Herceptin - Quick Side Effects Poll
Comments
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Countrywoman - My grandmother had heart problems, my grandfather died of a massive heart attack, my dad had a heart attack recently - I was diagnosed at some point with pulmonary hypertension, which puts added strain on the heart. I'm half-way through my year of herceptin and have had zero issues. I had an echo before starting treatment, and have had two since then, at 3-month intervals. The whole purpose of doing the echo every 3 months is to catch any potential issues early enough to prevent problems. My personal opinion is that the benefit of the herceptin is faaaarrrrrr greater than the possibility of side effects. Don't be afraid of it - for me, the herceptin has been the easiest of the regimen! And remember, when the drug companies post side effects, they have to list all of the potentials, no matter how small the percentage. Hope this helps!
Omaz - beach time can't get here soon enough for me!!
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bbryant - We are going on a family vacation to the beach in June. I love snorkeling and we will be able to do it there. Can't WAIT!!0
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Herceptin alone can cause heart issues but when you add adriamycin the risk is higher. There is a risk with adriamycin alone too.
I too was concerned about heart issues but when I saw the risk for heart issues with Herceptin was low (and many times reversed once the drug was stopped) and the risk (in my case) was extremely high for recurrence without Herceptin it was a no brainer for me.
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Yes. And the heart problem from herceptin is different from that with adriamycin.
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I owe my life right now to herceptin, after the 1st treatment you couldn't feel my tumor and my other tumor (liver) has melted away to almost nothing. History of heart attacks in my family, my dad had 4, but so far my ECHO's look the same as before I started herceptin. It is an amazing drug!
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My heart function dropped from 65% to 51%. My onc put me on a blood pressure med (enalapril) and my heart function has steadily increased. It's almost back to where it was when I started. For awhile I had more frequent MUGA scans, but now I'm back to every 3 months.
I have a lot of heart disease in my family too, but the possible heart damage caused by Herceptin is different. And if there is any damage it is almost always reversible. My onc told me what SEs to look for, and although my HF dropped, it was still an acceptable number. I never had to miss an infusion.
I think the benfits of Herceptin far out weigh the risks. Her2 is an aggressive cancer, and we need to do everything we can to fight it.
I had my 16th infusion last week, and I was very tired the next 2 days. Especially in the morning--very hard to get moving--felt like I was walking thorugh cement and my brain was NOT working at all! That's about my only compliant these days. Some infusions are worse than others for some reason.
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We are indeed fortunate to get herceptin!
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I'm glad I found this thread, although I'm not finished reading it yet. My onc is one who said that Herceptin had no side effects, so it is very interesting (and a little scary) to read of what everyone has experienced. I've only had a few Herceptin only treatments so far and can only identify the runny nose so far. I'm fatigued, but don't think will be able to tell if its due to Herceptin until after Rads are done.
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http://www.herceptin.com/adjuvant/index.jsp Here is a link to the Herceptin website and their list of SEs. You can also google Herceptin prescribing information and find more info there. I don't know why the docs say there aren't any side effects. I mentioned to my nurse once that I saw the package insert and it lists many SEs, and she said yes, it does, but they don't see people who have those SEs very often. Fine, but don't say they don't exist!
I'm thankful my SEs are minimal, and nothing compared to chemo, but I sure feel bad for those of you who get hit hard by it! For the newbies--bad SEs are rare!
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I remember when I first got the nose bleeds. I told my NP I thought they were from Herceptin and she said no. Then I met with my onc and as soon as I said nose bleed she said that can happen on Herceptin but they don't know why… and nose bleeds are even listed on the herceptin site.
Let see if I get one this round. Usually it happens a week after infusion.
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Im on herceptin only, finished chemo and rads last year and my worst side effects which I know is off herceptin is sore watery eyes and swollen eyelids they're almost closed at the minute. I wasn't sure if it was definatly off herceptin at first but I had a break for 2 months when I had reconstruction and during that time I had no eye trouble then 4 days after I went back on it they flared up again and have had problems ever since. I also had really bad fatigue for the first few months but only get that now and again now
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Did anyone else only have Echo's and no MUGA scan? I have not had a MUGA and wonder if that is okay. I have had several Echo's and will continue to get them every 3 months.
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ReadingMama I think tis a MUGA or Echo. I don't think you need both. On the Herceptin site it says your heart should be monitored. They don't say what specify which test.0
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readingmama - I have only echos so far. My doc said if there is a problem they would do a muga but if things stay alright they go with the echo.0
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Thanks Lago and Omaz! Lago, I see we finished Chemo on the same day! Did you start Rads yet? I got sick, so I will start next week sometime.
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ReadingMama I got a pass on rads. I was in a gray area. Rad onc felt I was being treated very agressively so she gave me a pass. In my case I am doing hormone therapy for 5 years (anastrozole since March 1st). I think if I wasn't I would have to do rads too. Hope rads aren't too tough on you.
I started chemo on Oct. 5
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Went to the Onc. this week. Apparently only 5% of the woman on herceptin have my symptons. He is going to stop the herceptin for 1 month and see if this goes away. I have had 13 so far. I also asked about not being able to confentrate, feeling foggy. He said it was chemo brain??? I finished chemo in July/10. I sure did not feel this way last year. I asked to see if they could put it in at a slower rate and would that help? He said that they give me enough herceptin to stay in my body for the 3 weeks and it would not make a difference as to how it was administrated. I know this drug is more beneficial than harmful, but I think the percentages on the side effects should be revisited. Can't wait to feel better!0
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chelemybelle~ I feel your pain! I have had such issues with my feet, they are so sore on the bottom, especially the balls of my feet. I walk like a duck. We ended up buying the new lightweight running shoe from Nike for my daughter who is in track. They got such great reviews, especially from her, that I bought myself a pair on Sunday and my feet are already feeling a tiny bit better. They bend so easily at the toes that it just "rolls" as I walk. My feet were so swollen just from my old sneaks at the mall, but yesterday I wore the new ones all day and they didn't swell. I also got insoles for them that balances some of the weight onto the arch of my foot and not just the ball. I never spend a lot on shoes for myself, but I couldn't take the pain anymore. They just make my everyday walking a little easier and I'm hoping they will pull me thru my Relay for Life in June! When I was done with my TCH cocktail and just going to Herceptin in January, my onc told me flat out that there can be joint pain with it, and to take Tylenol or if it gets really bad, vicodin. Depending on the day and what I'm doing, I will take the vicodin. It never totally goes away, and you are not alone! And as far as chemo brain goes, I hear you can have that forever....great. Take care and hoping you will be relieved from your aches quickly!
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chelemybelle- I think I said this before, but I am doing Herceptin weekly at a lower dose rather than the mega-dose every three weeks. Onc. said the 3-weekly dose was more for convenience than anything else - keeps you from having to go every week. My decision was based on my SE's from Taxotere, which my Onc said that in all his years of practice, only one other of his patients had the same SE's. It negatively effected my liver. Once they reduced the dose, my liver fuction returned to normal until the last dose - but then it was the last one, so that worked out okay, too. Because of that, and knowing that I tolerated the Herceptin only during the in-between weeks of TCH, I opted to stay weekly (if it ain't broke...). As for the chemo-brain - I dealt with that while on TCH - but again, doing Herceptin only, that has definitely gotten better. I still have days when I can't remember anything, but it's DEFINITELY not as bad as while doing TCH. All this to say, maybe your toleration will be much better if they reduce the dose and you get it weekly. Feeling good is absolutely worth the inconvenience of going every week.
One other SE that I had - the nasal / respiratory issues - I thought those were herceptin related, but after being off the TC portion, after a month or so that has improved tremendously, too.
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thegood5- Thanks for the suppport. My feet were sore in the beginning also. I thought it was my sandals and changed to my sneakers with support for my insoles. This did help. I think the longer I was on the herceptin the worse the symptons got. My doctor perscribed Ratio-Oxycocet for the really bad days. As for the chemo brain- that's awesome. Now I walk like a 90 year old, feel like a 90 year old and apparently will not be the sharpest tack in the box (not that I was front runner to begin with). LOL
bbryant04- Sorry you had a bad time with Taxotere. My chemo was no worse than I expected. I was fine with the radiation. My symptoms got worse after a long period of time on the herceptin. I guess my system is just having a bad reaction to it. My Onc. said he has never had a patient who has had this reaction as I am having on herceptin. Hopefully being off the herceptin will work and I will start to feel my age again. I was worried about not finishing the treatment but the onc said that the full year was the general prescription and because I was more than half way through I should be okay.
isis- Hope you are doing okay.
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Anyone develop a lower back ache after herceptin infusion? I had my infusion yesterday and my lower back hurts today when I try to bend - OUCH! Anyone else experience this?0
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I had horrible lower back pain on TCH, so much that I would lay on a heating pad 3 days straight. It has gotten so much better tho since I'm only on the herceptin...just kinda achy all over. hoping you feel better quickly!
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I get pain in joints/areas where I would occasionally have problems before this all started. So for me this is my left hip, right elbow , right thumb and back between my shoulders. Not sure if it the hercetin or left over from the taxane .. It does seem to be improving the farther out I get from the taxanes ( last one Jan 24th)
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Chelemybelle, I am in dire straights, so to speak. Yesterday, I couldn't even get out of bed let alone take a shower. When I did drag myself up everything was hurting but primarily my lower back and now it appears the sciatica nerve is involved. This is very painful and debilitating. Worst though is that my body felt like it was dying. I was as weak as a new born kitten. I have kept a record of my good days and bad days (things are way worst now than in the beginning) to see if I could detect a pattern. There appears to be one, so for the next treatment (next week) I will mark off the days that I can expect to be bad. Chelemybelle, have you or anyone else noticed such a pattern? I am better this morning--except for my back which is very, very painful even as I sit here and type. By better I mean I can at least respond to your query but after this I will lie down again. I wonder if 5 more treatments is going to make that big a difference in the end. No one at this point really knows how much we should be getting. Perhaps the extreme SE we are suffering is telling us something--that we have reached our limit of tolerance for Herceptin.
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isis - Please tell you have told your onc about this. What does he/she say???0
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What both my onc and my nurse say is that they have never had a patient who described the symptoms I have. I emphasize the word never. They say most people have no side effects at all with Herceptin. Thank goodness at least Chelemybelle is in the same boat I am. It has been a rough journey but I'm trying my best to see it through. I wish, however, somewhere, someone, addressed these small percentage side effects and what causes them.0
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isis - So what are they implying, that what you are experiencing isn't real? I don't think they are helping address the issues. Herceptin hasn't been used for early breast cancer that long. There may be side effects that haven't been documented yet. I have problems with herceptin aggravating my chemo neuropathy and my onc hasn't seen that before. But from your post you seem to be having a hard time. Maybe you should seek another opinion from a medical oncologist that is different from your current doctor. Perhaps someone who specializes in breast cancer. Of note, they are doing trials now (PHARE, Persephone) to see how 6 months of herceptin compares to 12 months.0
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isis818 I don't care if what you are experiencing is a SE of Herceptin on not… something is wrong and your onc should check it out. If you onc doesn't seem to think this is a problem and you do then call your internist and see what s/he recommends. You know when something is not right. Don't let them tell you that "it's not in the book."0
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isis818- I agree with lago and omaz. Take back you life. Just because the medical staff has never had a patient with your reaction does not mean it is not real. I hit the same road blocks you did. Then I found this forum and it open my eyes. Look at all the side effects in this forum alone. There are other sites and forums I found. You did not go through surgery, chemo and radiation to let this herceptin keep you down. As you know I was supposed to have herceptin on Tues. the 30th and it was cancelled. I felt stronger today my feet did not hurt as much and my knees only hurt when climbing the stairs. I went shopping today with my daughter. I haven't done that in 2 months. I was tired when I got home but I went shopping! It is all about quality of life. This is your life your body. My onc. said 1 yr of herceptin is the normal perscription. This does not mean we all have to have a full year. I will let you know how I am doing without the herceptin. Please keep posting so I know how you are doing.0
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I had the TCH chemo regimen and my latest echo has my ejection fraction at 45, down from my initial 55 seven months ago. Herceptin was still a go today.
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