Neoadjuvant TCHP - Post Results Here
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What is SNB? I can't figure it out
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SNB = sentinel node biopsy
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Only two more doses of Herceptin to go.
I saw my surgeon for my 6-month post-op and asked if she would have recommended mastectomy for me if I hadn't pressed for lumpectomy. She said she is very much in favor of less surgery and usually can convince patients that it is for the best. Less surgery is less surgery and the best surgery is no surgery.
She would have recommended an AND but oil pressed for an SND and only had 3 nodes taken which were just scarred down. I struggled with whether or not to do surgery and I really believe that it had no therapeutic value in my case. But as we can see here, sometimes there isn't a complete response. There has to be something like 119 cancer cells for them to light up on the MRI, two less cells and the imaging won't show anything.
Radiation is another treatment I struggled with as I causes so much damage to the body. I completed proton therapy, more targeted and sparing of my lungs and heart, back on Dec 9 and just this week I learned I have stage 0 trunkal lymphedema. I really wanted my RO to be more targeted, again based on my presentation of disease, but she told me she wouldn't treat me with any less. I think the blast to the nodes behind my clavicle are what is causing the biggest lymph drainage issue. Damn.
They are very hesitant to do less that what is proven to have efficacy even if many, many times it means that individual patients are over treated. Their research and patient surveillance isn't detailed enough and seems to miss a lot about disease behavior -- at least that is what I observed. Data shows that the rate of having breast cancer spread to a location in the same breast after treatment is quite low, it is more likely to show up as mets. In the meantime radiation tx is applied to the full breast area. I think with a computer analysis of disease spread patterns coupled with key patient bloodwork that treatment could be much tighter.
We are in the first rounds of the general patient population to benefit from neoadjuvant TCHP. Hopefully each if our centers tracks our progress and they start to learn more from our experiences.
BTW, I noticed that my (very sweet) MO didn't ask me about details of my post-chemo experience (meaning the cytotoxic stuff). I have taken to making notes in-between appts and then giving him a dump about my aching muscles, sleep issues, skin, hair, nose, etc. Please do so as well because if we don't tell them they will think everything is cool. The impetus to do a better job or improve the patient experience will only come if we speak up and ask for it.
Peace,
Ann
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I'm still on reduced taxotere due to my SEs... The docs seem to think it will be as effective, so I'm pretty sure most people are over-treated to be on the safe side... It's true that we are all sort of guinea-pigs for these things. But hopefully treatments will become more precise and less harsh on the body as time goes on and treatments are refines and new drugs and targeted treatments are developed and tested. Already we benefit from everyone who has gone before us... And things really seem to be changing quickly.
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Just found this thread. Glad to read all your posts.
April - somebody said this earlier - but ask for extra fluids. I had 6 rounds of TCHP every 3 weeks in 2013 and EVERY SINGLE TIME I had an extra liter of fluid. Then I came back 1/2 way between treatments and had another liter. I lost 60 lbs due to diarrhea but the fluids kept me going. My MO gave me the option to cut back on the Taxotere when neuropathy started rearing it's head but I went ahead full steam since I'm ER/PR negative & there were no other treatments. Now I wish I'd cut back due to continuing problems w/numbness. From what I've read it looks like a reduced dose is OK.
I had already had BMX in Feb 2011 for DCIS w/SNB clear and margins great. Then had a chest wall recurrence in Feb 2013 so chemo & rads were mandated. TCHP unfortunately did not produce a PcR, so after ALND surgery I had to go back & have Adriamycin & Cytoxan chemo every 3 weeks "to mop up any lurkers". And I'm glad you found out - Adriamycin & Herceptin both damage the heart and can not be given together. Usually Adriamycin damage is permanent and Herceptin damage is recoverable. Anyway after all that I was so lucky to have only 5 weeks of rads while I started back on Herceptin. I decided to proceed the rest of 2014 with Herceptin only even though my MO offered H&P both for 17 weeks. I may be sorry down the road but just didn't want to deal w/any more side effects & Perjeta's too new for accurate information.
Agness - I agree - Most docs don't want to talk about neuropathy or lymphadema and pooh-pooh their prevalence. Unfortunately I'm stuck w/both. Finally in PT for radiation fibrosis & LE and in OT for fine motor skills & balance issues, although I'm happy to report the neuropathy in my fingers has improved enough after 14 months that I can now do up my own zippers on my jeans.
Congrats to all of you who have finished. Good luck to those of you still in treatment. After all the nasty poisons, Herceptin alone was a breeze. Now I'm trying to re-build some strength and hoping to get some energy back.
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Ok, so my wife will be starting (TCHP) treatment #4 this Tuesday. I can't tell you how much this forum has helped, Ann is correct in saying the info we/you ladies provide is super helpful and and can be construed as critical research for future patients and MO(s). Our MO asked us where we heard of icing hands for helping with neuropathy. The first 2 treatments were not too bad, the 3rd tougher with energy reduction by the third week , but this could be because she was forced to handle our 3 little ones (2,4 & 6) more as family was coming and going. The SEs I have heard her speak of to-date are:
1) Sleep problems (prescribed ambien for 3rd treatment which has helped). Typically better by 3rd week.
2) Nose bleeds by the second week, she experienced a massive menstruation which left her dehydrated and a little anemic. Going to ask MO about bioflavinoids for this.
3) Hair loss (red some good info on chemo caps & juicing with carrot juice and cabbage juice (just don't know its efficacy)). We will talk to MO on Tuesday to see if we can start vitamin e on the scalp and juicing. Not that it mattesr as she lost her hair 20 days or so out, but it could help.
4) low energy week 2 in cycle but I noticed she is more tired this 3rd treatment (but 3 kids does that to you as well ...:))
5) dry fingers with some mild neuropathy in hands, but before the 3rd treatment she did ice on hand/feet and it seems to have helped, we are going to ask MO about vitamin e as well. Prescribed neurotin but asked about the b vitamins and another supplement which she has been taking since 3rd treatment and it seems to be helping. We like to push for supplements before chemical and out MO is supportive on that front.
6) dry eyes, not much tearing (occasional) but she has continuously taken lubricating drops and we are going to start vitamin e on eyelids too.
7) no bone pain but she does take 10 neupogen shots day 2 after chemo (her white blood cells) are off the charts by day 11, she used to do claritan d (for neulasta bone pain) during neupogen shots but she did not take the claritin this cycle and it seems to have not mattered
8) Appetite reduction.
9) constipation week 1, week 2 diarrhea
10) tumors are not palpable, nor is the hard region in the right quadrant, I am not a doctor but MO and PA have felt the area as well with the same results. I (her husband) did know where the tumors were before and they were identifiable masses which we cannot feel anymore. Nothing is going to be as good as surgery to state the true results but this is always good news and seeing as this treatment is intense it is nice to know it has some efficacy.
11) did genetic testing and received a BRCA1 VUS (meaning could be positive or not) , my wife has a family history of endometrial (maternal grandma) & colon (mom) so lynches was considered (lynch was negative) but results are going to another lab, it could be nothing but with three kids (and 2 girls) we would like to know, plus surgery decisions could be made based on this.
See ya all in a couple of weeks. Andy & Elizabeth
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thanks Andy & Elizabeth!!! That was so informative, particularly for me after having just my first TCHP infusion
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Hello All, I just found this thread and reading through it was so curious about the different treatments for similar diagnoses. For example, I have IDC, my tumor was 2 cm, I am ER+, PR+ and HER2 +. I first had a lumpectomy shortly after diagnosis and before treatment, and learned a few days later the surgery that the surgeon did not get clear margins. The doctor discussed a mastectomy, but HE decided on another lumpectomy, which came back with clear margins. My breast is very clearly deformed, which is not a big deal to me. If I had had a mastectomy, I understand I could have had reconstructive surgery start at the same time and insurance probably cover it. I'm probably happier without the down time of a mastectomy, but I just want to make sure this cancer is gone. My MO told me that my treatment is "textbook" per the guidelines of the National Comprehensive Cancer Network. It's curious that some of you had chemo before surgery, had mastectomies for a very similar diagnosis, and some of you are taking Perjeta, which I am not. I've talked about this on these discussion boards before, my MO is not very easy to reach or talk to. He's supposed to be really good, so I've stayed with him. I had my first Taxotere, Carboplatin and Herceptin treatment two weeks ago, had a Herceptin treatment last week and yesterday, and my second chemo will be next week. First week SE were a little rough, but not too bad (Nausea, fatigue and muscle pain mostly). Herceptin is not quite a breeze because I get agitated, some shortness of breath, get hot and restless the first night but then I'm okay. (Herceptin will probably seem like a breeze after I have another chemo treatment.) Yesterday, my blood tests showed I had low neutrophil count (1.1) and I couldn't get my infusion until my MO approved it, so I was at the infusion center for 3 hours just for Herceptin. Haven't lost my hair yet!
April25 -- things DO seem to be changing so quickly, don't they? Congrats to everyone who's finished treatment and hang in there to those of us who still have a ways to go. "It's doable," is my mantra.
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Barbara, for me, we did TCHP first because I had two breast tumors and one lymph node was positive. My surgeon wasn't confident of clear margins and didn't want me to wait another 4-6 weeks after surgery to be able to start chemo. That's why we went the neoadjuvant chemo route for my situation.
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Barbara,
Because mine is Triple positive and tumor is 5cm my MO wanted to shrink it first. Then I will have MX with no lymph nodes removed. I had SNB with port placement. My SNB was negative. I am on day 6 of 2nd cycle. I am doing 4 TCHP. I am mostly nauseaus. lumpectomy plus radiation usually equals a MX. I am glad you got clear margins!! Hope for easy SE.
Patty
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Patty, what kind if breast cancer did you have in 2006 when you had your lumpectomy? I had a lumpectomy this week. I had a1.6 cm tumor in Sept. After 6 TCHP sessions, my pathology report said no cancer. No nodes involved. I am very worried about radiation. I am filled with tons of anxiety.
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Tree27
My breast cancer in 2006 was a very small <1cm in left Breast. Stage 1. I had a lumpectomy with clear margins and RX. No chemo. Radiation was a walk in the park compared to chemo. 29 times. Only symptom was like a bad sunburn. Went away quickly. It was 30% hormone driven.
Tree if you can survive 6 rounds of TCHP. Radiation will not be bad. Are you in an area where there is brachytherapy or advanced radiation.? Good luck. You can do it!!
Patty
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Getting chemo before surgery isn't a clear-cut choice. I think it depends on various factors... and also on the MOs or surgeons. I was told by some that the "gold standard" (most tested and true) was surgery first. Perjeta IS still relatively new... as is neoadjuvent chemo. I think I could have gone either way, but I had two MOs suggest neoadjuvent, so it seemed that was definitely in the picture. It's hard to tell exactly why... but I believe it was because they thought a LX was preferred (or that I preferred a LX!!! that makes me nervous since I want to know what they think! and I can make my decisions from there, but communication can be tricky!). And depends on my tumor size. And... a bunch of factors...
From what I can tell... Neoadjuvent because---
1. Perjeta was approved for that protocol first and since I was ER+ PR- HER2+, Herceptin was in the picture and Perjeta was shown to aid the effectiveness of Herceptin.
2. Neoadjuvent is a newer thing, but MOs I had consulted said there was an advantage in knowing that the chemo was working, and with surgery first, they can't always tell specifically.
3. Shrinking tumor might also make for a better result if there is a LX. At least it might give more options when it came to surgery.
4. There can be delays in surgery from SEs of Chemo, but that wouldn't be as bad as delays in chemo from problems due to surgery. At least this way the cancer is getting hit asap--as there might be cancer outside of the tumor they would remove in surgery (which is why everyone is getting the chemo anyway).
That's how it was laid out for me, and it made sense. My second opinion MO was a guy who seemed really up on things -- he does clinical teaching at UCLA Med School and UCLA folk did a lot of work in establishing the Perjeta protocols. I actually changed my insurance during Open Enrollment so I could go with him! But even my first MO recommended neoadjuvent chemo... so that was two MOs. But I totally trust my MO, so that really convinced me.
The treatments for BC (and many cancers) seem to be changing more and more quickly, with drugs seeming to make a big difference. Sure, there are risks in having less time in testing everything out thoroughly, but there are no sure bets with anything, really. I just have to weigh options and trust to some extent. Or at least be part of the long-term results for these 'newer' methods. Others have already done the more risky stuff and participated in the actual testing, after all.
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A great summary april25 of the factors involved in the recommendation for surgery or chemo first.
MD Anderson, a leading cancer research and treatment center in Texas, is emphasizing neoadjuvant chemo for patients. Having one sooner than the other doesn't seem to affect outcomes but by having chemo first you are gaining empirical evidence about the efficacy of certain drugs for your cancer cells. This could allow for changing drugs during the course of chemo to find a better match. At the very least it was reassuring to see that when it does work you can see it which is really powerful in terms of the patient's stress going forward.Why it isn't recommended all the time is because the standard of care was established first using surgery (it is how they had any chance of saving folks over 100 years ago) and surgeons still run the show in cancer treatment somewhat. If your surgeon doesn't take the time to become familiar with the benefits of neoadjuvant then you aren't going to see that recommended. So that is basically practice bias.
I've heard of surgeons wanting to more accurately stage the disease but with treatment there isn't necessarily a patient benefit to having more cut out. When you scan the signatures of the members on this site you see so many women who had full ALND, some 20, 30 nodes removed and then it will say that 1 or 2 or 0 nodes were positive. So the patient is left with much larger damage to their body than was required increasing the risks of lymphedema but for no improvement in their cancer survival.
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Chemo (with Herceptin) first seems to be THE protocol for HER2+, with or without Perjeta. Insurances won't pay for Perjeta, however, if it is not given prior to surgery. I went into my first meeting with my MO prepared to ask for TCHP first, if he didn't tell me that was the plan. My tumor is on the larger side (IMO) at 4.5 cm. Perhaps it does differ with smaller tumors.
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I'm in Houston at Baylor & Methodist. Yes, it's pretty "cutting edge" here, but most surgeons listen to the MO's now at tumor boards. There was no question that I was going to neo-adjuvent chemo in 2013 to shrink the chest wall recurrence before ALND surgery. Also it was in a lymph node. And because the TCHP didn't produce a PcR (complete response), the surgery was more extensive & I had AC chemo afterwards before Rads, even though the surgery "got it all" - again. I feel lucky that they were able to test all along the way to ensure the best result. And change the staging as we went along. I believe it was truly impossible to "see" the microdot that escaped my BMX surgery in 2011, and didn't want that happening again. It was my choice not to continue the Perjeta when they were able to start up the Herceptin again after the AC.
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hi ladies
Ive been reading this thread with much interest even though im 3.5 years from diagnosis. Im fascinated in how much treatment has evolved from when I was treated only 3+ short years ago. I did a ton of research on neo-adjuvant treatment because at the time very few people I met had gone that route, even on this website I struggled with finding a sister who had chemo first. (shout out to kayb who was one of those ladies!)
here is what I learnedNeo adjuvant chemo used to only be used in locally advanced cases where the surgeon could not get clear margins if they operated first. As new drugs were being tested and they are tested prior to surgery on early stage women they found that those with complete or very good responses to the drugs had better outcomes. In fact most of the women who I met on these boards almost 4 years ago had neo adjuvant rx because they were part of a clinical trial, they always had standard of care drugs post surgery as part of the trial. As part of the move to tailor each patients cancer treatment to the tumor biology more and more MOs started offering chemo prior to surgery as an option to more advanced cases. My MO told me that MD Anderson was one of the first institutions to use neo adjuvant as standard of care in all her2 + and TN tumors over 2cm in size. The reasoning is that they know that after a tumor grows to a certain size the likelihood that it has shed cells becomes higher and as such they want to begin attacking the body systemically. Drugs can be changed or other drugs can be added in (like the red devil) if a less than complete response
for those of you who had surgery first...don't think that you didn't great treatment. With all the great targeting treatments for her2 you have a great prognosis - you got the big guns, no matter what order you got them in. Her2 is one of the most curable bc today because of perjeta and herceptin
b t w I had a complete response to FEC DH (similar to ACTH)
hang in there...this mess does become a distant memory!
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rozem, thank you for your words and encouragement.
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I have been reading this thread ever since I started neoadjuvant chemo on October 17. I appreciate all the input, and especially enjoy reading about the positive results which have always given me great hope. I finished chemo on February 2, 6 treatments 1 every 3 weeks. However, I did have a rough time with SE's, and my MO eliminated the Carboplatin after 4 treatments (could not eat & loss of weight, dehydration) , and also eliminated the Taxotere for my last treatment due to neuropathy issues. I had an MRI last week, and was to see my BS on Tuesday to discuss surgery, but appointment had to be canceled. The two tumors that I was being treated for (1 cm and 5mm) 6:00 position on my right breast had a very good response to the chemo, and in fact look as though they are gone. But, another tumor, even bigger (2 cm) has recently appeared behind where they were and much deeper. I am so worried it's close to my rib cage and chest wall and could complicate surgery. Now I have to have an ultra-sound biopsy done on the new tumor Friday, and if they are unsuccessful in getting the biopsy because of the location, an MRI biopsy done on the 24th. My cancer began as Paget's disease, and seems to be throwing a different curve ball at me with each test, and I realize that is common with BC. I am praying the new tumor is some type of benign cyst, I have dense breasts, and I am pretty much flat chested. I just want to have the surgery, whether BS decides lumpectomy or mastectomy (which I think I would prefer) and be done with this whole nightmare (as we all do). Has anyone else had this happen to them or heard of it happening to someone else after going through neoadjuvant chemo?
Jacquie
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Rozem: Thank you for posting. It was encouraging when you said HER 2 + BC was so curable and also that this mess becomes a distant memory. I needed that today!
Patty
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Jacquie, I haven't had what you're experiencing, but I just wanted to wish you well. I hope that new tumor is benign!
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Thank you Cassie, I wish you the best as well. Looks like you've been through the worst part; I hope the rest is smooth sailing for you.
Jacquie
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Hi Jacquie,
No I haven't heard of this either (but that's not saying alot as this is all new territory to me). Just wanted to let you know that I'm hoping for good news tomorrow and they are able to do the biopsy! Keep up posted. --Lorie
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Rozem...thank you so much for taking the time to write such an uplifting and hopeful post! Happy to hear you had a complete response!!
--Lorie
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Thank you Lorie, I will keep you posted. I so hope the ultra-sound biopsy works, and the results are what I want to hear. I'm from the Pittsburgh area, and I'm having it done at a reputable Pittsburgh hospital; so I am at least confident that I should be in good hands tomorrow.
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Thank you Jacquie - they say radiation should be easy compared to chemo and surgery, so we'll see! It's all hard emotionally.
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Ladyduffer,
Praying for you to be able to get that done by US guided biopsy tomorrow and it is benign. You have been through enough!! I am wanting a MX when this chemo over. My right Breast is trying to kill me, it needs to go. Please let us know how tomorrow goes.
Patty
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Cassie, you are right, it is so hard emotionally, and we are prisoners of our own emotions. I hope you have no complications with radiation.
Patty, I truly appreciate the prayers, and I will pray that you do get your MX. I see that you've been through a lot as well and appear to be in the middle of treatments. I hope your are having little SE's if any.
Jacquie
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I hope things went well yesterday, Jacquie. Let us know.
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Happy Valentine's Day!
Just an update that they were able to get a biopsy using the ultra-sound, but they are not sure if it will work or not. It seemed really tricky for them to get to the spot. I am keeping my fingers crossed that what they did get is all they needed. I won't know results until Monday or Tuesday when my BS calls me. They also commented that it is an oddity that something grew in that area where the other tumors shrunk as a result of the neoadjuvant chemo.
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