Dealing with residual tumor after neoadjuvant therapy
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Hapa,
How is the radiation going?
When u stopped receiving your chemo treatment, how much time elapsed before your surgery? I ask because many of us, like ADDK and I, have to wait 5 or 6 weeks. In 5 to 6 weeks, an aggressive cancer can GROW substantially? Waiting 5 weeks, my surgically removed tumor exhibited no chemo scars or had any Swiss cheese holes. Therefore, I think my tumor was quickly adapting and about to take off and fly. As I write that, I get pangs of anxiety and shivers up and down my spine.
Despite my results, I am grateful to read that your tumor indicated less density due to chemotherapeutic treatments. I am glad the meds were working. That is positive.
Any words about Ibrance on the insurance front? Remember that if insurance will not cover the costs, there are options. Most drug companies have patient assistance programs or there are many viable prescription discount cards found online (don’t know if that is a big saving, but the pharmaceutical’s program should offer a big cost reduction). Ibrance has a special program in which you would have no co-pay. https://www.ibrance.com/?source=google&HBX_PK=s_ibrance&skwid=43700021617511434&src_code=IBRW10028851
Apply or call and see if your eligible. What is the worst that can happen? They say “no.” Big deal. We have been diagnosed with cancer. We are fighters. Let’s go!!
Giveityourall
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Bellasmom (I love the name - Bella),
I researched Nerlynx. Although Nerlynx states the clinical trial results proved 30% efficacy, National Cancer Institute (2017) states differently. BTW, Hapa discussed the skewed results in one of her posts.
Per National Cancer Institute (2017),
In the international randomized clinical trial that led to the approval, about 94% of patients who received 1 year of adjuvantneratinib were alive without their disease returning, compared with just under 92% of women who received a placebo (https://www.cancer.gov/news-events/cancer-currents-blog/2017/neratinib-breast-cancer-fda).
Yes, that is a two percent gain. For those who fall under that 2% status, I am happy for them. At my juncture - one of the 45% or so that did NOT have a Herceptin sizzled tumor - I don't think I would select this drug. I had a 50/50 chance (approximately) with Herceptin. We know that result. So a 98/2 chance (2% success rate is not too enticing. But that is for me. The drug may be perfect for your scenario. I am just providing some credible evidence for you to consider. I don't know about u, but I did not receive proper patient education. No one told me that Herceptin did not work for everyone. No one discussed heterogeneity - that a tumor can include several molecular cancer types. I went in blind. I was dumb. Now I am dumbfounded by my naivety.
Giveityourall.
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Hi Giveityourall, thanks for asking. My radiation is almost done. 4 more treatments. It has really taken its toll, my skin is all blistered and itchy as all get out, and I'm really exhausted, and tired of trying to stuff protein down my throat. I waited exactly six weeks between the end of chemo and my surgery. It was a nerve wracking wait, and I wasn't happy about it but my surgeons wouldn't move it up for me. My surgery was on my husbands birthday, no less. I see my MO in about two weeks, I doubt he has even put in for insurance approval yet.
For the Nerlynx, 94% vs. 92% would be considered a 25% improvement in survival. The only reason it is only 2 percent is because treatment is now so effective that 92% would derive no benefit from further treatment. I guess you could also think of it this way: Out of 100 people, there were only 8 people who could possibly get any benefit from nerlynx, the rest would have been fine with or without it. 2 of them benefited. So 25% of the people who could possibly have benefited from nerlynx did. (I assume they got 30% and I got 25% because you rounded the numbers?) If my MO prescribes nerlynx, I'll probably take it. If I have terrible side effects, I'll stop. That's the nice thing about drugs/chemo. You can just stop and the bad SEs go away. It's one of the reasons I really didn't want to do radiation. Once it's done you're stuck with the side effects for the rest of your life.
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Hi all,
I had residual cancer after TCHP & two surgeries. I was on Herceptin only until the re-excision and my MO put me back on Perjeta. The plan at that point was to finish out the 18 cycles HP, continue with radiation, but add in a Salpingo-Oophorectomy a few weeks after finishing radiation and adding in Nerlynx for a year after finishing HP. Today, my MO sent me a message similar to what AbbyPuff's MO said, and would like to meet to discuss the results of the KATHERINE trial https://www.nejm.org/doi/full/10.1056/NEJMoa1814017. When taking Kadcyla instead of Herceptin, 88% of patients were cancer free at 3 yrs, as opposed to 77% that took Herceptin (Herceptin only, however, many patients had already had Perjeta previously). She said there's not any info on whether a year of Nerlynx is beneficial after Kadcyla treatment. We'll be meeting next week to discuss. From what I've been able to glean, both from my MO and from my own research, we are the underdogs and most women have a better response to TCHP then we have, so we are more apt to have a variance among our treatments because there is not yet a tried & true treatment plan for us.
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My MO is excited about the KATHERINE trial results, it reduces our risk of recurrence by half according to the results. Very exciting! I'm meeting with my MO Friday to discuss switching treatment from HP to Kadcyla for the last few months of my adjuvant treatment. I wish it had been available sooner since I'm finishing treatment in March. But it might at least give me some reduced recurrence risk. So happy for everyone coming behind us that will benefit!! This is a big win for those who don't get a complete response!
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All,
Just out of curiosity, did your residual cancers have the same ER/PR/HER2/Ki67/Grade # with those from the clinical report or not.
I was under an impression from the BS that chemo "killed the most aggressive cells and just left behind the most indolent cells". If that is the case, the residual cancers have to have different "signature" for those ER/PR/HER2/Ki67/Grade #, true?
Thank you.
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According to my NP and post lumpectomy reports, I had a patchy area of cancer cells remaining in my breast but no longer a lump and a few axillary nodes contained micro mets after neoadjuvent abraxane with H&P. Since I am stage IV de novo, I stay on H&P indefinitely. I did develop brain mets post treatment but since brain and body are treated independently, I continue with H&P, which has kept me stable below the neck. It’s still my first line of treatment and I’d love to get a few mire years out of it.
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I would imagine that most oncologists will be having the Kadcyla discussion with patients over the next couple of months. I know I'm asking when I go next Tuesday! I had a 5.2cm mass and only had scattered cells at the time of mastectomy, but I'd be willing to start the adjuvent treatment over if it makes that much of a difference. I'm ER-PR- so Nerlynx isn't recommended.
Hapa - hope your radiation ended and all is well. I'm on 18 of 25 and the fatigue is hitting me, too. My bedtime is getting earlier and earlier
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wlo002,
Just out of curiosity, your "scattered cells" had the same ER/PR/HER2/ki67/grade or not? My wife also happened to have one "tiny" left. We were thinking why it did not get killed by chemo, but it turned out the residual was a grade 1 and with ki67 < 10% and therefore was very "indolent". Does the chemo not suppose to kill indolent cell?
Also, my wife will have the radiation in about a month, the MO sounded like 3 weeks or so, so it is about 15 to 18 times, would that be "standard"?why would you need 25?
Yes, I believe the kadcyla will be mentioned very often now. But when I emailed the BS yesterday and he sounded like since the chemo killed all the aggressive cells and it may not be worthwhile to deal with a tiny indolent leftover with the medication. We are going to discuss it with the MO next time.
Thank you.
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Met with my MO Friday and I’m off HP and starting Kadycla next week. One surprise, he is hitting the re-set button on my adjuvant treatment and I’m going to do the full 14 cycles of Kadycla that were used in the trial. That adds an extra 6 months to my adjuvant treatment since I only had 6 HP left to go. But, he thinks it will help me get the full benefits that were achieved in the study. I hate to have more treatment, but I have a high recurrence risk and 2 young kids,so I’m all in. Hopefully Kadycla won’t be too bad.
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LilyCh - I honestly don't know much about my remaining cells. I didn't know that they retest them until recently but that's on my list of questions for seeing the oncologist this week. As far as radiation goes, I thought 25 was the least you could have. Most women I know have had 30-33. I wonder how that is decided...?
Abbypuff - please let us know how it goes. I have high hopes that my oncologist may let me change over to Kadcyla as well.
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wlo- I’ll definitely let you guys know. I’m nervous to be going back on a chemo drug, it’s been relatively easy on HP and I’m torn between anxiety and excitement at the prospect of new treatment.
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Good Morning, I will be asking about Kadcyla at my appointment tomorrow as well. I believe I have 5 or 6 HP left counting my scheduled infusion tomorrow. I at least want to discuss whether switching would be a good idea for me, although the prospect of starting over and/or worsening side effects is daunting. If something really works 50% better, I think I want it.
Those of you that are switching/starting over--have you had any pushback from insurance? Would Kadcyla treatment for early BC be considered "off-label"? My HP treatments have a starting price tag of about $30k per infusion before insurance discounts and are 100% covered for me currently since I hit personal max out of pocket for this year. I can't imagine that Kadcyla is less.
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wlo002, testing and reporting the status for residual cells is considered "optional". I was really interested so the BS asked the pathologist to retest it.
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Sidalee - it really is a daunting prospect to start over, I'm wondering if my neuropathy will get way worse. My MO did expect some push back from insurance but felt that with the 50% improvement it will most likely be approved after he appeals since it's such a drastic change in recurrence risk. I'm on blue cross blue shield. He said if it's not approved he will put me on a program he works with through the manufacturer and he can get it for free that way until insurance approves. He reassured me that I can start this week so I'm trusting him to get it worked out by Friday.
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hello,
I had residual active cancer after neodjuvant chemo and mastectomy. My oncologists recommended 6 months of xeloda, which was not so bad. I was able to function really normally throughout. Ayear later I can say it was worth it to have the peace of mind from the extra protection. Have your oncologists encouraged or discouraged taking it?
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My insurance approved Kadcyla after 3days. I’m on blue cross blue shield. I started Friday and my first treatment has been great so far, no SE yet. I did get Benadryl, and an anti nausea pre med before the Kadcyla. Other women at my cancer center are switching over as well. There are 3 of us that I know of who were switched to Kadcyla.
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I had my appointment at my MO's office and HP infusion last Tuesday. I ended up with the PA who politely admitted that she didn't know anything about Kadcyla and was not able to have the discussion about switching from HP with me. She was strictly there from Hematology to help out with clearing patients for their infusions. I was really disappointed, now I have to wait until January 2nd when I see my MO to have the conversation. I only have 5 HP infusions left. I wonder if it even makes sense to switch at this point.
It is encouraging to hear that Blue Cross is covering Kadcyla for you Abbypuff!
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Sid - can you just send a message through the portal to have your MO call you to talk about Kadcycla before your next infusion? The PA should have at least talked to your MO about your question, though I find the mid levels to be less than helpful at times.
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Hey hapa,
I thought about emailing him, but it just seems like a waste of time with everyone going out for the holidays. I probably will anyway so he knows that I want to discuss it and he hopefully prepares for the 1/2 appointment.
How are you doing, are you back home now?
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Yes, back home. I'm getting ovarian suppression on Friday. Next Herceptin is 1/2 as well but I have no appointment beforehand. How often do you see your MO? I've seen mine three times, ever. Once was after my surgery because I was freaking out over my path report and his NP didn't know how to read it so she got me an appointment with him. I'm not scheduled to see him again until I finish Herceptin. I think that will be my last visit with him (ever) and my follow up will all be with the NP. I'm thinking about finding a new MO because just asking a simple question (I wanted to know why I wasn't having any kind of hormone testing before doing the ovarian suppression to check and see if maybe I'm already in menopause) is like pulling teeth because it has to go through a receptionist, then a nurse, then to him, then back to the nurse, then to me. Half the time I don't even know if the right question was asked when I get the answer.
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Giveityourall, this is probably too far off the topic of your thread, but I am answering your question from November 24. Yes, I had a liquid biopsy when my onc and I were contemplating my rising tumor markers and what treatment I should change to, because there was not a big enough liver tumor to biopsy. The Guardant 360 showed a Her2 mutation and said neratinib (Nerlynx) ought to work on it. We opted for the standard Xeloda, which has been fantastic, but my onc says my next treatment (when needed) will probably be neratinib. I suppose it will be with faslodex, maybe the trial mentioned in the BCO article you linked. But I am hoping the pill form of Fas will be available by that time. We will also do another biopsy, hopefully liquid again.
Hapa, I absolutely hate that telephone game where you have to go through the receptionist and nurse. At my cancer center we can email our oncs. I don’t abuse the privilege, keep it brief and email the NP when appropriate. Sometimes I email a preview of the questions I am going to bring. When I found myself seeing the NP at appointments (who is great by the way but not an oncologist!) I asked so many technical questions, she gave up and sent the doctor in. Ever since, that’s who I see. If I have to leave a note with a receptionist I always ask them to read back to me the message they have taken. You certainly are right to want time with the oncologist to get your questions answered.
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hapa,
I have always had the same problem trying to email my doctors...has to go through a receptionist, to a nurse and then maybe 3 days later the doctor gets it. Last night I logged into the new portal system and now I am able to select and directly email any of my doctors so I sent him a short note telling him I wanted to get his thoughts on whether changing drugs made sense for me. He replied back today and basically said we can talk about it, but it's complicated. He sighted the fact that I am already coming up on #9 of 13 HP infusions, that Kadcyla SE's should be considered and cost/FDA approval status could be a challenge. So, we will discuss it at my appointment on 1/2, but it sounds like he's leaning away from making a change at this point for me.
I see either the NP, PA or my MO every 3 weeks before each HP infusion. On average, I think it ends up that I see my actual MO about every 4th visit. He did do blood work to check my hormone status before starting the Zoladex shots. I will receive my third shot on Monday 12/24, lucky me. The shot made me feel crazy emotional for the first week or so, but that leveled out. I started Femara on 12/3 and that had me thinking some very dark thoughts for the first few days and then that also seemed to settle down. I am having some very mild hot flashes, but otherwise I'm crossing my everything that being on the AI will continue to be this tolerable.
Glad you got back home safely and RT is behind you. Keep us posted on next steps.
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Dear Shetlandpon,.
First, thank you for responding to my question/comment.I greatly appreciate your input and value everyone's posts. Personally, I think liquid biopsies are way cool. However, I do not know of anyone.....but lucky you......who has had one. For breast cancer patients classified with HER2 positive along with hormone negative cancers, we are not offered a tumor sample test that specifically pinpoints the best treatments. It is more of a hunt and peck ordeal in the United States; and I find it to be extremely frustrating and downright dumb. Although I am sorry that you are dealing with cancer crap, I am thankful that you have the opportunity to use advanced tests/treatments.
You stated that your tumor markers were up. If you are willing to share info so that I can further my understanding, which tumor markers were high? Every three months or so, I have CEA and CA 27-29 examined. I had surgery at the end of July 2018. My October 2018 results for CEA was 5 (reference range 0 to 6) and for CA 27-29, it was 14. In October, I was diagnosed with a pretty bad ulcer (lovely side effect from chemo) and I was told inflammation can increase the CEA number. I am not sure if my "5" indicates the need to marinate In a bath of docetaxel or not. I am sure that there is more that I don't understand than do understand.
You stated that the Guardant 360 showed a HER2 mutation. What was the mutation? Was it a truncated HER2, also known as p95HER2? Truncated, which means shortened, is describing a HER2 tumor with greater amplification than expression. In other words, your tumor did not possess a lot of extracellular proteins or receptors, which denotes expression (IHC determination). Instead it had more intracellular HER2 proteins (on the genes), which denotes amplification. A FISH determines the intracellular ratio of ErBb2 (HER2) to CEP17 (chromosome enumeration probe 17).
This stuff is so confusing!!
Thanks, GIVEITYOURALL
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Abbypuff,
What aspects of your tumor made you a good candidate for Kadcyla versus another drug? Why did you choose that one?
Thanks, GIVEITYOURALL
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Nickel103, My doctor wants me to go on Xeloda. I dread the thought, but am not sure if that should be my drug of choice. My surgically removed tumor had an IHC of 2+ (equivocal). My ERBB2/CEP17 was 8.0/3.50. So, I have more amplification than expression. As such, I know my next drug must address intracellular pathways versus extracellular dimerization (like Herceptin and Perjeta). I know it is primarily used for triple negative; but I do not know if it is considered a more viable drug for basal versus non-basal like cancer cells. My tumor consists of basal like cells. In addition, I believe it is similar to 5-FU, a common chemotherapy medication. Did you do two weeks on and one week off? Was your surgical tumor defined as having greater amp!ification versus overexpression?
I am glad you handled Xeloda well. That is great news!! I am more thrilled that taking Xeloda resulted in a positive outlook.
GIVEITYOURALL
MERRY CHRISTMAS/HAPPY HOLIDAYS!!
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Giveityourall - I had 4 cm of cancer in my lymph nodes before treatment, after treatment with TCHP, I still had 2 cm of Swiss cheese like cancer remaining in my lymph nodes. Having cancer remaining in lymph nodes has more risk than if it were remaining in my breast (which had a complete response). I’m a stage 3a with a mediocre response to treatment and so my recurrence risk is high. I started talking to my MO about Kadcyla as soon as I heard the study results because it’s a chance to reduce my risk in half. I’m 46 and my youngest daughter is 12 and I want to be here for her. I had my first treatment with Kadcyla over a week ago and my only SE so far is fatigue. It’s worth it to me to extend treatment at this point. My MO seems confident that this is the new standard of care for patients with no pcr.
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Hi all, I just saw my MO today and he is recommending TDM1 had redidual tumor left n my breast and 3 nodes after TCHP I just have 2 HP infusions left but if he can get my insurance to ok it I will start TDM1 next infusion. Would love to hear how others are doing on it with side effects etc anyone here or on other threads posting their experience? TIA
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Abbypuff, I am glad u and your doctor have confidently chosen Kadcyla as your next step. I am very uncertain of my next step. I do not trust my doctor like you do. In my eyes, my care was below par. Conducting a medical office visit every three weeks, my medical oncologist spoke with me for no more than 10 minutes. I did not learn much, but I did learn to be my own advocate. So, I began to read every possible cancer textbook. It is difficult stuff to understand, but I have learned that the more you know about your tumor (its possible subsets), the more likely you are able to select the best medicine/treatment.
For example, I have learned that HER2 tumors are known for their heterogeneity. One part of the tumor may have a greater amount or smaller amount of HER2 protein expression than another. The HER2 protein expression refers to the extracellular receptors, the receptors that sit or are located on the outside of the cell's protective membrane. Herceptin and Perjeta are medications that target or affect these extracellular receptors. Essentially, the medications attach to the cancer cells' receptors; disturb the cell's signaling process; and will eventually cause the cancer cells to die. So, if your IHC reports your HER2 overexpression as 3+, (versus 0 or 1+), then H&P have a greater chance of negatively affecting your cancer cells (https://academic.oup.com/ajcp/article/142/6/755/1766313).
I am sharing these facts with you not to highlight my new knowledge (anyone can read the same stuff and learn it). I am sharing it with you to highlight your selection of a good medicine. The TCHP cocktail worked for you. I assume you had a good amount of HER2 protein expression.. So, Kadcyla, which contains trastuzumab, will inhibit the receptor's ability to promote cell growth. Then, Kadcyla's other component , emtansine, is similar to taxotere. They both “freeze" the cells' tubulin; this prevents mitosis or division of the cell into two daughter cells; and will cause the cancer cell to die (https://www.drugdevelopmenttechnology.com/projects/kadcyla-trastuzumab-emtansine-treatment-breast-cancer/).
That sounds like an amazing drug for breast cancer patients with HER2 overexpression.
My problem is that my tumor's IHC was determined to be a 2+ (equivocal) and my FISH , , which is an intracellular test used to determine amplification (https://link.springer.com/article/10.1007/s10549-018-4755-5) reported 12 ERBB2/3 CEP17 in a small section ......More of the tumor showed a ratio of 6 or 8 ERBB2/3 CEP17. So, my FISH results were a low 2.30. I don't think my tumor has a lot of HER2 overexpression. Therefore, H&P will not work for me. However, it sounds like that is a great medicine for u. Let us know how it goes. I am glad that your only side effect has been fatigue. Personally, I think dealing with fatigue, especially as a mother, is tough. However, you have a positive attitude and are being proactive. That is super smart!!
Giveityourall
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Hapa,
You are a smart woman with valid questions. I think doctors shy away from answering many of the questions because so much is unknown.
Also, I am not thrilled with my MO. I am so angry that he allowed my RBC count to plummet during my chemotherapy. My chemo induced anemia delayed my surgery and allowed my tumor to grow.
How are you feeling? Things better?
Giveityourall
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