Hi everyone I don't often come onto the forum now but just wondered if anyone could share their thoughts on how you feel after herceptin my last injection was new years eve we are now in to February and I feel really tired and still extremely achy I just wondered if this could be the letrozole and not the remnants from the herceptin my shoulders are so stiff at the moment I'm finding it hard to do day to day tasks maybe I need to change hormone therapy tablets I've been on them for a year now thanks ladies love judi
Kandiland, thank you for posting. I too have feared that same concern despite family stating that I'm pushing and trying too hard which is reason I get zonked. But I keep seeing these PINK commercials with folks doing 5k walks during/after chemo and other treatments. I'm struggling with pain and discomfort that results in sleepless nights and dropping things or tripping and falling alot. If I were to listen to the Ono team, they have never heard of these aspects, but the neurology team outside the hospital system has. YOU ARE NOT CRAZY OR LAZY. I used to be a dynamo and was there for everyone, I look back and cannot figure out how I did it, but pretty sure things are a matter of learning to live with a new me that will never be the old me, but I still push and pursue to a degree. Your post made me feel better and less alone, thank you. I'm still learning to talk, write, spell, perform and finish a task. I used to be highly educated, articulate, multitasking person that did everything well despite the saying nobody can multitask and do it well, I exceeded and my products and reviews and salary reflected that. Now I strive to have a household chore done without the fire department having to put out a fire due to forgetting something was started on the stove or oven. I will never figure out how these PINK 5k commercials happen, I suspect they had better doctors and everyone is confident the doctor ignored all the warning signs and dismissed my issues at a resulting great cost. Sometimes I figure this is karma from not being tolerant or patient with those that were slower or not as quality assurance oriented. During this process I have gained friendship from neighbors that understand, but I have lost nearly all friends before this because too much of a shock how different and weaker I am, I suspect makes them uncomfortable - which is okay - I'd rather not be around anyone that felt obligated or awkward around me. I feel so fragile, going from doing extreme sports like hang gliding, sking or anything to fearing if I fall my bones will shatter. I restrict hard exercise and impact workouts to within the home when someone is home, just in case. I also want to thank those in big box stores that offer to help me when I stumble or having difficulty communicating. Big problem is needing more biopsies due to recent emerging 2" lumps, and if they turn out bad, how could I possibly do chemo again and expect to come out of it more than a drooling shell of a human being if only 6 chemo's and a year of herceptin left me retarded and handicapped. I used to have 3-4 hour daily commutes, now I consider myself lucky if I'm focused and balanced enough to drive 1-4 times a month and limit distance to 30 minutes of home, typically to doctors appointment when the county transit cannot take me. In all honesty, I went from a 34 year old athletic and intelegent person to a 120 old not able to keep a house up. Ugh. In case anyone is same boat, hubby has found that the Apple watch has greatly decreased the kitchen mishaps, I cannot walk away from a timer set if still on my wrist, the trick is to not dismiss the timer until I physically turn things off. Also, you are not crazy if you have one day that you are strong/clear minded/active followed by days or weeks of a clumsy bubble head. I have not figured out the pattern, hubby says he has, he says I've lost ability and common sense to pace myself and become manic on chores on good days thus wiping myself out. My problem is I rarely can remember the prior day to say whether that was true or not. In last two weeks I've downed serrapeptase and ahcc in hopes of killing the lumps before the biopsy date, so far they have gone down by more than half , yeah. Mushrooms Rule, chemo makes you drool. Sorry, just thought of that, sorry if offended anyone.
thanks crystalbella! and EXACTLY! everyone suddenly thinks it's all over and sorted out once the chemo and op are done..and everyone expects u to be up and running catching up on the job and everything else..it's less lonely here...thanks!
Hi! It's my first post in this forum since I was diagnosed last June - im 26 and i was dx her2+, er-, pr-, stage 1, grade 3, been on carboplatin, docetaxel, pertjeta and herceptin. done with chemo and now starting radio and still on herceptin...i always feel very tired. very listless and drained. everything hurts, my muscles, my joints, all of it. is this the herceptin or chemo residues or radio or just the whole thing? it's also very hard at 26 - no one gets it out there, and no one gets it at work at all. im a research assistant, im supposed to think, be creative, and implement and publish papers and deadlines and work long hours. i can't do any of that anymore...i feel like i'm not fit and never will be. it's a very lonely and dark place. everything is too much effort...i used to be able to keep up with my life, but now i can't. i also have heart palpitations because of the herceptin maybe and it gets worse when i drink coffee.
i've complained too much!! on a positive note, things are so much better with chemo over!
Does Herceptin drop your blood count like other chemo??
I have just had a stinker of a cold and cough and the GP did some blood tests and my wbc and neutrophils are super low. Lower than they were all throughout my FEC-T treatment. I didn't think herceptin dropped our blood count so was just wondering!
I am seeing oncologist on Wednesday for my radiotherapy referral so will get the info then but thought a quick poll on here might put my mind at rest!
Hi everyone thanks for sharing your posts I find amazing it so good to come on here and you understand what everyone else is going through and know you not alone .am on herceptin for as long as it works to control the secondry cancer in my right lung am on number 26 injection and was thinking does anybody else get itchy over the body and unable to sleep .
Hi all, I am a January Gemstone from 2015 and have just had my 13/18 Herceptin, the symptoms for me seem to get worse as I progress through Herceptin. I have neck pain, chest pain, back pain, tiredness, feelings of sickness, lack of sleep and lethargy and also feelings of just weirdness really. - don't I moan!! I was hoping as I progressed the feelings would drop off but sadly seem to be going the same way as chemo and getting worse. I am back to work full time and find it a huge struggle to get through the day but I need my employers to know I am fit to do my job rather than be made medically unfit and paid off. Some days seem so tough to get through. however! I am still here, have survived a double mastectomy, chemo, radiotherapy and flipping Herceptin will not bring me to my knees so onward!! Love to all you ladies suffering similar, keep going and be strong and be powerful in your own body! Sarah 🙂 x
Hi am new to this site my name Iris. I was diagnosed breast cancer Christmas Eve 2013 after Masectomy chemo and radiotherapy and herceptin for year .nothing prepares you for the inevitable roller coaster of emotions the hair falling out tired fatigue and aching muscles . Then just as you think return to work fate dealt it's last blow secondry cancer not curable but treatable on herceptin for as long as it works for life . To shrink the cancer in now my right lung although very small no added chemo as yet .every 3 months ct scan and waiting for results is terrifying feel like I waiting for them to grow . I try stay positive but some days so tired and aching bones it hard cos live on my own and scared to sleep in case don't wake up .i have well meaning friends and family who are there for me but don't think they understand what you really go through unless like you guys on here I read some of the posts and think thank god your not the only one .been to counselling and groups that help but when I look in the mirror don't recognise my self any more no self esteem or confidence all gone .i have hope .
I can relate to looking forward to herceptin every 3 weeks. My last chemo was September 1st. I was relieved but then told I had to do the herceptin for another year. At first I was agitated and then realized as the next one was due I was a bit relieved. I still have a surgery to go and wont be assessed until tomorrow. It gives me comfort that something is still fighting cancer in my body until they get the last of the cancer out of my left breast. Then radiation. Ill do the tamoxifen and herceptin they say for a year but from what I am reading and what a couple of friends who have been through this said...it will be a few years.
I miss having hair. Even just an inch so I can go to work without a scarf or wig. I dont mind but it seems to make some people uncomfortable.
I too am a positive person but it is going on 7 months since my diagnosis and I have a long way to go.
I pray a lot.
Friends mean well but when they keep giving you atta boys on courage and such it makes it difficult to express those days when your tired, scared and lonely. I am happy to have found this site and hear what others are experinecing and able to vent.
Last herceptin was Dec 1. you are not imagining the nails, hair, or other handicapped symptoms - regardless if your medical staff says never heard of it, blah blah. Not sure if from chemo or herceptin or both, but yes nails lifting still or deep white (save yourself grief, where surgical gloves when messing with anything or you will have to wait till nails grow out to get colored gunk gone - ewe). My husband installed DRAGON onto pc to help me communicate. Either from TCH or herceptin I lost use of words, slurred speach, and regarding pain and fatigue is a daily challenge. My uncle taught me "every day is a good day" that helps me get through everyday. Just recently he added a second verse "but some days better than others". So if you also have communication issues, relearning to read/math/spelling/grammer/etc, try DRAGON, before that I could not use computer and I used to be computer guru and tech writer before BC. NOT YOUR IMAGINATION and nobody knows that better than you, regardless of other's diploma's. AND NO, it is not from forced menopause symptoms ... it is from the medicines ... period. I'm also learning that eyebrows and eyelashes can become lush then fall out every three months in a cycle - ugh - nobody gave me that heads up. Nobody told me my hair could get male pattern baldness on top of head a year from last chemo, in a fashion that hurt like it did when it fell out from chemo ... so I was thrilled my hair came back dense/thick/stunning pretty after stopping herceptin, but in last three weeks devasted to have lost 50% from the top. Once you start using rogaine you only keep your hair as long as you stay on it, so if you still have your hair, and based on the internet postings of losing hair near 1 year annv of last chemo then start using rogaine now before you lose it. I have surgeries coming up, so off tamoxifen, so maybe - hopefully - that will give hair a chance to come back ... But I know it took one year from last chemo to get 1.5 inch of hair (took off after last herceptin a couple months ago, then slowed back down when tamoxifen was introduced this year), so I'm hoping in six months I'll have hair on top of head again soon, if not, it will be easier to check for ticks. Oh, I also read sun on top of head after chemo/herceptin/tamoxifen will cause hair to fall out, so where a airy white hat to protect scalp. Now, did anyone else lose sensation in personal areas, and if yes, did you get it back and how long did it take. I still stumble alot and cannot sleep, the pain in hands, feet, legs just, ahhhhh. I'll stop now, I just want folks to know that medical field doesn't know everything, but plenty of posts on internet got me through all of this, sad others experiencing it, but comforting in a sick way knowing I'm not alone and issues are real. I hope nobody else loses time or suddenly not familiar with parts of their own home at times, or suddenly starts to fall as though some jokster bumped the back of your knees out. To sound cockey, I was a high IQ, high functioning, high dollar computer nerd, independant woman that now takes from 10am to 4:30pm to put a few greens, carrots, etc. into a vitamix blendar. Weirdly, the day after I take an Oxy (limit one per month) to get some sleep my speech is improved but only lasts through that next day, bummer. So I arrange any phone calls and insurance calls to be day after an oxy night. The worst part is family and friends always asking after I stumble if I'm okay, hopefully they will listen when I say don't ask unless I ask for help, it just gets old hearing it. Maybe why pride is a sin. So my recommendation is google Classisical Stretch by Desmond somebody. She has yoga tailored for BC folks and formulated to avoid damage. Even though every tendon and muscle in my body feels like dried concrete I work in at least 4 times a week one of her sets. This was not possible during chemos 4-6 plus 5 months due to neuropathy and pain, a HER2 forum post replied if working out hurts don't try to brave it through like I did because it made recovery take longer. Thankfully I found that post and stopped pushing myself and took several months off and have NO DOUBT it resulted in ease of symptoms, avoided longer recovery time. All the posts said to beat cancer workout through the chemo's, push push push. Thankfully I came upon a post that said - NO - STOP. So from April to December I only did a Classical Stretch set once or twice a month or as your BODY says it is okay. Once off Herceptin a month or two you can go for daily. DON'T be surprised you are your old self oneday and get chores caught up/etc. then the next few days totally feel confused and tired. You are NOT a wimp. Don't let the PINK sites and TV make you believe you should be like your old self during and after chemo and that you are a failure or loser if you don't live up to that hype. NOBODY knows you or your body or limits better than you. Yes strive to improve, but nothing is wrong if you now have a new normal with new or revised goals. Just make sure to live healthy both mentally and physially. I don't believe the medical field has dosing based on an individual's size and genetics down, so folks with hyper response or low body fat will likely get hit hard from chemo and BC regimens than those depicted on TV living life as though they only just took a kids multivitamin versus chemo.
I know that it's quite common to experience fragile nails while on Herceptin, but some of my fingernails are actually lifting off at the ends, so half my nail is white where it's detached from the nail bed. This is basically the same as what happened when I was on docetaxel, but has anyone else experienced it from Herceptin??
Hello everyone, Ive just finished my herceptin treatment yesterday. I tended to get very sore muscles especially in my neck and throat. For example today I feel as if my neck needs stretched. This will pass over the next few weeks and as I am not having anymore, please God, my health will get back to normal. I found the treatment doable especially the Herceptin, I made some very good friends, one of whom I will keep in contact with. She is a long term survivor, over eight years now and doing very well. Take care everyone.
Welcome to the forums.
As well as these discussion forums we also have a free helpline should you wish to talk to one of the staff.
The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
With best wishes
I finished iv herceptin in Oct 13. I can tell you that the side effects decrease significantly but take up to or more than 6 months. I have very little pain in my hands now and feet are back to normal. Strength has returned. Patience is the key.
I had my 8th herceptin April 14 2014 and having the leg/arm burning, tight, hanicapped issues too. Can you tell me if they go away after treatment or permanent?
I feel the same I go for my herceptin every 3 weeks and look forward to getting it done it feels as if they are looking after me xx
Hi, Look at my posts below. I was really struggling with tiredness, dizzyness and generally feeling unwell. I finished herceptin at the end of january and feel 99% better! The Herceptin was def. taking its toll.
I have had 8/18 herceptin and side effects so far:
Flaky fragile fingernails
Dry mouth and weird tongue
Fatigue, much worse for 24 hours after Herceptin
Itching to arms and legs
I know I shouldn't complain and I'm normally a very positive person, but there are the occassional days when I feel really down and fed up
I tell myself I'm nearly half way through now so I will soon be finished. The odd thing is that in a strange way I almost look forward to going to hospital every 3 weeks because I feel as though something is still being done which reassures me. Anyone else feel like that or is it just me?
Thank you for that information its nice to hear that the herceptin does work and lets hope your lady keeps thriving keep well xxx
Thank you so much I have been asking lots of people about the taste as they said they were ok that has made me much more relaxed i have also lost 3 finger nails and 1 toe nail and my nails were my pride and joy so it make me feel a bit like a freek . I am also on Exemestane I am going for a MRI scan today because they found a small bit in my spine so she is hoping the Herseptin will do its job i won't get results till 24th April and it the waiting all the time thank you and keep well xx
Yes taste was affected and certain things like lemon juice or vinegar,salad cream things like that, but that is now a lot better! I have been given herceptin for 12 months 2 more to go,in my leg now not into the vein which is much better! I am also on letrazole for 10 years!
Thank you for your reply do you mean you are having trouble with your taste I am having Herceptin for as long as it takes that is what the ong says how long have you been on Herceptin are you on any hormone tablets aswell. xx
I hav e been having Herceptin since the end of january I am 64 still get tired and I am also on a hormone tablet because i am Her2 positive and this makes all my bones ache especially in the morning but once i am up and moving its no so bad. What i wanted to ask I have a funny taste in my mouth nothing seems to taste the same anymore and there are lots of things i can't eat when I ask the chemo nurse she just says its the chemo still in your body is there anyone else having this problem.xx
I have had partial mastectomy on right breast. HER2+
3 rounds of FEC
3 rounds of Docetaxyl
20 Radiation treatments
I started Herceptin at the same time as the Docetaxyl
I DO NOT take tamoxifen
Each of the different chemo drugs caused various unpleasant symptoms to the point where I was bedridden for 70% of every day.
Most of the symptoms wore off by the time I had my radiation.
However I have now had 10 treatments of Herceptin and my bone and joint pain has built up so I am in pain all the time.
I have another 8 treatments to go.
I am 68 and know the feeling of mild arthritis but now I feel like I am 98.
I have pain 24/7 accross the back and through both shoulders, down both arrms and in both hands, and my finger joints look like knobs of ginger root.
The leg pain which used to be severe at night has eased somewhat along with my ankle pain.
Maybe we all have diiferent parts of our bodies which are affected the worst.
I am praying that the affected joints are only temporary.
I do, on the positive side, have an aquaintance, similar age, same operation, same doctor and same treatment who is now 4 years out and fine.
I wish you all well
I just wanted to add to this thread for anyone going through herceptin at the moment. I had my last dose at the end of January and am now feeling much much better. I still have odd aches but they don't consume me quite as much as before probably because I feel much better in myself: not as tired or dizzy or just generally unwell. In fact I feel great (bone pain aside-now blaming Tamoxifen for that). So hold onto that.