Neoadjuvant TCHP - Post Results Here
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In 2013 my MO offered Perjeta along with the Herceptin after chemo & surgery. I'd already lost 60 lbs and had two different chemo rounds so I refused. I still had rads ahead and just couldn't deal with the side effects for the rest of a year.
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I kept my port in until after Herceptin infusions ended. I figured that I had the port, might as well keep using it! BUT right after that, I got it out! It's an easy removal, and seemed quick and painless to me (twilight/local... I was chatting with the docs through placement and removal!). It was nice to have the port out so I wouldn't have to go in for flushes, and I only have had blood draws every 3 to 6 months, so it didn't seem worth the extra care to keep it in. Besides... it did get knocked a bit by my car shoulder belt, and it's just SO nice not having that little lump there (I can sleep on that side without worrying).
My port had been trouble-free, so I was glad to have it. Plus--had to be hospitalized a number of times due to severe D and resultant dehydration from the TCHP (got reduced taxotere after 2nd cycle and 2nd hospitalization because of that--but that didn't really seem to make the SEs any less).
I had no noticeable SEs from just the Herceptin.
I had some neuropathy--but it seems to have cleared up slowly as soon as TCHP infusions stopped.
The last few cycles were similar to my earlier ones--but by that time, I was just much more worn down... anemic from the D and lack of apatite (which wouldn't have mattered since everything I ate went right through me)... But I was good enough to have surgery 2 weeks after the end of my last cycle (barely).
I did not have pCR... but my tumor was kind of large-ish-- 3cm. It shrunk about 1/3. No scans to make sure of how much it shrunk (which I thought was odd), but I guess it wouldn't have changed my treatment. I did have lots of docs feeling up my breast, during all this. I was just SO used to just ripping off my top and bra and wearing those silly gowns open to the front and letting tons of people touch my breast through everything...
Oh-- when they were doing the pre-LX mammograms, they saw some calcifications in the area of my tumor that they hadn't seen before. I kind of think they were what was left from the shrunken tumor...??? Anyway--it's been nearly 2 years since my neoadjuvent chemo and LX and so far, so good, (although, that's according to mammos, when mammos didn't catch my tumor in the first place... I just hope they are looking a bit more carefully now!!! --oh, and it's a different facility with digital mammos, so I'm also hoping that helps).
I haven't had another PET after the one I got when I was first diagnosed. I do kind of wish I'd have some more scans, because I'm still a bit paranoid about the big C, but my docs are pretty good about doing tests, so I figure they'd tell me if I needed one...
My hair took the longest to get back to looking less like a chemo-patient! It's still a little thin, but was thinning before chemo... but the longest parts are now below my shoulders. Yay!!!
All the best to everyone!
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So glad I found this site, since it's specific to what we have. I am PR+, ER+, and HER2+, and nervous. Early stage, biopsy of lymph node negative, but won't really know anything til surgery. I just had my second of 6 rounds of TCHP this past Tuesday. Has anyone out there researched the vaccine trials? I am a bit obsessed on the rate of recurrence with the darn HER2+. I know Perjeta and Herceptin have show great results as far as shrinking/eliminating the tumor, but I'm trying to think long and short term. So, right now I am focused on getting thru chemo/hormone blockers, and figuring out strategies for after surgery. I will also have radiation treatments. Any advice or insights you wonderful ladies could give me would be greatly appreciated. And, I have to say you all are an AMAZING bunch. Thank you! Cathy
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Hi All,
I was diagnosed with Paget's Disease of the breast in January 2017. After several rounds of testing I learned that I am HER-2 Positive and Estrogen/Progesterone Negative. My breast surgeon and oncologist at New York Presbyterian/Hudson Valley Hospital recommend neoadjuvant TCHP therapy 6 treatments, three weeks apart.
My health insurance provider Oxford, has denied my oncologist pre-service claim because the tumor deep in my right breast is only 7 millimeters long (six weeks ago) while Oxford wants to see a 2 centimeter tumor.
I have provided a list of questions below to help me with my appeal to Oxford.
We will appeal Oxford's decision as an Expedited 72 hour claim. However, time is short since I am scheduled for surgery without TCHP on April 24.
Please let me know:
- When you were diagnosed with breast cancer?
- What type of breast cancer?
- Did your have Paget's Disease?
- Whether you are HER-2 Positive and Estrogen/Progesterone Negative
- What hospital were you treated at?
- Who was your breast surgeon?
- Who was your oncologist?
- Who was your health care insurance provider?
- What was the size of your tumor?
- Did your insurance company initially accept your pre-service claim?
- If not, why did they deny it?
- What was the outcome of your surgery after the TCHP?
- Was there any lymph node cancer involvement?
Thank you for your help.
Sincerely,
Victoria Nagel
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Hi All,
I was diagnosed with Paget's Disease of the breast in January 2017. After several rounds of testing I learned that I am HER-2 Positive and Estrogen/Progesterone Negative. My breast surgeon and oncologist at New York Presbyterian/Hudson Valley Hospital recommend neoadjuvant TCHP therapy 6 treatments, three weeks apart.
My health insurance provider Oxford, has denied my oncologist pre-service claim because the tumor deep in my right breast is only 7 millimeters long (six weeks ago) while Oxford wants to see a 2 centimeter tumor.
I have provided a list of questions below to help me with my appeal to Oxford.
We will appeal Oxford's decision as an Expedited 72 hour claim. However, time is short since I am scheduled for surgery without TCHP on April 24.
Please let me know:
- When you were diagnosed with breast cancer?
- What type of breast cancer?
- Did your have Paget's Disease?
- Whether you are HER-2 Positive and Estrogen/Progesterone Negative
- What hospital were you treated at?
- Who was your breast surgeon?
- Who was your oncologist?
- Who was your health care insurance provider?
- What was the size of your tumor?
- Did your insurance company initially accept your pre-service claim?
- If not, why did they deny it?
- What was the outcome of your surgery after the TCHP?
- Was there any lymph node cancer involvement?
Thank you for your help.
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According to my doctors, insurance will not cover neoadjuvant Perjeta unless the tumor is at least 2 cm. Sounds like Oxford's stance is standard.
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Yes, adjuvant Perjeta is not standard of care for small tumors. The APHINITY trial has not reported definitive numbers, but it was released a few weeks ago that it statistically benefits survival to add Perjeta adjuvantly. Note that APHINITY also added Perjeta (and Herceptin) for a full year after completing the main chemo cycle.
I had a 1cm HER2+ tumor and could convince my doctor to prescribe it for the main chemo cycle, but I will not get Perjete for the full year. We might add it to my 3-weekly Herceptin injections once APHINITY results are released and the benefit seems to be high enough.
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I was told that I could get TCHP neoadjuvantly only, based on results from fairly recent evaluation of Perjeta in addition to Herceptin for early stage patients. The team said that insurance was following the parameters of the clinical trial(s), which happened to have been in a neoadjuvant setting. Since there was no evidence at that time of effectiveness adjuvantly, the insurer would cover TCHP pre- but not post-surgery following the limitations of the clinical trial evidence. Sounds like a new trial may shortly resolve that anomaly.
I looked up the trial in question, where it seemed that early stage disease cases may have been somewhat of an add-on to the more developed cases that the trial was targeting in looking at benefits of neoadjuvant treatments. And 2 cm was the smallest of the early stage tumors that they included.
My case was 2 cm as measured by MRI. I was approved for it [TCHP neoadjuvantly for 6 cycles and a year on Herceptin] without any objection from my insurer that I'm aware of. When I saw the hefty bills coming through for Perjeta and Herceptin I could appreciate why, in addition to effectiveness and safety concerns, there was some scrutiny about these drugs.
It may have been just my impression but I thought Perjeta was associated with more side effects than Herceptin. I didn't realize til reading this thread that Perjeta was being considered for cases to take a full year along with Herceptin. I'll ask, but it may be a close call for me unless there are clear benefits if it puts me back into the harsher side effects after I've been feeling a lot better the past month or two.
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I believe if you are eligivthe standard is 17 treatments every 3 weeks, just like Herceptin. If you have 6 rounds neo-adjuvant, and finish the balance of the 17 after surgery, that is 51 weeks. So that is where the year is coming from.
My MO offered to continue Perjeta after ALND surgery. I understand it would have been covered because my chemo was for a recurrence. My first round was a BMX for DCIS with no further treatment. I declined & continued with Herceptin only.
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I just wanted to report back here that my UMX was 12 days ago, and the sentinel nodes were clear, and the pathology on the tissue was NED! So, I am now officially stage zero! I had a 2.2cm tumor on the right side that was not palpable after my first round of TCHP. I also had two locations of DCIS on the right side. That was still there after surgery, which was expected. Here is my blog post about my good pathology results: https://psalm7326journey.wordpress.com/2017/04/22/...
I have now had two infusions of Herceptin with Perjeta. One before surgery and one 6 days after. I had sporadic diarrhea starting 7 days after the first infusion. I really was not happy to hear about Perjeta's good study, just because I was so looking forward to leaving SE's behind me. Of course, they are worth it for the end result, but if the difference in result is minimal, the SE's aren't worth it. Once the full result of the study is released, my oncologist will let me know if he still recommends continuing the Perjeta. Here's another post where I talk about the switch in infusion plans: https://psalm7326journey.wordpress.com/2017/04/12/...
I am very thankful I don't need rads. I had my apt with the radoc Monday so he could officially tell me that. In that apt, he said that TCHP has truly changed the future for women with her2+ bc. We are incredibly blessed to have this treatment.
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joy - you results are wonderful. I do think however that your staging does not change to -0-. You are NED, but the original staging stays on record, or a stage that becomes worse after the surgery pathology. Congrats on a successful surgery.
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Thank you, MinusTwo. I was not expecting my stage to change, but the path report states I have been downgraded to stage zero. The breast surgeon, medoc, and radoc each went over the path report with me at separate apts and each pointed out the downgrade in stage because of the NED.
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congrats Joy
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Joy45Gen, congratulations. That sounds like excellent progress. I wondered about the SEs with Perjeta added to Herception after the TCHP program was done; hope that clears up for you. I will be asking my MO about this study when I see him next.
Each team must do things different. To this day i have never been told or given anything that reflects staging of my current diagnosis! I asked the MO at one point early on, and he vaguely said either stage 1 or 2. Idk, maybe they can't really tell which if you've had TCHP to shrink the tumor at the time of surgery and definitive pathology? Or they were focused more on beating back the HER2+-ness of it all, vs. the tumor size per se.
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mislil, I'm reading your diagnosis and treatment notes, and I'm wondering if it is correct. It says you had a MX on the left in '08, and then a LX on the left in '17.
I'm guessing that the unclear staging would be because not all of your breast tissue had pathology done on it with a lumpectomy vs. mastectomy? This is where a doctor's input would be helpful.
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Yes, it's weird but that's correct. I had a problem area found last summer under the mastectomy scarline where there was residual breast tissue. I had surgery to remove the new lump, which they called a wide excision (lumpectomy).
They did pathology on the 'lumpectomy' sample. The surgeons took out quite a lot of area to be cautious, especially as I was fussing a bit that I wanted as much remaining residual breast tissue gone as possible. The pathology found a 1-2mm spot left from what had been originally a 1.5-2cm tumor prior to TCHP.
It is probably odd that the doctors never mentioned staging, and I never asked after that one brief early conversation with the MO. Since this is a second situation for me, to be honest at times I only wanted to know what I needed to know to make decisions, and the rest I either didn't ask, or left to learn about at a later time when I was less freaked out.
I never asked if he did an Oncotype scoring or anything like that either, it was pretty likely that it would say I was 'high risk' since I was coming back with a new issue after having DCIS 8 years before. Like the overall staging, how high risk I might be, being already higher risk, didn't seem to drive decisions and so I decided not to ask.
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Thank you for the explanation, misslil. Oh, my heart just breaks reading it all. My bs told me there was never a 100% assurance of no recurrence with a MX because there is always some tissue left at the incision. I would have no doubt handled it the same way you did. It would have felt so unsettling - the second time on the same side. It also makes sense that staging wouldn't be so clear. I just want to give you a hug - sorry if that sounds odd, but I am imagining going through it all, when I just had my own MX less than two wks ago.
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thank you Joy45Gen, appreciate it. In my case, I had an excessive amount of residual tissue left at the original mastectomy. It was thinned out some in subsequent procedures, but still enough I guess to allow some troublesome cells to sprout last year. The latest surgery has hopefully thinned it out even more plus re-radiating. Though with IDC I guess the biggest worry always will be more a distant recurrence vs. another local issue. Hoping for the best after taking advantage of all the treatments that were available and recommended for my situation.
Best wishes to you in your experience as well; I know none of us wanted to be here.
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You have a very good perspective. It is a blessing to have these treatments available, and it is good to know you took advantage of them all. All the best to you too!
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Having a year of Perjeta wasn't suggested when I had chemo in 2014/5... things change quickly these days. Perjeta was just approved maybe the year before??? Anyway, I only had it with my 6 cycles of chemo. I only had Herceptin for the full year.
I didn't have a pCR... but my 3cm tumor did shrink about 1/3... The path showed inconclusive Her2, so the H&P may have gotten rid of all the HER2 cells???
So far, I've had clear mammos, 2 years since my LX. I'm now going to a yearly mammo schedule, but will get an MRI or US between those because of dense breasts (mammo did not find my tumor... I had to find it, so extra tests are good). And apparently I don't need to see my BS any more, just the NP...
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Hello all! How do you do it? It took me a while, but I read all 28 pages of posts and am in awe. My treatment begins on 7/27/17, two days after they install the port. When I got my dx, the BS mentioned to me that I had HP to look forward to (Hercetin/Perjeta), a fairly new treatment where you wouldn't have to get chemo. She was obliged to mention most, if not all possibilities, including chemo, but even as I heard them, my mind was fixed on those magic words, "no chemo". I am HER2+ w/lymph node(s) involvement. Then came the real story when I met my HO (hemotologist/onchologist). Chemo was up in front under the title of TCHP. First, TCHP x 6, once every three weeks, then surgery to remove what's left, then just HP every three weeks. BTW, the lump that I found back in the beginning of June had grown by about 50% in the past 3 weeks. It was measured during an ultrasound, then measured again in a Pet Scan that I had the other day.
About insurance, as of now, they don't want to pay for Perjeta (I don't recall if it's before surgery or after or both). I'm not sure that I want Perjeta because of the SE. And to make things more interesting, hours are cut big time at work. If I'm part time long enough, I'll lose my insurance. I'm hoping that a certain coupon may come in handy if that occurs (to help cover Herceptin). I could try to get insurance through my Husband's workplace, but we would both have to enroll since I'm the one with the family insurance. I wonder how they'll handle it knowing that I have pre-existing conditions. Almost makes a person think twice about launching into treatment. The deductible has just been met and I have a large chunk of a payment to make to settle the pre chemo. I can't believe that the MRI was over 10k! Also 6 consultations, 3 mammos, 2 ultrasounds, 5 biopsies (done at the same time) and a PET scan, not to mention bloodwork.
But, who am I kidding? There's a good chance that I'll have to stay at home, despite preparing for the possibility of some side effects. There shouldn't be a problem getting off work, but it's hard to pay your insurance premiums when you aren't working, not to mention all those other pesky bills (mortgage, utilities). My disability pay would be 60% of a 15 hour week. And I forgot to mention that I had a hysterectomy just this past January. I'm about at my wits end with all of this.
Having said all of that, my deepest apologies to all of you. I know I'm not the only one with troubles. They all say, You can do this! Can you?
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I received neoaduvant TCHP. The initial scans showed four tumors and DCIS with the largest tumor 1.7cm. After biopsies I had a PET Scan and an MRI which found a total of seven tumors and measured the largest at 2.1cm. The MRI put me in Stage II and made me eligible for the Neoaduvant Perjeta. I missed one dose of Taxol and Carboplatin due to low red count and still had pCR after surgery. The dr's were very excited. It's nice to see so many having success with this treatment regimen. It was a little rough but doable. Good luck everyone.
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No PcR here. Tumor did not change in size during the treatment to my horror but turned out it had shrunk from 6,5x4,5 cm to 2,4x2,5 cm so some shrinkage. I have no idea what this means, it sounds so negative, but my onc explained only 20% of patients receive PcR and considering my tumor was highly hormon sensitive it might work better with hormon medication (letrozol). I am a bit more than one year out and scared of recurrence but trying not to think about it every day. My onc explained the crucial year has gone by and now starts another crucial year 2 asking me to check for bumps every two weeks and no more than that...still...how scary is this?
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No expert but I thought I read some study results that PcR vs. significantly reduced tumor size wasn't showing a great difference in the longer run. It seems that you had a 60+ to 50% reduction, Kattis?
It's hard to know how to interpret things. I would have been happy to hear I had no detectable tumor after TCHP but I still had a very small area that held out--around 5-10% the size of the original tumor. I've tried to be happy about that since the TCHP had a clear effect and the residual area was operable with good margins. But the fact that a kernel of bad cells hung on despite assault with several tough chemo drugs makes me wonder if there could be other stubborn cells circulating that could lead to trouble down the road.
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In December 2016, after taking hormone replacement therapy for 2 months to treat severe hot flashes, I felt s palpable mass the size of a marble. In January 2016 I was diagnosed by biopsy with invasive cancer with both lobular and ductal compoments. I finished 5 rounds of neoadjuvent TCHP in May of 2016. After 3 rounds the palpable marble sized lump had melted away. On the post chemo/ pre surgery MRI it showed NED. The pathology results after my double mastectomy on June 9th 2016 revealed a 5cm invasive lobular carcinoma (ILC). Quite a surprise! My oncologist speculated that the palpable mass was the IDC and was what responded to the the TCHP, and that the ILC did not respond at all to the TCHP. The reason the ILC did not show on MRI was because it frequently is obscured by dense breast tissue. I continued with Herceptin for another 9 months, immediately did 5 weeks of radiation, started Femara which I will be on for 10 years. Side effects of Femara were nil for 5 months, then got bad for 4 months, but are now tolerable.
I’m just happy to be alive and happy treatment is becoming a distant memory!
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Kattis, no pcr here either, but my tumor did shrink about 60%, not enough for a lumpectomy according to my BS, so she recommended and I opted for the mastectomy. I'm now almost 2 yrs. 4 mos. from dx and doing well. I'm scanned a lot because of being Stage IV, but I'm curious if your MO plans any scans for you at least once a year?
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Bjsmiller, No scans planned as of now, perhaps because my nodes were miraculously clear? I did scan my bones and torso back in March 2017 but that was on my own request. My onc kept asking me if I wanted to do it and finally I was ready to say yes. I guess they do not scan automatically if the nodes are clear but considering the large size that had grown in-between 2 years of mammograms perhaps he still thought it was a good idea telling me only 5% of patients have spreads threw the blood instead of the lymph system. It did not say in your signature if your nodes were clear or not, what was your status on that Bjsiller? Were you stage IV from the start? I will go to yearly mammograms and ultrasounds instead of every two years normally, that is all I know for now.
Mislill, me to have tried to find out the importance of having a PcR or as in your case a shrinkage of about 50-60% as myself. It makes sense that it would be of course better for a total PcR but as nothing really makes sense with cancer I am not sure at all what it means. Me too are thinking I still have cells circulating in my body not yet forming detectable tumors..though perhaps 50-60% less than when I started...:( My onc also talked a lot about the Ki65 % and seemed more interested in that it had gone down from 30% to 6% after treatment. I am still thinking..well it is not 0% so even if the tumors will grow more slowly, they would still grow. He also stated that being highly hormon sensitive ER+100% the hormon treatment might take care of the rest...That wilder beast that was growing in my chest has for sure gotten beaten down, it is removed from my body, desiccated and analysed. So now it is a waiting game in some sorts just praying and hoping the hormons will take care of the rest...The fear for this to recur is so real I am just trying to take one day at a time, hoping as many has stated the worry will get better over time. If anyone really know the significant value of PcR I would love to hear it.
The fact that the status of the cancer also can change is beyond mind boggling so if it comes back it might not be of the same kind. This happened to a friend of mine. She was HR+ HER- (the most common slow growing kind) but it came back 5 years later as trippel negativ. Saying that she is still alive and doing well but still just the bear thought of this scares me to bits.
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Hi Kattis. I did have three lymphs involved at dx, but think I couldn't figure out how to record it in my signature; maybe in the comment. After chemo, they did clear, but the BS took the sentinel at surgery and found a new lymph involved, but didn't take it because of mobility concerns and since I was opting for radiation. So far, scans have shown it to be clear. I was originally dx Stage 3A and because of that, MO ordered a PET as part of dx protocol. Glad she did because that's when two small bone mets were found and a month later I'm re-staged to 4.
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Bjmiller, sorry to hear that but glad they found them early and can treat them asap. I am not sure how significant clear nodes are to be honest. I was so happy that mine was clear but understand the pure size of my tumor and Ki65% being high is about the same as being node positive. I am very scared to recur but try my best to not think about it even if my onc has instructed me to check for lumps etc every two weeks and to contact them if I feel something strange immediately. I also have my port in place and he wants to keep it there for a couple of years just in case...Not a good feeling...:) I am still a bit over a year into this and ended Herceptin in September overwhelmed and know very little about my cancer. It all seems like such a lottery to me.
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Kattis, I feel you're right that it is a lottery, they really can't determine for sure what will happen to us, but I found researching my cancer and information on these threads has helped and even comforted me. You are your best advocate, so be vigilant, but don't stop enjoying life! It can be overwhelming, but as time goes on, it does get easier. I'm definitely not the same person physically that I was before, but I try not to worry and take advantage of all I can while I can, and so far, after almost 2.5 yrs from dx, I'm doing well. The bc may claim me one day, but I know today is not that day. I remember thinking the surgeon who placed my port was crazy saying that some people keep them forever and my BS was kind of surprised when I decided to keep mine, but I look at it as kind of a good luck charm. As long as I have it, I won't need it, but as soon as they take it out, bam, the bc will be back! Besides, it's still useful for the Zometa infusions which I get every three months. Best wishes and hugs.
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