HERCEPTIN and/or PERJETA Threads
Comments
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Love, love, love the encouraging stories I'm reading here on this thread! Feeling a little hopeless today for some reason so thanks!
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Macy - Do you know when your treatment will start?
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Getting h/p for the first time on Monday how long is the infusion first time taken and will I have any side effects since I need to go to work the next day.
Thanks
Patti
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question for those on H&P only: did any of you have bad joint pain. No Taxotere since Jan. This is so annoying, time for me to feel well for a change.
Thanks
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Beatmon, I have joint and muscle pain. It bothers me most when I first get up. My onc. told me to take ibuprofen for the pain. It helps but still very annoying. Hope you feel better.
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Patti- the first time you get Perjeta they give it to you over 60-90 min. After that you can cut down the time to as little as 30 min, but I get mine over an hour because it seems to help with the flu-like symptoms to go slower. Apparently the drug company instructions say to wait 30 min between the Perjeta and the Herceptin, and then you can get your Herceptin as fast as 30 min. Everybody's different, but for me I feel tired and achy the day of infusion but fine the next day. Good luck-hope it's easy for you!
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Beatmon - I get joint aches when I get the Xgeva shot (every 6 weeks), but not with the H&P. I take one Aleve every morning and that is enough on most days.
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Thank you all so much for the encouraging words. It truly means so much to hear from you all. I was able to setup some second opinion appointments and am hopeful i will find an oncologist that will be fighting with me.
I received my first treatment of THP on March 12th (6 days ago) with a neulasta shot and am surprised at how little side effects I have. I have some muscle and joint pain that can be controlled with Tylenol and some fatigue but it really hasn't been so bad. One unexpected side effect that I am experiencing is blurred vision. It seems to be getting worse and is starting to give me headaches. I hope this clears up over time. I have been eating Vegan with no sugar and walking 30 minutes every day.
But.... considering I can't feel the lump (that was once 2 cm) after just 6 days on this treatment, I am encouraged! I hope everyone is doing well today.
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Did anyone lose there hair on taxol along with h/p
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Beatmon- I have joint pain and have been off Taxotere for 9 months. The pain gets worse around day 4 or 5 after the H/P treatments. Slowing down the infusions helped with the joint pain and the annoying running nose.
Have a restful evening everyone. ~Karen
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What are the side effects from taxol herceptian and perjecta looks like I start my first one on monday and weekly taxol 18 rounds will I be sick the night of or day after
Patti
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Just sending a word of support Beatmon - hope you feel better soon. SUE
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patti--I had your same treatment. I did not get sick (throwing up) ever while on thp...but get some zofran or something because you may feel nauseous at some point. My hair starting falling out around day 14. I started on oct 17t and on Halloween my hair was thinning. I cut it short and then shaved it. I had major diarrhea so get some lomotil. Runny nose, watery eyes, blurry vision, food tastes weird, cumulative fatigue. I don't think I remember any side effects that first week. They kind of slowly starting building up over time for me. Best news--it worked! I'm stable 2 1/2 yrs later! I hope all goes well for you! Best of luck!
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thanks everyone for your support. I must say, really, the joint and muscle pain is more than annoying, that I stated. Ibuprofen doesn't seem to help. Hate to take percocet....afraid I'll need narcotics later in the course of this disease. Pharmacist said she had read about taking meloxicam by mouth with vytorin gel rubbed on the joints
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Macy...I think many, many sisters have the same feeling you have at times. Even stable and off chemo, I find myself having those moments. Thankfully we can celebrate & commiserate with each other..not being alone is a huge gift!
Patti...I'm not sure what tx you were on before, but surely h/p will be easier! My center does herceptin first, over 30 min now, then a flush, then perjeta over 30 min. I actually had a new nurse give p over 10 min. When it started beeping I looked at DH and asked if there was a problem. Then saw the empty bag. When the nurse came in I asked what happened...a lower dose? She said the bag said 10-60 min. I asked for another nurse...she came in & asked WHY 10 min. I asked if I was ok...laughing (even tho I was freaked out). I was fine but I haven't seen that nurse since!
Beatmon...I'm sorry h/p is giving so many aches...and the pain is hard to send away! I'm on femara & sometimes I think I feel it in my hips...but I try to exercise & walk & usually that takes care of it. With h/p, I feel normal after treatment and have no aches. I think ses I have, drippy nose, blurry eyes, a little neuropathy (left over chemo maybe, but seems a little pronounced a few days after h/p) are completely perjeta. My hair is thicker now after navelbine. It hasn't been very long since you were on tax...I bet you see improvement before long!
Josalive...you're a rock star if you had neulasta for the first time & didn't want to cry! I literally cried with leg pains my first time in 09. When I ended up stage 4 & had it every day 8 on navelbine, my body got used to it but still felt like a rib vice grip...which weirdly made me glad to know it worked! So, hope you continue feeling strong...you can do it
Hello to all...hope h/p works wonders for us all!!!!
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Good morning - I just wanted to share with you all that a 15 year survivor of stageIV HER2+ popped up in another forum recently. That is all I know, but those facts gave me so much hope that I wanted to mention it here. I want that for all of us!
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Thanks for sharing the 15 year survivor story Shutterbug. Encouraging for all of us! ~Karen
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Good Day Sisters!
I have been on H/P for just over a year now, every 21 days. Last infusion I experienced whole body itching and flat hives two days later. I am able to control symptoms with a generic Benedryl. I called my team 5 days later to let them know what I was experiencing. And I am still taking at least one Benedryl a day. My doc says she will be changing my next infusion from 30 mins each, to pre-meds of steroid, Benedryl, Perjeta drip time of 90 minutes, a 30 minute break flushing with fluids, then 90 minutes of Herceptin. My fingers are double crossed that my body is not opting-out of H/P!!
Here's my question...has anyone experienced the same? And if you did, what did your doc change? And has anyone had/heard about someone developing a sensitivity late in the game?
Thanks!
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I haven't been on in a while. just to clarify, i was banderso, decided to go incognito and changed my profile name.
I've been on a bit of a roller coaster ride here. Had a bone scan after my 3rd Taxotere, herceptin, Perjeta, it showed a light uptake on one of my vertebrae that wasn't there before. So my Oncologist ordered a bone biopsy, they biopsied one of the original mets as well as what they thought might be the new one and both came back negative for cancer..... So my oncologist stopped my Taxotere after 4 and they only gave me Herceptin, Perjeta, and the Zometa, as well as started me on Femara.. I was so happy! Other than the big D have been feeling great! BUT..... I had my Echo and it came back at 50, I was at 60 before starting. I have an appt with a Cardio Oncologist next Thursday. Hoping this is just a small "blip" and I can continue on as the results have been so good!
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luv2fish, hope you get good news with the cardio oncologist. I'm at 53 and have retest nest Thursday. Hope we both get good results and can stay on herceptin/perjeta. Glad to hear your doing well.
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I was on gemzadr herceptin and perjeta. Just dropped gemzar. How long does it take to get rid of the chemo side effects
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Hi all, I've been trying to keep up with everyone, never sure where to jump in! This has probably been addressed but I was wondering if I can expect my hair to grow back after finishing taxotere and staying on herceptin and perjeta? I really miss hair, it had just started to grow back when we found bone mets and I had to start taxotere.... So, about a year without hair.
Thanks for any info.
Kim
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Hi Kim,
I completed Taxotere 9 months ago. My hair is about 2" long. Curly and thick. My original hair was straight and fine. So it's quite an adventure adapting to the new style. Lots of laughs. My hair used to grow very quickly. Now it grows painfully slow while I've been on Herceptin and Perjeta only.
Hope you are having a restful and peaceful evening.
~Karen
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luv2fish...very good news that your spots were negative...thank God! Good luck with cardio dr. They've told me as long as it's 50+, it's good (mine has luckily been 65-70), and I know others have taken a short break & they've recovered well enough to start again. You're doing so well, I hope this is a tiny blip!
I have a bone scan next week & hope nagging pain isn't something new. Trying to be positive isn't working very well these past few days.
Kwagart...my hair came back fairly quickly after taxotere...soft, straight, downy fur...then wacko crazy silver curls! Transitions. That was 2010. On Navel/h/p it thinned a lot, but still had lots. Now on just h/p, it's thicker. I think you'll be happily growing hair soon! Other spots have never really grown back...but I'm older than most of you, so maybe that "helps!" I also don't sweat anymore...which I think is very bizarre...maybe that stops at 60 too
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Ronnie, I don't sweat any more either but I have assumed that this is because 1) they super-mega-radiated under my arms (lymph nodes) and 2) because I am such a lazy slob that I don't exercise (I know that you do). Sending good karma re: your bone scan. Remember hon, sometimes a cigar is just a cigar ... Do let us know. Fondly, SUE
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It hasn't been that long since I was here but from all the discussions it seems so. Welcome newcomers, sorry you find yourself here--well, sorry any of us find ourselves in this cancer situation. Hi everyone else. Hope tests, scans, and treatments go well.
Hawkeye: For allergic reaction I'm given Zyrtec plus tylenol before every infusion, and they adhere to the 30 min wait between drugs.
Beatmom: I finished Taxotere at the end of May and the joint pain didn't diminish until late fall--5 or 6 months later. It was pretty bad and I thought it was from H/P but apparently not since it's gone away. I still get muscle cramps at night mainly and have a bit of neuropathy--both I suspect from the H/P. A little Gabepentin at night helps me sleep (it keeps the cramps at bay).
Luv2Fish: My echoes had been 2Ds and doing a 3D echo LVEF bumped mine up a few points to 55. Might want to explore that.
Sorry to hear about hair issues. I cut mine short and it definitely grows slowly on H/P. I didn't loose mine thanks to Penguin cold caps. Don't know why people don't use them--except for that they are really painful and expensive. I figured since I'd rarely paid for a haircut in my life I could put my life haircut savings into keeping my hair.
My big news is that I got into a vaccine trial at University of Washington: https://clinicaltrials.gov/show/NCT01922921
Though the website doesn't mention it they are now taking people who are on both H & P and stable or, if liver mets, NED. I'm #16 in what they hope is a 30 subject trial. I went to glorious flower filled Seattle March 16 and started the vaccine plus the randomized PSK or placebo tea. Keeping my fingers crossed it will help. Geez, I hope it does since the tea is sort of a drag. You can't eat anything 2 hours before or 1 hour after taking the tea and am supposed to take it every 12 hours for 4 months. So, get up, take the tea, do chores for an hour before breakfast, then since we usually try to have a fairly early dinner I take it 2 hours after dinner and by the time another hour has gone by I'm usually in bed. It's definitely cut down on my evening grazing and snacking! I had no adverse reaction from the vaccine. The people at the UW were great.
Here's to everyone, hope spring is treating you well
Michele
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Miche - great to hear you are NED and to learn about your new trial. The timing of the tea sounds like a real pain. I take thyroid meds and am not supposed to eat for 30 minutes after, which is fine on the weekdays when I'm running off to work, but on the weekends I sometimes cheat a bit or "forget" and have breakfast a tad earlier than I should. I imagine the evening is the worst. I find it hard not to snack after work or while preparing dinner.
As for the cold caps, I hadn't heard about them until it was too late, but I have to say, the thought of icing my head in the middle of winter is not very appealing! Honestly, I think I'd rather lose my hair! But that is me, I detest being cold more than anything. Glad they worked for you. It is something I might consider next time if I have chemo in warmer weather. :
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Hi Michelle,
Just wanted to let you know that I did the her2 vaccine trial in Seattle 3 years ago and am still Ned. ( don't even want to say that and jinx myself as I go for scans tomorrow )
When I did it, they weren't doing a tea, but some other drug that was supposed to help booster the vaccine . Obviously, it must not have helped as much as they wanted, as they are now trying the tea with it.
I agree that everyone there was so nice. I hope they find the right combo that can help all her2s.
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I wanted to share my good news. A few weeks ago, I posted about my mugga being at a low number. We redid it last week and my heart function improved by 8 points. I also had my first pet scan on Friday since starting perjeta. My oncologist e-mailed me early Easter Morning to tell me spot on liver was gone and pet was clear. What a great Easter gift. I hope everyone had a great Easter and everyone is doing well.
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That's wonderful Reneeswan! Thank you for sharing your good news with us!
I just had my Echocardiogram today. I had the tech laughing because I am so ticklish. Do they have to jam that thing into our ribs so hard? At one point we were both laughing so hard we couldn't stop!
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