TRIPLE POSITIVE GROUP
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Hi Smichaels11
This happened to me 4 times throughout my whole treatment. It really dragged out everything but I was able to get every single Herceptin-eventually. It was very scary having echoes and MUGGAs before almost every infusion. It started with the second infusion when the lvr went down more than 10%. After a month was ok for third infusion.I ended up having several Taxotere and Carboplatin without Herceptin but my oncologist calmly kept assuring me that I had a full eighteen months to complete all the Herceptin. This was all in 2018-19. I have had my heart checked twice since and am told all is well. Hang in there, I’ll be thinking of you and sending good vibes your way.
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Hello, all,
I’ve got my third TCHP in a week, and I’m already having a hell of a time with the side effects to my eyes, I’m assuming from the Taxotere. Burning and stinging, eyelid puffiness, soreness, sensitivity to light, getting styes constantly. Has anyone found any drops or supplements or other things that help?
Thanks in advance! This board is so helpful!
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Anna - Taxotere is very drying, and can cause what is referred to as Taxo-tears. Lubricating eye drops may help, but I’ve also seen some need stents in their tear ducts. You might want to ask your MO for a referral to an ophthalmologist.
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Anna -
I had really dry eyes in the beginning and used the drops. Thankfully, I'm in hot, humid Atlanta, and most of my bad dryness went away once we got to summer. I had an issue all through chemo with my eyes getting dry in the night and then watering like crazy for the first hour or two after I got up. I got one small stye and I used a saltwater/raw honey mixture to get rid of it. That's what I've always done for styes and it works great - get true raw honey from a local producer OR a jar of manuka honey. I have both - you can get good Manuka from Costco. I drop in my eye directly with a dropper and then rub some directly on the stye as well.
Kris
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Special K - interested in your wisdom! I got my pathology back from my mastectomy. The left side was totally clear. Right side with the original tumor had less than 1% of the original tumor bed with cancer cell evidence. Totally clean tissue otherwise. They biopsied 4 lymph nodes - in the OR, my surgeon was told the pathology showed no evidence of cancer so she didn't do any kind of dissection but the in depth pathology showed some microscopic cells still in a node. Based on that - is the MO going to recommend Kadcyla, do you think? Opinions on that? And should I switch from Herceptin? I'm a little nervous about the Kadcyla containing the chemo drug. I know lots of people have said they had no additional side effects when they swapped, but I'm interested in your opinion. And others - if you want to weigh in. I see him next Friday (9/4).
Kris
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I suffered terribly from the irritated, watery eyes during TCHP. I used some lubricating drops, and it helped a little, but really, it was a struggle. Thankfully it did go away after I finished.
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wahoo - your pathology report sounds pretty good, it is difficult to achieve pCR with triple positive, I believe mainly due to the ER+ aspect. Were you strongly ER+? You are very close to a pCR, so hang on to that.Was there just ITC (isolated tumor cells) in one of those removed nodes? In the absence of chemo, ITC in a single node with additional nodes removed and clear would likely be considered node negative. It is possible that you will get a recommendation for a switch to Kadcyla, but it might be worth exploring radiation to the breast and axilla as an alternative with continuation on Herceptin. Or the recommendation may be Kadcyla and rads. Or no rads. I will be curious what the recommendation is along with the supporting rationale
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SpecialK -
I was strongly ER+ in the original biopsy, but they didn't say if there was a change from the surgical pathology. I'll see the surgeon next week for my follow up. I believe she said ITC? Lost of info over the phone so sometimes hard to absorb it all. The breast tissue in the tumor bed showed "less than 1%" of tissue with ITC. That I do remember. And everything else around it was totally clear. Definitely said that.I'm pretty sure I will have radiation (I see him again in September) because I had a positive node from the beginning. So maybe they will keep me on H/P. I'll find out next Friday - I see a lot of people on the Kadcyla site saying they don't make the switch until after radiation, so hopefully that will be the case. I REALLY don't want an additional 14 infusions at this point. Bleh.
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I'd keep in mind that you're not locked into Kadcyla. If it becomes too much you could always make the switch back to HP.
I was totally dreading Kadcyla but, it's been pretty easy so far. 🤞🏻 that it continues like that
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wahoomamma,
I got my pathology back and it was clear apart from a single focus lymphovascular invasion by carcinoma seen adjacent to one axiliary lymph node (9 were removed) I saw my MO today and she will be starting me on Kadcyla (for a year) a couple weeks after my drains are out and before I start radiation, she said it was fine for me to have it during radiation. She also advised that i would be getting Zoladex, Anastrozole and Zometa at some appropriate point in the future.
Now i just want to stop oozing whatever this stuff is so i can get the drains out, next week will be week 3 uggh .... I WANT A SHOWER
when i do, i am sure i will be in there till the water runs cold and my skin turns pruneish.0 -
Jettie -
I TOTALLY feel you on the shower! I'm sponge bathing and using the wand to wash my hair but it's not the same. I see the surgeon for my post-op on Wednesday. I'm under 30 cc on one side so hoping she at least takes that drain. The right is still too high, but definitely coming down. I watch it like and anxious parent! I'm guessing the MO is going to recommend Kadcyla, but I'll find out on Friday. I'm going to ask that we wait until I'm done with radiation - just because of potential side effects. I've decided that I'm not going to do an AI - I'm working with my naturopath on some other options.
I hate that Kadcyla is another 14 infusions. Stretching it out even longer.
Kris
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For you ladies with drains - activity increases output, particularly arm movement. The flip side is that if you increase activity too much after the drains are out, you risk a seroma, so even if you feel fantstic - take it easy! It is hard to find that happy medium that allows for drain removal at the earliest opportunity, and no subsequent buildup of fluid on the inside. I hear you on the shower situation - I have had drains with five different surgeries - while they serve an important purpose, they really aren't that much fun...
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SpecialK is right! I didn't know about the role of increased activity, and my drain was in there forever! Plus, yep, I got a giant seroma that had to be drained by my surgeon before I could start rads! Yuck.
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"hate that Kadcyla is another 14 infusions. Stretching it out even longer."
Is it that much longer for you? I had 6 TCHP and 1 HP before switching to Kadcyla for 14. I would have had 11 HP if I stuck with that so at most I'm dealing with and extra 9 weeks.
However, I do know some MOs are different. Some won't start Kadcyla until after Radiation. Others deduct the HP time from the 14 cycles.
I know this doesn't help but, try to wait and, see what your MO suggests instead of getting yourself worked up.0 -
Hi everyone. I haven't been on for a bit. Glad to see posts from SpecialK and other familiar names. Just wondering if anyone here has a doctor they like at MD Anderson and wants to post it here or private message me. I finished Herceptin at the end of 2018 and my oncologist isn't on my portal anymore so looking for someone new for my next annual visit. Take care.
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triple ph - hey! You might PM minus two or illimae, they are both in the Houston area, both are Her2+ but have mixed hormonal receptors, and I believe are treated at MDA.
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Hi, I'm kind of new to the community although I've been lurking here since I was diagnosed in May 2019. I've triple positive and my lobular tumor was at least 10cm, possibly more but my doctors seemed to avoid telling me other than saying it was 'massive'! It might have looked larger because of the lobular nature of it which meant it spread out in lines. I've had a lot of treatment and I'm hoping that's it now but will be forever vigilant of symptoms I expect. I'm now at the stage I'd like to give back to the community so happy to answer any questions based on my experience. I noticed there was a recent question about pCR. I was very close to a pCR - 2mm left at surgery and only one or two isolated tumor cells which I was told is as good at nothing. Because of this, my oncologist kept me on Herceptin and Perjeta for the rest of the year. I hope that helps. Please feel free to PM me if you have any questions specific for me. While I'm here, a big thank you to this wonderful community!
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Thanks for the info. Take care
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Morrigan - thanks! I'm not worked up about it - just ready to be done. And in my mind, I'm thinking April - but it would be the end of the summer if I have to do another 14 infusions. My oldest son and his wife are having our first grandchild any day now and I'm ready to focus on that instead of cancer!
Special K - define "increased activity" for me! My surgeon said I could walk if I wanted (just not "strenuous"). I haven't been working our or anything, but I'm moving my arms around lightly to make sure the muscles don't get tight. My fluid output has been decreasing steadily every day. I definitely don't want to endanger that, but I'm not sure what you mean by that!
Kris
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wahoo - I probably did around the block walks - but also a lot of resting, and I have been fortunate not to be a “juicy" post-op person. I usually had drains pulled in a week or so. I think picking things up and carrying them, such as unloading grocery bags, repetitive motions like sweeping, and pushing/pulling actions seem to exacerbate, but probably not walking. Maintaining range of motion while not overdoing is a hard line to straddle, but also remember that just because you can doesn't always mean you should.If your drain output is decreasing I think you're fine. As I said earlier, drains are a pain but they serve a necessary purpose. The one exception to timely drain removal for me was one of my last surgeries. My husband and daughter got me a kitten - like two days after surgery, on a Sunday, and then left me alone as they returned to work for the week. I ended up with the drains for an extra week because I was focused on the kitten! In his defense, he was super cute! His fourth birthday coincides with with my 10th cancerversary this month!
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I dropped to just above 40 ejection fraction after five months on Herceptin. I was paused for a couple months and resumed and finished. I was on heart meds for two years and have regained almost every bit of heart function. It took about six years but it happened. I am 12 years out. I was scared at the time too but here I am. Hope you find some encouragement in that. Take good care.
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Special K - Hilarious about the kitten! I got one out on Wednesday and the other is in until (hopefully) Friday. Otherwise Tuesday. This one is the side where the cancer was and the lymph nodes that were removed. It's still decreasing, thankfully.
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Since we are somewhat on the subject of pCR and the various treatment options following TCHP, could someone please tell me about the role of Nerlynx (neratinib)? My MO mentioned it as a possibility I think either after Kadcyla (if I don’t have a pCR) or after the year of HP (pretty sure it was the latter). Is Nerlynx standard in either situation? I haven’t seen it mentioned much around here and am curious about its role
I’ve also been wondering whether anyone ever gets Kadcyla even if they have a pCR, since it’s so effective at preventing recurrence. Why isn’t Kadcyla part of the plan regardless of pCR? Is it just considered over-treatment?
Thanks in advance!
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I got kittens just about the time I was diagnosed, so had them kind of all over me during chemo and after surgery. They are cute. But all this talk of kittens and no photos! (I need to figure out how to post photos myself)
A little funny for folks who would understand. Today is my birthday. My husband was out running errands and stopped at the pharmacy. On the bag holding my zofran, the pharmacist wrote, "Happy Birthday!"
Anna: I think neratinib hasn't been studied yet post kadcyla, so we don't know. I suspect if I am unable to finish the kadcyla I will switch to it, but not sure about if I finish all 14 rounds.
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dragon - here is the drain extending offender! You can post photos directly from your phone library or saved photos on the drive of your computer by clicking or touching the photo icon above this text box that looks like mountains in a little frame. It will prompt you to choose a file, then will upload and place the photo on your post. I have found on my phone it is better to place any wording above the photo, it's harder to place it under.
For Nerlynx, my understanding is that it is used for early stagers after your initial targeted therapy is complete, whether Herceptin or Kadcyla. I don't think there has been any long look at use post-Kadcyla because the substitution of Kadcyla for Herceptin for those without pCR is relatively new. Nerlynx is used as an extender to prevent recurrence, and while statistically significant in terms of benefit, it amounts to roughly 4% better than placebo. I believe there have been some issues with continued Big D for some patients so I know some have discontinued it.
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Ah, I would love to get a cancer cat as a reward for all this but I’m so allergic. SpecialK, that baby is beautiful!!!! I have a nice but very old dog who dribbles pee everywhere. Not exactly a cozy snuggle buddy. I will have to settle for a hot water bottle with a furry cover!
🙄😂🤣
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"I think either after Kadcyla (if I don’t have a pCR) or after the year of HP (pretty sure it was the latter). Is Nerlynx standard in either situation? I haven’t seen it mentioned much around here and am curious about its role"
It's not standard yet but, I'm in a Triple+ Group and a Kadcyla group on Facebook and I see more and more people going to Nerlynx after H/P and even Kadcyla.
When I was first diagnosed I saw it listed and asked the 3 MOs I visited about it. One said maybe, we'll talk about it when we get there. Another said it's not part of the protocol but, that could change this year (I think they update the Protocol every year). The final MO said NO! She said she had one patient on it and the Diarrhea was so bad she would never prescribe it again (I did not go with her).
There's a Nerlynx board here and there's a Facebook Group as well. The only SE that's ever mentioned is Big D and, from what I've been told you have to work your way up to the full dose (6 pills/day).
I think the 4% is worth it, at least trying to get through it. So I'm going to ask for it after Kadcyla. It may not matter with the Kadcyla because there's no study but, i figure it couldn't hurt to at least try it.
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anna - the kitty came late in the game for me, I had a lot of surgery - recon issues - in the years after my BMX and chemo. He arrived about five years after diagnosis and initial treatment, but I do have a tanzanite and diamond ring that was a post-chemo congratulatory gift to myself. Not cuddly, but really really sparkly, lol! Whenever I wear it I am reminded that I got through an extremely challenging time. We also have an elderly dog, and he and the car are besties. It was funny, during chemo the dog came into the bathroom with me every single time, and turned around and put his back against the front of my legs - like he was holding me there, or bracing me. He was very concerned!
morrigan - I have a bit of a kitchen sink mentality as well, if you have something that can help, yes - give it to me. Perjeta, Nerlynx, and Kadcyla were not approved for early stage use, Herceptin only had been for a few short years, when I was diagnosed. So, I did a Her2+ vaccine trial When I was done with Hercepti, along with fluffqueen who posted not long ago.
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A couple of things: I did almost a year of Nerlynx with minimal D. Titrated up from 2 to 4 a day, and stayed there. My Onc seemed to think that, at 128#, 4 was enough to give me protection without terrible D. Plus I started with Colestipol which made it very reasonable. Don't let the fear of the side effects overwhelm you. I ended my year maybe 3 weeks early in order to get my knee replaced.
And 2 years ago, just after chemo, my Dexa scan showed me as osteopenic, so I had 4 Prolia shots over 2 years, uppped my dairy and calcium intake, and continued my work with a coach, doing strength and mobility training. Then had another Dexa scan this past July. When I got my results from the Onc in August, he was as happy as a cancer doc can be. I gained 33% bone density in 2 years, am now in the top 99% of my age group, so no more Prolia. No side effects from it either, by the way. I'll be on Letrozole for another 3 years (5 total) with minimal side effects there as well. See my stats below- 2.5 years ago I had a long road, and now my MO tells me that he uses my story to encourage newly diagnosed triple positive ladies.
No kittens in this post, but some damn good news!
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homemadesalsa - wonderful news!!! And how amazing you are an example to others following behind you. You are someone’s beacon of hope!!
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