Herceptin - Quick Side Effects Poll
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Wondeful news Frank, I am so happy for you!!!!
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Thanks Marjie,
Boy how I hate my port! How long did they wait before removing it?
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Omaz--I didn't ask my onc which trial she was following for her info on a shorter tx of Herceptin, but I googled the subject and found several trials going on in other countries. One done about 5 years ago showed a 98% equal outcome for just a 9 week course of Herceptin compared to 52 weeks. There are several more trials going on that are in their final phase, ending this year. I think those are testing for 6 mos tx vrs. 12 mos.
I guess the RX companies (Roche) usually starts out recommending a long duration, then the SEs start showing up, which causes studies to show that the RX may not need such a long tx course for the desired benefit. I'm hoping, for the sake of SEs and financial reasons, that a decreased duration of Herceptin will prove successful.
Puce--Good luck in your port removal. Mine came out the next week after my last tx. Just a local anesthesia, which had a burning feeling for a few seconds, then I felt nothing but little tugs as they took it out. I was sore in that spot for a few days, but only when I layed on that side. Sutures disolved and I healed quickly. Feels good to have it out!
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Marjie and Joanne - congrats on being done!
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Hey, SpecialK--congrats to you, too!0
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puce - I had my last Herceptin on Jan 4, bloodwork and followup on the 17th, and port removed on the 23rd. Pretty quick! This week it is bothering me a bit - the incision is fine, but it's the stitches inside that seem to be giving me grief - nothing compared to when I first had it put in though so I shouldn't complain.0
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I'm back on the site after being absent for a couple years. Life just got crazy! I wanted to weigh in on the Herceptin side effects. I didn't notice much besides a runny nose in the beginning. I guess I was getting over feeling so rotten during chemo that this didn't bother me much. However, after about my 5th treatment (3 weeks apart) I started feeling really fatigued with occasional shortness of breath. I didn't think much of it and continued treatments. I woke one night from a dead sleep gasping for breath...I chalked it up to a nightmare that I couldn't recall! A couple of weeks later I had a similar attack during the day. I went straight to my onc. He suspected a blood clot or cardiac problems. Tests were done over the next few days and I was stunned when I found out my ejection fraction was down to 18%. No wonder I was short of breath! It was in the mid 50 range during chemo. I was put on cardiac medication and told I might regain some of the function, but not to expect it to ever be normal. I had completed 11 of the 14 treatments scheduled and stopped them at that time. Within two years my EF was up to 36% and I was feeling better (taking Coreg, digoxin, and Lasix). This past summer (4 years later) my EF was at 61%!!! My cardiologist was amazed and actually called me on the phone to give me the news himself! He told me to keep on doing what I was doing and he would see me in a year. I know not everyone is this lucky, but there is hope.
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Wow, that's great news steph!!! Did you do anything special to help your heart recover?0
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I'm with Omaz--great news, steph! You must be taking good care of yourself, along with some nice guardian angels
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Great news! Thanks for sharing. My EF went down to 45 and they're watching it closely. Glad to hear all is good with you.
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Sandy_Mac: I had an anaphylactic reaction to my first infusion of Herceptin and was also told it was a very unusual reaction.
Sumair
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Sumair: Will you be able to continue your Herceptin?
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My ejection fraction was 50-55 before I started chemo. AFTER A/C, Taxotere, Herceptin, and TDM-1 (Herceptin with an addition toxin molecule) it is now up to 65%! I did it by adding a daily pill of Hawthorn supplement. I learned about it from a friend who had congestive heart problems, and it really worked for her. And now it has really worked for me.
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Steph, after a week of being fatigue, I finally had a good night sleep, but still feel tired.
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Hello Sisters
Got Herceptin dose #20 last Thursday and as usual all went well. Back into the office on Friday morning and at an opera on Saturday night and a football match on Sunday. I have to go on the day before treatment (the Wednesday) to give bloods and get a few other things checked. Last Wednesday after giving bloods I had to wait longer than usual. A new doctor has joined my Consultant Onc's team and he wanted to meet me. You will recall that I'm the 1st person in NI who has not had BC but who is receiving Herceptin. From things he said he had obviously read right through my file. He enthused about my progress and how well the Herceptin was working.
Sumair are you going to be able to continue with Herceptin. I get home treatment and I know that the nurses carry an anaphalactic kit with them at all times but I thought it was an unusual occurence.
Windlass did you chat to your Onc about using Hawthorn before using it and if so what did he/she say? My EF is holding above 50% but I will try and remember to ask my Onc about Hawthorn.
Marjie congrats on being done. Apparently I will continue to receive Herceptin for as long as it is working which hopefully will be a long long time ! ! !
take care sisters.
Frank
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I'm trying the Hawthorn! Thanks WL! (And Omaz
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Hi Everyone- has any of you had any lower jaw/tooth ache while being on Herceptin? I am just wondering.... I had a cavity filled about a month ago, and I still have some pain and sensitivity in my lower jaw. The dentist told me last time that it was a deep cavity, but no root canal was needed. I am now thinking that perhaps it is one of Herceptin's side effect. Anyone experienced something like this?
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yes, I am using sensodine and it works like a charm<3
wish I could say the same about the heart stuff... it hurts so bad and palpatations and breathlesssness... but I have already decided that since I am one of the 15% who get the heart failure I wont get lymphodema... fair is fair right?
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Before taking herceptin, I thought from reading here that the side effects from herceptin were mostly a runny nose, and possible, but rarely heart damage. After the first infusion, I am seriously wondering if I am allergic to the treatment. At first, the side effects seem harmless...but it's not getting better, but worse, so I don't know if I'm allergic to herceptin. Hopefully not in that it is as someone said a "watch dog" for those her2+ cancers. I am really torn, 50/50 if to continue the treatment. I fear not doing it and I fear doing it
From what I am googling in regard to Herceptin side effects, there are b9 side effects and more serious side effects.
B9 side effects
http://www.drugs.com/sfx/herceptin-side-effects.html
Back pain; change in taste; diarrhea; dizziness; fingernail or toenail changes; headache; loss of appetite; muscle, bone, or joint pain; mild fever or chills; nausea; nose, sinus, or throat inflammation; runny nose; stomach pain or upset; tiredness; trouble sleeping; vomiting; weight loss.
Then there are the more serioius side effects such as
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); burning, numbness, or tingling sensation; change in the amount of urine produced; chest pain; difficult or painful urination; fainting; fast or irregular heartbeat; mood or mental changes (eg, depression); muscle pain, weakness, or cramping; new or worsening cough, shortness of breath, or trouble breathing; pain, redness, or swelling at the injection site; pain, swelling, or sores of the mouth or tongue; severe or persistent dizziness, lightheadedness, or headache; severe or persistent nausea, vomiting, or diarrhea; skin infection (eg, skin discharge, redness, swelling, or warmth); sore throat; sudden, unexplained weight gain (eg, more than 5 pounds in 24 hours); swelling of the hands, ankles, or feet; symptoms of infection (eg, severe or persistent fever, chills, sore throat); trouble swallowing; unusual bruising or bleeding (eg, nosebleed); unusual calf or leg pain; unusual tiredness or weakness; wheezing.
The side effects that I worry about is the tightness in the chest, unusual tiredness, lightheadedness, and constant headache. I am amazed I don't have a runny nose like most seem to do.
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I finished my Herceptin in January and just recently saw my cardiologist. I'm cleared to carry on as usual but was warned that I do have damage to my heart but it was most likely caused by the "hard" chemo, not Herceptin. Hopefully I will not ever become symptomatic - he gave me another magical 5-year window - if I get past the 5 year mark with no heart issues than I should be good.
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Marjie: Did your cardiologist say how they tell what your heart damage is caused from?
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Has anyone gotten rid of the drippy nose? I can't stand it anymore!
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puce - You could possibly try an antihistamine to see if that helps - something like chlorpheniramine (old fashioned one that makes you drowsy and dries you up) or the new non-drowsy ones liike claritin.0
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achpurple - my chemo was the FEC-D regime, almost all of which can be quite heart toxic. All my symptoms such as shortness of breath, heart palpatations, and weakness would happen for about the first week or so after each tx. My oncologist was fine with it as long as they went away - the cardiologist wasn't so fine with it, but he pointed out that there wasn't really an alternative...I needed the chemo, so they just kept a close eye on me. I was so focused on the Herceptin, but really it ended up being the least of my worries!0
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Frank - Thank you! Here's hoping your Herceptin just keeps right on doing what you need it to do!0
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One day at a time.....
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Hi all, quick question...about to finish Herceptin, two more to go (yea!), but the past few times, two days after the infusion, I'm nauseous and weirdly jumpy. Like ive had waaaay too much caffeine. Anyone else have this? Also, so tired I can barely stand. And I'm off to a gig...ugh. Anything I can do to offset this nasty feeling?
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Hello ladies
Marjie The younger son of my "big sis" (The one in London On) his wife and 2 children are here on holiday at present. Yes let's hope that the Herceptin keeps on working.
Puce I asked my Onc what could I do about the runny nose and he - partly in jest - said use a hankie lol. Although when you think of it and this is purely a personal opinion if you have endured chemo, you have poured enough (poisonous) chemicals into your body without taking more chemicals. However I agree with you that it is a bit annoying. I often sit at my desk in the office or in my car with my hankie sitting on my knee rather than in my pocket.
Littletower a few times on the night of my H infusion I have had trouble sleeping as if I was hyper but can't think of any time I felt tired after the H infusion.
Had to stop there now for a moment to wipe my runnny nose LOL.
Going to an opera tomorrow night (Saturday). It's another of the series broadcast live from the NY Met. to cinemas through out the world. I think I told you before, costs £20 for the "best seat in the house". If you went to the NY Met the best seat would cost over $400.
Enjoy your weekend ladies. take care.
Frank
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Littletower,
I had the nausea with the H. I took prilosec the day of infusion. That seemed to help. I also had the muscle and bone aches for a day or so.
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