TRIPLE POSITIVE GROUP
Comments
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Hap thanks and yes I have played around with Predict2 (thanks to a link here on BCO!). It really does give me pause because I'm only seeing a 1-2-3% increase in 5- and 10-year survival from any of the individual therapies. I will calm down (although I am pretty calm--I'm in that post-op sweet spot where nothing will start until I'm healed) once I meet with my MO. I just listened to the HER2+ podcast on the main page here--really no new information but I did like the emphasis on everyone's cancer being different. I'm really curious how hard my MO does (or doesn't) press for throwing the whole available kitchen sink at me. Re: testing, I will get genetic testing done at some point but even my BS said he does not expect it to be positive--I really do not have cancer in my family. I dunno. Decisions decisions. . .
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Hap, I can answer your question about having two distinct episodes of breast cancer (one DCIS and the other IDC, like Ingerp) and the issues of recurrence and treatment. According to my doctors at JH, I am possibly more at risk for another, separate BC tumor (which hopefully radiation took care of) but am not at higher risk for metastasis.
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Hap--BS told me this time is not a recurrence but a second primary (because it's in the other breast and has very different characteristics). No Oncotype for me (last time the RO said she knew it would come back high; this time around the Her2 was <eventually> positive.
Lita--good news about the metastatic cancer!! Is JH Johns Hopkins?
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tld2017, I just completed 12 weeks of TH, with a 1.1 cm node negative tumor. I am at a big name cancer center, and had a second opinion at another teaching hospital in my city, and no doctor ever suggested Perjeta, or a longer course of treatment than 12 weeks. I"m curious why your MO feels so strongly about it for you. Is there something specific about your situation, or is he recommending for all his Her2+ patients now? Is there a new study I missed? b/c the one that is now 7 years out, for 12 weeks x TH, seemed pretty convincing.
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At first, I have been encouraged to see so many posts from people who have been able to successfully work through chemo treatments. However, I just started my first three-week cycle March 13th and it's thrown me off my game in such a big way. I have been trying to make a go of working anyway, but I am feeling so ill and achy that it's hard to concentrate. Any advice or words of encouragement from those who have had a similar experience? Does it get easier as you go along?
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Thank you, HapB. I've been feeling a bit of a failure so far with the treatments. I got off to a clunky start for sure, but I am hopeful it's just a fluke and will level out over time. I would love not to have to work, but I have very limited time off coming to me, so I have to be economical with my hours. I'm now tinkering with different working scenarios.
Anyway, thank you for taking the time to respond. I'm in a pretty lonely place here.
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Hi Still-in-it. Very sorry you have had to join the group. In order to obtain the best information for you, you might complete the diagnosis part of your profile. Different stages and types have different treatment plans and related side effects. We have a few experts here that have all the links to good information. We can help you better with the particulars. Take notes and keep a medical journal.
As you describe, often things are very disorganized at the beginning of treatment as all the actors are in a hurry to get your diagnosis settled upon and start treatment. This means that it is even more important for you to be your own best advocate by taking good notes, logging side effects, and managing your treatment.
I worked until the 6th cycle of TCHP. My employer was very supportive of my situation and allowed me to work a flexible schedule. The 21 days between infusions were a roller coaster. By the time I started to feel better, the next treatment would be around the corner. I taped all the business cards of my care team in my journal and called or went in to discuss side effects. The steroids made me crazy.
My best advice is to stay on top of everything the best you can. Many people can work through treatments. I wish you the best during your journey. Please keep us posted
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Still in it. Don't be hard on yourself! I am not sure what you do for a living but, I am sure that there are those that worked through chemo that may have had less demanding jobs, more demanding jobs OR even had more time available for them to take off. The very few ladies that I know that worked through chemo, had their chemo Friday and their employers were very understanding of the times that they just 'couldn't'. Can you get FMLA to cover the days that you just are unable to go? Please take in to consideration that different chemo's equal different SE's and it may be more difficult for you depending on what drugs you get. Give yourself grace girl....chemo is a bugger!
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Moodyblues, i was like that (sick on the 3rd day after) for the whole time i had just herceptin. Only good thing was it only lasted 1 day. I feel ya.
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Still-In-It…
As others have shared, it is different for everyone. Find your path. And in Moody's words ... don't hard on yourself.
I worked when I could. I learned to ask for help from others. Dang! that was new behavior.
This is a book that my Plastic Surgeon's wife (also a BC Woman) gave me:
https://www.amazon.com/Dont-Waste-Your-Cancer-Pipe...=sr_1_1?ie=UTF8&qid=1521636837&sr=8-1&keywords=don%27t+waste+your+cancer+john+piper
It's about $3.00 on Amazon.
As strange as this sounds, I had to find the "meaning" of my cancer. Not the "why me" but the "why not me." When I found that answer, I found I could handle the treatments.
I will keep you in my prayers for your peace.
Vicky
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Hi Still In It,
I'm going to have to work while getting treatment, but I am able to telecommute. That's been good to know for me. I meet with medical oncologist on Tuesday. Can you telecommute or set up flex hours
I'm curious—do we as patients get to have ANY input on our regimen? For example, I'd prefer 12 weeks of TCH or just TH with the Herceptin continuing for a year and of course an AI. If she wants 20 weeks or AC TH instead, do I get an opinion? The studies I've read suggest weekly T has better outcomes and oddly fewer side effects. And that combining A and H can worsen cardiac symptoms. All along, my care team has been pretty good about listening and helping, but the MO is very new. I've dumped doctors for being “my way or the highway," as opposed to “let's talk about what we can do," which I prefer. In this case, I probably won't have a choice as far as getting a different MO. But everyone has been great so far about options, except for “Skippy” (as I call him, the anesthesia resident on my port). Just curious about others.....
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astyanax66
As TonLee wrote in her opening remarks on the forum...
It is your body. Long after the medical experts are gone you are left with the decisions and effects on your body.
Get what you can live with.
My husband fired my Primary Care when diagnosed. She could not handle her role in a long time treatment.
Thanks to SpecialK I was able to experience thru a second opinion that my MO was not going to work after treatment. I have sought a new MO at a new facility.
Best wishes.
Vicky
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HI Friends. I begin TCH a week from today, ready to move forward but anxious as all get out. My blood pressure has been 20 points over my normal since all this began. Tomorrow I have my heart ekg and other tests. Monday I have blood work. Tuesday I begin Dexamethason and after Wednesday’s treatment I have five days of Zarxio shots that I do at home. This all feels very overwhelming. Any experiences, especially with Zarxio, that you care to share? I am indeed grateful for my great care team, supportive husband and close girlfriends. Thankful for all the good mojo here as well.
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JStarling--no info for you but just a quick update on me. Had first post-op follow-up with my BS today--all good, confirmed I am Stage 1A (WHOOP WHOOP), we talked about activity level (in the end I'm going to stay pretty quiet at the gym until I see him again in two weeks), and made my first appt with an MO for 4/16. At first that seemed far out but it's only about a month after surgery and I decided I'm going to be happy to have a little downtime to clear my brain space. (Have I mentioned I leave tomorrow to see two of my kids in California? HOORAY!!) Also, I looked over the final path report and I had *great* margins (I had told him to "go big" on the surgery--really). Over 3mm all the way around. They found some DCIS as well but there was a a lot of good, clean tissue all around the sample--that's pretty comforting.
Anyway I'll continue to check in but for now I gotta start packing!!!
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Astyyanax - you should have input on your regimen, in terms of deciding between appropriately recommended regimens. What you really can't do is manipulate regimens in terms of timing. Taxol, when given as a single agent, is a 12 week regimen. When combined with other chemo drugs, it can be given weekly or dose dense. Taxotere is a 21 day regimen because of the way it is dosed. If given with Cytoxan it is in 4 doses, with Carboplatin and Herceptin it is given in 6 doses. TCH is not given weekly. The staging info in your sig line would indicate you could receive TH for 12 weeks, so ask your MO to justify any other choice. IMHO, AC-TH wouldbe overkill for you.
Hap - important to note that the study you posted is for use of Herceptin when given in the same regimen with an anthracycline, Adriamycin. It has been long known that using two cardiotoxic drugs together increases the possibility that there will be cardiac issues, the Adriamycin usually ending up causing irreversible damage, the Herceptin when used withou an anthracycline is usually reversible. The drugs used in the study were possibly used with the combo of A and H together, but certainly worth inquiring about
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Still-in-It,
Don't feel like a "failure" for feeling like crap after chemo. Many of us who were able to work through chemo weren't Super Women, just lucky. I did feel like crap after chemo, but since I did chemo on Wednesdays, that tended to happen on Friday, Saturday, Sunday, giving me some time to recover for Monday.
Have you talked to your boss? Mine allowed me to reduce my work commitments so I could work at home more. Like Vicky, I also learned how to accept help from others. It drove my husband up a tree. He's very proud and hates accepting help, but it was worth it. Many people are willing to help out; you just have to give them specific ways they can help. For example, people volunteered to pick my daughter up from athletic practices/games -- what a blessing!
Best wishes!
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hap - I would still maintain that the article’s focus is the A and H combo, and is the reason my MO doesn’t not prescribe them together
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Thanks, Vicky--somehow, I'd missed that "things you should know" post. It was quite helpful. I'm such a control freak, and I think that treatment scheduling being unknown doesn't help...;-)
Great info, SpecialK! I admit to not quite being able to picture all the combinations in my head, but I agree that AC-TH would be overkill, based on my readings. I would love to just have the TH for 12 weeks (and then of course the continued H). Bottom line--I'd love to have this mostly over in 12 weeks for the sake of work issues and such. I could stretch it out a bit, but not much (like a max of 16 weeks). I think I'll just have to emphasize that more than that means quite the cascade of events--running out of leave, leave stops accumulating when you have a leave balance of 0, even with FMLA left--and insurance becomes out of pocket, etc. I think I just need to be "gently blunt" with the MO that, if she can't wiggle a bit with her choice of treatments so that I can keep accumulating leave, then ... beats me...
JStarling, fellow GA resident--I remember my mom taking Neupogen, which I think is a very old Zarxio. (? I could be totally wrong). I hope you do well with it! It helped my mom a good deal. I have a supportive set of friends who live various distances away, but they are tag teaming to assist. Hubby *is* helpful, but he does not understand things like these support boards and mused that he thought I got more stressed reading them. EYEROLL. I explained I just had "thinking" going on! Anyway, I sent him off to a retreat this week since the next 2 weeks will be a doozy of appointments and tests and such.
On a general note, I'm at a teaching hospital. I've lost track of how many studies my blood and such are in, lol (I keep all the iRB forms, of course). Overall, I like working with the students/residents, but I suspect that's because it's what I do for a living (history prof). I've always been told who is doing what and where. Except for Skippy the Anesthesia Resident (who, to be fair, was really nice--just clueless and didn't listen to me), I've had good experiences. (He also left the BP cuff on tight while pushing the Propofol until me and his attending both shouted at him to get it OFF--thought my hand/arm were going to explode). The CRNA student was lovely, as was the medical student who just observed and asked questions (before fainting because she wasn't breathing through her mask--my surgeon says it's a learned skill). My son is pre-med (starts his junior year undergrad this fall), and I hope he's watching--both as far as how to talk with patients with respect and what it's like to be the relative of a patient. What's your thinking--do you mind med students and residents, or are they annoying? I'm going to give mine all an A- at this point. (I hope I don't have to have any more surgery, but I'll ask Skippy to step aside if I do, snort).
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hap - from the study you cited:
"The data showed that ACE inhibitors and beta blockers did not help preserve ejection fraction in patients receiving Herceptin alone. However, there was significant reduction in cardiotoxicity for patients on beta blockers or ACE inhibitors who received doxorubicin (Adriamycin) before Herceptin. The data clearly demonstrated that for patients with HEr2 positive breast cancer taking both doxorubicin and Herceptin, adding either an ACE inhibitor or a beta blocker to the treatment regimen can significantly offset the chance of heart problems." The citation that 1 in 4 patients suffers heart damage is misleading if the decrease in ejection fraction is being counted in that category - most oncologists expect the LVEF to reduce, that is why they have specific markers of decrease they are looking for and also why it is standard of care to have a quarterly ECHO or MUGA during the year of Herceptin treatment.
jstarling - Zarxio is pretty new, most of us had either Neupogen if on Taxol, or Neulasta if on dose dense AC or TCH. try typing the word Zarxio into the search box on the left of the screen - I know I have seen it mentioned in other threads.
still in it - the first infusion can involve loading doses, my first chemo was far worse than subsequent ones, until I got closer to the end then I suffered some cumulative side effects.
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well I just read about 12 pages so I don't remember who said what.
Congrats to those finishing. It's a wonderful and scary feeling all at once.
Heart issues-I sent myself into panic disorder when I was diagnosed. Went to the doc for a sinus infection and heart palpitations and losing a pound a day. My normally low bp was 180. She put me on a beta blocker and Cymbalta. She chose a beta blocker because of the studies on potentially protecting the heart during chemo and herceptin. Said my dose was probably too low to make a difference but couldn't hurt. She chose Cymbalta to hopefully help with potential joint pain. My oncologist said to stay on it until I started tamoxifen. Had to stop as it has an interaction.
Cymbalta-really helped (and does now) with joint pain. Getting off of it isn't fun. You get these brain zaps.
Effexor-took it for severe hot flashes on tamoxifen. worked for a bit then evened out. Again...pretty awful to get off of.
Ports-lifesaver...I swam with mine but always put a waterproof bandaid over it to be safe.
Shelabala-don't know what your infection is, but I had pseudomonas after my mastectomy. It took forever to get it to culture. They had to grow it longer than normal. In the meantime, I did iv antibiotics at home...and anywhere else that I needed to infuse timing wise lol. Once was the back seat of the SUV, with my husband's help at a festival while out friends shopped. We were surprised we didn't get arrested as it looked like we were doing drugs lol.
I went to California for my daughters graduation while still in treatment. I had chemo and herceptin on a Wednesday morning. Got on a plane and flew to Cali all hopped up on steroids. The next day when jet lag kicked in and steroids wore off, we sat under an umbrella all day at the beach sleeping. The rest of the family came out on Thursday and by that evening I was returning to somewhat normal. Flew home Tuesday after graduation. And chemo Wednesday. Fortunately my numbers never dropped too low. I was pretty careful on the plane.
I have been back on arimidex for four months now. I know this will sound weird, and Im Sure it's in my head, but...I was starting to have a lot of the same side effects as before. I did the copay assistance thing and get the actual drug, not generic. I have been taking it a month and most of the joint pain has gone away, and so far, I don't have that lack of energy. I'm Hoping it stays and if it's in my head, so be it.
On herceptin-my Ed dropped and was just down to the lowest level on my last one, but it bounced back again when I was done. They followed it for 3 years I think
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hap - 7 year old article, small study on 51 people whose age averaged 55, with advanced Her2+ breast cancer, with other risk factors for heart disease. Heart disease kills more women than breast cancer does, so it can be problematic to draw a direct line between treatment and the onset of cardiac issues, or infer cause and effect. This article recommends a baseline echo, which is standard of care most places. I was treated when this article was written and I was closely monitored - had a baseline echo, and 4 additional ones at intervals. I had reduced LVEF during treatment, but didnt consider my heart to be damaged - rather viewed it as another side effect that should be watched and was likely to reverse when treatment concluded - like many of the others I experienced - which it did.
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I did it! First chemo done on Tuesday and I'm still feeling pretty good! Honestly, the infusion part of my day was easy. I was groggy from all of the pre-meds they gave me, which was actually a good thing. The hardest part of the day was all of the frozen stuff: the cold caps, the frozen mitts, and the frozen socks. The cold cap was so heavy on my head that my head was wobbling back and forth in my grogginess. And the frozen socks - oh my goodness.... I understand and have read the studies that say how much this helps with prevention of neuropathy but it is not fun one bit. I'll do it but I ain't gonna be happy about it.
Anyway, just wanted to thank you ladies for your encouragement and positivity! 11 more to go but I CAN DO THIS!0 -
Congrats, tld!
I did Taxol as well; I found it to be doable (though I didn't do cold caps and didn't ice my hands and feet). Take it easy! I remember how Taxol slowed me down a bit; couldn't keep up with my sons while scootering.
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Elaine, did you have any problems with neuropathy during Taxol? I'm wondering if those frozen socks are really necessary, even though I've read the studies on it. Because if I can get away with not doing those darn things, I would be a happy camper!
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tld,
Not with my feet. I did pick up a little neuropathy in my fingertips, but it's not debilitating unless I planned to participate in a race focused on buttoning up shirts. Obviously, I can still type and write and the important things. Side effects can be unpredictable, but generally I don't get them. Just lucky I guess.
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tld I only had mild neuropathy in my fingertips at the end. Gabapentin helped and eventually it went back to normal.
I did lose all ability to taste my food. Normal, but uncommon side effect. Don't freak if it happens. That too came back. My MO was fascinated by it because she rarely sees it.
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Thanks, Elaine and Tresjoli2! It's hard to decide if I should continue with the cold mitts and socks. I am grateful for your input!
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tld - I am less of a believer in icing for neuropathy prevention because I think local icing is not enough to ward off something that is caused neurologically. I did ice, but I had Taxotere and I was more worried about loss of my fingernails and toenails, as this is a more common SE from Taxotere. What I did for neuropathy prevention is supplement with 30g of L-Glutamine (10g of powder 3 times a day dissolved in a cold non-acidic drink), a B6 capsule, and while some are leery of this based on mega-doses worsening the problem in trials - I did take Acetyl L-Carnitine, but I would limit it to the recommended amount on the label. Of course, run all of that by your oncologist if you decide to ditch the mitts and socks in favor of supplements. Mine was fine with the icing and supplementation.
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wow, Hapb...that sounds incredible and let’s hope things speed to market (wishful thinking).
One of the top oncologists in the world who has focused on Her2 bc has gone back to the lab full time. This is Dr. Blackwell of Duke. She was splitting her time between the clinic and the lab and speaking engagements. She’s hunkering down with Lilly I believe. That makes me happy.
Apparently there are a couple Nerlynx trials going on here in Canada. I missed the boat with the first, but may look at the second (which will look at dose escalation as a focus of the trial).
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Oh Elaine Therese- you gave me the best laugh of the day. A shirt-buttoning race... As someone starting Taxol next Wednesday, I am fearful of side effects, no matter how well I did with AC. Thank you!
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