Neoadjuvant TCHP - Post Results Here
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Welcome to our community, Primo! We're so sorry, it's frustrating to get two different plans of treatment. What was the Minneapolis oncologist's recommendation for replacing the Carbopletin? We hope you're able to get some answers and a clear treatment path, and we hope this community can be a source of support for you!
The Mods
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Primo - I'd suggest that you get yet another opinion. All doctors have their reasons, which you should expore, but also it's often reassuring to talk to another expert.
Is chemo planned before surgery or as the only treatment at this time?
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How many HPs after TCHP x 6? I thought it would be 11 more, correct? Have not had a chance to confirm it with MO yet.
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Lily - I had a total of 17.
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That does mean 11 more, thanks a lot for the (quick) confirmation
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Anybody switched to Kadcyla after TCHP? We mentioned it to the MO last week and she said no again. She said the benefit is for cases after TCH, not TCHP. P makes the difference, thoughts?
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Lily - I did not have pCR with 6 rounds of TCHP, so after surgery, I had 3 rounds of AC before rads (supposed to have been 4 but my system just couldn't take any more). Also I chose to continue with only Herceptin for the remaining 11 infusions. We briefly discussed Kadcyla, but my MO's only comment was he wanted to save Kadcyla in case there was a further recurrence down the road.
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MinusTwo, thanks so much for sharing your thoughts.
My wife did not have a PCR either
, although pre-surgery MRI indicated the tumor had been resolved and it has not been palpable since the 2nd TCHP. We were kind of disappointed even if the residual tumor was not too big (4mm), in Grade 1 and the ki-67 was less than 10%. But the BS sounded like it should not be a big concern as the chemo "killed the most aggressive cells and just left behind the most indolent cells". The MO also said it is less common to have PCR for ER+ and upcoming hormonal therapy would help further. However, we are still wondering if we should take a more aggressive approach and see another MO for a second opinion...How responsive to the TCHP for your case? Even had additional 3 ACs? did you ever think about nerlynx?
Thanks again.
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Nerlynx wasn't readily in use in when I had my recurrence but there is a good thread on this site about it. Can't speak to the ER+ since I was hormone negative all the way through. But the surgeon verified and biopsies & continuing imaging show she did get everything - both times. My first surgery (BMX) also showed clean margins & clear SNBs. The recurrence in a lymph node two years later shocked all the docs & switched the diagnosis from DCIS to IDC, with resultant ALND.
In terms of aggressive ttreatment - I don't remember how old your wife is, but there comes a time for all of us when enough is enough & we have to move on with our lives. We need to find the "new normal" and hope & believe we've done the best we could do to stay NED. The treatment sounds standard for 2cm Stage 1. That said, I'm a big fan of second opinions if for no other reason than to help put worries aside.
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My MO at MD Anderson said that he would have given me Kadcyla after TCHP had I not gotten a PCR. I meant to ask him at the last visit why the Perjeta was discontinued after the six cycles of chemo--plan to ask next time. I read of other women continuing H&P together through the end of the year. He stopped the Perjeta before surgery and knowing the results of the pathology. I do plan to inquire about Nerlynx, though I understand I may not be a perfect candidate.
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Thanks a lot, MinusTwo0 -
Beesy: Congrats for the PCR!
My wife's MO said ER-/PR- turns out to have higher rate of PCR compared with ER+/PR+,plus,your tumor had a small size to begin with. Oh, I thought the tumor needs to be 2 cm for Perjeta, how did you get it with a size of 1 cm? my wife is still continuing with both H and P...
Lucky you to have a consistent Pathology result. My wife's BS said MRI was clean before the surgery and he could not find anything suspicious during the surgery, either. But the pathology report still came back with (disappointing) residual...
Yes, please share what you MO says about Nerlynx. Thanks.
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Lily,
Well, my stats are deceiving and I've often wondered if I should change them. My tumor presented at biopsy at 1.5 cm and by the time I got to MD Anderson it was maybe 1.9 cm--but not large enough to qualify for Perjeta. When I set up my user profile here, I checked 1 cm+ but it shows up as 1 cm. Someone had asked the question recently on a different thread about the difference between MRI and ultrasound measurements and I will copy and paste my answer below because it gives you a pretty good idea of what went on with my tumor. It makes the PCR even more amazing if those numbers in late August are anything close to real.
My tumor was HER2 positive and was clearly exploding in growth at the time of diagnosis, but did it really grow from 1.5 cm to 7 cm in two weeks? Note below that in December I had an ultrasound on the 10th and an MRI on the 13th. The ultrasound measured the tumor's largest dimension as 8 mm and the MRI three days later measured it at 1.3 cm. My oncologist did the original MRI in August because he wanted me to qualify for Perjeta. Boy, did I! He looked pretty ashen the next time I saw him. Suddenly I not only qualified for Perjeta, but also radiation! I would say that, in my experience, based on the December imaging, MRI exaggerates.
8/15/18 Biopsy Ultrasound---1.5 x 1 x 1 cm
8/30/18 MRI----------------------7 x 2 x 3.4 cm (!!!!)
11/12/18 Ultrasound-----------1.1 x 0.6 x 0.4 cm
12/10/18 Ultrasound------------0.8 x 0.7 x 0.3 cm
12/13/18 MRI---------------------1.3 cm at largest point (radiologist did not record other 2 measurements)
Your wife receives treatment at MD Anderson or did she just get a second opinion there?
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Beesy,
Yes, I really agree with you that, the sizes from different imaging are rather inconsistent at the best. At one time yours was 7 cm? I do not think it is trust-able at all.
For my wife's case, the original biopsy/US diagnosed a size of 7 mm, but two weeks later the MRI said 2 cm. That actually scared us a lot, although the "positive" side was it qualified for Perjeta. How could the tumor nearly tripled the size in two weeks??? You would think (and many reports say something similar) that MRI tends to overestimate the tumor, but the other MRI before my wife's surgery did the opposite... The Pathology report said the tumor bed is 1.5 cm, we were wondering if that is actually the "true" size, but I guess that should not matter anymore since it is totally gone anyway
We are in the East coast and never got a chance to MD Anderson. We never had a second opinion before either but may think about having one.
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Lily, I had a memory that your wife had been considered for a trial at MD Anderson, which made me think she was being treated there. It's clear that there was some kind of explosion in growth around the time of my diagnosis, which I am told is not uncommon with HER2+ tumors--but who knows what the real size was! Even if the MRI wasn't exaggerating the size, I found great hope in this forum where women shared that their HER2+ tumors had grown exponentially and suddenly--but had responded to treatment. I hope you and your wife have been encouraged likewise.
If it were me, I would push--and push hard--for Kadcyla. And then I would push again, and then look for a second opinion who is willing to do it if her her MO remains unwilling. The stats on its success preventing recurrence is remarkable.
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Beesy, you were correct that once my wife was considered as a candidate for joining a trial led by the doctor at MD Anderson. The trial is for no surgery with good response after TCHP...But the MO said we should not do that and apparently she turned out right because of the residual...
We probably will a second opinion soon from a MO at Johns Hopkins.
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LilyCH: My MO brought up Kadcyla at my visit the other day. She was enthusiastic about it. She said that as of a couple weeks ago, it is now recommended as the standard treatment for cases like ours (with residual cancer after TCHP). After discussion, we agreed that it was not a good idea in my case, because the #1 reason for women stopping short of completing their Kadcyla treatment was neuropathy. Since I am still dealing with neuropathy in my fingertips, we agreed not to add the Kadcyla. She did order some kind of nerve test to make sure my neuropathy isn't due to some other cause rather than lingering chemo effects.
FYI the Kadcyla protocol is 14 treatments, had we chosen it we would stop the HP immediately and switch to the Kadcyla. I would definitely get a second opinion. Just keep in mind that it's going to extend your transfusions considerably; I'm not sure I'd want to do that anyway. I'm soooo sick of being a patient, but we do what we gotta do....
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Kat22: nice to hear from you. Done with the radiations, correct? congrats!
.I had a chance to ask Sidalee (from a different topic) about why she did not switch to Kadcyla and two of her reasons (I hope she does not mind I quote here): " ...3) the Catherine study looked at H only vs. Kadcyla, it did not compare HP vs. Kadcyla and 4) using Kadcyla for patients who are not Stage IV is not likely to be approved by insurance yet and is very expensive..." are in line with my wife's MO told us... If you were to chose this approach, would insurance coverage be an issue?
14 treatments are also one in every three weeks? That would be very lengthy and Kadcyla seems more toxic than H as well.
Sounded like you would not consider nerlynx after HPs are done, am I right?
Take care!
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Kat22 - thanks for sharing about Kadcyla and neuropathy. I'll write that out of my future. I already have CIPN . Since my feet are pretty much dead blocks of ice, I won't do anything that might make them worse. My balance is shot & I can't feel where I'm walking. I've fallen several times and already had one broken arm. Fingers have improved so I can zip & button my own pants. Some days they are better than others, but definitely effects my keyboard accuracy - particularly the number pad or a calculator. "Anything" means if I have another recurrence, any treatment options I might consider will be very limited.
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LilyCH: Yep, finished rads last Friday. YAY!!! Not sure how hard it would be to get insurance approval for Kadcyla; MO did say "if insurance will approve it". But honestly, the conversation didn't get very far after we both agreed that the neuropathy issue was something we don't want. So I also am not sure about whether it's every 3 weeks, I guess I just assumed it was since she was talking about it being a replacement treatment for the remaining HPs.
Nerlyx has never been mentioned by MO, she has me starting on Letrazole next week. Hope you and the wife are doing well!
MinusTwo:: Sorry to hear of your struggles with neuropathy. I've had a few balance issues but my feet don't feel like there's a problem. Weird. It's very frustrating feeling like I have no fingertips, glad yours have improved some. I work in the cage at a casino, so am handling cash all day and I struggle. Really really hope you can find some improvement. It sucks.
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Hello everyone. I just finished TCHP yesterday. Other than fatigue, diarrhea, neuropathy, likely losing both big toenails and fingernails turning a shade of reddish/brown, nausea and vomiting just twice, I cannot think of any other problems. I have acid indigestion the first night and steroids that wake me up about 1 am. My oncologist recommended tea tree oil on fingernails. I'm looking over your profiles and seeing lumpectomy surgical procedures. My oncologist said I was a good candidate for a lumpectomy, but my surgeon mentioned mastectomy yesterday. I will go for an ultrasound to make the final determination. I was hopeful for a lumpectomy, less complications, less hospital stay. I'll be honest, I'm scared of a mastectomy and the complications. Two other women I work with have both had complications from their mastectomies and been off work over 2 months.
I will be on Herceptin and Perjeta through November to make it a full year. He mentioned Nerlynx, but that is after November and he wasn't sure he wanted to go with that because of the documentation or literature or something like that.
I guess my pathology report will come out after surgery, right? I will start radiation about 6 weeks after surgery. I had a cancerous lymph node. It's helpful to read your posts and I wish you all the very best in this journey. Hugs and love, Lisa
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LilyCh & Beesy
Beesy - who is your Doctor? Please PM me with that
My doctors at MD Anderson also mentioned the no surgery trial after neoadjuvant. Mammogram and ultrasound made things look clear after TCHP. They were wrong. I don’t know if the images were affected by my dense breasts that hide cancer or if cancer grew in the almost 5 weeks post treatment ( I would probably have chosen to do surgery sooner if I thought there was residual). My initial breast tumor bed was a bit smaller but still had isolated cancer cells (at least 10%- I don’t have the report in front of me) and the one lymph node involved (out of about 20) still had Macro metastasis. I am finished HP now and wish I had the opportunity to take Kadcyla or some other drug to make sure nothing else is floating around my body.
I am glad I chose mastectomy although I am worried about reconstruction. I had a pretty easy recovery and walked 20min the day after surgery (slowly and with people on either side just in case). Although I had clear margins, I had atypical hyperplasia in breast tissue. Although this is a benign condition, it is linked to higher risk of breast cancer.
My weight is down and am worried about my upcoming DIEP, which my plastic surgeons suggests since I did radiation post mastectomy. It is a long surgery with a long recovery and I haven’t been able to exercise much because I get sore, possibly due to the AI letrozole.
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TripPHtown,
Yes, when I first contacted the Dr at MD Anderson about the no surgery trial, he responded amazingly fast and said my wife should be a perfect candidate (because examinations and imaging post chemo indicated tumor had been resolved and clinically (before chemo) there was no node involvement either). He even asked his assistants to send us the registration form and wanted us to register right away. But later when we contacted my wife's MO, she said no and wanted to make sure. It turned out she was right. We were disappointed by the residual but the BS seemed not concerned about it and he kept saying the chemo already killed the aggressive cells and just left the tiny indolent one.
Did you ask your BS for the biomarkers of the residual? My wife's original pathology report does not have all the information, I asked the BS and then he requested the pathologist to rerun. It turned the residual was grade 1 with ki-67 < 10%, maybe that is what BS meant by "indolent".
For SLNB, I thought the surgeon would take about 2 or 3 nodes, why for your case it was 20 nodes, did you do ALND?
Have you even discussed Nerlynx with MO? I was under an impression you could take it within 2 years after HPs are done
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I had Taxotere and Carboplatin for grade 3 TNBC-- obviously no HP. I did not realize it was a common chemo for Her2+ till reading this thread. It isn't the most typical chemo for TNBC, but it worked great for me. My 3.8 cm tumor and 3 cm node were unable to be felt after 3 chemos. (Of course I still had to do all 6!) I think the AC/T combo that most TNBCs are given is much harsher and has more SEs (from what I can tell). I am grateful to my MO for choosing the right thing for me!
Good luck to everyone!
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TripPHtown,
Is Kadcyla out of the question? My MO told me he would have given me Kadcyla with residual tumor so I would press, press, press for that! I'm planning to press for Nerlynx at the end of my Herceptin treatment (and I meant to ask why he dropped the Perjeta before knowing that the results of my pathology--will be doing that next time, albeit late).
I will send you the names of my docs at MD Anderson via private message.
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I started TCHP in November 2018 and had my first ultrasound in December 2018 - everything had shrunk. I had a second ultrasound today, for the surgeon's review, and the cancerous lymph node is smaller than December, one tumor is smaller than December, and that bad "taller than wide" mass - you cannot even see today! I will start Herceptin and/or Perjeta 3-4 weeks after surgery to continue for a total of a year, then Arimidex, and the oncologist mentioned Nerlynx, he wants to look at the literature at that time. He never gets too far ahead on telling me too many details. It was a great relief and a joy today to know that taller than wide has disappeared! Thank you for letting me share, and hugs to you strong ladies on this journey.
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I completed 5 out of 6 TCHP neoadjuvant chemos. My tumor was under armpit and was grade 3 4.4cm. Lymph node involvement. I had PCR confirmed by pathology report after my double mastectomy.
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Just popping in to say hi! It's been 4 yrs. since my dx and completing TCHP. I ended with my last Herceptin tx in July 1, 2016. I never had pCR during initial tx, but was declared NEAD in May 2016. Cheers to you all!
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Started my 6 rounds of TCHP in Feb and completed without a hitch. It was ROUGH, but doable. I had pCR at time of my BMX June 19th. Feels great to be cancer free. Best wishes!!
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