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

Re: Herceptin side effects ( quick poll)

[ Edited ]

T3D,

You are not alone.  But I thought it was from the chemo, but things didn't improve over the remaining 13 herceptin treatments.  I can tell you they improve after treatments stop (my last one was Dec 2014 so it will take a while to bounce back).   I lose time and get lost in my own house, I 'see' things, like the upstairs as it looked in the model home 25 years ago, initially scary but able to KNOW issues from the chemicals, and  shake if off.  I am having to relearn everything, reading, talking, spelling, grammer, math, cooking, computers, pretty much everything. I was a high dollar computer geek and technical writer to document what I produced and did math in my head,  now hubby is having to teach me basic computer and pone skills, over and over again.  Finances have been removed from me because I mess them up.  He jokes, says karma for me not having patients with my Mother teaching her computer stuff.   Strangely there are odd times where everything is normal so I kick butt around the house to get things caught up, then suddenly overwelming exhaustion and nausea.  Again, you'll be fine, based on hubbies researches only one other person has such issues.  General family doctor believes it is because onocologists do not understand how to dose or treat fast metabolising persons, since I have always been a medicine whimp and have to get kiddy doses for everything including anisticia.   Also tomorrow I will not remember making this post.

 

My husband helps me with these posts, and he loaded voice software that types most of it.  Herceptin crosses the blood brain barrier, doctors say they never heard of this.  But husband has found tons of posts of others having same problem.  Lady at boob doctors waiting room asked me if I had these issues and was first time I admitted publicly - YES.  I go to a neurologist, they cannot do anything because other doctors let too much time pass from onset,  but I assure you you will be okay and can relearn.  My problem is what I learn doesn't stick so I have to constantly relearn, nobody else has had that issue so you'll be fine.  neurologist has me sing with my iphone's amazon music and my speach improved and neighbors have said so.  You can see my posts about issues with chemo, herception, tamoxifen, AI's at her2support.org  http://her2support.org/vbulletin/showthread.php?t=23696&page=34

At the end of this reply I'll cut and paste EDITED version of help I got from a member on that forum.

 

I cannot tell you the number of kitchen fires I've had.  Before BC I was an excellent cook and NEVER in over 50 years had a kitchen fire.  Husband bought me an Apple watch with the timer shortcut on the face, now when anything going on in kitchen I set the Apple Watch timer, this way if I wonder away from the kitchen out of range to hear kitchen time,r my wrist gets tapped and an alarm sounds to get me back to the stove.  I haven't emptied the well since I got this watch, I used to forget to turn faucets and hose off.  You will have to learn new ways to do things to ensure safety [as a husband sometimes you have to point out wrong things and safer way] and basically be patient with self and get adjusted to the new you, and if you just stop, think, breath and focus then it comes easier.  We are not sure being able to stay on task will ever come back, but the timer helps with things.  I know I'm not safe enough to have kids or a pet yet back in the house - not until things are not found in weird places anymore -  I'd never be able to live with myself if I put a cat in a microwave instead of the food.  Below is edited version of formation another survivor gave me

 

Hi Cif,

you need to explain that chemobrain is a brain injury and needs to be treated as such--sooner rather than later. recent paper by Debbie Ganz to demonstrate that help is needed now. If necessary, bypass your onc and go straight to a neurologist. An article about the study is here:

http://www.medicalnewstoday.com/releases/291006.php

The abstract is here:

http://onlinelibrary.wiley.com/doi/1....3769/abstract

This is the link to get the PDF:

http://onlinelibrary.wiley.com/doi/10.1002/pon.3769/pdf

But if you use this link--which is on the bottom right of that page under PatientAccess--you can create a RightsLink account and get a free copy:

https://s100.copyright.com/AppDispat...pon.3769%2Fpdf

The RightsLink account is extremely useful, because you can obtain studies at low or no cost.

The first thing you need is a neurocognitive evaluation. It's testing that takes several hours, and it's performed by a neurocognitive psychologist. After the evaluation, you'll get a report and recommendations (and referrals).

I strongly recommend that one component be speech therapy. It sounds strange, but it addresses many of the issues we face. Of course, you'll need a speech therapist who is flexible. I happened to be lucky with that--mine really worked and experimented to make speech work for me. She even did an in-service with her colleagues so they could all learn about chemobrain because she believed that a) they can treat it and b) they'll be seeing more of it. Now the entire speech department at the hospital I go to is on board.

I'm so sorry you're having these troubles. They sound so familiar, and I'm glad to be past the worst of it, even though "better" is a relative term. 
 

T3D
Member
Posts: 157
Registered: ‎11-03-2015

Re: Herceptin side effects ( quick poll)

Don't know if there's anyone that can give some help and please apologise for not having read more but I am having headaches and having problems with recalling names etc and have a problem with reading - hence why I haven't been able to read the background. I am really struggling with reading from text and tablets. I am takin herceptin but nothing else I've had chemo finished in July and finished radiotherapy in November I'm on not 11 and have 7 left to go. I hope this makes sense if not I'm sorry I have been to gp and awaiting mri but wondered if anyone else out there has had anything like it

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

Re: Herceptin side effects ( quick poll)

Nurzyrn1. I just gave you big virtual hug. Ask or seek some Doctor type that sounds like Palative. Hot Epsom salt baths without lavender (lavender estrogen antagonist) gave me relief while on herceptin. your issues are from the drug. I know because when off things then normal but when on then same problems. Only diff was the drug. Negotiated a dosage change in lieu of just quiting treatment, had them subtract 5 pounds from my weight before each dose calc and got some relief (weight of implants and clothes ). My best friend was/is something sounds like phenegran suppository but some studies say bad for breast cancer patients. Once a week I would treat myself with percset phenegran and methocarbenol to give myself a pain break. The rest of week many hot baths and spent lots money in anything that would vibrate and/or massage limbs, I found high vibration and tens units significantly blocks or masks the pain. Again, all these are not recommended for use in cancer patients. In my gut I feel acupuncture would work but not covered by insurance so don't know. The fatigue, don't push too hard, rest and listen to body needs and just like this entire post - my humble opinion is from experience is that it is the drugs. Out of desperation I bought tens unit called intensity select combo, has IF, micro, tens, EMS settings so I can pick the buzz that best masks the pain. I also use human touch Ht-reflex 2. Both very expensive but was desperate. Icy hot also sells a tens unit for back aches reusable for about $30US, I used this all almond legs feet and hands until I got real tens. I also rubbed aspercream in feet legs neck hand and got relief. Hot baths gave most relief.
Member
Posts: 1
Registered: ‎24-02-2016

Re: Herceptin side effects ( quick poll)

I was diagnosed 11/1712014 with stage 4 HERS2+ with mets to my brain,liver, bones and adrenal gland. I survived the 6 months of chemo and am now struggling to survive through Herceptin. I also have had the Drs tell me it's not the Herceptin causing the debilitating joint pain, muscle pain n weakness and severe fatigue. I don't know how women stay on long term treatment of Herceptin. I'm being told that I have to be on it every 3 weeks for the rest of my life or until my cancer begins to grow again. Does anyone have any advice on what helps the pain n fatigue?
Member
Posts: 1
Registered: ‎24-02-2016

Re: Herceptin side effects ( quick poll)

Hi crystabella

 Nail breakage is a common side effect of Herceptin, just do a searcg on the internet for herceptin side effects. Mine too are chipping away. I grease them often which seems to help somewhat. Also as far as the length is concerned, Roche, the drug manufcturer, published a study recently where they say 1 year is most beneficial, not more. 

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

Re: Herceptin side effects ( quick poll)

Yes. And it is documented cases with both herceptin and tamoxifen. Due to nearly handicapped during herceptin they waited till 2 weeks after last herceptin to introduce tamoxifen and my body pains and trigger thumbs nearly perfect. Then started tamoxifen and all issues returned and need cortisone in thumbs about 3 month intervals to keep use. One point could not touch or sleep because right arm even after port gone hurt. While I had port in there were times I was terrified I had perm damage to arm shoulder and nerves. But after about 8 months after port gone got better and a year and a half later got numbness and tingling from day port put in went away. Port removed nov 2014 and there are still times it will kick up or spot in neck feels like fat needle poking into neck for a few days but rare. Since tamoxifen can aggravate her2 on anastrozole since Jan 2016 - chemo and all surgeries were cake walk compared to how I feel and pain on 1 mg if that. But I do not tolerate any meds well including chemo, and went from athlete to using wheel chairs and canes on cancer meds. I made a decision in Jan to cut back AI to half a day and skip some days and started to resume being athlete. One week ago was told must take whole one, as of yesterday I need help standing and moving and tendons and joints feel they will snap even with the most basic and easy stretch. Most folks have no issues. Just letting you know the weird things seem to be part of the ride and some resolve in 2-4 weeks or just part of new life. If doctor tells you because of menapsuse induced by treatment tell them bull hockey. Because I feel no issues when I can no longer handle issues from cancer meds, but full on 120 years old within few short days on them. Basically from being able to do insanity type workouts to not being able to do 3 min on spin bike in easiest gear followed by no choice nap and feeling ill. Everyone I know that quit the AI because wanted quality vs quantity life has had recurrence and regret decision. But I'm still on fence, crawling to furniture to get up and pain and being in control of not being handicapped by not taking AI is too tempting. So hopefully you will be part of majority that things all smooth out shortly often port removed. This post was to let you know you are not crazy and your issue is scary and likely to go away People swear by acupuncture but not covered by my insurance or I would use that asap.
Member
Posts: 3
Registered: ‎21-02-2016

Re: Herceptin side effects ( quick poll)

I was diagnosed with Stage I, ER+, PR-, HER2+ breast cancer in June.  Did 6 rounds of chemo, 4 months of weekly Herceptin, then in Nov. Herceptin went to every 3 wks.  Started Tamoxifen in Nov. Didn't need radiation.   I've had tiredness and achiness, but about a month ago my shoulder started really hurting (opposite side of cancer, I do have a mediport on this side).  I thought I dislocated it.  At first I couldn't lift it over my head.  Had xrays, no dislocation.  Was given muscle relaxers which didn't help.  It is slowly getting better, but I'm not sure what caused it.  I had shoveled snow, but not more than usual.  Of course, I hadn't shoveled much since cancer.  Oncologist doesn't seem concerned.  His PA had told me when I first complained, that achiness is not a listed side effect of Herceptin, but if it happened again after Herceptin, then it probably is the Herceptin.  I usually feel tired, achy, and irritable for about a week after each treatment.  My chiropracter suggested that maybe Herceptin is slowing down the healing of my shoulder.  Anyone else had a similar problem?

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

Re: Herceptin side effects ( quick poll)

I did not have AI or tamoxifen during herceptin, and felt like you do including times needing mobility assistance. Last herceptin dec 2014 and still am that way. Tamoxifen made it worse. Put on anaestrolo 2016 and almost as bad as chemo and back to crawling to furniture to stand up. Reason onocologist don't know is because we're just cattle drive through. But neurology folks know. My Ono didn't know diphenhydramine negated tamoxifen effectiveness and all the med field told me to take Benadryl or over counter sleep aid to help with insomnia. Thank goodness hubby checked common drug sites and found nobody should take those if on tamoxifen. So my neurologist gave me lunesta and the sleep I finally got improved my side affects greatly including less slurred speech and less falling. SLEEP imperative to heal.
Member
Posts: 177
Registered: ‎10-12-2014

Re: Herceptin side effects ( quick poll)

[ Edited ]

Hi denyse thanks for replying I feel like I'm cracking up some days I'm either bursting in to tears or raging at my hubby poor bloke!!!! I feel about 80 most days I'm only 55 thats not old is it !!!!! I used to have loads of confidence but that seems to have diminished I'm sure its the letrozole I perhaps still have remnants of herceptin which I finished in December my shoulders seem locked some days and if it wasn't for anti inflammatory tabs I wouldn't function some days I am contemplating switching hormone therapy but then the other tablets have similar effects it's so difficult to decide I don't mean to complain but it really gets me down thank goodness for this forum been on it since diagnosis and its been invaluable love judi x

Member
Posts: 2
Registered: ‎08-02-2016

Re: Herceptin side effects ( quick poll)

Hi I have been on herceptin since Feb 2015 every three weeks. I'm down to three more and I'm also on letrozole. I have achy joints , rib pain, chronic depression, total exhaustion and spend most days in bed. I use a walking stick or wheelchair if I have to go out. My oncologist does not believe I have these problems and says it is nothing to do with the herceptin which drives me mad as I know it definitely is. I'm hoping to finish 1st April and hoping things might improve. There seems to be a lot of ladies on her reporting the same so why are our oncologists denying that these are real side effects?

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

Re: Herceptin side effects ( quick poll)

Based on reading and experience. Some folks had no impact. Others fatigued and achy 2 or more years out. Just keep stretching and resistance and do more if you can, pain means set back so careful. Impact, aerobic, anaerobic , resistance to high degree is assoc with decreased recurrence.
Member
Posts: 177
Registered: ‎10-12-2014

Re: Herceptin side effects ( quick poll)

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 

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

Re: Herceptin side effects ( quick poll)

I acted in 30's but will be 56 in couple months. Big hug. Biggest problem is getting a bucket list done, but need a travel partner and hubby decided to not retire till 80. Big hug. For a laugh picture this knowing no injury, missed toilet and ended up wedged between wall and toilet. Felt like a turtle on back. Half issue getting up would be from losing burst of energy because I would laugh.
Highlighted
Member
Posts: 4
Registered: ‎06-04-2014

Re: Herceptin side effects ( quick poll)

Wow! We are so much alike, before and after chemo except you were WAY more active and younger, I was diagnosed at 47, so I can imagine how this change is affecting you mentally. I am very clumsy, running into walls, fell and broke my ankle and when I was trying to get around on my scooter I continued to fall off that too! It was kind of funny, I hope you're smiling! But I also am scared to do anything that might make me break a bone! Thank you so much for visiting with me here. I am so glad it's not just me going through things that are making me feel less of the person I once was, but at the same time I wish you did not have to live like this. Lots of hugs and prayers for you my friend.
cif
Member
Posts: 31
Registered: ‎02-05-2014

Re: Herceptin side effects ( quick poll)

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.

Member
Posts: 4
Registered: ‎06-04-2014

Re: Herceptin side effects ( quick poll)

Your post was amazing! My last chemo was 8-09-14 and I still have terrible fatigue, muscle and joint trouble, neuropathy, etc. I am at the point to where I'm wondering if I'm just lazy! I can't stand this.
Member
Posts: 27
Registered: ‎27-01-2016

Re: Herceptin side effects ( quick poll)

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!

Member
Posts: 93
Registered: ‎16-12-2014

Re: Herceptin side effects ( quick poll)

Gcinny please dont be so hard on yourself. I too thought that after chemo id be back to my energetic bubbly self - its not happened!! I think our body and mind takes time to heal - such a big thing we have had to go through.
It may be worth trying to reduce the coffee intake. Ive just given myself a kick up the bum & the last 3wks been eating healthy & drinking green tea. Ok im not jumping around but I do feel better!
Have to say though that I think Heceptin does have a huge impact - my bones & joints ache and I do blame it for my tiredness. Hope you have mentioned the palpitations to your onc. Im on a break from Heceptin but have heard it takes time to get back to 'normal'.
Its awful to feel lonely, I have used this forum a lot when ive been down. My family have been great but after chemo I felt like everyone thought it was all sorted & the other treatment was easy. Felt like I was suddenly on my own!
Luckily there is always someone on the forum to talk to.
Take care xx
Member
Posts: 27
Registered: ‎27-01-2016

Re: Herceptin side effects ( quick poll)

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!

Member
Posts: 93
Registered: ‎16-12-2014

Re: Herceptin side effects ( quick poll)

Hi I have recently had my Heceptin put on hold as its affected my heart. 12/18. Really in the dark & waiting for another scan and appointment with a cardiologist. Have had aches & pains in my joints and problems with my nails. Mentioned it to my onc but she didn't seem to think it was the Heceptin! Feel constantly tired too bit cant sleep! So once again its the waiting game as could not get an answer of whether my treatment would continue. I had talked to nurses about the 6mth trial but my onc convinced me it would be fool hardy not to take the full 18 due to my cancer type. I'm now worried that I'm not completing it! Good to read all your comments on here.