitely a lot to consider. Is Herceptin damaging to the veins? Are blood draws still required before each infusion?
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"Even with that knowledge I still would have had it out. They could just put another damn port in if I needed it later on. So just consider everything and you will be making an informed decision."
I mentioned that to my BS when he said, I'll see you for port removal as soon as you're done with Kadcyla.
His answer was MOs will always want you to keep it in but, he (surgeon) didn't like leaving them in longer than needed because they could always get infected. His answer was if something happens we can always put a new one in.
I can see both points. I've gotten used to the port, it doesn't really bother me. However, I'm not sure I want to keep it in for more than I need it. I guess I'll cross that bridge when I get to it
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Hi Smichaels11!
No, Herceptin isn't damaging to the veins; its worst side effect is that it can interfere with the functioning of your heart. That's why you should be getting a heart scan (I had MUGAs) every four months or so. I did have blood draws before Herceptin; I'm not sure everyone does. In Europe, Herceptin is offered in a pill form.
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I am the opposite -- I love my port! And I have good veins (but want to keep them that way)
I have a bony chest and it sticks out, but I got a seatbelt cushion and try not to wear my messenger bag over the port. But the port is one quick stick, never get bruised arms, doesn't take the time to get an IV going.... And I feel like it is insurance against the day it is out, so that my veins will still be good and they NEVER have to stick me on my surgical side and increase risk of lymphedema.
It turns out I need kadcyla anyways as I had residual disease, so extra glad I have kept it in.
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Elaine, offered in pill form?! Too bad this is not offered in the US! Seems like that would make a lot of our lives so much easier.
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I was glad I kept my port through Herceptin. Yes, I had a blood draw before each infusion. I was almost superstitious about getting it out but MO encouraged me to go ahead. I did right after my first mammogram after I was done. It was an easy procedure.
It came up as aside a few posts ago but you should be getting an echo at start and every 3 months until you finish. I had NO SEs from Herceptin but heart damage is a possibility which is why they do the echo.
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Thanks, Taco. I had an echo and have another one scheduled for a few weeks from now so I imagine this will continue until treatment is finished. My mom died unexpectedly in 2015 from heart failure so that is always in the back of my mind as well. It seems like the general consensus is to leave it in until the end. Not what I wanted to hear, but it makes sense. My rational side knows what its there for but my emotional side wants to be "normal" as quickly as possible. Having triple positive really makes it feel like a marathon. I just want to sprint to the time where I can say I HAD cancer.
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Cowgirl - that's how I feel. I'll leave it in as long as I'm getting Herceptin every 3 weeks, but as SOON as that's over - out it comes.
And Herceptin in PILL FORM?! WHY can't we have that here?!
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I think the Herceptin available in Europe is not pill form, but rather it is injectable, called Hylecta. It looks like it is FDA approved only as an adjuvant treatment in the US, which may be a reason it is not being discussed often for most TP patients with tumors large enough to be given multi-drug chemo regimens and/or Perjeta, which would be done neoadjuvently. Also, it is a standardized dosing rather than a dose calculated by BSA (Body Surface Area) so some oncologists may be reluctant to use it.
https://www.breastcancer.org/research-news/fda-approves-injectable-herceptin
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