Herceptin - Quick Side Effects Poll
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Hmm...I don't notice the smell, my daughter does. She says it's a chemical smell like hair salon...a little sweet, but not natural.
I had a infusion today. I like that I'm not getting premeds because I'm more intune to the side effects. I am not tired due to Benadryl, but Herceptin. During infusion, I can feel it hit my heart, really. My heart races and I feel it throbbing.
I'm feeling a lot of the stiffness the ladies here talk about. My eyes are getting worse. Even with my reading glasses I couldn't read my Kindle Fire.
I have another echo Thursday. My blood pressure has gone up. The cardio doctor maybe putting me on heart meds...not sure what. My oncologist says if my EF drops, she may take me off Herceptin altogether. I won't mind going off it as I feel I've had enough for early stage cancer. We'll see.
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WOOOOHOOOO.. My EF is up to 56% got my Herceptin treatment today Only 4 left
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Happy for you Ossa.
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Happy for you Ossa.
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Ossa, so happy for you. Praying my EF goes up!!
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OSSA good news...I go on tues for my next hit of Herceptin...I go until December...I am having leg pain in my right leg and I broke down and have an appointment with my primary today ugh! Had a hard time making the appointment..so much anxiety and dread...but pain won out!
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I started Herceptin August, of 2011 along with my other Chemo treatments, for six rounds, once every three weeks up to Dec. 6th. Started taking the Herceptin alone, on 12/27/11, and another round again, on January 17. Next scheduled herceptin treatment was due 2/7, but the results from my Muga, on the 2nd, showed marked decrease in my heart function, so they put me on a break. Had another Muga on the 16th of March, and all looked back to normal, so they put me back on Herceptin starting March 20th, on what they said was a lower dose. Had treatments on 4/10, followed by another Muga, and all looked good. Subsequent treatments on 5/1, 5/22 and 6/12, followed by another Muga on 6/29. Today, 7/2, went in for treatment, and they are stopping all remaining scheduled herceptin, as heart function not normal, again.
The day I heard about Robin Roberts, I could hardly breath, for fear that all this work, trying to save, and prolong my life, might actually weaken my body to a point that it's the treatment that could kill me, not the disease. Just learn also today, that the wife of one of my co-workers has now been taken off all chemo and drug treatments, and it's just a matter of time. So sad, so scary, and I feel so alone!
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Scottie - I'm right here with you! I had one four week break in herceptin in April/May and they just changed my schedule to three weeks on, one week off because of a decrease in function. My schedule had been every week. I go for my first MUGA in a couple of weeks. I've only had echos until now. It's terrifying. My dad had what Robin Roberts has (he had no previous chemo or history of cancer) and his MDS progressed into AML. I'm scared to stop too early but scared to continue too. But, after talking to my MO, she said you have to treat what you have now while being aware of what may or may not happen later. It makes sense but it's still unsettling. As of yesterday I have completed 25 of the 52 herceptin infusions. (((hugs)))
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Went to see Cardiologist yesterday. I've been off Herceptin since May 15th. He put me on 2 meds, thinks my EF will increase, suggested I have a stress test, and I don't see him again until Sept 10th. I guess that means I am on Herceptin break until then. I feel good.
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Denise, me too...I was just put on a Herceptin break. My oncologist just called. My EF dropped to 45. Before Herceptin it was 65. I figure if it keeps dropping and I have a break that it will only do it again if I'm put back on Herceptin. Since I am only stage 1a, it's preventive anyway. If I had cancer else where or higher stage, I might feel bad about getting off Herceptin. Right now, I don't. I' only felt like I should do Herceptin due to having bad luck so far in regards to 3 recurrences from the same breast. The odds hasn't been in my favor. Now, I'm hoping I've had enough Herceptin to due the job.
My oncologist wants me to have another echo in 6 weeks. I don't really want to go back on Herceptin. I just want to feel well. I want my energy back, and recover from the Herceptin side effects.
I thought when I had a Herceptin break due to EF drop, I would also break from bco for awhile. I realized after first writing it here that I need to be weaned from here...and I have reconstruction final surgery later in July. I want to to stay for awhile until I'm somewhat normal, and done with all this bc stuff.
Thanks ladies for your encouragement, and seeing me through all this.
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evebarry - My EF dropped to 40 and was 65. The break will do you good. Since I was Stage III, I'm more concerned about Herceptin break, but to be honest, I feel so much better just having a little break from drugs. I'm doing Rads now, but honestly, I've been sailing through them.
It has helped me just feel a little normal without going for Herceptin. I want to get back on it for peace of mind, but I am thankful for the break.
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Denise, I started on Herceptin in Feb. 2012. After two infusions my EF dropped from 65 to 50. I took a six week break because of the drop and a upcoming 2nd reconstruction surgery March 5th. After the six week break, I think I had one more 3 week infusion and then it went to weekly infusions on an off through June. When I did take the first break it took me about 4 weeks to feel good. I heard herceptin stays in you for about 6 weeks. btw..I had 2 infusions since my last echo. It could be lower...not sure.
Did you have strong palpitations? Breathless? or any other side effects?
I'm glad you didn't have problems with rads. I seem to have problem with whatever my oncologist throws at me.
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I also had palpitations after this last infusion. i have heart arrhythmia problems before BC so this makes me nervous. I have 7 more infusions one every 3 weeks until December...my next echo is in August. I have leg pain, and I am tired and just don't feel right not sure if its from the Herceptin or tamoxifen that i started? NORMAL where are you???????
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I will be finished with herceptin on July 17th. Only one more to go. These last few months with herceptin have been tough. I have no energy and my body just aches at times. Mostly it is my hands and feet, but more commonly now is my hips and shoulders and elbows also aching. There are many times I struggle to get out of bed because of the joint pain. It hurts. I have this continuoius myalgia and I want to go curl up in bed and not move. I am so anxious to get the herceptin over with and back to my non infusion life!! My MUGA was at 70 prior to herceptin, but it has steadily increased to 79. Oncologist wants me to see a cardiologist to check my left ventrical since my muga has gone up instead of down. I am sure hoping that these aches are caused by herceptin and not anastrozole. I still have to take anastrozole for 41/2 years.
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Christean, unual for the EF to go up instead of down. I wonder what that means? I understand the feeling of wanting to curl up in bed and not get up. I've just begun having alot of stiffness and joint pain. I' feel like I've age at least 5 years in the last 5 months. You should document changes you see after getting off Herceptin so to know what is caused by Herceptin and what is caused by anatrozole or other meds. From what I heard and read it will take a few months before you're back to normal or close to it.
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Christean... congrats on only having 1 herceptin left. So jealous. Dancetrancer... I did not go on any heart meds or see a cardiologist or anything during my herceptin break. Function jumped back to normal by itself. They basically started me back up to every 3 weeks. I just had my 2nd infusion since the break on Friday. No muga again until August. That kind of makes me nervous. I have 7 or 8 herceptins left. If my muga goes down again, I'm not sure I'll finish the few remaining. I know RR issues were related to the AC chemo she received. She was triple neg so didnt get herceptin. However, I also had AC chemo. That plus the hit to the heart from the herceptin is stressing me out a bit. Feel like I'm pressing my luck, but I am just going to continue for now. My worst symptom right now is stiffness, esp in my hip after sitting awhile. When I walk it gets better. I was getting worried it was mets or something, but now after reading the posts, I am pretty convinced its the herceptin. Also, I noticed since I'm back on the H that my hair is growing very slow. It was growing great while on my 6 week break. Oh the joy.0
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ccjj - that's great to hear your heart function returned to normal without any meds required. Hope that all goes well for you - I've heard that rechallenge with Herceptin can be done successfully!
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Thanks dancetrancer. I noticed you were 43 at dx. So was I. Turned 44 in Nov. Dx on July 7, 2011. Good luck to you also.
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Yesterday, while at a outdoor Sunday wedding, I had a dizzy spell. I put my head down hoping I would feel better. I felt sick to my stomach. My head began to hurt. Could this be a heart attack or am I dehydrated? My daughter looked at me and said, you don't look well. I felt weak. After the wedding ceremony, I drank 4 cups of tea. I could barely walk. I didn't have chest pain. I ate a little hoping for a burst of sugar to put me back on my feet. I couldn't focus. Just wanted to go home. After sharing this with my family they insisted I go to the hospital. I feared it would be another cry wolf and find it nothing more than a herceptin side effect. I thought if the dizziness goes away before getting to the hospital I wouldn't go to the ER. But, it didn't go away. The world was still spinning. So...late at night we went. I wasn't having a heart attack. Happy. I'm completely baffled to why I was so dizzy and felt like passing out. The doctor said a sudden drop in blood pressure could do that to you. The only thing is we did go up very high to where my ears popped and then down, down, down to a gully where the wedding was. Perhaps it was nothing more than pressure from going so high and suddenly to the very low valley or whatever
Today, I'm still very light headed, a little dizzy and weak. I had an incrediable busy week so part of it could be pure exhaustion. Treatments such as Herceptin make you more parnoid about the heart, especially when you have a low EF. Tuesday, I have another appointment with the cardio dr. My oncologist wants to put me on heart meds. With what happened yesterday, I'm not so sure I want to be on heart meds. What are the side effects of heart meds? I don't like that you have to stay on them for a long time.
Also...has anyone on Herceptin ever have lung issues or problems? No one ever talks about the lungs. It is also supposely a side effects. I'm wondering with burning in my chest or short breath has anything to do with the lungs? Does the oncologist ever consider lungs as being part of the problem? Maybe it's not all heart?
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Evebarry - Cardiologist just put me on heart meds due to Herceptin. I was afraid of them, but I feel so much better in just a week and have more energy. My heart was racing too. Don't be afraid of it. He put me on common meds and I had absolutely no problems. I was kind of terrified.
I have had lung problems - had them during Taxol/Herceptin and now in Rads. Never quite sure what they were. Have always had some lung trouble even before BC. Alot of mine were food allergies that developed during chemo. MO not really sure what all went on and honestly, I don't want him looking for more trouble right now. I can barely handle what I have to deal with. I am doing deep breathing exercises to try and help my lungs out. It seems to be helping.
I am hoping my EF goes up with the meds to resume Herceptin - don't have another ECHO until Sept so still on hold.
Gosh, sounds like a bad experience yesterday - so sorry. Glad it wasn't heart attack. Never had a dizzy spell from Herceptin - but who knows?? Hope it does not happen again!!!
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Eve, before I was Dx with BC, I was Dx with bradycardia, slow heartbeat. I went down at work andy heart rate was 30. Less then half normal, I had a pacemaker installed the next morning. I had felt, dizzy, nauseous and just not right. It had happened to me twice before, but I was never in a medical setting during one of the episodes. Since the pacemaker was placed, it goes off only less than 3% of the time. So that's why all the tests never found it. I had echoes,stress tests, wore a holter monitor for 48 hours and never showed anything. I am not saying this is what you have, but, Next time you start to feel sick, get to ER right away so they can catch it is what I am saying. BTW, since I had it installed I haven't had any problems. Much love.
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Thanks ladies. The reason I mentioned the lungs is because my chest is tight. I also have burning under my rib cage. It can be due to the reconstruction. It's good to know heart meds make you feel better. I don't want to feel tired. My next echo is July 30th. I've have had a lot of echo's. If it's ok my oncologist wants to put me back on herceptin. I'm not sure I want to go back on. All these heart issues have given me a good scare.
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HAd my second Heceptin infusion after my break today.. This should have been my last treatment, but missed three treatments due to low EF.. Heart meds helped a lot, realize now how crappy I felt.. Guess it came on so slow I did not realize it.. So far no heart palpitations, no shortness of breath,, Have three scheduled treatments left.. so hope I will be ok to get them..
For hose of you who have been on heart meds.. how long were you on them?? I have been on mine for a month and a half so far
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Ossa - I've only been on heart meds 2 weeks. Don't have another ECHO until Sept 10th, so Herceptin break continues until then. I have so much energy now even though I am winding up Rads next week. I realize the heart was making me tired, too!
I was so afraid to go on them, but so glad I did.
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Denise, I'm happy the heart meds helped you. I saw my cardio doctor today. Without saying anything about Herceptin, he said he wants me off Herceptin. He said my heart is steadly declining, and I'm at risk for heart failure. My oncologist said my last echo was 45, he said if you round it out it was 44 so it was probably 43 to 45. He also gave me a low dose of heart meds, two different ones, twice a day. He then wants me to do another echo in a month. My oncologist has me scheduled for a echo on July 30th. She is hoping to put me back on Herceptin mid-August. I see on the write out he gave me after leaving his office, no herceptin. So, now, my oncologist won't push it.
My cardio doctor also has me scheduled for a chemical stress test. He wants to make sure that my problems aren't all due to Herceptin.
I had mixed feelings about being on Herceptin. I am relieved that I didn't make the final decision. It was an answer prayer. I can say I gave it a try. So, I had about 3 or 4 rounds of normal (3 wk Herceptin) infusions, and a handful of low dose infusions, which comes to about 6 normal infusions, maybe? That's a decent amount hitting Her2+++ possible cancer cells. I'm pretty confident that the Herceptin I had took care of any possible stray cells.
And if not, then I will deal with any recurrence when it happens. For now, I need to get my mind away from cancer. I also look forward to getting back my energy, and life back. I'm tired of being out of breath, and weak. I am also interesed, and will post when the present Herceptin side effects disappear. I'm especially interested to when my eye sight improves, skin, and overall health. Again, I'm recording all this here so those who do herceptin will have an idea possible side effects of Herceptin, and recovery because taking Herceptin alone can't be confused with chemo side effects.
(((hugs))) to all of you. Wishing you all the best! Hope everyone recovers nicely.
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Well, I' checked out http://www.askapatient.com/viewrating.asp?drug=20297&name=COREG&page=2&PerPage=60
and...not sure I want to take them. I rather first see if my heart recovers by itself without taking Herceptin. I tend to fall in the realm of horrible side effects. Extreme hair loss, joint pain, memory problems and fatigue are a few of the many side effects the people listed. I read on the side effects listed on the paper that the doctor gave me...you can have a heart attack if you suddenly stop it. Also...dizzy, and may not be able to drive.
With all the side effects with Herceptin, I'm not about to jump out of the frying pan into the fire. I think I'll wait and see if my EF goes up on its own.
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evebarry -- what did doctor give you for meds? My cardiologist gave me Lisinopril 10 mg and Metoprolol 50 mg. They are common heart meds from what I hear. I've had no trouble. He weaned me into them taking a half pill, then going to a full pill on one gradually. My EF was about 40. Before chemo, it was 65.
My EF didn't go up on its own after a month. That's why I had to do this. I am hoping by Sept it will. I'll let you know!
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Eveberry: just read your post about your issues at the wedding. Very strange, and ironic, I had something very similar happened today at work. Very light headed couldn't focus. They've taken me off herceptin twice; once in February after 8 rounds, then again the first of July after 5 more rounds, and they stopped all remaining treatments. I thought by now I start to feel better, but in fact I feel worse than I did at the beginning of the year. Guess I'll call my onc in the AM, and see what he has to say.
Regarding heart meds, I already taken lisinopril for high blood pressure, and have for years.0 -
scottie...before Hercetin I had very low blood pressure, like a 100/50 or lower. It's now 100/130 which is high for me. At this point I don't think the oncologist can do anything for us. It's the cardiologist whom we now have to see. My cardio doctors prescribed Carvedil, and Lisinopril///twice a day. Because of all the dizziness, and all he is having me take a stress test. Even at my last oncologist visit late June, my oncologist said, we need to worry about the heart.
I'm taking coq10 and other supplements. Right now, I'm hoping that my heart will recover so I won't have to go on meds. My next echo is the 30th of this month. If it's better, I won't take the meds. If not, I might. I did get a message from my naturalpath. She wants to see me ASAP in regard to the heart. Ironic, I'm not so much worried about a cancer recurrence, but heart failure.
Let me know how you are doing. You might ask your oncologist to refer you to a cardiologist. Mine did without asking. You would think our hearts would begin to recover. But, heard the drug stays in your system for 6 weeks.
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Hi,
I have been on Herceptin only for the past 6 weeks now, 1 infusion every 3 weeks of 450mg. So I have only had 2 infusions of 450mg started June 22nd. Before that I have had 4 rounds of A/C, and 3 rounds of Taxotere(suppose to be 4 but discontinued for low wbc), and 8 rounds of single dose Herceptin 150mg. So total infusions of 14 doses of Herceptin since April 27th. Had no problem on single dose of 150mg but triple dose of 450mg(1 dose every 3 weeks) has brought on many side effects. Heart palpitations all the time day and night, joint pain in hips, wrists, knees and feet, feet swelling, running nose and major fatigue. I was referred to a Cardiologist who just did a Muga scan on me. EF in January of this year before the start of chemo was 70%, today EF is 61%. He has also ordered a Holter Moniter on me to see how many heart palpitations I am having within a 24 hour period. Just wondering if anyone knows if that drop would constitute stopping Herceptin? I was told an EF between 55-75 is normal... I am due to have a double masectomy with reconstruction next month and just wondering if I should stop the Herceptin before this surgery???? I sure don't want any heart problems during this 5 hour surgery...
Thanks for any help...
ER-,PR-,HER+++
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