Herceptin - Quick Side Effects Poll
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Hi I finished my chemo in may and have two Herceptin treatments left. My question is do they consider Herceptin chemo. I have had two surgeries a hysterectomy and had complications on that so they had to go back in and remove adhesions. Could Herceptin slow down the healing process. I have never had problems from surgeries before. I hope someone can help me with this question.
Lynn
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I had the same question about heceptin - is it considered chemotherapy? Everyone on my onc team and the pharmacy refers to it (and tykerb) as chemo. The definition is: the use of chemical agents to treat or control disease. I guess herceptin fits that description even if it isn't as harsh as some other meds.
As for the healing...I don't think it messes with immune systems like other chemos, but each person reacts to meds differently so it might be possible that healing is slowed for you? Best of luck to you! lisa
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I had my Herception on Nov 11th and my exchange surgery on Nov 12th...my onc said that Herception is a targeted maintenance treatment - it only effects the HER2 positive receptors - unlike chemo which pretty much kills everything in its path, good or bad, that is a fast replicating cell. I have healed very nicely but like Lisa said, each of us react differently to medication/treatments.
Healing HUGS!!
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Hi Kathy (mrsrockytop...), I was told that Herceptin doesn't affect the blood like other "chemos", so, tests aren't needed before Herceptin-only txs. But, the Onc nurse said that blood tests would be done anyway, on a periodic basis - just don't know, yet, how frequent.
I just restarted Herceptin yesterday, with a triple dose, which will continue every 3 weeks for a year. At least that's what the plan is now, and is subject to change.
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I have 4 herceptin treatments left. I should finish March 16. My biggest complaint has been my joints, especially my knees. I do think that anyone who has an area of the body already injured that herceptin prolongs the recovery time. I injured my knee last Feb. when I twisted it walking on some icy sidewalks. It still has not completely healed. I had to skip one herceptin treatment back in July and those 6 weeks were the best the knee has been. I would not give up the herceptin unless I had to but I am looking forward to being done and my knees not hurting when I walk. I also have the broken nails, runny nose and hair not growing back very fast. The only doc I am see right now is onc. The rest have all got me on a 6 month or a year check-up time. It is hard to believe my next Dr appointment is not until Feb 2. Best wishes to all of you in the new year. Annette
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I am on number 12 of 18 treatments, and yes I have the runny nose, and some pain in my joints, I find drinking loads of water helps, oh and the tropical moments its like standing in the shower at times *LOL*. the only other side effect is my mugga scans have gone from 69% to 60% in 7 months but have been assured that will go back up after the treatment is finnished
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Hi,im abit worried as my echo results arent good.i started at 60 and my last results were 45.Ive only had 8 doses and am not sure what they will do now.Has any one else had this problem.
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Hi,have just read what you wrote.I too have the same problem.Ive gone from 60 to 45 after 8 doses.were you taken off hereceptin???
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If your LVEF (echo results) is below 50 you should not have Herceptin. They will probably give you a vacation and try again when it your body has had time to recover.
My onc gave me Herceptin when my LVEF was 49 and 5 weeks later I was in the hospital with life threatening congestive heart failure.
I am slowly recovering heart function but it has been a year and a half and I am not back to the normal range yet. I hope that doesn't scare you because my point is that you need to be cautious from now on but you will probably be able to start up Herceptin again soon and have no more problems if you give your heart some time now.
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I have been on herceptin (every 3 weeks) since Feb. 09 and will finish this Feb. This is after the FEC-T regimen and a mastectomy with DIEP flap reconstruction done Sept. 09. With the herceptin, I have the continuously runny nose, joint aches and pains and stiffness especially in my knees, tendonitis in both elbows and my left thumb, nails that peel and split, occasional diarrhea, and fatigue. I am working full time and have no energy for anything else. I think the nail problem from the taxotere has grown out, so now the thinning and splitting must be from the herceptin. Taxotere, which finished March 09, also made my teeth very sensitive. Now my hair has grown back, but my eyelashes grow to their normal thickness, then break off about halfway. I am trying a conditioning primer just to try to do something about it. My oncologist looked me in the eye and said that herceptin has no side effects, but she sends me for wall-motion tests anyway. My left EF went from 63% to 53% and when I started to take Coenzyme Q10, it went up to 58%. I take a lot of vitamins to try to keep ahead of the game, and last year, I read that almost all people who have conjestive heart disease that occurs normally, are deficient in Coenzyme Q10. So I thought I would give it a try. I just had another wall-motion done yesterday but will not have the results until next week. It's a good thing I have a supportive GP who gives me copies of all my test results and acknowledges the side-effects of chemo because the oncologists don't want to talk about it.
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wow bron must be hard having an onc that wont talk to you. the onc and Dr's under him are great my surgeon who has taken me through everything is fantastic doesnt hold anything back she tells me everything. I cannot praise the cancer team here in central newfoundland enough. Im glad your GP is giving you everything mine is useless he didnt even know I had breast cancer, I had to see him for something and asked if the treatment would react against the hercepitin he asked why was I taking herceptin.so I had to explain everything I had been through since oct 08. hope everything goes well.
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I feel the same way! Fatigue has gotten worse in the past few weeks. My nose bleeds on a regular basis now, and my joints just ache. When I mentioned this to my doctor, of course, the response was..."well you have been on Herceptin for almost a year now. Why would side effects just now show up?" Well, duh, maybe cumlative effects?? "I have had a little runny nose and a couple of times have felt light headed within the last month. I have lost all my energy and feel the need to sleep more than usual each night. I have achy joints and bones which seems to have gotten worse as treatment progressed. The fatigue seems worse to have gotten worse also. I have had some depression on and off. " I totally agree, and am glad to know it is not just me being a wimp!! Thank you so much for this website.
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I just completed 11 of 12 weekly treatments(I was taking it with Taxol and dexamethosone). I had to discontinue it due to lowered ejection function of heart. This also happened from the Adramycin but Herceptin lowered it even more. I am on an ace inhibitor and a beta blocker, so we will see how that works without the Herceptin until I go in on 1/28 to see cardiologist.
Side effects - feet, hand and knee pain; bloody, but no dripping nose, brittle, dry ugly nails. On day of chemo/herceptin would get extreme chills. I think some of that was attributed to the tempurature on the chemo floors.
Now I'm done with taxol and herceptin(at least for a while).
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Herceptin is a monoclonal antibody - not chemo. It can cause temporary heart issues which is why it's not given with Andriamycin which can cause permanent heart damage.
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Hi Suepen,
I have really sore knees too on herceptin. I find that soaking in a warm or hot bath loosens them up and I take NSAIDs for them too. I also have an absorbing gel "Voltaren" that is antiinflammatory. It contains diclofenac diethylamine. It takes some of the pain out of tendonitis. Gaining 30 or 40 pounds on chemo didn't help, but lying around and losing my muscles and fitness probably contributed too. My knees are a weak point for me because I have a lot of torn connective tissue there, but when I did yoga before all of this, it really helped strengthen them. I intend to resume my yoga when I get off the herceptin and my heart goes back to normal. I am hoping that most of the joint pain will go away then too. Good luck!
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Hi BronwynJulia,
I have tried Voltaren and am taking my NSAIDS but I have to face the fact I do need a half knee replacement on at least one knee. I do plan on going back to the gym after chemo where I had just started a strengthening progam - too sick to do it now.
Sue
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I am glad to hear other say that herceptin has effected their knees. It has gotten to the point where I sometimes use a cane. I have been on Herceptin since last March and when I attributed the pain to herceptin the onc thought I was crazy but let me skip one treatment and the the neuropathy from the taxol improved dramatically in those 6 weeks, I did not want to give up the benefits of herceptin and am just trying to get thru the last 4 treatments. The onc started me on Femara last Sept and by the time I had taken it for six weeks my joints were so bad I could hardly walk. I quit the femera and am not taking anything else until herceptin is done. The knee just never got any better after that. I think herceptin just keeps anything that is already inflamed continuosly irritated.
I am so ready to be done. I get leg cramps all the time. Sometimes they are so bad I ca;t keep from crying until they pass. This week is my 1 yr anniversary. Jan 15th last year they did the biopsy that was diagnosed as cancer. It has been a long year, but I am cancer free and hope to remain that way, and am thanking God that it was found early and had not spread. I am not allowed to take anti-inflamitories because I have had a bleeding ulcer. So tylenol is all I have been taking unless someone else has a suggestion. I am thinking positive that this year is going to be better and things will heal eventually when herceptin is done. Wishing all of you still on herceptin good results and few SE;s. Annette
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I've also had knee problems that got much worse on herceptin. My oncologist had me skip a cycle and sent me to a knee doctor. I got cortisone shots in both knees and I've also been going to physical therapy, which I think has helped alot. I finished herceptin in Nov. and my energy levels are coming back, so maybe I can do some swimming and yoga too!
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NanaA - you should discuss your leg cramps with your oncologist because it could be a calcium & magnesium deficiency caused by the meds. I have been on herceptin since 09/08 and get lots of muscles cramps and spasms.....just awful and painful! A daily dose of calcium and magnesium recommend by my oncologists makes them non existent. Best to you!!! lisa
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Trisha...what you're describing is apparently quite common, so they take you off Herceptin for a while and the heart generally bounces right back.
You might try to get them to check your vitamin D levels, since D and Magnesium are good for the heart and you might benefit from taking more.0 -
Had my first infusion of Herceptin yesterday, thank goodness no allergic reaction. How long does it usually take for the possible side effect to show up?
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This might sound strange, but I am happy to see that others are having side effects on herceptin. I sometimes think I am crazy 'cause the doctor keeps telling me there are no side effects on herceptin except for the serious ones like allergic reaction and/or heart problems.
I did a/c for every 3 weeks for 12 weeks, then taxol/herceptin once a week for 12 weeks and am now on herceptin only every 3 weeks for 52 weeks (16 infusions). Of the every 3 week regimen for 52 weeks, I have completed 8 of them and have 8 more to go.
On the chemo and chemo/herceptin regimens, I lost my hair, had fatigue and nausea. However, I did not have any bone/joint pain on these regimens, only some very short lived tingling in my hands and feet on occasion. I had separation on the top part of my big toe nails, but no finger nail issues.
With the exception of the first two herceptin only infusions, where I did not experience any side effects, I have had bone/joint pain in my left elbow, both hips and in my ankles and feet. The pain in my left elbow borders on the severe at times. At night, my hands swell and become very stiff (especially my left hand) and it is not until I "pump" it a few times that it gets back to normal. My doctor says these could be a result of a loss of estrogen as the chemo did put me into early menopause. However, I have talked to my general practioner and older friends who have been through menopause and they all said if these symptoms come from menopausal changes, they probably wouldn't have developed this fast.
I have fatigue and can't seem to get as much done as I used to (this the doctor says could be a lingering side effect of the chemo). My nails split and I keep them cut short and I have found that it helps to use gloves for everything to do with water, dish gloves for cleaning and latex gloves for cooking. I experience some running nose, but not to severe - but I do get occasional bloody noses. I don't feel like I have had changes in my hair, except that the regrowth has seemed to slow down. Rather than experiencing any diarrhea, I have experienced issues with constipation.
Is this information going to be used to show the doctors that perhaps there are side effects to herceptin other than the serious ones? I hope so. I will tell my doctor about this site so she can, if she wants, see for herself that there must be something to my complaints
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Hi All -
Anitakarim - Thank you for your post. I feel the same way. I am nearing the end of my year of herceptin. I will be done in March. Yay!! Thankfully I don't have the joint pain, but the fatigue just is driving me crazy. I had head pain and headaches to the point where I had to skip a couple of treatments and they went away and so did the fatigue. It felt great! And then after going back on it took two treatments before it all came back. The head pain is more manageable now and only lasts a couple of days, but the fatigue is frustrating. I have also experienced issues with constipation -- which has never happened before. It is frustrating when the onc's dismiss and say most people don't have SEs. I feel much better when they acknowledge the herceptin is the cause.
All that being said, I am so grateful for Herceptin and this will all be behind us soon and we can look to brighter futures! This is manageable and we will get through it.
Blessings to all.
Patty
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My last Herceptin was July 2009. Both big toe nails are almost grown out, after lifting off the nail beds. one finger nail is still growing out. The nails turned dark brown on my fingers and were very ugly. Some of them died and became very senstive to the touch. The big toe nails died and lifted straight up, so with permission, I cut them off. They still are very sensitive to the touch.
I recall the drippy nose, which I think was partly due to no nose hairs for a while (post chemo). At the Avon Walk last year I met a Genentech rep and she said she never heard of nail problems and gave me a pink pedometer... I got the impression that doctors and others think some of these things are "in our heads" and we should just "suck it up".
AS far as cumulative effects - after my last Taxol and Herceptin combination, I ended in the ER with hives from head to toe. You cannot tell me these are NOT side effects... Hugs, Nancy
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Taxotere and Carboplatin were my chemo drugs. Finished them 10 weeks ago and have now finished about one half of the 52 Herceptin infusions. I still have some nerve numbness in my fee and I continue to suffer from leg and foot edema. But attribute these S.E.s to the chemo drugs--not the Herceptin. Also, my hemoglobin and hermatocrit numbers are still much depressed, but my fatigue is gone. So I don't really feel like the Herceptin is causing me a problem at this point. My third LVEF monitoring in a couple of weeks will confirm or change my opinion on that.
I don't guess it wouldn't be called a side effect, but my biggest concern with Hercepitn is if I am lucky and the 'miricale' drug is working for me. I was told at the beginning of the treatments it works for about one half of the Her2+ cancers.
bird
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Hey Everyone, here's something fun to do just to take your mind off things for a few minutes. Grab the nearest novel to you, go to the "Humor and Games" Forum, and click on "Writing a New Novel." You'll might get a laugh out of this.
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I've been on Herceptin alone for about 3 months now. SE's I have noticed are severe chills the day of infusion, moderate fatigue, achiness and diarrhea for about 10 days after infusion, a drippy nose off and on most of the time, occasional severe bloody nose.....I think that's it.
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I am wondering if those of you who had reduced heart function had any other symptoms besides the results you got on the muga exams. I haven't had a 2nd muga scan (for some reason my onc is not doing it till the 6 month mark--I am right about at 5 months now) and just curious if I would know if I had any damage. I'm not having any heart symptoms, just curious if you could tell. I'm just a worry-wart!
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Has anyone had prinkly/numbing/tingling/painful skin?
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Karla - I have those symptoms on the tips of my toes, tongue and fingertips. Mine is neuropathy caused by my sessions with taxotere\carboplatin. Where are you having these sensations - all over or in a certain place?
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