Member
Posts: 105
Registered: ‎01-05-2015

Re: Herceptin side effects ( quick poll)

Hi guys...its been quite some time since last posted on here.
IDC, HER2+, ER+..stage&grade 2, neg lymph nodes...finished chemo 1st Sept '15..subsequently had 5 ops following failed mammoplasty leaving me with a non healing wound...24 weeks post chemo and had 7Herceptin injs.
Now investigating auto inmune isdues and had Herceptin stopped as could be the underlying factor for poor wound healing! Had steange pustular like rash also associated...? Cause. Awaiting immunology review and results of skin biopsis but would be interesting to know if others have had similar problems. Bloods show immunology problem which ive not had previously. Doubt i would restart Herceptin now due to these issues.
Community Champion
Posts: 590
Registered: ‎07-10-2015

Re: Herceptin side effects ( quick poll)

The paperwork I got for herceptin said it could impact immunity but the impression I got from onc was that it was no way near as bad as chemo as he said I could go back to work which I cant at present as chemo and working in a healthcare environment dont mix but he is 100% I can go back on herceptin. How long ago did you finish chemo? I know it can take a while for blood counts to come back up and can be up to 6 months for normal. If you have not long since finished chemo then that may be the answer they were low already the the cold has kicked in

Jen x
Member
Posts: 48
Registered: ‎16-07-2015

Re: Herceptin side effects ( quick poll)

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!

Clare

Member
Posts: 3
Registered: ‎30-12-2015

Re: Herceptin side effects ( quick poll)

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 .

Member
Posts: 115
Registered: ‎06-01-2015

Re: Herceptin side effects ( quick poll)

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 Smiley Happy x

cif
Member
Posts: 31
Registered: ‎02-05-2014

Re: Herceptin side effects ( quick poll)

I gave you a virtual hug, if I had energy I would swoop you up and we could see a movie together or something. You and I started journey same month, difference is you articulate things better than I can. Although it states a risk to cancer patients, I bought a tens unit to help with the pain, also very long hot Epsom salt baths. Sleep is important, I caved in and use half of eszopiclone (blue butterfly commercial sleep aid), and half 5mg melatonin. Since getting more sleep my side effects have greatly decreased, plus melatonin is a known cancer fighter. As well as button mushrooms and asprin. Don't let the docs tell you pain is your imagination and due to forced menopause symptoms. It is the meds, I know because I took a month off due to side effects and huge relief, getting ready to restart AI's this week again, and wear hair net in kitchen, ugh. You are not alone, thank you for posting. Wish I could find someone to travel to national parks with that understands like you do. Please sleep, it made 90% difference.
Member
Posts: 3
Registered: ‎30-12-2015

Re: Herceptin side effects ( quick poll)

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 . 

Member
Posts: 1
Registered: ‎28-11-2015

Re: Herceptin side effects ( quick poll)

Hello. I am new to this so please bear with me. In January 2015, I was diagnosed with bilateral Breast cancer, 3 tumours in all, one ER +ve, 2 x Her2 pos, as well as uterine sarcoma. Had robotic hyster, 2 weeks later, bilateral mastectomies and 5 weeks after that, docetaxol / Herceptin. I am on the herceptin now until next year some time. I had a bit of a meltdown about Letrozole causing permanent baldness, so am now on tamoxifen. At some point during the year I stopped waking up and thinking about dying. The fear is overwhelming and all consuming, but it is also an individual process. I now am looking forward to completing the herceptin and living a little. The fatigue, muscle and bone pains etc have all been quite draining, but I feel there is an end in sight, please God. Stay strong and make sure you enjoy each day. Any of us could go out the door and be hit by a bus. Just because we have cancer doesn't mean it's what will kill us. My hair was incredibly slow to grow, but I now have a reasonable cover of very grey hair, and I had my first trim the other day. Yippee. I think that upset me more than anything. I just hate looking like a cancer patient. People mean well, but it is hard to know what to say sometimes.
Community Champion
Posts: 417
Registered: ‎31-07-2015

Re: Herceptin side effects ( quick poll)

 
Member
Posts: 1
Registered: ‎14-10-2015

Re: Herceptin side effects ( quick poll)

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.

cif
Member
Posts: 31
Registered: ‎02-05-2014

Re: Herceptin side effects ( quick poll)

You asked yourself that during each phase of this weird journey and you made it, you will this too. I finished Dec 1, body and brain took it worst than majority of population. You are in a phase where your doctors say you are cured, but the internet and PINK sites say there is NO cure. What you CAN do is stay and live healthy and set small achievable goals to keep looking forward. I'm where you are now, yes scary, but nothing you can do but have faith there are folks just like you 8+years out and typically if the nasty comes back it typically doesn't grow fast enough to be an issue between your new longer spanning appointments. Check yourself once a month (more often can make you become used to something being there, God forbid, and not notice as readily a change). Don't let any doctor brush a concern off and stand your ground when you have a concern. LIMIT CT's and ask for alternative scans when needed. Always ask for less invasive alternatives for testing, I had to fight for an MRCP over their wanting to do an ERCP, one being a type of MRI, the later being a dangerous invasive scope procedure and the MRCP shows more as well as safer. Get a good primary doctor, one with an endocrine expertise and willing to spend more than 15 minutes with you. You are now going to be switching to your primary for more visits, and your calls to the Ono will soon turn into, what did your primary say? You are NOT alone, yes it is scary, but you got this far which means you are strong and can meet each phase of these challenges. You just got a virtual hug because sadly I know how you feel. Live for now, worry later
cif
Member
Posts: 31
Registered: ‎02-05-2014

Re: Herceptin side effects ( quick poll)

yes gets better. yes can result in a new normal or you can return to old normal. Medical staff and Herceptin manufacturer will convince you that you are only one, you are NOT. Regarless, I'm sure months after your last Herceptin you WILL get an improvement.
cif
Member
Posts: 31
Registered: ‎02-05-2014

Re: Herceptin side effects ( quick poll)

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.

Member
Posts: 3
Registered: ‎07-05-2015

Re: Herceptin side effects ( quick poll)

Thought my nails were at bit strange! Done5/18. Also get a sore throat and aching joints. But as some one else mentioned, I feel safer seeing someone every 3 weeks. How will we Learn to live with it?
Community Champion
Posts: 509
Registered: ‎27-10-2014

Re: Herceptin side effects ( quick poll)

Absolutely! My nails are the same as yours. However it's quite difficulties know which is causing what as have only had five injection of Herceptin but three of those were given alongside Doxetaxel. I have been rubbing cuticle nail oil twice a day and that has helped to moisten and strengthen them -not made a difference to the inhale lifting. Am hoping it will make them grow quicker so it grows out.....fingers crossed xxx
M-J
Member
Posts: 6
Registered: ‎22-07-2014

Re: Herceptin side effects ( quick poll)

Hi,

 

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??

Member
Posts: 104
Registered: ‎26-03-2014

Re: Herceptin side effects ( quick poll)

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.

Member
Posts: 3,842
Registered: ‎01-05-2012

Re: Herceptin side effects ( quick poll)

Hello Jkpenna

 

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

June, moderator

Member
Posts: 1
Registered: ‎19-08-2014

Re: Herceptin side effects ( quick poll)

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.

cif
Member
Posts: 31
Registered: ‎02-05-2014

Re: Herceptin side effects ( quick poll)

pixie,

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?