Any (IDC) ER+ / PR- / HER2+ people out there?
I haven't seen a recent thread for this combination.
Does this mix mean a very different course of treatment? Or just certain targeted therapies and not others?
I've only recently been diagnosed with IDC and am still deciding on a course of treatment, so I'm curious to hear about others' experiences.
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I was thinking of a lumpectomy, but my tumor is around 3cm, and I'm a B-cup. Surgeon said lx was possible. But I later saw in her report that she thought it wouldn't be a great result, deformity-wise (she may have said something about that during the appt, but I don't recall--or I said some minor deformity wouldn't matter... Hmmm...!)
I just saw an oncologist today. Taking lx into consideration, his plan was:
Neoadjuvant chemo to shrink tumor.
Taxotere Carboplatinum and herceptin-- 6 cycles with Neupogen prophylactic
Surgery after (3-4 weeks after chemo ends)
Herceptin every 3 weeks for one year
Radiation
Femara for 5 years.
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I asked about Perjeta, but he said it is usually used with Adriamycin and he didn't like the SE risks (cardiotoxicity and rare risk of leukemogenesis)
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DId any of you have try a similar course?
What do you think about this?
Have you found treatments that work well with our particular combo?
Any other things to consider and discuss?
Comments
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Hmmm... is this combination that rare? Or not so many checking in here?
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Count me in. You can see my treatment in my profile. I will complete H and P in March
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Oh, waterdog!!! Thank you for joining in! I hope you don't mind if I ask some questions? I'm still trying to sort out my treatment and have tons of questions!
1. MO suggests taxotere, charbo platinum and herceptin only for me. I asked about Perjeta and he says it is only approved for use with Adriamycin and Cytoxan, as you were given. Is that what your MO told you? I've seen that Perjeta is also approved for use with taxotere... but my MO said that wasn't the FDA Protocol.
My MO says he doesn't like possible side effects of Adriamycin and CYtoxan. Is there a reason you had those plus Taxotere?
2. Lumpectomy-- I was thinking of doing that, particularly as neoadjuvent chemo would shrink my 3cm tumor! But many people seem to get mastectomies, even so. What did you base your decision on?
3. SNB. You had it with surgery and not before. I guess your doctors were cool with that. My current MO is. But so many people say that it's important to get the SNB before chemo since chemo first can mess with the SNB results. What do you think about this?
I hope you don't mind the questions!!! Feel free to ignore them... It's just that deciding on treatment is driving me crazy with all the variables!
THANK YOU!
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I had first A/C and then THP. However, many women here get TCHP with no A. I ended up having a total of eight cycles of chemo - TCHP is I believe six cycles. I do know that my regime had a slight increase in chance of heart damage but I don't think I'm any worse for it. This was what my doctor recommended for me. I was fine with that. You might want to check some of the other ladies' stats on the board but I think that taxotere is of course FDA approved with Perjeta - many of us who were diagnosed after October of 2013 are getting it as the standard of care, especially if there is suspected node involvement. I had a lumpectomy because I did not need to have more than that. And, after all I had been through leading up to surgery I was fine with needing less and not more. I, too, am small busted and the result was just fine. Chemo will most likely shrink your tumor however I suppose that location of the tumor might make a difference (mine was at 6 o'clock). As for SNB before chemo I guess my thought is this - your already going to have chemo whether you are node negative or node positive because of your HER status. The type or amount of chemo will not change. So, other than "peace of mind" it doesn't make a difference in treatment. As for you PR status, you will be treated with an AI just like an ER+/PR+ person. I started Femara in September and so far have been just fine with that, too. You're going to have a busy year ahead. Best of luck!
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april - I posted with some general info regarding chemo regimens on your other thread. Your oncologist is incorrect, early stage FDA approved protocol is neoadjuvent Perjeta with Taxotere and Herceptin, not Adriamycin. You will see from waterdog's dates that she had Adriamycin/Cytoxan first, then Taxotere/Herceptin/Perjeta - but this is a protocol designed by her oncologist, and she is node positive - what you typically see is TCHP neoadjuvently.
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waterdog -- Thanks so much! Things are becoming clearer to me, now.
SpecialK -- I'll check the other thread, thanks! I was just trying to figure out why the MO would be saying Adriamycin is the FDA approved protocol! It seems that there aren't any interpretations of what he says that make sense... so, maybe another MO, unless he somehow comes around and just adds in the Perjeta! Or gives a good reason why not!
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Hi April25, My diagnosis was the same as yours. I don't see a lot of people with that diagnosis on here and usually go to the triple positive column. I had neoadjuvent treatment and joined a trial for Tykerb and started on that and then after about 3 weeks started chemo with Taxotere and Carboplatin, every 3 weeks for about 3 months until the side effects became too great. I then started on Herceptin with Taxotere and Carboplatin after I was able to regain the necessary white blood cell count and general overall well-being. I finished my protocol, had a lumpectomy about 4 weeks after finishing chemo, didn't get a clear margin on one side and had another go at it and this one was good. I was about a B-C cup, probably more a C. I then had 6 weeks of radiation and then had Herceptin for a year and started on Arimidex which I've been on for 3-1/2 years now. Yes, there are side effects but I need to keep on it. I'm also in So. California and had wonderful treatment and still do. I'm monitored pretty closely and we have a wealth of great doctors and hospitals here. If you want to know anything, you can PM me if you don't want to ask here. I'm feeling really good and I know you will too once this journey is completed with treatment.
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Fitz33, thanks for all the info!
It's interesting seeing the various treatments for this combination. Gives me an idea of what works. so the tykerb was causing you problems?
I'm starting my neoadjuvent chemo right now... I'm in the infusion center.
I'm getting taxotere, carboplatin and herceptin with perjeta. 6 cycles.
I get to decide on what kind of surgery after that. Hopefully my tumor shrunk! So it is still possibIe to get bad margins? That's too bad. I amprobably having radiation after and a year of herceptin and 5 of femara after.
But who knowsif it wilI go according to plan?
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The Tykerb had a bad effect on me but since I had 4 put of 6 treatments of it, I feel it probably helped me a lot, at least I like to think that way. I had to decide on my type of treatment for surgery and decided to go with a lumpectomy based on studies I researched that the prognosis was the same for both outcomes. My tumor was at 9 pm and i was told it did shrink during chemo but then was later told the size and it was the same. I just had to go with the flow and not get upset so I could make a decision I think it was just a couple of days before surgery. If you don't get a clear margin they go back in within a few days and take care of it. Mine was so deep no one ever felt it, almost to the chest wall.
Then radiation which wasn't bad at all, year of herceptin and 5 years of Arimidex which is very similar to Femara. There's talk of staying on the AI for 10'years but my ONC said it isn't certain.
4 years and 2 M&S. since my diagnosis
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My diagnosis is the same as yours. I'm five years out from surgery and doing well! I had BMX followed a few weeks later by 6 cycles of TCH and 18 herceptin treatments. I didnt need radiation because of BMX as no node involvement. It's all so overwhelming at first, at least it was for me! But the TCH regimen is very doable, not fun, but doable. Wishing you all the best, enjoy your holidays! Veda
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Fitz33 -- I'm glad the Tykerb at least helped a bit ... and all the stats from the tests will help others in the future! And it's wonderful to see someone 4 years out! Congrats!
jacksnana -- Wonderful that you're 5 years out! So nice to hear that! Do you think our particular diagnosis (ER+/PR-,HER2+) is any trickier than the triple-plus? They have some extra targeted treatments, I suppose... But great to know you and Fitz33 are doing well.
I just did my first TCH with Perjeta, yesterday! So far, no nausea... but they give you anti-nausea drugs with the treatment, I think... (they were putting so much stuff into me and handing me pills and things, it was hard to keep track what I was taking! I'm hoping it won't be bad... It's reassuring to know that you weren't too badly affected by it.
I'm still pre-surgery. I'm not sure what I'll do... It will depend on how the chemo goes, I suppose!
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Also same diagnosis six years out of chemo treatment. Had 4 FEC and 12 taxol & herceptin and then just herceptin for a full year. Bi-lateral mastectomy and then radiation.
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it's wonderful to hear of the successes of others in our group. Our treatment is the exact same as a triple+. The +estrogen is what we have to get control of and the femara will help with that.
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I guess so! My MO was saying there was probably 5 years of femara ahead of me, after chemo, surgery, probably radiation, and Herceptin for a year... It seems like a long road ahead of me.
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Staying on AL for 10 years for me.
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April, I know it seems like a long time but you'll be surprised how fast it actually goes. Maybe that's because each kind of treatment we have has an ending date, like 6 chemos, surgery, 26 rads, 1 year Herceptin and then 5 years on the AI pill. The only long term one is the pill and I take it at bedtime so don't have time to think about it. For chemo I would count how many remained, not how many I had and for some reason it helped a bit. After my first 4, I had a break and then went on the final 2 for Herceptin-Carbo-Taxo, so I kept thinking, 2 more, only 2 more, now 1 more. Sometimes it seems like yesterday but most of the time I have moved on. There's always a reminder of a BMX or in my case a lumpectomy since I need to wear a breast prosthesis. Just hang in there, you've only got 5 chemos to go and you can have any whatever the doctor thinks will help you get through.
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Congrats jacksana.
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Thanks Fitz, and congrats to you too! 4 years is a big deal. It's so true what you said, it does go pretty fast once your plan is in place and you get started. I also counted down by the remaining treatments and when I reached halfway of chemo, I really could see the light at the end of the tunnel. Now I'm on the back side of the 5 years on my AI and hopefully my MO will feel like that's it for me in the spring. Hang in there April, hoping any chemo side effects or discomfort will be minimal for you!
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Thanks for the tips! Counting down seems like a very smart idea. I think it's because I'm still getting used to this whole idea of having BC that it's still a bit of an adjustment. Going straight to chemo--sort of good, sort of not... it's a lot to get used to! But so far I've been OK (although still just day 3 after my first Chemo, so there's a LOT I haven't figured out yet). I'm encouraged that I'm not dreadfully sick, though. If it's just fatigue with some GI problems and some aches, I think I can manage. I have yet to have the whole hair-falling-out business... But I've got a wig and friends have been crocheting me cute little caps! I have yet to know if the chemo is actually working, but that will come in time...
It's all day by day, right now, with lots of changes. But people are flexible and can get used to things (even at my age!), so I think that will be OK. I'm lucky that I don't have a lot of other worries and responsibilities (no kids or husband--good and bad, of course, but I can just totally be self-interested without worrying, even if I don't get that extra support).
We all just have to do what we have to do, right? But it's lovely to see you all towards the other end of this process! It's very encouraging to know people are getting through it and doing well.
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Hi April,
I'm in this diagnosis group also. I had the A/C and T/H treatment. Time does clip along faster than I thought it would. I just have 4 more Herceptin treatments and then I'm done. Congrats on getting the first chemo under your belt, I think getting past that first one is a big deal!
Kendra
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Kcat2013 -- Good to see you are coming out at the farther end of this journey. I hope you're managing well.
Interesting about the different treatments for this. Both my MO and the 2nd Op. recommended Taxotere, Carboplatin, Herceptin, with Perjeta recommended by 2nd Op., and which the MO agreed to. My MO seemed to think that A/C, T/H was more of an east coast thing (I'm on the west and the TCH/P was a protocol developed at UCLA). Is that true? Or is it just the various options that are open to treating this and up to the MO and various other conditions?
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I don't see any patients having FEC as their treatment but it also has been over 6 years and I am from SC.
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I'm in the west also, but I think my MO recommended the A/C T/H combo because the A/C portion has a longer track record and because I'm young (34 at diagnosis). I also had a small tumor and didn't receive neoadjuvant chemo. I could be fuzzy on remembering the reasons for the protocol I received though, because my head was spinning at the time just trying to grasp that I had cancer!
Kendra
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flatnfab54 and kcat2013 -- I guess it depends on a lot of factors... tumor size and grade and stage and node involvement... And there are also some relatively new things--like the Perjeta, which was only FDA approved in 2013, I think!
Makes sense that age and aggressiveness of treatment plays a part, too. My tumor wasn't small (3cm) so shrinking it will be useful for me. It also will show if that particular chemo works or not. Anyway, it's great there there are choices, since some people can't withstand some treatments and are sometimes switched...
And, I know about how crazy it is when first diagnosed. It's been a bit over a month for me and I still can't absorb it all. A lot of it seems unreal!
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Hiya...I was diagnosed right before my 50th birthday. I chose neoadjuvent treatment...start chemo tomorrow.
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Ilike2smile -- Oh, I saw your post over in the December Chemo thread! Looks like we've got a similar diagnosis and treatment going. I started my first chemo last Wednesday.
Good luck with the treatment. I had no problem getting the chemo. Even ate a nice dinner afterwards. 3rd day out I got a little nauseous, though.
Day 5 now and no hair loss yet, but people were saying it started about a week after!
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Hi April, I didn't lose my hair until between my 2nd and 3rd chemo. I suppose everyone is different. I bought a wig around the 2nd chemo so I was ready but felt sick that day but got through it. Everyone liked my wig and got so used to it they wanted my hair to come in the same color and style. lol
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10 days after 1st. Chemo. Still have hair. .. but I totally crashed and burned. .. had to go to the ER for dehydration. Admitted to hospital. Had unrelenting diarrhea so they aren't sure I'm absorbing anything orally. I'm still getting IV s and potassium and lots of meds... but still have the blasted diarrhea. .. !
I hope they can fix it so the treatment doesn't get slowed...
I'm usually pretty strong and healthy, so this is very disappointing.
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Sorry to hear that. I had a problem hydrating and the MO started me on about a 20 or 30 minute hydration drip before chemo. You might ask if that would help you. The diarrhea is really hard to stop and I took Immodium at home after the hospital and it helped. The main thing is to stay hydrated as best you can. Do any liquids appeal to you or is it just that they can't stay with you?
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i don't mind most liquids. I was doing protein shakes before this happened. At this point I think it's that nothing is staying in my body. I tried immodium at home and it didn't do a thing. Even here in hospital it isn't controlled at all...
If they can somehow find something that works, I'll remember your thought about re hydrating during chemo. I expected some sickness and some diarrhea, but I seem to have it rather bad, unfortunately. ..!
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