HERCEPTIN and/or PERJETA Threads
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Thanks Renee
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Hi Ladies. I have a question for those doing herceptin. I was told that my treatment plan would be 6 chemo Carboplatin (Paraplatin), Taxotere (docetaxel), and Perjeta and 13 herceptin. I could only tolerate 2 perjeta and 4 C&T. By my count I've had 14 (14th today) herceptin and was told today I will have one more.Every time I go the nurses tell me I have 1 more. I haven't met with the MO in over 3 months, appointment has been changed. I'm wondering how many is standard and also if it's possible for the treatment plan to change without me being informed. My mammo and ultrasounds have been clear and my bloodwork has been good (as far as I know).
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When I was treated pre Stage IV dx, I had 18 herceptin infusions.
Edited to add that when on Herceptin only, I moved to seeing the MO once every 3 months. I would have an echo every couple of months to check heart function as well. Again, this was pre Stage IV. It was incredibly effective for me as I have no mets from neck down and these drugs would not have been able to stop brain mets.
Sounds like you are almost done with the chemo/targeted therapy part of treatment.
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The following is from the Genetec website :
PERJETA should be administered every 3 weeks for 3 to 6 cycles as part of one of the following treatment regimens for early breast cancer [see Clinical Studies (14.2)]: Four preoperative cycles of PERJETA in combination with trastuzumab and docetaxel followed by 3 postoperative cycles of fluorouracil, epirubicin, and cyclophosphamide (FEC) as given in Study 2 Three preoperative cycles of FEC alone followed by 3 preoperative cycles of PERJETA in combination with docetaxel and trastuzumab as given in Study 3 Six preoperative cycles of PERJETA in combination with docetaxel, carboplatin, and trastuzumab (TCH) as given in Study 3 Following surgery, patients should continue to receive trastuzumab to complete 1 year of treatment. There is insufficient evidence to recommend continued use of PERJETA for greater than 6 cycles for early breast cancer. There is insufficient evidence to recommend concomitant administration of an anthracycline with PERJETA, and there are no safety data to support sequential use of doxorubicin with PERJETA.
Prior to Perjeta, the recommendation was to continue Herceptin for 1 year following surgery. If you receive Herceptin every three weeks, that would result in 18 treatments. It sounds like the nurses you are asking are not familiar with the treatment protocol.
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My MO has me on H&P every 3 weeks for as long as it continues to work. At diagnosis, I did six rounds with taxotere. When I was nearing the one-year mark of Herceptin, several nurses referenced mybeing nearly done. I had to remind them I was stage four and hope to be on this protocol for years to come.
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Blue Frog, that is the standard of care for De Novo metastatic breast cancer (Stage IV). Based on mltdd history, she hasn't been diagnosed as Stage IV yet.. She has IIIA, which is considered locally advanced cancer. So her protocol is different than those of us who were diagnosed as Stage IV.
There is always the chance that she will be diagnosed as Stage IV at some point and then her protocol will change, but for now 18 cycles of Herceptin is the right protocol.
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Ah, got it. I thought this was a stage IV forum so didn't look at the details. Thanks for clarifying.
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How often are you guys having the heart checked frequently? Dani didn't have an Echo since maybeApril for sure, should we ask for an echo? She has no problems with the heart, could it be her young age, so they are not bothering with it?
Also, for those of you going often to Onco, what about gifts for this time of the year? Dani has been going 3 weeks out of the month, due to her tx, there are many in the staff. Onco, NP every week, secretary, front desk, phlebotomist, nurses, Ins. person when we need new treatment, so many...Can't just give to one and not the other right? So now what? I'd love to hear your suggestions and hear how you navigate this. TIA
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I get an ECHO for my heart approx every three months. I would ask if it has been since april to find out why there has not been one for so long.
Far as gifts, little charms you can get even a dollar store might be an idea. Not sure about flowers due to scent. Chocolates, not everyone will eat.
Something as simple as a card is an idea as well. You could even address to the chemo suite in general, get other ones for MO that she sees as well.
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I'm thinking about getting a loaf of Babka and a loaf of vegan Kosher banana bread for my onc's office and the nurses at Mount Sinai. I know the nurses will appreciate it, not sure about the onc's office.
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not sure why she wouldn't be getting an echo every 3 months. It's not her age. Maybe someone forgot to schedule it. I would mention it for sure.
I just do a card. There are so many people!!
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haven't been on here in awhile. But thought I'd post to give others hope, my last 2 scans have shown no evidence of active disease. After being diagnosed 11/28/14 am still on Herceptin and Perjeta... have been since the start... you do adjust to the new normal and there is hope. I am waiting for a closing date on a 5 acre parcel of land and have every intention I'll still be around to build on it in a year or 2....
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Great to hear. I am recently dx stage 4 with a lone brain met. While they will not reach or treat my brain, my body is still met free from the neck down. I fully credit my herceptin and perjeta for keeping it that way. May it keep us going for years to come.
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Luv2fish good for you, thanks for sharing.
Kjones, I could just see Onco telling me, why put her through another test if there is nothing to point that there is a problem, that's what she tells us when I begged for a sono or ct for the liver, of course we know there are innumerable lesions from Pet/Ct, for some reason I thought that modality would give us more detailed stuff. But I will ask. Dani would not be happy having more hours spent thinking and doing C!
Scrunchthec it sounds heaven. I just keep thinking if it's enough. Like a real big babka!
Mara so nice to hear from you, are you coming along now? Thx for the echo info.
Re; the gifting, It's also because she is there so often, I feel more obligated. Believe me in the past we have already given so many gifts, then when we leave a certain doc or office, I think wow they got all these nice things! I have bought exquisite placemats, expensive wine, jewelry pouches, scarfs, perfumes! I guess just redo it again! Oh my gosh gotta go out to get the cards!,
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MomATT: I get an echo after every 4th treatment. My MO won't do the order unless I've had one.
Luv2fish: wonderful news!
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Oh, and here is something my MO produced about HER2. It's a training tool for NPs, but really, since we are all managing our own care, it's for us.
http://www.advancedpractitioner.com/narratives/her...
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Thank you bluefrog. That's the best explanation of HER2+ I've seen.
Great news Luv2fish. I'm going on three years since starting treatment and 2.5 years of NED. I have 2 young horses to get trained also hope to be around for awhile.
Best to all, Michele
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Hello ladies -
This thread has been so quiet lately but I thought I'd pop in and tell you all that I just received my 6 month scan results and I am still NED. This will be 20 months since I started treatment and am continuing to count my blessings. My oncologist has suggested I discontinue the perjeta but I think I've decided I'll stick with it and hope it continues to work. The side effects are limited with the itching being the worst.
I'm also hoping to start an immunotherapy trial in January. I hope the rest of you are enjoying the holidays and I' love to hear how everyone is doing.
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WONDERFUL NEWS josalive!!! Thank you for sharing and bringing inspiration and hope to all!
--The Mods
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Hey Josalive! What great news! I agree with you on the Perjeta. I know a few are dropping it, but I don't have any major SE's, so why mess with a good thing? So happy for you!
It has been 28 months for me. I should have my 6 month scans in February, so getting a bit nervous. Feeling good though.
I'm interested in hearing more about your immunotherapy trial. Does it have a trial name? Wishing you only the best results!
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Happy New Year everyone! It has been 17 months since the start of my treatment and I'll keep perjeta for ever if .I can. Next scan Jan 30, I'm still getting them every three months. When did you drop to 6 months? Probably depends on the amount of NED scans you have had maybe
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Great news Josalive! Congrats on the great scan! I'm still not NED, but my scans two weeks ago came back stable, so i'm good with that. I wanted reduction, but when I compare how I feel now to a year ago at this time, I'm pretty darned happy!
bstein- I still get scans every three months, but I'm not NED. However, my onc is going to do a PET scan in March. I only get one once a year due to insurance. The other times I get CT scans. Anyway, she said that if the PET still shows me being stable in March, then she will probably push me to every 4 months for scans.
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Congrats to all the stable ladies! I have never been NED either. Reduction is nice, but with bone mets it is hard to tell, so I'm happy with stable. My doctor moved me to 6 month scans after one year of stability.
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I am stable also. I do scans every 6 months. I asked for the change from 3 months with my oncologist. I found the stress of the every three month scans to be more than I wanted to deal with. I have been on herceptin and perjeta for a year and a half now and while I hate how the perjeta makes me feel, I am not going to risk any changes in treatment. I will stick with stable as long as I can. I would love to meet NED!
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I also am stage 4 right out of the gate, am on taxatere and h p , have had several side effects including alotof diarrhea, have u had se and if so, what were they and how did you deal with them
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I did have a bit of diarhea when on herceptin/perjeta and taxol. Once I was done the taxol, and on H&P only, the diarhea stopped after approx 2 weeks after finishing. I don't have it now at all. Immodium always stopped it for me.
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Hi Weigp22. I had the same issues initially with the Taxol/Herceptin/Perjeta combo. It improved a lot after dropping Taxol, but here's what worked for me. Take 2 Immodium at the very first sign of loose stools or even just take one the morning after treatment, and then another after four hours. That usually stopped it. I also found that taking Probiotics was very helpful, and I had to watch a bit what I ate. Anything with tomatoes seemed to exacerbate the issue. It does get better, but I still have loose stools a few days after each treatment. Very tolerable though and 1 Immodium usually does the trick when needed.
I do have another issue, and maybe other people have experienced this. A couple of days after treatment, I get sharp pains just below by right rib. I have a liver lesion right there, and I'm wondering if that might be the source of the pain or if it is related to the gi issues that seem to go with the territory.
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I have had those pains myself. I don't have any mets to my body, brain only. May not be your liver lesion. We seem to get all sorts of weird pains with this stupid disease and GI issues would not be surprising either.
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oh god! The diarrhea was awful! I felt like I couldn't leave to house and it was one of the main reasons I couldn't work anymore. I had to take the max dose of lomotil every day (prescription med). It did help some. I couldn't eat any sugar! None. Which is pretty hard. I felt like I lived in the bathroom. Even when I finished taxol, the diarrhea continued for me. Not as bad, but still there. And even continues to this day. But I do have times of the other extreme, constipation. I think taxol destroyed my gi tract.
I also had pain, but finally figured out it was from my neupogen shots. We are on so many different meds, sometimes it's hard to figure out what is causing what and then you take meds for the side effects and then you take meds for the side effects ofthe side effects!
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I switched from Zometa to Xgeva and the big "D" settled down for me.
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