Herceptin - Quick Side Effects Poll
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My treatments: Age 39 .... 3 A/Cs, then 12 weekly Abraxane+Herceptin+ALWAYS 50mg of benadryl [in hospital, overnight for observation, crash cart at the door for safety after many anaphylaxis episodes due to white blood cell builders & last AC treatment] After 12th treatment, I've continued with an Aromatase Inhibitor [first it was Femara, now Arimidex], Herceptin, and Zometa [I had bone mets from the beginning].
I started Herceptin (with Abraxane for first 12) in May 2006. I always receive Herceptin over a 90 minute (or more) period whether it is a one week, two week, or a three week dose. I always have 50mg of Benadryl at least 45 minutes prior to receiving the Herceptin. This (and the hospital stays) is "ordered" by my attending allergist. He had to clear me for getting my herceptin in my oncologist's office. THank God my specialists worked together. By the way ... my oncology center here in FL does not have the machines that control the time of infusion. The nurses use the old "count the drips" and measure the time. One infusion of Herceptin a few weeks ago, they miscalculated and gave me my dose in less than 60 minutes. I had an allergic reaction that day (throat closing off) and needed additional meds to control it.
That said ... some of my side effects:
Swollen hands and feet: I went from a foot size of 10 AAAA (SUPER skinny) to now a 9 or 9.5 Medium ("normal" width). What we believe ... the Femara and now Arimidex causes joint pain/muscle stiffness - that probably "shrunk" my foot because my arches are now higher than they used to be. The Herceptin - rarely causes swelling in extremities. My hands ... I waited one year after the AC & Abraxane and my hands never reduced. Both hands went up a ring size - before my lymphedema started. By the way, my lymphedema is only on my surgery side & we caught it early so it's under control. All you ladies with removed lymph nodes ... get a baseline measurement BEFORE you think there might be an issue! Thank God ... I can now by "normal" shoes in store and now don't have to special order my 10 AAAA shoes anymore. What a treat!
Fatigue: It keeps getting worse, but it will be four years in May (2010). Yes, I believe in cumulative effects. I'm not sure exercise is helping me any, but I will continue to try. I noted where someone said you need to be careful with aerobic exercise. Thank God I'm still truck'in.
Sinus: I have severe allergies so ... can't tell if related to Herceptin. Thank God for allergy meds!
Sense of Smell: I haven't seen anyone mention this. I know the "chemos" [AC treatments] there were smells that bothered me. But as I have continued Herceptin now for almost four years ... I still have a lot of issues with smoke (cigarette in particular). I swear the intensity is 50 fold. But, thank God I can still smell.
Chills: Until I read this site, I didn't realize that it could be the Herceptin, but yes ... I vacillate between them and bad hot flashes (chemo induced, and now kept in menopause by AIs). But yes, I do get chills more often directly after my Herceptin treatments. Hummmm
Blood Counts: The only time my white cells seem to measure within the "normal" range (low end of it) seems to be when I get sick (like a head cold or sinus infection). My oncologists have speculated that it could be due to AC damaging the bone marrow and may take years before it rebounds. Maybe it's the Herceptin? My Red counts ... Hemoglobin has never reached 13 and is usually below 12. Overall volume of red cells ... usually low. Thank God I haven't been dangerously low since the AC.
Yellow film on tongue: It starts gaining momentum within the first few minutes of the Herceptin infusion. It covers my whole tongue. It subsides and is mostly gone ... right before my next infusion starts. Very bad taste in mouth and breath smells. My dear husband can even "smell" the Herceptin on my breath. My teeth have noticeably yellowed (my dentist told me), but thank God, I still have them.
Lack of appetite / weird food tastes: I learned early on with the AC to just eat what was on my plate. Fresh strawberries do NOT taste right! Some times stomach gets upset if I have milk chocolate within the first week of Herceptin treatments. Thank God I can still eat.
Nails: I have kept my acrylic fingernails (even when I was going bald and with a mask to the beauty shop when my white cells were too low), but yes, I can tell a difference. My fingernail beds seem to be more sensitive also. My toe nails are thin, break off, and some are now split vertically from the end to the nail bed cuticle. Thank God I still have them.
Dry mouth, thirsty: I don't know why, but I seem to be rather thirsty - especially the first week after a Herceptin infusion. Probably a great reaction ... to keep me drinking the fluids I need.
Weight Gain: I'm comforted to hear that it's just not me. I figured it was the AIs (what I call my anti-hormone pills). My only positive here is that I've gotten a couple of cute new outfits. A girl has to have one or two!
Muscle, Bone, Joint pain: Now who's to say what is causing this. I know the AIs cause it. That is why I was removed from Femara. My ankles were actually "ratching" and could not move smoothly. I felt as is I was in my nineties (I just turned 40 at that time). The Arimidex isn't as bad for me. I have degenerative disc disease in my lower neck and between my shoulder blades which causes pain. My PET/CT/Bone scans last August 2009 now show "moderate" arthritis in my sacrum (? tail bone area) and lower spine. That's a lot of pain too. But, I still wake up everyday and am enjoying life for the most part
Stomach issues: After taking so much ibuprofen for the muscle pain ... I got gastritis. I now have Nexium and take Zantac when I need to. I put lemon juice in my water ... even though lemon juice itself is acidic, when digested it actually has an alkaline effect on the body
Neuopathy: I am told that the numbness and tingling I have down both arms (underside) and always (constant) in my pinky and ring fingers is due to the degenerative disc disease in my lower neck. Some times my whole right arm goes numb, some times just my whole hand. I've been noticing that I've been dropping a lot of things lately. The jar of minced garlic that shattered New Year's Eve ... it was almost out of date anyway
Muscle Spasms: Been having some, but most prominently & consistently in my mid back, left side (opposite of my bc in the right breast - I note that because of what another said). Yes, I know about potassium and take supplements. There was a note on an Arimidex thread that suggested Arimidex may cause those. Hummm
Okay, that's about all I can remember at this point ... and I'm pretty tired.
Love ... because life is too short for anything else,
Tami
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Chainsawz:
My question was for a friend I am trying to help. I am a personal survivor of breast cancer, but was fortunate enough to not have to undergo any chemo or radiation. My friend has had major chemo and now is on herceptin alone and feeling miserable. The numbing/tingling/pain started out in her hands and feet and now is down her back and the back of her legs. The neuropathy makes sense.....nerve pain is awful. I guess my question would be -- is the neuropathy from major chemo permanent or does it go away? I'd love to be able to tell her that this too shall pass. She does not have the best medical, as her husband is a disabled vet and she is having to go to a state veteran hospital for her treatment. The bedside manner of the doctors that have treated her are not the most congenial and she often feels like she is left in the dark. I've tried to do some of my own research on her behalf, and help her find some answers.
Thank you.
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Karla
I had chemo and radiation at the end of 2008 (finishing the radiation in mid-November). I continued on with the Herceptin until July 20, 2009. The neuropathy I had was an overall "many bee stings all over my body" type of effect that seemed worse whenever I was warm. There was a period of about 4 months when it was terrible - with "attacks" 20+ times a day lasting 5-10 minutes. I am happy to report that the neuropathy is slowly subsiding. Six months post Herceptin and I very rarely feel it - maybe once every few days. Definitely managable. Tell your friend to hang in there - soon it may be a distant memory!
Gina
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Anyone have dizziness while on herceptin alone? I had it during chemo, too, but just assumed it was the chemo drugs. Now I'm not so sure.
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Hi weety911 - I have dizziness on Herceptin alone. It's not severe and doesn't hold me back from anything, but enough to just be annoying. It comes and goes and is not constant. Usually lasts a few days and then gets better -- until the next treatment.
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After being declared cancer free I recently had a follow-up PET on December 14th which showed a small spot lit up. Thinking it was a recurrence the rad onc went over the scan with me as well as the previous scans. We found that it was not a recurrence but actually a part of the origional diagnosis that was so small it didnt register on any of the previous PETS. But looking back to the first one I ever had it was there, a small smudge. The treatment was decided on as 30 days of radiation plus using herceptin.
I had used herceptin before without much side effects at all. This time however I am experiencing terrible headaches. They can only berelieved by taking tylenol or something prescribed. The headache is there every morning when I wake up. My most recent scans (bone & the PETitself) showed no hot spots in the head area at all. Has anyone had a headache like this before? I dont know if it is the herceptin or possibly the radiation itself. The spot they are treating is in the sternum area. Please can someone shed some light on this. I have done only seven herceptin treatments so far and had 18 days of radiation. Thanks, John
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johnpa40 - Yes, I have had issues with headaches and Herceptin. They got so bad I had to stop the Herceptin treatment for a couple of rounds. Once I did that, they went away and I went back on the treatments again. They tend to only be on one side of my head. I still get them slightly, but not like I was. I don't know if my body has just adjusted to it or what. I only have 2 treatments left. Wishing you the best. Patty
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johnpa40 - Regarding Herceptin and Headaches. I have always been a headache sufferer. Before my diagnosis, I would get occasional tension headaches. While receiving TC+Herceptin and then after receiving only Herceptin treatment, I have had very bad headaches upon waking, too. Excedrin Migraine works well for me. I have other SEs, but nothing like the headaches.
An onco friend advised me that the reason for some to have bad headaches is that Heceptin suppresses estrogen, the estrogen changes can bring on headaches in many. When I began treatment, I was advised that headaches are a common SE of Herceptin treatment. In fact, upon reading your posting, I reviewed a chart of Herceptin SEs and headaches is top of the list.
Hope this helps and that you are headache- and worry-free soon.
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I have been on Herceptin for six years (clinical trial) and have not had a runny nose at all. I have infusions once every three weeks and the only major side effect I have is absolute fatigue for the next 24-36 hours. I have trouble staying awake. By noon the day after, I am in good shape to resume my life. I did have joint pain, however I don't know if it was the Herceptin or the Femara. I take Vitamin D for that pain and it is much better. My muga score went down a little, but is still within the acceptable range. That is checked every six months. I have lots of pain in my lower back from disc problems (prior to BC) and this might be worse with Herceptin. I also have terrible nails which break off all the time. Minor inconvenience when compared to chemotherapy. Chronic lympedema in right arm, but that was aggravated by radiation on the right axilla, which was prior to Herceptin treatment. I have developed neuropathy in my feet and sometimes in my fingertips. Lyrica has provided much relief. I still have it, but can get along if I make sure the Lyrica is taken on a regular basis. My feet do swell after walking and then I have to stay off of them for a day. NED since July 2006. Life is good!
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Hi: I received TCH from 5/13/09 till 8/26/09. Then Herceptin alone from 9/16/09 (every three weeks). My last Herceptin should be May 2010 (I think - unless ONC gets results of study that says continued Herceptin is beneficial). I know my nail fungus and spliting fingernails are a result of the chemo. But, I'm having terrible itching on my back, neck, stomach, arms, and legs. Little itchy bumps keep popping up in those areas. It is driving me crazy. I had a mild case of this all through my chemo, but now it is worse. Also have a left side sinus/nose scab problem. Still have some dry eye (watery eyes) but not as bad as when I was on chemo. Does anyone else have these problems?
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I did 6 TCH and then Herceptin only every three weeks for a year. I had nausea and vomiting, runny nose and felt flu like for about two days, when I was doing Hercepin only. I am one year+ out of treatment and my hair is growing, nails are still very dry, no nose hair and it still drips all of the time
I'm not sure if all of the leftover's are from the Taxotere, Carboplatin or Herceptin. I also had severe mood swings
and thenand I am however getting in my post treatment a day at a time. 0 -
I have my last Herceptin infusion on 3/5/10. The last 4 treatments have had the worst side effects for me. Chills, fatigue, runny nose but the worst is I have constant pain in my urinary tract. I am literally living on AZO (over the counter pain reliever) I dont have an infection. I was diagnosed years ago with interstitial cystitis and had managed it with diet. I think that the Herceptin has made it so bad at this point that I dont go anywhere without the AZO. It got so bad when I was have Taxol/Herceptin that there was so much blood in my urine that it took my counts down to 8. My Drs say I am unusual but BOTH Herceptin and Arimidex have UTI's as a side effect. Also have the weight gain in my waist. Didnt have it like this even when I was pregnant and I have not gained more than 5 lbs. Been on Weight Watchers for 5 months and have not lost a lb. Cant wait for the last treatment and to get this port out.
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I started Herceptin November 6, 2009, at three week intervals. I am getting Herceptin only- no chemo-since I had a toxic reaction to Taxotere (my blood pressure dropped to 62 over 22). I mostly notice that my body aches more than usual (my shoulders sound creaky when I rotate them, like I am getting arthritis-and my left shoulder injury from last October is taking a long time to heal). I see that someone mentioned "twitchy eye", and yes, I've noticed that too. My nails are fine, I'm not losing hair, my husband says I look more pale shortly after treatment, and I am careful to go to bed early if I'm tired. My oncologist wants me to schedule mastectomy (I found the 1.2 cm tumor April 2009 and the docs wanted to get going with chemo and surgery....I decided to try chemo first to see if the tumor would shrink and it disappeared in three weeks after my first round of Herceptin Nov. 6, 2009), but I am not convinced that mastectomy is the route to go-even though this is standard of care for HER2, IDC, Stage 1, Grade 3, ER-PR-.
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I had the same tingling in feet and hands 2 months following chemo but while continuing Herceptin. It does get better. Only first thing in the morning for me now. That was most likely the taxotere, my oncologist says. The only lasting effects I notice from the Herceptin (I finished 2 months ago) is the runny nose. No other effects.
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I am so glad to hear others have had aching in the legs and stiffness in hip. I have been on Herceptin since June 1, 2009 and this is the first time the leg aches have started. Wasn't sure what was causing them. Now I know its the Herceptin and not something else.
Thanks
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Just wanted to say I was having terrible headaches on the Herceptin. So I read on these forums to have them run it over 1 hr. instead of 1/2 hr. My onco. said it wouldn't matter. Well, it did matter. I run it over 1 hr. every time now & have not had a problem with the headaches. Still got slow hair growth & splitting nail, but I can deal with that.........Tanya
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Breast cancer diagnosis in 2000, Estrogen Neg, HR-, Lumpectomy, 9 of 11 nodes showed activity. Did 8 rounds of chemo, 4 A/C, 4 Taxol, followed by 6 weeks of radiation.
Mets diagnosed in my sternum, January of 2007.
I was on Herceptin from February 2007 through April of 2009. Showed NED, so we stopped. PET in July showed activity in my lungs, increased in October and Increased in January, so went back on Herceptin on the 19th of February. Will go every 4 weeks til it stops working and we try something else.
First time through the most irritating thing was that my nails were soft and split all the time. Wish I had known about this board. The doctor hadn't heard of that as a side effect.
After Friday's infusion, I had the chills and flu-like symptoms all weekend. Woke up with mouth sores this morning. Have been waking up with very dry mouth anyway. Was taking Femara til October, then switched to Aromasin.
Today I just don't feel good, heartburn type of feeling, upset stomach. Hope this doesn't continue.
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Also meant to say that when the cancer went to bone mets, it was ER+/PR+, HR2+.
Sneaky devil.
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I have just started with Herceptin only. I thought this Blog was for Herceptin only info! I will be having 16 days of Radiation sometime starting in March. So far with only 1 treatment, I feel great. The only side effect was all over tingling & unsteadiness during the treatment. In fact, I feel more energized that usual. Well, all of your info is wonderful to hear, but a little frightening! My first Herceptin was on 2-16-2010, and I am hoping to feel strong throughout the treatments of every 3 weeks. My cancer was small calcifications, with no lymph node involvement. But I am her2 positive. Both my Sister and my Mom had cancer about 20 years ago. I am been religious about having Mammograms! for many years.
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Hi Julesjuke,
I have this set up to receive emails on this thread, but otherwise do not go into the site too often. When I was in active treatment, I was a real regular. As you can tell by all the posts, everyone reacts differently to the disease and to the treatments. For me, I was like you - no node involvement but here in Canada they do not give Herceptin without chemo, so I had surgery (lumpectomy) followed by chemo and radiation, then Herceptin starting with the 3rd session of chemo and continuing on every three weeks for a year. I finished Herceptin in July 2009 and am well at this time. I did fine on Herceptin alone. I did make sure I did not let my heartbeat go too high with exercise - switched from running to walking - to make sure I could continue taking all the Herceptin treatments without having my MUGA scan indicate any loss of cardiac function. I had the drippy nose, but not much fatigue at all. I did have a sore hip, but found out since then that it's really my osteoarthritis kicking in. I had really dry eyes and now have to put in drops for the next year - not sure if that was from any treatment though, as my mother also has this (but no cancer).
My radiation was 20 treatments and not bad at all. Just remember to put on the cream they give you (or tell you to buy) to keep the irritation down. I also found it better to go without a bra if you can get away with it. I wore layers a lot during radiation (in Canada it was winter then). Radiation is supposed to make you tired, but I was okay. 16-20 sessions are the lowest they give, so maybe that's why I didn't get too tired with my 20.
If you have any questions, feel free to send me a private message. Good Luck!
Gina
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Now on 3 wkly Herceptin after 6 mos of chemo and wkly Herceptin for twelve cycles. Side effects include mild headaches(once in a while), joint pain, swollen ankles, feet and hands (symptom of chemo or Herceptin??) and occasional pain in ovaries and at sight of lumpectomy. I finish 3 wkly Herceptin in November.
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I went in for my 2nd Muga Scan right before my 5th Chemo tx, which was about 3 months after the 1st Muga scan. My Onc told me my numbers came down, the Herceptin has started to affect my heart, and put me on Lopressor (a beta blocker) to protect my heart. I am taking half a pill in the morning and the other half in the afternoon. My last chemo tx will be in 2 weeks and then I will be given Herceptin every 3 wks, instead of weekly. Since the dosage will be tripled, I'm wondering how that will affect my heart? Is there permanent damage or do the numbers go back up after Herceptin. Questions to ask my Onc. Any one out there with this same situation?
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Bethany, I did see Dr. Glen Leupnitz of Lone Star Oncology in Austin, and he is great! Highly recommend seeing him if you haven't. He's a nutritional oncologist and a research geek. Very knowledgeable. He's on Hwy. 183 not far from the Arboretum.
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CinCan, my first MUGA after herceptin caused my heart output to go down to 50. But after prayer and another MUGA a few weeks later, my heart output increased to over my baseline output. My radiologist said to be sure to eat red meat a few times the week before the MUGA test to be sure you have enough red blood cells to mark; otherwise it looks like you don't have enough output. So I haven't gone on heart meds, and my output has stayed high. I will continue herceptin until October. As soon as you stop herceptin, your heart goes back to normal. If someone has heart trouble during their treatment, they sometimes stop herceptin for a while and let your heart get back to normal, then start the herceptin again. So your heart problems should stop once you get off herceptin.
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I seem to have different symptoms every time. Had my 11th treatment this week - so 6 to go. Can now sum up the side effects by saying I definately have less stamina for a new days after the treatment. Not constantly tired, just have less stamina and get tired earlier at night. Have it on a Monday and by the Friday am back to high-energy normal.
The worst side-effect was the really bad taste in my mouth but luckily only had that from the moment by 10th treatmnent ended and then inconsistently for the following three weeks.
Have muscle pain. Spams in my legs three times now. Otherwise muscles feel sore. Considering I exercise, albeit moderately, but go to gym for 40-45 minutes three times a week plus do yoga once a week and tai chi once a week, the pain is unusual. But not serious.
Often get ulcers in my mouth but the oncology centre tells me that is not possible. Similarly they tell me that the fact I kept dropping things was also unrelated - my cellphone seemed to fly into the toilet bowl by itself, the same with a jar which just fell out my hands in the kitchen, and the 'block' in the yoga class which luckily did not fall onto my foot but hit the floor. Also my hair - as opposed to my head - has been sore on top but not aware of any thinning of my hair.
I am grateful to be having it though and just want it to keep in keeping the cancer away. But do have these niggly problems. Oh and on the day I have it, go home afterwards and don't go out that night as mostly, but not always, feel spaced out as with chemo although it is not as intense.
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CinCan - I have had to stop herceptin with a low ejection fraction on my echo. I got herceptin for 12 weeks every week with Taxol and then the immediate week after that alone and then once every 3 weeks for 3 months and then my ejection fraction stopped (which was in January). I had to have heart scan, treadmill test, and heart cath as there was a black shadow showing on my heart on echo and heart scan. They are calling it weak muscle and I am on an ACE inhibitor, beta blocker and Coumadin until next echo in April so you are not alone. I seemed to be fine on the herceptin when I got it weekly with Taxol but then once it was every 3 weeks (I would assume at a higher dose) it didn't take long and my ejection fraction was down to half of what it was supposed to be.
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Gilli- I hear you about the bad taste in your mouth. I can tell as soon as they hook up the bag - ICK! I have found that if I drink cranberry juice with lots of ice during my infusion the taste isn't so bad.
The other side effect that I get is the chills. I have them super bad the night of the infusion and the next day! My poor hubby, I keep turning the heat up in the house!! LOL. Thinking that the chills won't be so bad once its summer and 90+ degrees!
-Sher
ps. Ooohhh how could I FORGET the runny nose!!! I'm starting to feel like a little old lady with tissues tucked everywhere!!
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Bestillandlisten - thanks for your reply post, it made me feel better.
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Blondie45 - thank you for your reply post. I've only had 2 Muga Scans, 3 months apart. They've never given me an echo. When they start me on the 3 week dosage, I am going ask them to keep a closer eye on my heart and hopefully not wait for another 3 months before I get another Muga Scan. Did you feel any different when your numbers came down? Is there any additional SE's that I should be aware of that signal there may be a problem? I don't feel any different... I assume the tiredness and body aches is from the chemo and Herceptin.
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I finished 6 rounds of TCH every 3 weeks in late May 09, continued on with 3-weekly herceptin only, which I finished 5 weeks ago (late January '10).
I was so interested to hear from Gina_M about her experience of those itchy and stinging episodes on the skin when warm. I too had this on my back whenever I was out for a walk in the sun. It really was painful.I tried to describe this to my husband but he just looked baffled. They seem to have stopped now.
Generally, after the TCH, which I found very difficult and had lots of problems with, treatment with herceptin only was relatively easy.
I did have a drippy nose and running eyes (the running eyes were attributed to Taxotere), hip aches and problems with my nails - ridged and lifting at the corners.
The worst issue for me is my hair: after all this time it is only about 1.5 inches on top and VERY thin (you can see my scalp shining through). I have a few eyebrow hairs, which I can feel but not see (they are colourless). My eyebrows fell out about a month after my last TCH treatment. My eyelashes are still really short.
Did anyone find that their hair sorted itself out after finishing herceptin.
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