Sep 5, 2021 09:59AM YesIamaDragon wrote:
I wasn't diagnosed in 2020 but I did start and finish my Kadcyla in 2020
This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.
Posted on: Sep 4, 2021 04:34PM
I am starting a NEW post for the HER2+ triple positive gals that are truly early stage. I plan to d/c the Triple positive former posts that I had chosen to be on since that thread has gone on for 10 years! Plus the entries are getting lengthy about each other's surgeries, and too much "past" advice from participants which do not apply to approaches for Her2+ current regimens for small tumors.
I would like to start this post about smaller early stage HER2+ treatments that people have started on in 2020-2021 as drugs have changed and treatment ideas like de-escalation of Herceptin, etc. for some selected breast cancer patients.
Please jump on this new post if you have been diagnosed in 2020-2021 and what current therapies for early stage BC are being proposed for you if you are triple positive and early stage.
Posts 1 - 30 (33 total)
Sep 5, 2021 09:59AM YesIamaDragon wrote:
I wasn't diagnosed in 2020 but I did start and finish my Kadcyla in 2020
Sep 5, 2021 10:20AM - edited Sep 5, 2021 10:22AM by AMG2
I was diagnosed in 2021, am triple positive, and thus far, my therapy is: surgery, weekly taxol +herceptin (just started), next up, a bit of radiation, and then herceptin for the balance of the year followed by hormone blocking for 7 years.
One publication I've read indicates that for cancers such as mine -no lymph involvement, but with Lymphovascular infiltration, the chemo regimen I'm undergoing is essential, and should allow me a much better chance of remaining cancer free. I'm really glad I read it, because so far, it's only been 1 week, and I'm not tolerating the taxol as well as I had hoped I would, but I do know I just have to get through this.
I'll stick with both sets of threads, this one and the old ones. I've gotten really good, comforting, helpful info from the older ones, too. I'm probably too new to this to not want to determine what I can expect to experience from the experiences of others who have been through it. Hope that makes sense, and thanks.
Edited to add: I think my tumor qualifies as small: 1.2 cm? Don't know if that is what you have in mind, though.
Sep 5, 2021 11:37AM Racheldog wrote:
Yes, thank you for responding and I would like to hear from people about those with early stage and their current regimens. I stopped the other thread because too much research has been extended to newer agents for HER2+, even ideas about surgery vs. mastectomy, etc. in 10 years.
I had a very similar path reports to both of you above. I opted for lumpectomy as well, but did the radiation a bit out of sequence. I started on Kadcyla and from a major University MO was scheduled for 8 treatments. Kadcyla is T-DM1, a drug conjugate which is part chemotherapy and part Herceptin. I am older and did not want to go through taxane based treatment. I went into the Kadcyla like a cheerleader but after (4) infusions had to quit because of lung issues. Unreal since I have never had issues with my lungs, ever. The NP at the University was seeing more problems with Kadcyla. Congrats to those who made it through, I know others who also had a rough time.
After Kadcyla, I took a break and did WB radiation in between. And now I am re-challenging the Herceptin only monotherapy, have done 2 infusions. The reason I started this NEW thread is that there is research and data that (6) months of Herceptin is not inferior to one whole year. Greatly reduces the cardiotoxicity. So, would like to hear if other HER2+ patients are discussing that regimen with their oncologists? In selected patients?
Jump on ladies, love to hear everyone's plans b their MO for those with early stage Her2+. Granted age at diagnosis and plans may well be different.
Sep 5, 2021 12:08PM - edited Sep 5, 2021 12:09PM by 1982M
I am 39, had a 8mm triple positive tumour recently removed with no positive nodes and no lymphovascular involvement noted. I did have surprise DCIS - multifocal. I started with lumpectomy and radiation but am now thinking mastectomy.
I haven't asked to my MO but should know in a week. I am in a small Canadian city so we shall see what the plan is. I'm guessing they will recommend 12 weekly taxol with 12 months Herceptin and then tamoxifen. I'll let you know what happens.
Sep 5, 2021 12:18PM Racheldog wrote:
1982M---wow. Exactly my diagnosis as yours, caught very early, except my Grade was 3, but all the same! But I am older. I went back and forth on the mastectomy too but stayed with lumpectomy and radiation. Please keep us updated on the chemo plan for you.
Sep 5, 2021 06:19PM Redcanoe wrote:
What do you mean by "early stage"? Officially early stage means anything other than stage four but your post is talking about small tumours. There are many early stage triple positives with large tumours.
Sep 5, 2021 07:42PM Racheldog wrote:
Technically, and by definition, early stage breast cancer that has not spread beyond the breast or axillary lymph nodes. This includes ductal carcinoma it situ and stage 1, stage 11A, stage 11B and stage 111A breast cancers.
The previous "Triple Positive Group" post is approximately 10 years running and the entries became extremely lengthy, comparing surgical advice, treatments, etc., from other patients that were treated years before. There are new and evolving chemo, new trials, more current trials, and researchers continue to look for new treatment plans for very early stage BC patients. Including de-escalation of some modalities. Depending on patient selection. That is the purpose of starting this new thread.
Sep 6, 2021 02:26AM Jelson wrote:
Racheldog - when I was diagnosed with DCIS in 2009 they were not testing those diagnosed with only DCIS for HER2+. I was invited to participate in a clinical study of the benefits of herceptin for those with DCIS and HER2+. I declined to participate because by the time I met with the MO involved in the study I would have had to had my tissue tested for HER2+ and switch radiologists to the MO's hospital and it would have delayed my radiation. I have always wondered about the outcome of the clinical study - whether it proceeded to conclusion and what that conclusion was. As far as I know the protocol is still not to test straight DCIS for HER2+.
Sep 6, 2021 03:53AM Melbo wrote:
you might want to specify in the title that you are specifically talking about triple positive and not any HER2 positive cancers. (I’m not even sure you can edit that, but it’s a little misleading.
Sep 6, 2021 04:22AM DebbieM1958 wrote:
Hi - good morning - I am triple positive early stage and the proposed plan is TCHP (Taxotere, Carboplatin, Herceptin and Perjeta). I have my first chemo session this Thursday Sept. 9th. Nervous about everything but ready to get started so I can put this all in the rear view mirror. My plan is for 18 weeks, 6 treatments every 21 days. Would love to hear and share experiences with others like me.
Sep 6, 2021 09:42AM - edited Sep 6, 2021 09:44AM by moslmic
Hi, I'm triple positive, initially diagnosed with DCIS(April 2020, 44 at diagnosis) whe removed there was a 2.5mm invasive focus. I was offered chemo, my oncologist said it would be my choice as the invasive was so small, I did take it. To date I have had lumpectomy, sentinel node biopsy, 12 weeks Taxol, 17 rounds of Herceptin, 20 sessions of radiotherapy and I'm currently on Tamoxifen for at least 5 years. After my last Herceptin I have a consultation to discuss Neratinib for 12 months.
Sep 6, 2021 10:03AM Racheldog wrote:
Jelson--Thx for input, and yes, back in 2009 treatment plans and testing were so, so different. Glad you have done so well!! That is great news.
Melbo--do not plan to change the Thread title . The people answering are all current in their plans. The previous Triple positive group goes back way, way to far to have any new updates. Patients would be better served to not even look at internet articles that are less than 3-4 years old.
Moslmic---yes, Kadcyla and now the Neratinib are relatively new agents and this is exactly the reason I started this new thread for early stage folks. Keep us posted on how you do on that if your MO starts you on that plan. How did you do on 20 rounds of Herceptin?
Also, it helps that gals are putting in their ages at diagnoses. Thank you. There are research articles submitted on how age at diagnosis is relevant to treatment choices.
Sep 6, 2021 11:04AM AlwaysMeC wrote:
Please let me know if the following seems like it belongs in the alternative threads. I'll delete the comment.
Has anyone used THC specifically for the benefit of helping to inhibit HER2 cancers? I don't know if it actually treats it, but I have read that THC prevents dimerization in a similar way to Perjeta. I've read a few studies and here's one that stands out the most to me.
Sep 6, 2021 11:27AM Racheldog wrote:
AlwaysMeC---Interesting. No, I have not heard about any relationship between THC and Her2+ inhibition. I see you are early on in diagnosis and yes, even though I am going through conventional treatment now, I am always attune to hearing about alternative treatments. I have not started the AI drugs yet as I chose to do my modalities sequentially and not concurrently, but that was me.
I am strongly ER+ and HER2+ and (again, I am older than some posting here) and might look at diet, exercise, DIM supplement, etc instead of the AI drugs.
I did see the Mayo Clinic Florida researchers (2019) were studying a a vaccine for Her2+ breast cancer combined with Herceptin to help to prevent disease recurrence. I plan to ask that of my MO on one of my next visits. Has anyone discussed the vaccine with your current MO providers?
Sep 6, 2021 11:29AM AlwaysMeC wrote:
My oncology team suggested thc to relieve muscle pain, and I stumbled upon this article while doing research and waiting for my cannabis card.
The link in my first comment is the study the article refers to.
Sep 6, 2021 11:33AM AlwaysMeC wrote:
Racheldog, I too am interested in vaccines. I don't want to change oncologists because I am comfortable with the team, but he doesn't participate in clinical trials, or at least doean't promote them. I may consider switching to a colleague of his who does, if there is something I feel worth trying.
Sep 6, 2021 06:24PM littlecheese wrote:
I was diagnosed in March of 2020, right when COVID hit. My MO was able to get 17 Kadcyla treatments approved (based on ATEMPT trial). I handled the treatments very well, with no side effects.
Sep 7, 2021 08:06AM SpecialK wrote:
I am not being treated in 2021 but wanted to add some info about Her2+ recurrence prevention vaccine trials. I did participate in one, a peptide vaccine trial similar to the one referenced above at Mayo. The Mayo trial above is a Phase I, It is important to understand how these trials work - specifically for this type of vaccine, and clinical trials in general. For most of these early trials (Phase I and II) there are control arms who do not receive the vaccine. These are blinded trials so you will not know if you are receiving vaccines or not until you have reached the five year point, you have a randomized 50/50 chance. Also, some of these trials enroll participants after they completed active treatment - the goal is to develop a vaccine given with Herceptin, but that may not done in the trial itself. Other trials are looking for a specific set of parameters for enrollment or exclusion. Many trials are for advanced stage patients only. It important to note is that some peptide vaccine trials are sorted by HLA typing, similar to organ transplant. Different agents are being trialed on either positive or negative HLA typing, so you may be excluded from a trial by virtue of this, then you could end up in the placebo arm even if you have the correct tissue type. My point is that there is no guarantee that you can enroll in a trial if one is available, and no guarantee that you will get a vaccine even if you meet the enrollment qualifications. There are currently 94 trials listed for Her2+ vaccines on clinicaltrials.gov, the majority of which are closed, terminated, or no longer recruiting. Of the nine that are open and recruiting, one is for DCIS, three are for advanced stage only, one is for concurrent use of Keytruda, two are for those who have had neoadjuvent chemo with residual disease at the time of surgery, one is for those that have not had surgery yet, and one for a dendritic vaccine but is only recruiting 30 participants at one location in Tampa.
Sep 7, 2021 08:42AM Racheldog wrote:
Thanks for the input. Yes, the one at the Mayo Clinic in Florida started in 2019. I still plan to ask my MO about current updates.
Sep 7, 2021 12:44PM SpecialK wrote:
Rachel - the Mayo trial was a Phase I and I don't see any info yet on a Phase II for what that particular doc - Dr. Knutson - is looking at even though it looks like they have received some funding from the Dept. of Defense for ongoing research. The frustrating thing about many of these trials is the timing in regards to the inclusion/exclusion criteria. The Phase II vaccine trial I was in required treatment completion of Herceptin, but you had to enroll within six months of your last infusion. If the recruitment timeline doesn't fit an individual's treatment timeline, one is out of luck.
Sep 14, 2021 06:14PM - edited Sep 14, 2021 09:14PM by SmoothOperator78
I was diagnosed in July 2021. Triple positive. Stage 1A (11mm IDC with 20% DCIS. 0/5 lymph nodes).
My oncologist and a second opinion from a research hospital both recommended the exact same regimen: 12 weeks of Taxol & Herceptin. Radiation. After radiation, AI or Tamoxifen for 5 years. Herceptin every three weeks to finish out the year. Consider more endocrine treatment beyond 5 years (preferably AI).
Before they confirmed no lymph node spread, my oncologist was suggesting THP Taxol, Herceptin, and Perjeta OR Taxotere, Carboplatin, Herceptin, and Perjeta TCHP. Once the nodes were designated negative, it was TH only as the options and I was even given the choice to do H only due to neurological issues.
My third cycle is tomorrow and I'm doing great so far.
The study to read up on is APT trials. It's phase 2 and has a recent follow up published.
Sep 14, 2021 07:57PM 1982M wrote:
I got my plan today. 8mm IDC on left and multifocal high grade DCIS found in margins.
I’ll start 12 weeks of Taxol & 17 doses of Herceptin every three weeks. Tamoxifen for 5 years.
Kind of in an ambiguous space of over mastectomy vs re-excision of site for DCIS plus radiation.
Sep 14, 2021 09:39PM Racheldog wrote:
Thanks for the recent postings of your plans. I opted not to do the Taxane bases treatment and that is why I went with the Kadcyla. Did radiation. I am now finishing up just the herceptin monotherapy for shorter duration and I have two MO that are in agreement with that. Then next up the AI drugs.
Like yourself 1982M, I was in a quandry about mastectomy but stayed with the lumpectomy/radiation since it was a small tumor.
Sep 15, 2021 10:15AM Middlemarch12 wrote:
Hi, I was diagnosed at 46 w/ extensive high-grade DCIS, ER/PR+ in May 2021. Had to do a single mastectomy but I opted for a double, and they took 2 lymph nodes, both clear. Pathology then found 5mm tumor of IDC, ER/PR+ and HER2+, so I had a whole new diagnosis after surgery :(
I was offered 12 weeks of Taxol, a year of Herceptin, then I think the idea is 10 years of tamoxifen. But there was some choice involved ... my case was presented to a committee and some oncologists felt due to the small tumor size I could skip the chemo.
Was very confused so had a long talk w/ the head oncologist at Lenox Hill in NYC (Francisco Esteva) who is a HER2+ researcher and he explained a lot about the gray area around small HER+ tumors. I decided to do the Taxol and Herceptin, just started yesterday, but his plan is to be proactive about turning down the Taxol dosage if I have worsening neuropathy ... his feeling is that the Herceptin and Tamoxifen are most important, and the Taxol is being used mainly because current treatment guidelines don't usually let you do Herceptin w/o chemo. But not because Herceptin requires chemo to work, just because it's never been approved without it, because there was no ethical way to test it. Or something. I'm really not great at science AT ALL so just writing my understanding of all of this so far - certainly correct me if I'm wrong!
I did ask about doing 6 months of Herceptin instead of 12 months, since I had read something about that, but I believe his opinion is to still stick to 12 months if I am tolerating it.
Sep 15, 2021 11:09AM Racheldog wrote:
Middlemarch, thanks for posting. You are younger than myself so treatment decisions are always based per patient. Can you post your tumor size, etc on your profile? Margins clear, etc? Or maybe it was just the DCIS? I wish you well on your own journey. The 6 month non-inferior studies have been 2019-2021 and I met with my University based oncologist again and she qualified about those studies. I will still do the 6 month Herceptin and then the AI drugs. I am getting my first echocardiogram very soon since being on the Herceptin monotherapy.
Smoothoperator: it has been my understanding that Perjeta was only added to Herceptin if there was lymph node involvement? They had suggested that for you?
Sep 15, 2021 12:43PM Middlemarch12 wrote:
Thanks I just updated my signature w/ details!
Sep 15, 2021 05:01PM 1982M wrote:
Middlemarch12: How was your first treatment? I haven’t got a date yet but should be within the next week. Were are close in age (I’m 39) and similar diagnosis and treatments. I didn’t know about my DCIS until after my lumpectomy. I’m def leaning towards left sided mastectomy to avoid radiation.
I also asked about 6 vs 12 but my oncologist felt more comfortable with 12 bc the evidence was still limited.
Sep 15, 2021 05:57PM Middlemarch12 wrote:
Hi! Yes we really do have similar diagnoses! Especially with the post-surgical surprises :( I had the first chemo/Herceptin yesterday and it was a long day but went well - really very uneventful compared to how nervous I was. They give you a steroid as part of the treatment, and I think that's all I've been feeling so far, and it feels strangely good ... I mean the last thing I was expecting today was to be full of energy and getting tons of things done, but I guess the fatigue will kick in once that wears off so we'll see. What was the size of your IDC tumor? I am just curious if it is more or less than 5mm, since they seemed to see that as a cut-off point for chemo, but it also seemed arbitrary depending on your age.
Sep 15, 2021 09:31PM 1982M wrote:
I’m so glad your feeling well! My tumor was estimated to be 1.5cm, biopsy showed 8.5mm and final pathology said 8mm. The articles (on here prob) I read said 8mm-1cm showed benefit of chemo and Herceptin but under 8mm it wasn’t as clear. My oncologist said 5mm and over got chemo.