TRIPLE POSITIVE GROUP
Comments
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Thanks Moonflwr912 and SpecialK. What's on my mind is being concerned about not being prescribed the standard protocol of Taxol plus Herceptin. The comparative efficacy of the Herceptin Navelbine regimen, not the differences among S/Es, is my concern. Like all of us, I want the best chance of preventing a recurrence whatever regimen it takes. And not seeing anyone else in Stage 1 on first course Herceptin/Navelbine concerns me.
Guess I'm concerned that the "tried-and-true" standard protocol was not recommended for me. I have no co-morbidities. Maybe MO is trying to spare me from the harsher meds given that chemo may be over-kill/over-treatment for us with an early stage, small HER2 positive tumor. We have no way yet of knowing which of us in this small subset would definitely benefit from any type chemo, as I understand it. Chemo's a crap shoot. Just want to take the best shot!
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running cello, congrats!! That's awesome news!! I am about 5 months ahead of you....lets keep hoping for NED
Sammy3, It's all so overwhelming at first. I actually met with 3 oncologists and went with the treatment plan that 2 of them had recommended(which was TCHP). You should have an echo(ultrasound of your heart) every 3 months to keep an eye on your heart. I finished Herceptin Feb. 2015 and never had any heart problems. I totally agree with Amstar15 and try to take it a day at a time. Believe me, I know it's easier said than done. Everyone is different and responds different to the treatments but for me I had nausea, horrible dry mouth and yucky taste in my mouth for the first week or so, was really difficult to eat(I lost 10 pounds during treatment and really didn't need to lose any), had horrible rash/acne on my face and scalp(it was painful) my MO did prescribe a topical antibiotic gel that helped so much!, diarrhea(bad, like having to run to the bathroom to make it there in time), heavy/sore legs....it was the wierdest thing, if I bent down to get something I could barley stand up after, dry skin. PM me if you would like suggestions on things I did to help with these things! I was not stuck at home, I actually continued to work(although I am part time and only work 2 days a week). I would work Mon and Tues, have treatment on Wednesday then work the following Thurs and Friday(so had a week off after chemo). I have three kids(at the time they were 11, 10 and 6) and I did everything that I did before, my husband was amazing and if I was tired I would rest or go to bed early but never missed a function, practice or game(they are all very busy with activities). I did everything in my power to make things as normal as possible for my kids.
I wish you the best and the women on this site are AMAZING!! If you have a question about anything don't hesitate to ask!
Kath
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Thank you so much everyone - you are making me feel better. I am having the port placed Monday (also the echo before that). Then I am going ahead and starting on Wednesday. I will take it one day at a time and keep very close lines of communication with my MO. Thank you!!!!
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I have my 6 month check up with my breast surgeon on Friday next week. I'm a nervous wreck. I don't know why...I just finished treatment and the odds of the cancer being back already have got to be really low. But the thought of another mammogram is extremely anxiety provoking for some reason. :-(
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running - yay!
Tres - finishing the most active treatment phase is an anxiety provoking time and people commonly experience trepidation - you feel like you're not doing enough to keep the cancer away, and you are not as all consumed with coping with treatment so your mind goes to the future, etc. To have a mammo on top of that just makes all that worse, but try not to worry
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keepsake I had a friend with advanced staged cancer (HER2+ only) that did Navelbine. It's a great treatment because there are less side effects from what I hear. I do believe it might be newer and more expensive or possibly not tested on early stage so it isn't given as first choice unless there is an issue. Insurance doesn't want to pay. But that was a few years ago so things may have changed
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I've never had a good mammo lol. No clue what that's like. Maybe it's post traumatic stress
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@keepsake, I think you and @lago could be right about the Herceptin/Navelbine combo. Because of the ACA (Obamacare), insurance companies may now be paying for Navelbine where they wouldn't before because of expense. It also could be that your MO has seen studies that say it's just as effective on early stage BC and thinks since you are so early stage that "the standard" would be overkill for you and is trying to save you from more adverse SEs.
@jerseygirl, so glad to hear from you and that your surgery went well.
Best wishes to all.
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I just thought of a couple questions today. What do you guys wear to chemo day? Sweats? Do I need a special kind of shirt to access the port? Do you wear contacts or is that a no-no?
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wear anything comfortable. You will be there for hours. I wear a v neck t shirt for the port access. I actually am wearing the same shirt to every chemo and I'm going to burn it when I'm done. 😀
If you are getting the neulasta on body injector, it can go on your tummy or the back of your arm. Wear loose pants or sweats if you want it on your tummy.
I don't have any input on contacts. However,, I will say that my eyes have been irritated during this whole chemo process.
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I usually wore a tank style or scoop neck t-shirt under a zip up track jacket or sweatshirt. I iced my toes and fingers during Taxotere so I wanted to have layers for warmth. I have a subclavian port so it is up pretty high. I usually wore yoga pants or track pants.
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thank you all
I wore a zip up and comfy pants for every treatment. It was a good 8 hour process each time I went and majority of the time was spent "waiting"! Have a good book or a nice group of folks with you, if possible. My husband came to each treatment and some relatives would come and we'd play cards. It made the time fly & created some wonderful memories!! Good luck with treatment, folks
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lago and bjsmiller, thanks for your responses! If I remember correctly, my MO did address the possibility (?probability) of hormonal treatment being the more effective agent for me in preventing recurrence, the SEs of different regimens, and how and why pharmaceutical companies differ in promoting their drugs for use with different populations so that they are, or are not, tested extensively in randomized trials (unfortunately, the details of which I cannot trust my memory to recall accurately now). Consideration of these factors also likely influenced her regimen choice for me, personally. Obviously, she has taken my personal medical history in account along with other factors to recommend a specific regimen for me, and may have concluded that I may not do as well as other patients on the standard regimen, or perhaps, would not likely be able to complete the standard regimen's course. Your input about how Obamacare's influence on insurance companies' payment policies regarding different regimens possibly being a factor in regimen choice is interesting.
With the help of you all, I able to process this experience better and clarify my thinking. I am very grateful for all your input and that these forums exist. I see the need to ask more questions at my next visit and to bring a notebook to help me remember both the scope and details of the discussion so that I feel comfortable moving forward.
Thanks!
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Does anyone know the difference between Taxotere and Taxol? I was switched from Taxotere to Taxol because of an allergic reaction. I have to have the Taxol every week for 9 cycles. I asked my MO if it was just as effective, and she said yes. Just wondering if anyone had any experience with switching from these two drugs and should I be concerned with it being just as effective. My MO said it was in the same family of drugs.
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dawntastic - Taxol is the older drug, and Taxotere was the product of looking at ways of making Taxol more effective - both are taxane drugs with the same type of mechanism. While Taxotere is more potent - thus the dosing differences, Taxol is very similar in treatment efficacy. It is more common than you might think to have to make drug switches, don't let that worry you.
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SpecialK - Thank you for the quick response. That does make me feel better.
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All of you who are responding to us first-timers are so amazing and appreciated!!!! Thank you!
Thinking to the future, when you are done with your 6 rounds of chemo & go to the every 3 week herceptin - are you getting both herceptin and perjeta at that time, or just herceptin?0 -
dawntastic - another positive about Taxol is the weekly dosing is easier on the system, and because it is an older drug it has a proven track record. Watch for any signs of peripheral neuropathy (tingling and numbness) which is common, but report it to your MO if it happens.
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I had to switch from Taxotere to Taxol, and then later to Abraxane. My biggest compliant was that instead of two bad weeks and one good week, all three weeks were tough. BUT the side effects were not as bad--except for the neuropathy which just never gave up and I ended not doing the last 4 weeks of Abraxane.
My first Herceptin-only infusion included Perjeta because it was pre-surgery. Post surgery (this week) it is Herceptin only. I believe that is an FDA issue. My MO has said he wishes he could give Perjeta weekly and for the whole year, like Herceptin, but it is not approved that way yet.0 -
Keepsake, I'd get a second opinion. Sounds like you are really not comfortable with the navelbean, as yet. A second opinion might make you comfortable w/ the first onc's opinion or possibly not. very likely second onc could give you much more info which would allow you a much more informed decision.
Good luck!
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SpecialK - Thank you. I have found weekly Taxol to be easier. So far, I haven't had any tingling or numbness.
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Sammy, I never wore my contacts on chemo days. In fact, I didn't wear my contacts much all during chemo. My eyes seemed to be drier.
I did not get Perjeta after my chemo treatments were done but I have read about some women that have. I'm sure the specifics of your staging and insurance determines whether you do. I was able to get Perjeta adjuvant. My insurance never even questioned it.
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To clarify, I think you get Perjeta adjuvant if all your chemo is post-surgery, but only in combo with other chemo. My MO said I would get Perjeta at my Herceptin only infusions until surgery, then he had to stop it.0
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FDA approval was based on Perjeta being given neoadjuvantly. There have been a few women that have said they received Perjeta neoadjuvantly and then again adjuvantly with Herceptin for the remainder of the year. Idon't think the guidelines are as strict as they were when it was first approved.
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I got my Perjeta neoadjuvantly, so I didn't get it as a part of my adjuvant treatment. Frankly, I don't think my insurance would have paid for it. Perjeta ain't cheap.
Sammy3: I wore scoop neck shirts for infusions. Elastic waistband pants are handy for shots -- I still get Zoladex shots in my tummy once a month.
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sammy, i once had a bad chemo brain day and showed up for my tx in a turtleneck. LOL. No prob. I lifted up my shirt, they popped the port, tucked the tube down the front and connected it. LOL. So just wear comfy clothes. If your feet get cold take off your shoes and pop on the hospital socks with the rubber bottoms, I'm sure you have t least one air. And if you're cold, ask for a blanket.
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My protocol involved taxol from the beginning and I had a pathological complete response. So don't worry about efficacy with taxol. It can work quite well.
I have also been on herceptin and perjeta since before surgery and I am allowed to continue through the end of the year. I think the criteria for perjetainvolved a tumor over two cm and nodal involvement.
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Ok I am as ready as possible to start. Port was installed yesterday, and my first chemo is tomorrow.
Question - in my case I had a lumpectomy in Nov that left me with clear margins and negative nodes. I am still planning on bilateral mastectomy next year due to brca. But I am just curious - how will I know if this chemo did what it was supposed to? I know some of you have a tumor to track, etc. For me, is it just a waiting game? Its again on my list of questions for oncology, I was just curious of your experiences.
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The benefit of having a BMX is that they will be able to tell if you had a pathologic complete response to chemo when they send your breast tissue to pathology
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I have a rads consult tomorrow. Wish me luck. With my age (36), the fact that I had multifocal tumors, triple-positive, yada yada. . . I really hope I don't need rads. My surgical margin was 1.5 mm, for whatever that's worth. I'll probably check in tomorrow with the million questions that I'm sure to have!
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