TRIPLE POSITIVE GROUP

SpecialK · August 2020

There have been a number of members on this thread over time who have experienced a delay or discontinuation of Herceptin due to a drop in LVEF. Some drop is expected, but they are generally looking for a 10 point drop, or a 10% drop, or a drop below 50 on your quarterly ECHO or MUGA when making a determination on continuing with targeted treatment. I say generally because these type of tests are performed by humans and they are somewhat subjective in terms of placement of the cursors for measurement. Sometimes you can delay and then resume, some have to discontinue completely, and some continue with cardio protective meds.

ElaineTherese · August 2020

My next-door neighbor had to discontinue Herceptin because it damaged her heart, but she had a pre-existing heart condition. She made it through four TCHPs before she had to quit. She won't be doing the full year of Herceptin, either. She's just hoping for the best.

Taco1946 · August 2020

I'd guess that the conflicting messages are because two different people interpreted the results. Heart damage is one of the possible SE's of Herceptin. Try not to panic until you see your MO - or maybe call him/her or your nurse navigator.

Smichaels11 · August 2020

I had an appointment with the cardiologist today. He put me on 3 heart meds. I will have an MRI and EKG on Monday, followed by another echo next Thursday. Those results will determine if I can continue with Herceptin as planned. He said he's hopeful that there won't be a delay in my treatment. Unfortunately, he said that those heart meds could be something I am on for the rest of my life. Ugh, now on top of cancer I am worrying about my heart as well. Some days it's too much - Today is one of those days.

I appreciate you ladies offering feedback and support

YesIamaDragon · August 2020

If it is from the herceptin, that is usually reversible with holding it. Fingers crossed!

Taco1946 · August 2020

Smichaels - you are right. Sometimes fighting cancer is a b_____! Try not to get too far ahead of your skis.

wahoomama87 · August 2020

All -

Had my mastectomy yesterday and am waiting on the results of the breast tissue biopsy - if they have to switch me to Kadcyla - looking for input from people that have made the swap from Herceptin in terms of any side effects, issues, etc. Thanks! Just want to be prepared.

Kris

SpecialK · August 2020

wahoo - congrats on getting the surgery behind you, fingers crossed for a good path report. Here is a link to a thread for exactly the situation you are asking about - switching to Kadcyla for residual cancer after neo chemo:

https://community.breastcancer.org/forum/80/topics/874047?page=1

morrigan_2575 · August 2020

I'm on Cycle 3 of Kadcyla and, haven't had any major SEs, I feel fine.

My WBC and Platelets have dropped and, I had to get 2 shots of neupagen last week to boost my WBC/ANC.

I got a slight fever (99.4) once each cycle (around day 4 or 5). I took Tylenol and, it went away. I got a nose bleed once during Cycle 1 and, a foot cramp once during cycle 1. I have some minor neuropathy in my left foot, I've been taking Glutamine and that does the trick

Jstarling · August 2020

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.

AnnaTheBrave · August 2020

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!

SpecialK · August 2020

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.

wahoomama87 · August 2020

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

wahoomama87 · August 2020

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

Fab4mom · August 2020

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.

SpecialK · August 2020

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

wahoomama87 · August 2020

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.

morrigan_2575 · August 2020

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

Jettie · August 2020

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.

wahoomama87 · August 2020

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

SpecialK · August 2020

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...

ElaineTherese · August 2020

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.

morrigan_2575 · August 2020

"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.

TriplePHtown · September 2020

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.

SpecialK · September 2020

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.

InfusionConfusion · September 2020

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!

TriplePHtown · September 2020

Thanks for the info. Take care

wahoomama87 · September 2020

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

SpecialK · September 2020

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!

mbutterfly · September 2020

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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