HERCEPTIN and/or PERJETA Threads
Comments
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I’m trying not to be too obsessed with this change but...I notice that other Herceptin bio similars were approved before Kanjinti....yet we were not switched to those. Wonder what the difference is?
I will keep googling, I swear I am not obsessed wink wink
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I looked up the side effects for kanjinti and did not like the look of those. I tend to get a lot of side effects and dealing with nausea and diarrhea regularly sounds awful. I just got my digestion working again. Guess I will find out at some point if it is a cheaper drug. If I don't like the SE, I will certainly stop taking them. I refuse to put up with really bad SE as someone who lives alone.
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Hello. I am popping onto this thread to ask for some info as I gear up to start a clinical trial that includes herceptin for Her2 mutated bc. I’m thinking of how to schedule my herceptin infusions.
1. How soon after the infusion do you feel any side effects? That same day? The next day? A certain number of days later? I’m trying to see if I need to consider my choice of herceptin day in relation to my dance class and performance schedule, since dance is, as they say, my happy place.
2. How long does the infusion take?
Thank you!
ShetlandPony
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Hi , the only side effect , very very mild at that was kind of runny nose, very occasional.
It takes about an hour
Thank you for bringing up this thread , I was thinking about doing it myself.
I am nearing 5 month of abraxane and getting nervous about what to do if there is still just partial resolution; if it barely has improved in the last 3 months abraxane would be dropped I reckon. If it is all clear it would be dropped as well and continued on H&P only - that seem to be the protocol. But what if it just improved - how do oncologists decide whether to continue with chemo or drop it ...
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Thanks for your reply, Anotherone.
I would think that in the case of a partial response, the oncologist would think about how you are doing with side effects in judging whether to keep going. When I had Taxol, I was scheduled to do four to six cycles. After three cycles we could see it had worked very well (NEAD) but we decided to continue for good measure. After my fifth cycle, when I met with my oncologist about starting number six, I described the level of neuropathy I was experiencing. It was not horrible, but my onc said we should stop at five and not risk the neuropathy becoming permanent. I thought that was a good call.
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Dear Shetland, my wife has noticed that if she gets the infusion faster (Herceptin/Perjeta), then next few days stomach is "strange". If it goes slower (like ~1 - 1.5 h), she feels nothing afterwards. Nurses usually want to make it faster but it is wise to stay 30 min longer and feel better afterwards:) There's some tiredness the same day though but for everyone it is different as this might be tiredness because of spending time in hospital... Saulius
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I have relatively few SE on the Herceptin. The runny nose thing though can be a pain in the butt. If I lean over or tilt my head downward, it's like a faucet. Almost projectile at times!
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Saulius, this is just the sort of info I need. Thank you. I will be on neratinib as well, and it is very likely to cause gastro problems,especially at first. If insisting on a slower infusion can help to preserve quality of life that is important to know.
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Shetland, I’ve been on H&P for 3 years now. The P can loose stools kinda quick but still controllable. The H seems to cause me more, although minor symptoms like hives or what look like fire ant bites and flushing in my face. The flushing always happens when I drink alcohol but also sometimes with food or meds, just randomness I guess. Overall, these have been very easy for me though.
I wish you the best luck!
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Illimae, I am glad you feel well enough to post! I have been worrying about you. I think it sucks that a person who enjoys cooking and dining should have swallowing problems. Thank you for this info.
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illimae, I'm so glad you said that. About two weeks ago my whole face turned red, scared me and my husband to death, now I know why! Also, I thought I got bit by something, looks just like a fire ant bite and itches like one, I guess it was the H too!
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Bigpeaches, here’s an example of my red mask from H. It doesn’t last long but sure looks alarming.
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Hi ladies. I start Taxotere, Herceptin and Perjeta on Feb 24. I'm going to take some time and read through this thread. SO glad you're here. I've been a member of BCO for a long time - I'm so grateful to all the women who share their stories and allow us to feel we're not alone. Thank you!
ETA: I updated my diagnosis but it hasn't shown up yet. Jan 2020 Stage IV, mets to axillary and mediastinal lymph nodes and lung, ER- PR- Her2+
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Just dropping in to say I had a bright red rash on my face during H P and Taxotere. The nurses told me it was from the prednisone. I’ve had prednisone before but didn’t have the red rash. My experience was that it disappeared in 24 hours. It may have been Perjeta for me. I was on Herceptin alone for 2 years and no rash.
HiMN Susan I just finished HP Taxotere. It was not easy but 3 weeks after I finished 5 cycles I started to feel better. Now 6 weeks later and on Kadcyla I’m doinso much better. Hang in there. Lots of people here to listen. Take care.
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Hi does this combination make hair loss?
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Hi LoriCa
U receive Herceptin and Perjeta, I have to do the same think.. but I am afraid I will lose my hair so did combination of Herceptin and Perjeta can cause hair loss ?0 -
it doesnt cause hair loss
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HI Shetland. I think the side effects really vary from person to person and from time to time. I have been on Herceptin alone for over 7 years. My infusions took about 1/2 hour. Sometimes I had no side effects at all. Other times the day after the infusion or the day after that I have complete flu like symptoms and spend a day in bed. I think it depends on my immune system... if I am run down in general - the SE's are worse. It only happens about twice a year. I never have any other issues. I just switched from the infusions to the injections - the shots - and they take about 3 minutes!
I hope that helps!
XO
Andrea
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Dear all, once you have reached stable (NED) and you are on HP, how long would one stay on both drugs until dropping P and staying on H only (I know it usually happens)? You wait until you cannot tolerate both or ex. for a year or two? My wife has been on HP already for 29 months, and we see some SE appearing, on her nails and skin mainly. Is H in that case at a higher dose than when combined with P? Thank you very much, Saulius
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Hi all
I have now been on HP for 34 months and have thought about dropping P at times because it causes neuropathy. Fortunately the neuropathy is low grade and intermittent. I was dx in March 2017, reached NED less than a year later and have had no evidence of progressive disease since.
There are often times when I yearn to just move to the H injection, however for now I am sticking with HP every 3 weeks. Of course this plan could change at any time: this path is a true rollercoaster ride. Good luck to all.
Liz
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I will add my question on the topic as well - it's about discontinuing chemo. How in each one of your cases the decision on when to stop chemo and continue with H&P only was taken ?
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Dear Anotherone - we simply did not manage more, 12 taxoteres were absolutely brutal but they fixed almost everything! Saulius
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Hi Ladies,
I haven't posted in a long time, but I read your posts every day. I have been on herceptin for over 11 years and perjeta was added 5 years ago. I have been NED the last 5 years. (Scan next week). I struggle with knowing when to stop perjeta due to neuropathy. It's such a hard decision.
I want to say thanks for always being here sharing the good times and the scary times. Wishing everyone a nice day.0 -
saulius , 12 taxoteres mean that your wife was on it for 8-9 months? Were there any signs of disease when taxotere was stopped?
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Anotherone - My onc wanted at least four months of weekly taxol for me. If I tolerated it well, we would go to six. I did tolerate it and I did the full six months. I had very little metabolic activity on my scans at four months and was NED at seven months
On the Perjeta question I have no idea. I have been on h/p for 27 months and she has never discussed taking me off. If I complained of side effects, perhaps she would. I do get some tingling in my toes at times but nothing that restricts my movement (yet).
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I had 15 weeks of weeklyTaxol before dropping it to keep just the hp. I wasn’t NED, but all the tumors were drastically reduced and metabolic activity was also greatly reduced. I’ve been stable ever since and that was April of 2016 so just about four years. I have very few side effects from the hp aside from drippy nose, some muscle cramping, and a little itchiness fro the Perjeta. It used to be worse but taking a Claritin every day was monumentally helpful! My doc has not mentioned dropping Perjeta at any point.
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That’s interesting, Andi, about the side effects happening by when you are run down. I think my onc said H is technically an immunotherapy. Did I hear her right?
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Dear Anotherone,yes,she was NED after some 8-9 rounds (as initial changes were so huge,probably IBC but maybe not) but we and our MO pushed for more,just to make sure... her reaction was called "very good",since 7 cm tumor and lymphnodes were gone in 2-3 months... liver took longer but after 5 months MRi saw almost nothing,which stayed till this day.
Dear Shetland,yes,H partly can be called immunotherapy because many years after statting using it scientists noticed that tumors that get H attached to Her2 receptors,get also more immuno-visible. Nothing spectacular,actually,compared to real immuno-therapies but for some people this component might become important,although difficult to evaluate and measure...
Saulius
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DGHoff, do you know why you did not continue with taxol?
Thank you for all responses.
Having scan in 10 days after 4-5 months of abraxane with 4 doses missed so trying to figure out the best course of actions ..
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Anotherone the standard dose of taxol in first line treatment is 6 cycles. That's the 3-week dose, so if doing weekly it would be 18 infusions plus off weeks (most people do 3 weeks on then one week off, I did 4 weeks on then one week off the first time for 4 cycles, then switched to every 3 weeks for the last two cycles). There was an interesting discussion on twitter a few weeks ago between oncologists asking why there seems to be a recent trend of some oncologists keeping people on taxol longer than 6 cycles. The oncologists in the discussion were very strongly against keeping people on it longer than 6 cycles because of the risk of permanent neuropathy. My oncologist absolutely refused to let me stay on it longer than 6 cycles.
I know there are people here who have done it longer than 6 cycles. some stay on it until progression but it's not usually their first line treatment in that case. I don't know if they are doing a very low dose, or maybe they've had no problem with neuropathy so they and their oncologist are willing to take the risk?
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