Herceptin Side Effects?
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Congrats on your last rads, jo!! That must feel wonderful. So just every three weeks going forward?
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Every 3 weeks. I am so glad I won't have to get up at 6 every morning to drive to the hospital. Have a wonderful weekend. Hopefully the side effects will start to diminish soon.
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Hey girls, I had my second round of HP only on Monday and I forgot to take my Claritin. I had some bone pain in back and hips on and off yesterday, but it wasn't too awful. I also have the big D--very bad the day of infusion, manageable now. I also have an extremely drippy nose, but not sure if that is my cold or HP or both.
One thing I'm concerned about is pain I'm having on the top of my foot/ankle that feels like a stinging/bruised area. It has been bothering me for a couple weeks and it runs right under where I tie my shoes. I mentioned it to the ONP on Monday and she didn't seem concerned or really look at it.
Long story short, SEs very manageable so far, but I will remember my Claritin next time.
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Thanks for this, Sidalee. I plan on doing an anti-nausea med + Claritin + Advil before my H only infusions (thanks to your great warnings!).
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Ingerp- I always take Claritin or a generic form 3 to 5 days prior to my infusions. I learned about the Clariton pre chemo from several women on this thread. I credit Claritin for my having little or no muscle / bone pain from chemo or herceptin. My Mo told me the drippy nose is a side effect from the herceptin. So far that's been my only consistent side effect from the herceptin. I thought my nose was dripping because I didn't have any nose hair. LOL
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Congrats,Jo! Yes, I’m in the drippy nose club...since day 1. I carry tissues a lot, lol.
Dee
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I'm 3 months post chemo but I continue to receive herceptin and perjeta every 3 weeks. Today I started experiencing double vision while looking at my cell phone. If my phone is within 6 inch of my face I have no difficulty reading but if it's any further than that it's doubled and blurred. I have also the same reaction while reading a letter. I see my surgical oncologist tomorrow for my final discharge. Hooray. I see my medical oncologist on Friday a few minutes prior to my scheduled h&p infusion. I've had minimal side effects from the chemo and no noticeable side effects from h&p. Finding information on this sudden double vision has been difficult. Do any of you have any knowledge on this subject?
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I’ve not written in a while. Radiation went well for me, thank goodness. Herceptin continues to be a thorn in my side. It makes feel awful. I’m glad many people don’t have side effects. I’ve come to a decision to quit at 7 months because it’s making me a wreck.
Dee
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dee- have you spoken to your oncologist about stopping the herceptin at the seven-month mark? You need to do what's best for you. Your side effects have been really bad.
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And Dee are you the one I learned about taking my own pre-Herceptin premeds from? I haven’t done it since my first one but I popped an anti-nausea med, a Pepcid, a Claritin, and some Advil. Are you taking anything before your infusions
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My next onco appointment is 10/8, and yes, telling I want stop after October. That’s 7 months, a bit longer than the Persephone trial. Yes, I make my own set of pre-meds: Claritin for 3 days (day 2 is infusion), Zofran, Tylenol, and Aleve. Last night, both neuropathy and bone pain, loss of bowel control to minor extent, and dripping eyes and nose. This am, killer headache, severe joint pain. Also, my port wouldn’t work...3 hours while they used a medication to break up the blockage and started an IV that actually was poking out the other endby the tine it was gone. I’m done.
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Oh Dee I’m so sorry. You have really been through the ringer. Do what’s right for you.
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Thanks, Ingerp. I don't know why some people have NO trouble, and I'm sick as can be. My center only does 30 minute Herceptin infusions (so I can't try 60 minutes), and my pre-infusion "home mix" cocktail is pennies compared to what I'd get there (which they don't do anyway). I know 12 months is still the "standard," but some practices are already changing due to the Persephone study (6 months non-inferiority); mine wants more data, and I respect that. I know Her2+ cancer is aggressive, but mine was quite small (1.1 cm) and node negative. It's been hit with Taxol and 4 weeks of radiation and 7 months of Herceptin. And I've been on Arimidex for 2 months and will do my best to continue for 5 years. I was also *barely* over the threshold on FISH for Her2+. So, I feel like we've done a lot, and I still think Herceptin (and its cousins) are amazing therapies. But...I'm done.
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astyanax- I don't know of any individuals who have gone through tchp and who have had NO side effects. But yes there are some of us who were very fortunate. And it really does suck for those of you who have gone through hell with all of this. At my cancer center, they prefer giving the herceptin 30 minutes but if the doctor writes the order for 60 minutes they have to do 60 minutes. My oncologist did tell me at the start of my treatment if I was unable to tolerate herceptin and perjeta for the whole year that it could be cut down to 6 to 8 months. H & P are cumulative so some of us might not have early side effects but will experienced them later on in tx or years later. With these drugs none of us knows what's around the corner. You've had a rough time and whatever decision you make it's the right one for you.
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Was this the thread where people were talking about flu shots? I forgot to ask my MO last time I saw her but did ask the nurse who was giving me my Herceptin. She said it’d be fine, although I might want to wait a few days after getting the H. Has anybody else asked their MOabout flu shots?
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yes. My MO is the one who told me to get a flu and pneumonia shot. And this was during my tchp third-round. I did wait approximately 5 days after the infusion before getting the two shots. I didn't experience any side effects from the injections.
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Yes - flu vaccine is fine to get since it's a "killed" virus vaccine. I was advised to not get any "live" virus vaccines (like the Shingles one) until two years after chemo.
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Thanks, guys. Just wanted to confirm without bugging my MO.
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My MO was also all for getting the flu shot, in fact they have signs posted on the doors reminding patients to get one.
I got mine a few weeks ago and had herceptin yesterday without issue. I am still however having issues with low sodium and am seeing a Kidney Specialists.
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Thanks for that, Phoenix. My internal medicine place happens to have a flu shot clinic a week from today so I got an appointment—that's two weeks out from Herceptin, one week before my next one. I think that's pretty good timing.
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I hadn't even thought about not getting my flu shot, I get one every year. Thanks for posting, I will make sure to mention to my MO next week before my infusion.
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I got my flu shot yesterday. My Mo sent an email reminder.a week ago. I had my pneumonia shot approximately 3 months ago.
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Good to know, jo. I’ll get mine tomorrow.
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How did it go Ingerp?
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Phoenix—all good, and I did read over the hand-out they give everyone, especially about who should not get it. I wanted to get it behind me—I know it takes two weeks to build up the full immunity and I’m heading off to the teaming cesspool of germs (WDW!) at the end of the month. :-)
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Hey Ladies, how are you all doing?
I had HP 6/13 on 10/30 and I seem to be experiencing a cumulative SE...the Big D of course. After my fourth TCHP, my D got so bad and I got so dehydrated that my MO had to take the P away until after TC was done. He added it back with the H in July and I have been doing okay, but last infusion the D got somewhat worse and this round it's been pretty bad. Went from mild to moderate I would say, I'm over a week past the infusion and I had to take a Lomotil last night to stop the cramping and get some sleep. I really hope this isn't going to keep getting worse again until I have to start going in for IV hydration like before or even have to stop treatment.
How are you all doing with SEs, has anything gotten worse over time? Maybe my system is just weaker because I was doing rads at the same time?
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sidalee- during my 6 rounds of tchp I had diarrhea for approximately 4 hours one day. That was it. I will be finished with herceptin and perjeta in February of 2019. The only side effect I've noticed with H and P post chemo has been mild neuropathy in a couple of my toes in both feet.. what a horrible situation for you to be in with constant diarrhea.
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Glad I found this thread. After 12 infusions of Herceptin / Taxol, got the 3x/dose Herceptin and it hit me like a freight train. 8 days later still feel like a baseball bat hammered shoulders and back. Stiff and sore, aches, hurts. Having trouble walking, heavy lead legs.
Grateful to read this thread, will portal message MedOnc with request for Herceptin in 60 minutes, pre-meds of Pepcid and morphine, yes morphine because the pain is UNBEARABLE. Did not have it at all with previous infusions of Taxol / Herceptin except a little shoulder pain a couple days after infusion.
Will take Zofran, Tylenol and Claritin before infusion, and Advil afterward. Of course I slather the numbing cream on the port 1.5 hours before infusion.
Scheduled for double mastectomy in 2 weeks with another Herceptin infusion just 2 days before surgery. Can't even imagine what *that* week is going to feel like! Hoping to survive it.
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cascadians- what a horrible time you've been through? I had my BMX prior to my chemo. I have one more treatment of herceptin and perjeta left. I tolerated it rather well but I did notice more side effects towards the last month. There was an increase in peripheral neuropathy in both feet. Nothing significant but a definite increase. In the past if I had a stomach issue 1 Imodium quickly took care of the problem. During the past three weeks I have noticed an increase in diarrhea but I also had food poisoning for 5 days. Before I started chemo the ladies on these threads told me to take Claritin 3 to 5 days in advance. I continue to do that even with herceptin and perjeta. If you are in such excruciating pain I don't see how you can have a herceptin infusion and then have surgery.
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My MedOnc seems determined that I go thru the Herceptin on schedule. He wants to make sure any stray cancer cells are killed. I figure I'll be so blotto full of pain meds of all kinds that I'll just slog thru this if I even survive it. This thread gives me ways to deal with it all.
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