Herceptin - Quick Side Effects Poll
Comments
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Amen. I find myself trusting the bunch a bit less each time I share my side effect experiences. They've heard it all before and are distracted and almost left some temporary picks in my port as I was about to leave the place after some blood tests. Just a number.
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Not a completely new thing, but it's getting worse. Itching and inflammation around my port after infusion. Yesterday I had low dose, one hour infusion of Herceptin only (finished Taxol several weeks ago and I get Herceptin weekly) and by evening I had, and still have this morning, a six inch red circle around the port that itches like crazy. Of course, now it's Saturday, and reaching the nurse is a bit more difficult. Anyone with this experience? I'm wanting to claw the port out of my chest.
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bareclaws, if your port is not new, your skin might be reacting to the alcohol or tape/bandage used during port access. I get a little red and itchy too but it's usually gone a few hours after infusion and doesn't bother me much.
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I concur. Depending on the type of bandage they place on my skin over the port during infusion, I get redness where the adhesive was due to allergy.
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I've had this port since last November. Most tapes do induce a reaction but this extends much further than the tape. But I took a picture and will definitely show the chemo nurse next week. I smeared some aloe gel on it this morning and it feels and looks muchbetter.
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bareclaws - you might want to take an oral antihistamine also if you suspect a tape allergy.
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Bareclaws,
I get an allergic reaction to the tape adhesive (especially the clear tape). When this happens, I get that "under the skin" itchiness that travels up my arm. It's very annoying. It happened to me when I was in the hospital after my surgery. They had to remove the clear tape and replaced it with paper tape.
Since that time, I've had the clear square tape that they use to hold the catheter in place during infusions. I'm okay with it if it doesn't stay on too long. It just leaves a red & itchy square patch on my skin. The redness only stays in the area that was taped. It never goes outside of that area. It goes away pretty quick for me. I just can't have that tape on for a longer period of time. Was your infusion time longer than usual?
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Side effects: fatigue, joint pain, frozen shoulder (?) swelling/edema/puffiness of lower limbs, weight gain. There is discussion above about skin sensitivity. I had a PICC. I had skin sensitivity (rash, itching) at the catheter entry site. I attribute that to the combination of chlorhexadine + adhesive ... but who knows!
How often: got Herceptin every 3 weeks for 1 year (2016) Completed full year of therapy.
I had tremendous fatigue on Herceptin. I had terrible joint pain. Many mornings, I did not know if I was going to be able to get down the stairs. It was worst in the morning, and after periods of motionlessness, but did improve with gentle movement. A warm bath or shower also helped. I had swelling/edema/puffiness of lower limbs. This was worse while on cytotoxic therapy but continued once I was doing just Herceptin. I had weight gain - maybe because I was so fatigued and it hurt to move that I was less active? A curious one: about 9 or 10 months in I developed "frozen shoulder." I had a very limited range of movement in my left shoulder. It was painful. Treated with cortisone injection which improved things about 90%. That shoulder is still a bit stiff 11 months later but doing pretty well. The timing was curious in that it coincided with the Herceptin therapy.
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TampaBay, I have recently gone from 30 minute to 60 minute infusion. Maybe it is the tape.
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bareclaws, is there a convincing way to request longer infusion times? The oncologist's nurse is fighting me on it. Next infusion is in 5 days.
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sweet pea, I believe that is your choice-to infuse 30, 60, or 90 minutes. At least in my case, it was my decision, not the MO's, although she went along with it, allowing that it might reduce side effects. My chemo nurses usually ask how long before they set it up. So I've always felt I had the option to change it.
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sweet pea, I would not allow the onc nurse to dictate the infusion time. That is not her call. Insist on it or tell her you will speak to your onc. After all this journey (with the slash/poison/burn as we say) what a simple thing to ask for and one that has big effects. Keep us posted on this.
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Back to the tape - ask for Medipore or Hypafix tape. Those are the two least likely to irritate your skin. Or pull of the skin when the tape is removed.
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I have perjeta over 90 minutes,herceptin 60
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Am I ever glad that I took notes on day 1. Herceptin was first for 90 minutes, then Perjeta for 60 minutes, then Taxotere for 60 minutes then finally, Carboplatin for 30 minutes. Each infusion was followed by a flush. Two of them will have their times reduced by 30 minutes. I'm going to email them to find out which two and go from there. Thank you all for the encouragement.
P.S. I found out the new times (old/new) Herceptin (90/30), Perjeta (60/30), Taxotere (60/60) and Carboplatin (30.30). I'm hoping to come to a compromise with Herceptin; instead of 30 minutes, 60? If not, my water bill is going to be huge and I have no idea how my heart will take it. I'm already having weird SE.
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Whew! I got them to up my Herceptin infusion time to 1 hour instead of 30 minutes. At one point, I must have seemed like a PITA to them. No SE so I agreed to go with their short plan next time. My MD told me to take Dulcolax after chemo (really?) so I did on Friday at 9AM (day after infusion). 19 minutes later, normal result #2. Then at 4:50 AM Saturday it kicked in. Onward to taking Lomotil and Imodium. I took two Lomotil after 9 AM and was able to work my 4 hour shift starting at noon. If it weren't for my "healthy" weight, I probably would have been a bit drowsy. I'm feeling better with the addition of Lomotil.
Got a little relapse yesterday morning (why the morning?) and felt dehydrated so I went in for hydration therapy during the eclipse. Then I ate something and went in for a 5 hour shift. Felling better still today.
Side note: has anyone had proBNP and Troponin lab work done? I have an appointment with my cardiologist a week before my last scheduled chemo infusion (last time for all TCHP, then Herceptin for the rest of a year).
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Got my first herceptin only infusion yesterday. My right foot/ankle is slightly swollen tonight. I've been keeping it elevated while reading. Is that a SE related to herceptin?
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I'm not sure about that being a side effect of that but several nurses told me that eating salty foods may effect me. I tested out the theory and had a can of soup. Low and behold, ankle swelling. Cooled it on the salt and the swelling went down. My right ankle swelled more too.
P.S. I had my 2nd infusion a week ago, no swelling.
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I thought I would post an update now that I have been back on weekly Herceptin for 3 weeks. I am definitely feeling a lot better (even though I hate going there every week again). We seem to have found the formula that works--weekly Herceptin infused for 45 minutes. I know the 45 minutes sounds strange, but the nurse made a mistake one week, and I felt better. So, we kept it going. I was able to return to work this past week and there is no way I could have worked on the 3-week dose. Still get the Herceptin headaches and body/joint/bone aches plus the flu-like symptoms, but they are more manageable. The fatigue is the hardest for me with a full time work schedule. It was interesting to see that several of you are getting weird auras. I got an ocular headache after the last infusion where I had a strange light show in my left eye. I feel like I never know what is coming next. It is nice to know I am not alone on this crazy journey!
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Technology Teacher: goodness! Weekly Herceptin. I don't know how you do it. I am between infusions (once every 3 weeks of TCHP, #3 on 9/7/17). My first one was 90 minutes and they wanted it cut down to 30 minutes (6mg), but I got them to do it for 60 minutes. 30 minutes next time. Personally, I haven't had a repeat aura SE...yet. I hope that it's working out for you.
Update about ankle swelling. It's back for me and it isn't salt related. It seems that I'm at an impasse, sort of. If I work numerous hours at work, on my feet all the time, my right ankle swells a bit the next day and it's somewhat painful to walk on when I'm wearing my shoes. I loosened the laces, but no good.I think that I'll try to wear my Easy Spirit Traveltime clogs and see if that helps. Not as good support, but more comfortable.
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HapB: Have you spoken with the nurse or doctor to see if there is something else you could try since Tylenol did nothing for your headache? I hope that it goes away too for you.
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sweetPea - IMHO don't let them talk you into reducing the infusion time. I found keeping the Herceptin at 60 minutes during the TCHP and for the entire year afterwards made it tolerable w/o too many side effects.
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Its been a week since my first herceptin only infusion, done over 30 minutes. Really havent noticed anything, no bone pain. Had slight headache couple of days, chalked it up to not enough liquids. I am slowly putting away some of the drugs i have discontinued using, hope that i am not being too optimistic. Out to dinner with family to celebrate my birthday, might even have a glass of wine! Met with RO this morning, everything looks great, dont need to see him again. Waiting for results on 3 month echo. Feeling thankful the week has gone well.
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BJI, it's encouraging to hear that you are apparently doing so well. So good to hear. I hope that the lack of SE continues for you and all as well. Hope you had a fabulous dinner...Happy Birthday!
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HI All,
Puma Biotechnology has patient communication material about the newly approved drug called NERLYNX . They are looking for people currently on Herceptin to review this 3 page communication and answer the questions below. However, the document is still confidential, so all who review (including us) need to sign a confidentiality agreement.
If you are interested, please PM us and we'll get you the confidentiality agreement, and the document.
We, and Puma Biotechnology, greatly appreciate your help with this!
Best,
The Mods
Some of the feedback questions that they would be interested in receiving are the following:
- Is this language simple enough to be understandable? If not, what specifically needs to be simplified?
- Is there anything we're not explaining fully or clearly enough?
- Are there any messages missing?
- Are there any messages that are unnecessary?
- Are there any messages that raise questions for you?
- Are the messages in Stage 1 hitting the right tone and providing the right information for women who are just diagnosed/just starting to plan their treatment?
- Are the messages in Stage 2 hitting the right tone and providing the right information for women who are just finishing their Herceptin therapy?
- What is the best term to use with care partners when referring to their patients/loved ones?
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MinusTwo, my oncologist is a stickler for facts based on studies. He questioned me about slowing down the herceptin infusion and I couldn't come up with specifics. If I may ask, would you mind sharing a few of those select SE that he could understand that you had?
For that matter, do any of you gals recall any bad side effects with the herceptin, when they dropped your infusion time to 30 minutes (instead of 60 to 90)?
The topic will come up soon if not next week since my next infusion is on the 7th and they want to see me asap for my current edema. If they can't get me in tomorrow (Friday), then I'll have to tell them that I'm available on the 7th, LOL. There's some holiday on Monday and you know they won't be working and I work the other days, soooo. Someone is going to have to explain to me why everything stops on the weekends AND holidays. I am aware that they are on call, but that isn't the same thing. I work weekends like a lot of people, they should too.
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sweetp - By keeping the herceptin at a 60 minutes run, I avoided headaches, bone aches, additional dehydration & diarrhea that I had when they ran it faster. The infusion center didn't like giving me the extra time in the chair but my MO backed me up. The original idea came from others at BCO. I can't site any formal studies. Hope you don't have to justify it by being a guinea pig.
Edited to add - I still had a runny nose but not really any other SEs. After that one disastrous 30 minute run, I continued with 60 minutes for the entire year.
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sweetp - what issues with edema are you having? I have some edema wiyh my right foot, came after first dose of just herceptin. They say not related to the herceptin. Does go away by morning, but comes back every day. Thinking i will have to call again.
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MinusTwo, thank you. Looks like I will be a guinea pig. At least he's going to allow me to stop the Perjeta. The D was a bit brutal this time and I had to go in for a juice up.
HapB: I'm already having a few nosebleeds, but no pain. Good point though; each person reacts differently. So sorry that your SE were terribly painful. I couldn't imagine. Such a waste that the SE aren't being kept track of. It's keeping production up on those OTC's and then some for D, that's for sure.
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Kb870: Thank you! My first infusion was 8mg (for 90 minutes) and the second was 6mg (for 60 minutes).
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