62358members
328204posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Herceptin side effects ( quick poll)

237 REPLIES 237
Highlighted
cif
Member

Re: Herceptin side effects ( quick poll)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084302/ is one example of scholar publishings.
cif
Member

Re: Herceptin side effects ( quick poll)

Elja70, please confirm you are NOT on tamoxifin. That is NOT recommended for Her2 patients
cif
Member

Re: Herceptin side effects ( quick poll)

Herceptin is a piece of cake compared to other chemo.  With Herceptin at times it is like having the flu symptoms of achy.  The taxotere and carboplatin, that is harsh. My posts reflect all three together, NOT HERCEPTIN ALONE.  The 18 rounds of herceptin alone after chemo were a vacaction compared to the 6 rounds of chemo.

 

The pain is beyond what doctors and lab rats are aware. See a neurologist on your own ASAP outside of the hospital system assoc with Ono'. Get a brain MRI and cognitive assessment, this way if you get hit like me you can have medical proof of chemo brain. I went into chemo clueless and none of this advice on internet at the time, I was on canes, scooters, and wheel chair to get around by time I saw a neurologist. My Cigna insurance only covers big pharma so I could not see accupucture or homeopathy or reiki etc which is what I recommend. Keep your PCP in center of all this so they are kept informed by all doctors in your care, send them letters of your issues for the record ( if you lose ability to write and spell then use Cortana or friend to record). The miricle I'm a medicine whimp, I got stoned from half doses of gabapentin, cymbalta, or any pain killer. Anti depressants have a backdoor to relieving chemo pain and neuropathy. I do not believe in more drugs to combate drug side effects and hate drugs making me "exist" instead of "live". However, I did find that cymbalta made a HUGE improvement to the pain. I only took 1/3 of smallest capsule they make, I figured that out after quitting it several times after one dose three days go by before I knew it. But a month on 1/3 did eliminate a lot. It is HIGHLY addictive, so much so the FDA has its own term called cymbalta withdrawal, it is rough but reducing the dose by removing a couple grains at a time works. I believe FDA fined cymbalta for hiding the withdrawal symptoms from the FDA review paperwork. I had taxotere and carboplatin and herceptin. And thank GOD everyday that my docs did not put me on tamoxifen or AI at same time. Getting AI later helped prove that additional issues were from AI and not chemo. My first chemo was dec 2013 6 rounds with remaining herceptins till dec 2014. In hindsight, I should have stopped taxotere and carbo by forth round OR not worn winter shoes and clothes on scale resulting in being overdosed on all chemos until I switched doctors on chemos 7 and dosages adjusted based on naked weight. Three-five pounds dosage calculation makes big difference if your a flea sized person with known medicine sensitivity, once the new doctor agreed to dose on scale minus 3-5 pounds I started to get control of my muscle spaz arms, and I was able to start to relearn read, write, speech. The neurologist was able to provide drugs to manage pain and documented the chemo damage. I was lucky someone got neurologist involved because the Ono' say nobody ever got damaged by chemo before other than tingle in feet and hands. Without neurologist I would not have proof, I would have been alone and unsupported in anyone believing the issues real, and nobody to help get assistance to help me provide for myself and keep insurance cents I got damaged. I went from active athlete ride bike nightly and smart to relearning talk, walk, etc cook,clean. I have to learn to accept new me. Go to her2supportgroup dot com and threads in this forum if you want real scoup and solutions to issues. If you just work with your Ono you'll be convinced you are only person with issues, that you are imagining it all, you are a complaining female, and unless you are a concert violinist (the violinist is direct quote from my Ono) the damage to your hands is inconsequential. It is now 2017, I still walk on glass shards but soooooooo much better, I basically feel 120 years old and my stroke parents can out run and brain process me. However, my new Ono says had I not had the herceptin I would have never made 1.5years from diagnosis. In hindsight, had I had handled the shock of diagnosis better and taken the time to find forums ( which I did but didn't know symptoms to google to find them, I kept getting the light weight pink everything is okay do put all blind faith in an Ono sites) I would have searched for a doc that did herceptin and perjeta.

Hot empsom baths help ALOT!!!! Rinse off in shower afterwards. Amazon unix UAM-8100 helps ALOT. Tens unit with IF settings blocks pain. If you are not sleeping get melatonin 5mg, passionflower extract, and if still not sleeping get lunesta. My quak Ono never addressed sleeping issue, think a lot of brain damage came from 1.5 years of five hour naps a week. Rub aspercream all over feet, ankles, calves. Amazon wise men healing cream frankincense and myrrh.

cif
Member

Re: Herceptin side effects ( quick poll)

Herceptin is a miricle drug for her2 cancer and to a degree triple negative cancer. If being sore is your only issue than you are lucky and great candidate to continue. Your post didn't ref other drugs, but taxotere and carboplatin are ravaging. Also drugs like generic femara (name brand is okay) sounds like leterzole alone can put some folks in wheel chair from pain and sisr affect s. All these drugs are harmful, ''tis picking least if evils". My issues are so vast that I believe I would have been better doing a bucket list in instead of time in chemo. I would pick quality over quantity. Something docs don't ask or care, we are worth 100k every 21 days. So you have to be your own advocate. I was unable to find way out of a paper bag after first chemo, so bring an advocate with you that can stand up for you should they see changes too scary and journal them. If you are her2, I highly recommend herceptin and perjuda combo. I think taxtere and carbo and herceptin are outdated combo. Not a doctor, but a victim of chemo toxistiy
Member

Re: Herceptin side effects ( quick poll)

I have continuous muscle aches everywhere, this started 2 weeks after chemo and only second herceptin only injection.  I am thinking of quiting the Herceptin, trying to speak with my Oncologist to give me the options.

 

 

Member

Re: Herceptin side effects ( quick poll)

Hi Lina

You should phone your medical team...surely you have a number to phone if you have problems....no need to suffer in silence....I have found them to be very thorough and they will follow up any complaint....good luck!!!

Aine xx

Member

Re: Herceptin side effects ( quick poll)

I have terrible pain when l stand up it's like stepping on glass my heel hurts so much my knees are swollen the pain is day and night all this started after herceptin am on my 6
cif
Member

Re: Herceptin side effects ( quick poll)

Wow, I have so much to say to your post that it not possible via text. First and foremost TAMOXIFEN and HER2 do not mix. Studies indicate her2 recurrence more likely if exposed to tamoxifen than nothing at all. But my guess is you were premenopausal therefore tamoxifen one year then switch to arimdex or femara remaining 9 years. Based on studies with HER2, I'd get second opinion getting exposed to tamoxifen. The pain, is not menopause because if stop everything for a month pain greatly significantly goes away. Like night and day. Too much to say about this and doctors do NOT walk on water. You'll have to visit her2support.org and cancer- ugh cannot remember. About chemo and herceptin and AI pains. I can tell you that had I switched ono's earlier I would not have perm disability both brain and physical. There are tests to dose based on ones p450 sensitivity to drugs rather than BMI. In fact WHO is working to demand all dosing be based on drug metabolism testing by individual rather than cookie cutter one size fits all BMI. Also have the dose slightly lowered and over a much longer infusion time could have prevented permanent damage to me and quality of life. Find an Ono with healthgrades 22+ five star reviews (though I do believe these are hyped and bad ones removed, because mine were removed and only said run and seek another doctor. In my humble layman opinion, most infusion centers are doing one protocol and one dose algorithm without regard to toxicity. Based on the memo statement alone and my experience and those on various forums, seek second opinion OUTSIDE this current practice. I waited till after 6th and final chemo, and the second Ono said I acted too late and perm. It has taken me three years to relearn to walk, read, write, talk, due to toxicity. To do this forum requires help from both speech software and spouse, then cut past to here.
I'm not saying pain isn't normal, just in survivors groups post treatment nobody else experienced what you and I have. I'm convinced Ono' s were dentists that took a 40 hour course to practice Onocology after what I've learned in last three years post treatment. In hindsight my husband and I have found the dosing schedules and calculators used and in big red highlight on those calculators is says Doctors, you have been warned that this calculator is general dosing guidelines and changes to the dose, infusion duration, and duration between infusions must factor individual patient toxicity symptoms. In hindsight we can see that no adjustments were made for me and the calculator results using that day's weight were used with default infusion times (yes, we had a laptop and excel sheet and recorded every stat and dose of everything and took bloodk test results before leaving to go home. After the 6th chemo NO dose of anything was allowed without hubby checking the numbers and having them recalculate to account for weight of clothes, etc. the tensing 18 herceptins doses were calculated by us and dose by us and didn't vary by many mg but the toxicity symptoms greatly diminished and new Ono shocked how such a small change in dose had a huge impact on my symptoms, and therefore self evident that just a drop or two WAS significant. Also dr google said the saline base made a diff with some people and changed that too. Oand once we became pit bulls on dosing is when symptoms of toxicity decreased, but too late to avoid perm damage. Now consider the cautions of using Dr. Google for advice, on all my cases throughout my ordeal, dr google has saved my life from cookie cutter protocol doctor, grant it too late but saved from being worse. There are tons of experiences following chemo, lump biopsies vs sonogram vs petscan etc - I fought for sonograms before any invasive or radioactive tests, each time turned out to be fat necrosis but dr google saved me from procedures that could aggravate and spread cancer. The pain, not menopause, i know because the first year so bad we had to bail in hormone therapy because the chemo fried every muscle and tendon based in the neurologist tests. It took two years to get to point chemo induced pain livable, cymbalta helped but I had to dump 3/4 of 20 mg caplsule in trash for it to work; otherwise after one capsule I'd be zombie veggie for three to four days. Also FDA lawsuit because mfr hid info that it is very addictive. So not something I'd take daily or full dose. Imagine that I had to reduce dosage to about 5mg to avoid zombie and have some quality of life, the prescribed dose was 60. And they still refuse to comprehend there is such thing as medicine metabolism sensitivity. Even after taking 2 days to come out of routine annesticsia for mastectomy, into second year of treatment, and reconstruction, etc they finally started catching on. Fortunately my plastic surgeon agreed to use local skin numbing over the several breast recon surgeries. Now folks that didn't have issues or this experience will post how negative and unnecessary scary my posts are, I say I'm sharing factual experiences to 1) confirm others with same are not alone, 2) hopefully take dosing or other actions to avoid losing quality of life and independence, 3) research supplements that compliment chemo and herceptin effectiveness and proven to protect from perm damage (e.g. Qc10 protects chemo brain), long list of supplements that compliment. LONG LIST that will train wreck too. Find Ono that is educated on CAM. Mine I think was too lazy to learn which good and bad so had me exclude all, had I kept my good ones like qc10 from Costco I could have saved independent and intelligents. Explain to your Ono that quality of life out weighs quantity if life if you agree with that. That you rather spend five years living than five years trying to manage going grocery shopping once a month, hiring people to drive you to appointments because chemo retarded your brain and body , basically I went from Mensa smart 5k runner and athlete supermom to a 120 year old demensia struggling daily to accomplish in a couple months I could do previously on a Saturday, getting lost in my own home or unfamiliar, and having to relearn the same things over and over, reverse of ground hog day movie, in my case starting over everyday without building up knowledge. Avoiding people because if slurred speech, wrong words,fatigue, and never remeber them or recognize them unless they reintroduced themselves. The out of pocket dollars to purchase pain fighting things like UNIX UAM 8100 from Amazon for my leg and feet pain, selectCombo tens units and pads, sauves to block pain. Keep in mind, I have motocrossed, fell out of sky hang gliding, repelling you name it and never sore or injured and always walked away, superglued a split tooth to get thru college finals. I'm not a whimp, and not standing up to the Ono and being timid in uncharted waters cost me a life, and now time spent making a new one and trying to accept a new me that changes daily and unknown hour to hour if I'll be an able person or tanked. My trainer and I see that more I train the worse things get over time, almost to point that doing nothing is healthy versus getting a min of 30 min anything in. I went from 17 miles on treadmill before chemo, 3 min by chemo 6, 60 min year later, to 15 min now with heart rate and BP all over the map in rest and in exercise. SO BE YOUR ADVOCATE NOW! Stay with treatment but remind doc NOT menopause, it IS toxicity, and negotiate and record all doses, weight, blood numbers for each appt. if you are or get to where I got, someone else will have to do it because the ONLY day I could walk or be clise to human was the day before next infusion. I learned later in survivor meetings that is NOT normal. I learned later by next Ono that not normal. I learned later that thighs so weak could not support own body getting up from chair NOT normal. Find an Ono that is open minded and believes in CAM, those types more likely to be less cookie cutter cattle drive one dose infusion process fits all.
Member

Re: Herceptin side effects ( quick poll)

Hi just read your past and noticed you should have finished now as its 2nd April. I hope you are ok? 

I am in the same mind set after completing 10th herceptin and 3 weeks post radiotherapy mastectomy amd 5 rounds of chemo before I am crippled with joint pain amd my mugga scan has dropped agin so they want to put time on razoprol and carry on. But I am so wary as joint pain is do bad and onco has said same it's the menopause!! I feel like hitting him with fustration. Surely that know If we are all saying the same thing!!!  I then Jane to go on tamoxifen for 10 years!! Just wanted to share this's open it helps xx

cif
Member

Re: Herceptin side effects ( quick poll)

had over 18 of them, in my state the dose depends on initial infusion, single agent, or three weeks following last chemo is 4mg/kg, 6mg/kg, and 8mg/kg. So if you weigh 110 pounds you dose on 50 kg. So if your twelfth round it would be 50x6 or 300 mg over 30-90 minute infusion. Dosage mg depends on type cancer, number infusions, weight and other factors. One size dose fits all persons needs second opinion from another practice/office. The dose of 2,4,6,8 mg is always based on persons weight.
Community Champion

Re: Herceptin side effects ( quick poll)

cif, I can see how that might work for chemo but with the Herceptin I just get an injection and that is the same dose if you are tiny or huge (I am pretty average). My last chemo was in October and I am due herceptin number 10 later this week.

cif
Member

Re: Herceptin side effects ( quick poll)

I was heading to wheelchair from being athlete. I tracted dosage of everything, then googled dosage algorithm. I was getting too much of everything. Using naked weight determined dosage morning before eat drink on infusion day. Then challenged doctor on their dosage. Once they agreed to use my naked weight (I stripped down to prove scale with cloths added 1.5 to 3+ pounds) many symptoms went away or got better. Had I done this before 6 infusions I may not have gotten perm damage. But at least I was blessed to not have waited longer to challenge dose.
Member

Re: Herceptin side effects ( quick poll)

Me again!

Just to say that this Herceptin injection (5th not 6th) was very bad the first day - limping badly.

But I cant believe how much better I got from day 2.  Im putting it down to forcing myself to exercise every day even through the achy legs.  It really helped.  I walked for an hour - took it easy though - and kept doing things around the house.  I rested plenty as well.  It was painful to get up but it eased off when I moved around.

I do yoga, walking the dog, easy gym visits and zumba.  Im convinced this is whats helping the achy legs.

A

Member

Re: Herceptin side effects ( quick poll)

Ladies this Herceptin is not the breeze we expected is it?

My suggestion is you contact your support team at the hospital and you have to lay it on thick and say you cant cope and need help.

Mine told me to try profen (Ibuprofen) as its much better than paracetamol for achy muscles.

I was told that the SE's do diminish over the next few months.

I have found that my 6th Herceptin was bad for the first day but now has definitely eased off a good bit.

I am forcing myself to exercise every day and I think it is helping a good bit with the achy legs.

 

I had a mx and implant reconstruction at the same time.  It worked for me because I went into surgery and out again the same shape!

I was fine and after 4 days I went home.  Still quite numb after 5 months but no big problems.  Its quite a routine op nowadays.

Keep positive!

A

Member

Re: Herceptin side effects ( quick poll)

I find it really draining had six injections so far I have dreadful pain so take pain killers...then feel nauseous reckon about 3 hours a day is pain free not sure if I want to continue
Member

Re: Herceptin side effects ( quick poll)

I find it really draining had six injections so far I have dreadful pain so take pain killers...then feel nauseous reckon about 3 hours a day is pain free not sure if I want to continue
Member

Re: Herceptin side effects ( quick poll)

Hiya RunningFree. Yes I still need radiotherapy after the mx. I feel back at square one and so upset. I'm more upset by 2 lymph nodes still containing cancer after chemo! Did you have any nodes involved?
And to top off an aching arm from axcillary node clearance I'll have aching legs this weekend from herceptin injection from today x
Member

Re: Herceptin side effects ( quick poll)

Emma,so sorry you have additional surgery to worry about.

i had a no choice mx due to boob size v tumour. It was ok.

Are they talking radiotherapy??

xx

Member

Re: Herceptin side effects ( quick poll)

Hi RunningFree , unfortunately not. Devastated is an understatement. had lumpectomy performed by wire as nothing showed on mammogram or ultrasound but pathology results showed 2 lymph nodes still showed disease after all that chemo and there are microscopic cells in breast. Surgeon has now recommended a mascectomy, I'm petrified! Lumpectomy not too painful but petrified of removal of whole breast and petrified nodes were involved!!! I'm in shock as everything looked so hopeful x
Member

Re: Herceptin side effects ( quick poll)

Dear Emma

hope surgery has gone to plan

xx

cif
Member

Re: Herceptin side effects ( quick poll)

Herceptin is for her2 typically, studies show tamoxifen can cause recurrence of her2 and therefore AI inhibitors is recommended. I know makes difference if pre or post menopausal. But I came across this as well as mixing tamoxifen with things like Benadryl and other over counter sleep aids the Ono prescribed and was a surprise to the Ono of interactions. Suggest Google tamoxifen her2 and, also things that decrease tamoxifen effective.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084302/   for example

Member

Re: Herceptin side effects ( quick poll)

Wow, that will be an emotional finish of your half marathon im sure. Would you consider a course of acupuncture for the hot flushes. I've not tried yet but intend to as BCN and other women have sworn by it for hot flushes so perhaps worth a go. I was hoping to try sage tablets but BCN said not to as my c is strongly estrogen and just because a herb is natural, people think it's safe and although amazing for hot flushes, it interfers with tamoxifen. ...so I'm def going to try acupuncture once surgery done and dusted and recovered. Thank you, will be glad when surgery done and dusted and recovered. X
Member

Re: Herceptin side effects ( quick poll)

I am indeed taking tamoxifen! Started it end of April when I started herceptin.

I now have a complete intolerance to heat and suffer from appalling night sweats!!

i am a lot slower but I have found my running has kept me going, particularly when I'm out with the running group who have been great. I ran a half at the beginning of October but it was so hot I struggled. 

The one coming up is the same one I ran 3 days before my mx so it's sort of symbolic as it is a year.

 

i certainly left my running shoes off for a few weeks after my surgery, as you say see how you are in the new year

All the very best for your surgery next week

x

Member

Re: Herceptin side effects ( quick poll)

Hi RunningFree. No I haven't run since 27th May (the day of diagnosis) and couldn't face it through chemo and have surgery next week so perhaps I'll return to it in the new year. Youve obviously kept up a good level of fitness throughout treatment to be doing a half in a couple of weeks. You are obviously much further ahead with herceptin than me but that's amazing you are still carrying on despite obviously suffering side effects. Are you taking any hormone therapy such as tamoxifen also?
Member

Re: Herceptin side effects ( quick poll)

Emma, don't know if you are still running? 

My legs feel like lead for at least 48 hours after the jab. It's weird but my symptoms are less if I get a monster bruise ???

I am struggling on with the running just to spite this whole thing. Have a half marathon coming up in 2 weeks ( which will be 6 days after herceptin no.11). It certainly won't be pretty.

best wishes

Member

Re: Herceptin side effects ( quick poll)

I had my fourth herceptin last Friday. For me the only way I can describe the s/e is heavy legs. I have run several marathons and half marathons before all this malarkey and my legs feel similar to after having run in a race
Member

Re: Herceptin side effects ( quick poll)

Hi Niknak,

I am really sorry to hear about your sidwe effects. I listened to my body after two treatments & asked to stop the Onc pursuaded me to go on, I got to FOur & refused any further treatment. I am 7 yrs from my surgery & still 12mths bedore I am 7 yrs from the other treatments. I too no longer felt or feel like myself. I have a lack of association with my feelings, I am interested in how others feel long term. I don't want to feed negative in here, but I too am waiting for my "normal" to be back.

Member

Re: Herceptin side effects ( quick poll)

Hi Rebecca

i have just had herceptin 10/18 ( usual 3 weekly thing). Am a nurse, went back to work a few weeks ago.

best wishes with your treatment

x

Member

Re: Herceptin side effects ( quick poll)

Can you continue to work whils having the Herceptin treatment if you have it over 12 months? X
Member

Re: Herceptin side effects ( quick poll)

I too am on Herceptin and was on Anastrozole but hsd to change it because of the side effects joint pain and numbness in my fingers plus nearly every other side effect. Since I was changed I feel much better .Still have aches and pains but no way as bad as when I was on the Anastrozole and Hetceptin. Good luck hope you feel better soon.
Member

Re: Herceptin side effects ( quick poll)

I'm on my 13th out of 18 herceptin, diagnosed July 2015, had mastectomy to right breast ended chemo Feb 2016. I'm suffering too with continued aches in my joints as well as weakness in my hands. I'm so clumsy and find my hands just don't work properly any more, using knives etc in the kitchen really worries me as I had a accident nearly took the top off my finger!!! I also have fallen over numerous times and luckily haven't broken anything yet but my spatial awareness is really poor now. I'm also on Anastrozole, I'm wondering if my rash and nausea are to do with that or herceptin?? Whenever I see my onc she just says yes that's to be expected! So ok but I'm really worried this is going to carry on way after treatment ends. Well done all of you amazing fighters out there, this forum really helps to let off steam as I don't want to say anything to family and friends as I think they feel I should be getting over everything by now. I just don't feel like me any more. Xx

Member

Re: Herceptin side effects ( quick poll)

I think breast care is the most important thing a woman should worry about! follow http://skywritingservice.com/blog/horrible-impact-of-drugs-on-your-health and see how drugs can ruin your organism!

 

Member

Re: Herceptin side effects ( quick poll)

Hi, I'm on herceptin number 8. I too have headaches and joint pain especially the day after treatment. My fingers swell and I get arthritic pain in my fingers. I've had to remove my wedding rings they swell so much. However I'm also on anastrozole and the pharmacist says that the pain could be down to that.

Member

Re: Herceptin side effects ( quick poll)

An update since my post in Feb.  After about a month to six weeks seeing a chiropractor who used some kind of ultrsound waves and something that looked like a spoon handle that he rubbed over my shoulder, the pain went away.  Unfortunately, several weeks ago my mediport became cracked and had to be replaced.  The oncologist's office insisted that I have a Herceptin treatment immediately following the surgery.  Honestly I left the hospital and went straight to the cancer center and had a treatment.  I was fine that day and the next other than being very tired.  The third day, however, I developed severe pain in my neck and left shoulder just like before.  I even ran a low-grade fever.  The surgeon put me on antibiotics and muscle relaxers as well as pain medication, and told me to take hot showers and use a heating pad.  Needless to say I slept most of the week.  I still have pain although not as bad.  I saw the surgeon today.  The surgical site looks good and there is no swelling.  She is wondering if a nerve is pinched or my neck is out of place.  I am wondering if it's the Herceptin.

cif
Member

Re: Herceptin side effects ( quick poll)

Google Cymbalta withdrawl before taking this drug. I missed a dose and was messed up big time, then tried to quit and cannot. Based on today's research, the only way to quit without failing or serious side affects is to open the capsule and remove a bead for each day you started to quit. 60mg is about 580 beads, so consider months to years to quit this drug. It helped with the pain and life was good, then things switch to being a zombie sloth slave to the drug. Just a numb almost brain dead eating and sleeping sloth.

cif
Member

Re: Herceptin side effects ( quick poll)

Hubby says I missed the main point - your strength and endurance will increase but you need to be patient but relieved it will return. YOU ARE NOT ALONE-here is a HUG. Use this time to share love and exercise with your dog, they are with us for such a short time, use this as opportunity to be together and move and play outside together. Get neurologist and try things like gabapentin or cymbalta and other neuropathy type drugs.
cif
Member

Re: Herceptin side effects ( quick poll)

My Ono was same way so I went to a neurologist and was not ignored, my GP helped too. I'm convinced Ono's only know a set prescription using software to push chemo and clueless and ignorant of symptoms associated with their drugs. how can stopping a drug (HT), say tamoxifen or femora or anatrozole results in symptoms going away and when back on drug symptoms come back and be blamed on menopause brought on by treatment? Rhetorical. This site and the her2support forum kept me sane, had it not been for these sites I would have been alone and doctors saying my imagination or not wanting to leave medical support garbage. I struggle everyday to take, for life, drugs such tamoxifen or femora, knowing that if I stop them I'll be physically better but will get cancer back. My last herceptin was dec2014 and to make an event such as an anniversary dinner I skip taking HT drug two nights before the event in order to not have to use cane or wheel chair, and most folks have no clue at these events that I don't run a few miles a day anymore (as long as I don't interact with them and have to talk or process) All I can say is cymbalta has helped my feet hands and thumbs but only for a couple weeks, then I stop everything two nights until bearable then resume HT then intro cymbalta as things digress then repeat cycle. Here are some pain fighting things, Epsom salt baths and alternating day baking soda baths, must rinse in shower and use hydrating lotion afterward, Intensity Select Combo TENS unit and from Amazon lead splitters and pads so you can use up to eight pads at a time - I find the IF mode best to drown out pain. Also from Amazon is the UNIX Air Relax leg compression device ( I find B mode and second to last pressure setting to nearly feel like Ahhhhhh relief. Tens is around 99, the Air Relax is around 400US. I lost job during chemo and limited funds, but especially the Air relax, the relief is priceless. Also at night I rub aspercream onto feet and hands and neck, that helps. on really bad nights I fail my previous life's motto of no drug beliefs and take one methocarbenol 750, one enocet 325-5, and a phenagran suppository and go to bed with no plans to do anything the next day. Sometimes forcing exercise helps loosen things up but have found usually cascades problem. Chemo and HT somehow turns every ligament and tendon into concret. But when I'm bad and stop all the drugs for a few days I feel I can run faster than a cheeta and get caught up on things I cannot do while on HT. You will read about being patient and getting used to a NEW you, in my case that this a drastic different person. But as I watch wounded warrior and st Jude's on TV raising money I realize I need to accept my new pains and limits, strive to be as active as possible knowing that many are in worse circumstances. Oxygenated blood kills cancer cells, so strength training and excercise is critical - start goal 70 min a week to point you cannot sing or talk while working out. It took me over a year to get to point where I could pedal more than three minutes a day and two days or more for legs to be close to trying bike again - before chemo I would clock 11mph for 20 miles. In perspective April 2013 11mph 20 miles 13-14 hour work days and taking care of two households and volunteer work; April 2014 using wheelchair and handicapped from TCH and unable to read or write and relearning same things everyday such as fixing a meal; April 2015 3-6 min total on bike a week and 5 min on treadmill a week set on turtle and down days after each attempt. April 2016 40 min on treadmill 1-2 times a week, legs and balance still not strong enough for a real bike, so bike still on blocks but can get about 5-10 minutes 1x week but sadly still cannot retain what I learned day before which stopped the fights we had about hubby liking to watch reruns- now all shows are new to me each time- so now no fights. Please be patient with yourself, and please do not let ANY doctor or anyone make you feel like you should have resumed old routine and health status, just forgive them because NOBODY can have a clue what your dealing with that hadn't had to deal with it themselves. Sorry for long note the computer program hubby set up I am still learning to not conscious think what to write.
Member

Re: Herceptin side effects ( quick poll)

Hi i don't know how to talk to my onc to believe me that my body and bones ache so bad and Tylenol 3 doesn't do much good. I do water aerobics mon to Fri  and try to get out for walks with my dog but that's all I seem to be able to do. My house gets the basic cleaning and the same with my cooking. I can barely get out of my chair at night and don't usually sit at the 5 able for supper because my back hurts so much. I've been on herceptin scince Oct and tomaxafin scince Jan.  I'm tired all the time and feel like a train wreak every morning.  It takes me a couple of hours to get up and going my T3 and a coffee and lots of water with breakfast.  I hate myself now. I was the type that just bounced out of bed and was always happy and bubbles. My doc dismisses that it is the drugs his answer is that generally they are well tolerated.  I'd really like to know what that means. My chemo finished in Oct and rads on Dec 31. I'm so afraid that I'll never be myself again and not  e able to do my job in a nursing home.  I have accepted that I won't go back to work until herceptin is done only because of the time off I will need for treatment and the day after which is a right off for me. My muga scan is up 10% scince I started herceptin and my doc says that's highly unusual and good. I think it's because of the water aerobics and walking.  So there is signs that's it's doing good but I'm so tired of hurting and feeling like crap. I also get headaches that last for days like I'm in a complete fog. When will this end. 

Member

Re: Herceptin side effects ( quick poll)

My treatment of Herceptin ended in Dec of last year. And I am going through joint pain and leg pain. I think it's from the chemo treatments. I think it's the most barbaric thing man ever created. I now wish I had never done it. I have lost so much of my memory or I will totally blank out when trying to talk. Head aches also with it. I am now using hemp oil I feel better than I have in a very long time. I went through 8 rounds of chemo. And lost both my breasts. I was just informed the chemo never touched my cancer. All that suffering for nothing. After going through this I urge others to think long and hard about doing chemo. I am shortly going to start using Essica tea. Read up on Rene Cassie. It's a great article. I was also given Taxotere, Adriamycin and Cytoxan to. I have lost all feeling in my hands and feet from the chemo. Prayers to us all who are fighting this monster in side of us. 

T3D
Member

Re: Herceptin side effects ( quick poll)

Cif. Thank you so much for taking the trouble to reply I really appreciate it. I am slowly working my way through the information. I am going to speak to my oncologist later today. Thanks again warmest regards Tracey X

cif
Member

Re: Herceptin side effects ( quick poll)

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

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

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

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

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

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

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

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

Re: Herceptin side effects ( quick poll)

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

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?