TRIPLE POSITIVE GROUP
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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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Fantastic News Homeadesalsa
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homemadesalsa - good to see you! Great news!Did your onc discuss a single Reclast infusion at what would have been your next scheduled Prolia? There is some thought that doing this can stave off the small chance of fracture from stopping. I had six years of Prolia, didn’t have a Reclast infusion, and had a similar experience as you - great recovery of density and no side effects. I was osteopenic prior to breast cancer, which worsened on letrozole, but my Dexa after stopping Prolia showed no reversal of the gained density, so yay! I will be curious to see what the next one says in January as it will represent a greater time span without Prolia.
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Quick side effect question - I've noticed the two times I've had just Herceptin/Perjeta (I'm done with chemo) that my ears feel "stuffed up" the first day. Is that an actual thing? I did find out today that I will NOT switch to Kadcyla - so I'm glad about that. My chemo response was as close to NED as you can get, according to my MO, so he doesn't feel it's warranted. He presented my case to all his partners and they were unanimous in agreement. So we're staying the course with H/P.
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Hi all,
I thought I could report myself after some time. This thread was a life-line for me during my treatments. I moved with my life somewhat, but I have to admit I still think about cancer a lot and jump at any pain that shows up.
I had my exchange surgery in March 2020. This was a bit stressfull as my surgery was on the day the nation-wide lockdown was announced (I am in Europe). It was the last day they were doing this kind of non-essential surgeries. Luckily I had no complications and I am happy with the implants.
I will be starting Nerlynx next week, so I am nervous about that. It's my last month to start it, since it's now almost a year from when I finished Herceptin.
I saw someone mentioning Herceptin injections a few pages back. Just to chime in - yes, we are getting the subcutaneous injections here in Europe. It's been administered this way for years here, it's the prefered way. (I would have to ask to get Herceptin in an I. V.)
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Hey JaBoo--good to hear from you. All good here in Central Virginia. I'd read on various threads on this site that hair should be back to normal around two years out from chemo, and I have to agree with that. I met a woman this weekend who went through this process in the last year, and it was nice to be able to show her where I was after two years.
Wahoomama--I don't remember stuffed ears but definitely a runny nose that year plus about four months afterwards, and it seems like that could be related.
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Ingerp -
Yes - I was assuming. It's strange because it's just the first 24 hours and then it disappears. It has to be related, though, since I've had it two times, exactly the same. Who knows?! Still jealous to see you living in C'ville!
Kris
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Sadly, I must report that my hair came back within a year but thinned again after I started AI's.
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speaking of hair...I have been off TCPH since December. I am on Kadcyla now but that’s not supposed to cause hair loss but boy is my hair coming in thin. I did start on Letrozole in April also which causes thinning. So far, I’m not able to go out without my wig and it’s been 9 months. UGG! I take collagen and biotin too!
Suggestions welcome
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I have no suggestions. I take collagen daily also - which I think has helped the hair come back in. I'm 6 weeks out and I have coverage all over now, but it's VERY short. I have never worn a wig, so I'll keep going with the flow on the hair. I am not on an AI - and will most likely not be taking one (my choice).
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Biotin?
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Some breast cancer patients have had success with Rogaine. I believe there's a formulation "for women."
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Check with your MO but this Holistic Plastic Surgeon has a few suggestions.
Apparently the laser hats/combs actually work 😲
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thank you for the suggestions. I watched the video and will try the rosemary oil. Hopefully won’t have to splurge on the laser light treatment
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My oncologist said Kadcyla shouldn’t cause hair loss, but could slow down growth.
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Didanyone have insomnia from Herceptin/Perjetta? I had my 5th HP only infusion this week along with my third week of radiation. I was so fatigued all afternoon, but I could not fall asleep last night. My RO told me to take Tylenol PM if I can’t sleep, but it’s just so frustrating. I’m exhausted and then bed time rolls around and I’m wide awake.
I’m switching to Kadcyla next infusion, so we’ll see how that affects me. I’ve always been a great sleeper. I stay active all day and avoid caffeine after noon.
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fab - insomnia is listed as a bona fide side effect for Herceptin, it seems as there is slightly less info for Perjeta as its use adjuvently for the remainder of the year with Herceptin in early stagers is relatively new. It is hard to suss out which side effect belongs to what when it is combined with chemo drugs, and then with Herceptin after chemo is done. Insomnia with Kadcyla is listed as a less common side effect - occuring in 10-29% of patients, but it is there is the literature.
On the hair issues - I agree that adjuvent therpaies can slow hair comeback down, but not for everyone. Again, hard to suss out what is causing what if you are also taking anti-hormonals. My hair was a bit slow to return, but then resumed normal fast growth rate once it did, even while on Herceptin. After about six to twelve months on anti-hormonals it started to thin. That said, I do have the genetic component for thinning hair according to 23andMe, and I am also getting older every year. This is the same dilemma that joint pain presents, is it the meds or age? I will say that the thinning appears to be permanent for many, so I would start intervention asap if you notice it. It may be worth a visit to a dermatologist, they often have some approaches that may help. Biotin may help, but be aware that it can skew some lab results, particularly those related to thyroid tests. Some have used the Rogaine - for men as it has a higher concentration of the active ingredient - but if you stop using it you lose the hair you grew. There are also many shampoos and thickening treatments on the market. I initially used Bosley, but I have seen a number of this site that used Nioxin. Here is a link to an article from Cosmo that discusses best thickening shampoos. I have an additional issue in that I am allergic to cocamidopropol betaine, which is in almost every shampoo - it is the thing that makes lather. It is a natural coconut derivative, and is also in bar soap and laundry soap. So... finding thickening shampoo has been a challenge.
https://www.cosmopolitan.com/style-beauty/beauty/g23339797/hair-growth-shampoo-thinning/
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I have definitely been experiencing some insomnia. Some nights I have trouble falling asleep. Others, I can fall asleep and them I am wide awake about 4 hours later. Of course, I'm also menopausal, so who knows which it is!
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I stopped losing sleep about 20 years ago when trazadone was prescribed for me. It really, really helps and it is not addicting. It's really an old 'work horse' antidepressant (that can be used at night) and because it is generic and has been around so long, it doesn't have all the buzz and whistles publicity that the drug companies spend pushing newer drugs have. This is not to say that the newer drugs are any less effective. Just sharing what worked for me.
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I have a question. I have round #4 of TCHP next week, and at this point sex has become prohibitively painful for me. There's only a small window each cycle when I feel like even trying, but now that's pretty much gone! My MO has explained that this regimen is really tough on all mucous membranes, but I'm also having hot flashes, so I would guess this side effect could also be due to hormonal changes. That has me worried about the next ten years of hormone therapy...Has anyone experienced this side effect during chemo and had an improvement when chemo ended? Thanks in advance.
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Anna - It is probably a combination of TCHP and hormonal changes causing pain. I think the chemopause alone may cause pain in some women, but TCHP takes it to the next level to the point where it's unbearable. Things got a lot better for me once TCHP was over and I had a few weeks to heal, but after about a year on Zoladex + AIs sex got painful again, though nowhere near as bad as during chemo. Sorry if this isn't what you wanted to hear, but on the upside there are some things you can do about the pain from AIs, and if you do tamoxifen instead you may not even have this problem.
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Surgery/Chemo Sequence Confusion: I saw Beesie's posts on surgery vs chemo first for HER2+ BC and I am trying to learn more about the criteria that determine the order. I just had an MRI today b/c I have 2 small masses totaling 3cm and 1 cm of calcifications and the BS wants to know if these are three small and distinct iterations or if they are linked by small strands which would mean my cancer is 4+cm. They say that my US and mammo show that my nodes are still a healthy shape--have not become irregular yet--but they will learn more from the MRI.
The BS pre-MRI is leaning towards chemo (TCHP) first, but if my nodes look good, should I be concerned if I don't have surgery first and have the nodes tested? (because otherwise, I won't know whether or not the cancer has spread out of the nodes or not) It sounds like if my mass is above 2cm, I should assume that it has spread even if my nodes look good and I should get chemo first no matter what.
https://youtu.be/J1HnRnX7-tg
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