Herceptin - Quick Side Effects Poll
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Just finished my 17th Herceptin treatment, I have had false nails for probably 25 years and never had them off, however a month or so ago the lady who was doing my nails indicated they were pulling away from the nail beds. Suggested I take them off and keep them very short, use a protein and nail fungus treatment, therefore I don't think false nails would be good. Guess we just have to wait for them to grow out. I also gained about 20 pounds, hopefully that will come off now the treatments are finished.
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Had another MUGA on Monday--6 weeks since last one due to decrease in function. EF went up to 61%--almost back where I started (65%). It had dropped to 51%. I am on a bp med (enalapril) to help and it seems to be working!
Had Herceptin #15 today and I'm a little tired as usual. Last time the tiredness lasted all weekend--hoping it doesn't this time!
Ugh! I have been gaining weight also--not sure it's the Herceptin though--need to exercise! I'm determined to weigh less next time I see my onc (in 3 months).
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I have lots of itching at the port each time I have chemo or an infusion. I was told that it would go away when on Herceptin only (since October 2010) but it is not the case. I now take a benadryl (25mg) right before and for the night and day after. I am also on anti shingles at all times since every infusion started shingles!
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Hi everyone -
I have had 3 herceptin tx of 18 (every 21 days) and last tx was herceptin alone. My SE's seem to be the all popular runny nose, sore muscles/stiffness especially in legs (although this can also be from increased exercise too), extremely dry skin on my face, and starting night of tx, my ankles and calves swell - more predominant in my left leg. It has been two weeks since my last tx and my left ankle and calf are still swollen. Onc doens't seem concerned but I am....anyone else have this swelling?
Oh yes - two MUGAs so far at 65% no change. My next one is sceduled for end of this month.
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Just finished a year of Herceptin. I have had the following SEs:
1. Dry cough w/ shortness of breath.
I'm hoping that this one is due to the Herceptin and will reverse itself. It started with TCH (as part of flu-like syndrome), got better after I finished TCH, and worsened again after a several rounds of Herceptin only.
2. Cracking/splitting fingernails and toenails.
3. Back pain (in areas I'm already prone to having soreness, though.)
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AnneMarie - Ahh great to finish up the herceptin!!!0
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Indeed! Now if I could just get rid of this weird cough and breathe normal again.
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What does your doc say about it?
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Have an appt. with onc mid month. Will talk to him about it then. Time and a few diagnostic tests will tell, I'm sure.
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I found all SEs improved about 2 months after finishing Herceptin (I finished in September 2010)... and at this point the only complaint I have is a little lingering arthritis in one knee (which may have been from the ACT). Hang in there ladies!
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I've had 6 tx of Herceptin with chemo and now 2tx of herceptin only. I'm finding my muscle stiffness is going away. I'm assuming it was from chemo. I've had 1 bloody nose so far. I also started Anastrozole March 1st and have notice no joint stiffness so far either.
I have been stretching so that might be why my muscle stiffness is getting better.
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WOW! Thought I was going crazy. I have had and still have some of these symptons. I am on herceptin every 3 weeks X 17. I am on #13 as of last week. Here are my experiences so far:
1-2: My feet peeled layers. I was still having radiation when I started herceptin. I was told it was a chemo reaction. WEIGHT Gain
5-11: nails peeling and chippping
7-present:Dry itchy rash on back, stomach and arms. Doctor gave me a cream and that helps.
12-present:fatigue,can't concentrate and irritable. ( I now yell at other drivers in my car!)
Joint pain in elbow knees,feet and the worst is in both hands. Sometiimes I get numbness in left leg from top of foot and up shin.
13- present: Loss of appetite. (Maybe I can loose some of the weight I put on in the beginning of herceptin)
I also have Celiac desease and I was concerned about calcium levels being decreased from herceptin. Reading this site tells me the acheness is a side effect of herceptin.
In the last month and a half it has been tough. I started back to work at the end of Jan.11 and am now off work again. I know this will end and will have my life back. Going to see Onc. on the 28th. Going to get him to check WBC to see if I am anemic. Could be why I am soooooooooo tired. Will keep you up to date as I head to the goal line in May, my last herceptin.
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Hi marjie,
my calves become swollen after I started running while still on Taxol+Herceptin (I really overdid it). The MUGA did not show any problems but the swelling passed as soon as I stopped running.
I decided to go really slow and only resumed the full schedule (of exercising) after finishing the Herceptin.Some other type of exercise may probably be better if your legs get swollen again. I was thinking about how hard it must be for already stressed hearth to maintain proper blood circulation in the lower extremities if you are running for the prolonged time.
It is now four months since the last Herceptin and the joint ache passed too. It was so bad I could not turn my head while driving, for example, or stand up after sitting on the floor for a while (I had to go on all four).chellemybelle - hang in there - the fatigue gets much better also (although I still feel best when napping after lunch).
Jenna
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Jenna - I have also done the 'all fours' things when getting up from the floor at times druing all this!0
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I had my 14th treatment last Thursday and have been down for the count! Diarhea, weak, and much fatigue. Has anyone else experienced this kind of trouble after having no real major complaints from the herceptin?
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It has been some time since I posted mainly because I am so tired and have no stregnth or desire to sit at the computer. I completed my 13th treatment last week and have 5 to go and frankly the only way I'm getting through this is in bed so to speak. As many as 18 hours a day usually. I just rest and sleep--too tired to read even the newspaper. My legs get swollen (I elevate them and massage them with cream); I am very depressed all the time; so tired I can hardly walk down the hall sometimes. Of course, all my symptoms feed off each other--joint pain, neuropathy in both legs up to my knees (scary). The only symptoms I don't have is nail brittleness and/or skin problems. I saw my onc but give up with him. He simply smiles at my complaints. I have to suppose this is because he knows he can't do anything about them and that the name of the game is endurance--mine. So I guess all we can do is endure and hope for the best after we're finished. I just worry about how well my body will recover from these side effects or if it ever will. My onc said not to expect to feel "normal' (if there is such a thing) for at least two years. Anyone know anything about recovery from Herceptin treatment, etc.?
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isis - I am sorry you are having a hard time! Have you considered getting a different onc? Quality of life is important. I am worried that you are in bed so many hours of the day and not feeling well. What about your primary care doctor, could they help? Maybe you need to have your herceptin infusions more slowly or maybe go to a lower dose on a weekly schedule. (((hugs)))0
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isis- I know what you mean. I am going to have #14 on Mar. 29/11. I feel the way you do. I am soooo tired and my hands, feet and legs ache. I have gone to my family doctor and she has given me pain killers. I do not know what is worse, the side effects from these pills or the pain. I also feel depressed and have no appetite. I don't go out because it is hard to turn the steering wheel in my car. Can't go for a walk because my feet are too sore. I force myself to eat to keep my strenght up. I do not know how long it takes for these side effects to go away. I have been on different sites and some people say 2 months after treatment some say longer. I thought the surgery, chemo and radiation would be the worse? Hang in there and know you are not alone.
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Chelemybelle thanks for letting me know that I'm not alone. Our symptoms are quite alike. I wonder how the myth got out there amongst the oncs that there are no side effects when taking Herceptin. Why, for example, is damage to the heart possible? What causes this? Can one of you out there explain this to me? I haven't come across any literature on the reasons for why this can, and does in some cases, happen.
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Hi everyone havent posted here for a while but i have a question has anyone heard of herceptin triggering of lymphodema. iam on herceptin three weekly but before this i was on taxol and herceptin weekly as soon as i had my first big three weekley dose i got lymphodema so i was just wondering do you think that his could have been a trigger my lymphondema nurse said she thinks there could be but there is no evidence of this
regards
anne
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bertie - I have read that herceptin can cause swelling or fluid retention - so maybe it could affect LE. I struggle with LE too, I hope it gets better for you.
Infusion time - Has anyone slowed down their infusion time for some reason and had the slower infusion time help out?
Herceptin Schedule - Also, has anyone gone from a every 3 week dose to a once a week dose because of side effects and had this change help them?
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Massive Fluid Retention and Minor Headache thus far I am 2 day out from my first TX
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Hi everyone - I haven't posted in a while, either... in response to the leg swelling, I, too, have foot and leg swelling. I have had for years, but it seems to be worse. By end-of-day, my feet, particularly, are KILLING me, partially from the swelling, partially bone pain. Had an echo a week & a half ago, everything's fine there. I'm taking HCTZ - 25mg daily, which helps with the fluid retension, but depletes my potassium, so I'm taking 100meq. of potassium daily to counteract that.
I am doing Herceptin weekly - my Onc. allowed my the choice of mega-dose every 3 weeks, or smaller dose weekly. Since I tolerated the Herceptin-only doses in between the TCH treatments, I opted to stay on a weekly schedule rather than every 3 weeks. I feel absolutely fine, except for the leg swelling and foot pain - although that may be unrelated since I've dealt with it before. All this to say, I think the weekly dose has been a good choice.
AND I am wig-free except for Sunday morning church! I wear a hat because my hair is still shorter and thinner than I feel comfortable with, but I can do the ball cap okay, and I have lots of different colors. Eyelashes are at about half-length, eyebrows are thin, but noticable again, the Chemo-brain fog has lifted...Two weeks to go before I'm through with radiation and I'm ready for the BEACH!!! LIFE IS GOOD!!
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Hi bbryant - Good to hear from you things are going along well! Beach time is coming!0
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isis- I found this site http://www.breastcancer.org/treatment/targeted_therapies/herceptin/side_effects.jsp I found this informative.
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I will not be starting my herceptin treatment until April. I am petrified of this drug. Everyone on my dads side of the family died from a heart attack, cardiac arrest, etc. This includes my dad, my grandmother, all my uncles, my 59 year old brother had a heart attack last year. I told the doctors of my fear and they just shake their head and say not to worry......that it's a safe drug and I'll be monitored. My treatment plan is every 3 weeks for a year starting with my Taxol treatment. I am thinking to telling my doctor I don't want to start herceptin until my taxol treatment is over with. What do you think?
Does anyone else who is taking herceptin have bad hearts run in their family. If so, have you had heart problems with this drug?
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countrywoman - Usually they do either a muga or echo before you start, then when you finish chemo then every 3 months until you are done. I just had my third today. My first ejection fraction was 73%, then 55-60%. I am very curious to see what it is now! I agree that it is scary but it seems to really help with survival for HER2+ women.0
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I don't think taxol with herceptin increases the possibliltiy of heart damage--it is the adriamycin cocktail regimen that they worry about.
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Oh definitely the flu like symptoms after a treatment, usually only that evening. But unfortunately I did develope a small heart murmur, no biggy, but still it wasn't there before.
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weety - I think that is correct, it's the adriamycin+herceptin that can be a problem.0
