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

Re: Herceptin side effects ( quick poll)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084302/ is one example of scholar publishings.
cif
Member
Posts: 31
Registered: ‎02-05-2014

Re: Herceptin side effects ( quick poll)

Elja70, please confirm you are NOT on tamoxifin. That is NOT recommended for Her2 patients
cif
Member
Posts: 31
Registered: ‎02-05-2014

Re: Herceptin side effects ( quick poll)

[ Edited ]

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
Posts: 31
Registered: ‎02-05-2014

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
Posts: 2
Registered: ‎26-05-2017

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
Posts: 206
Registered: ‎08-10-2016

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
Posts: 1
Registered: ‎24-05-2017

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
Posts: 31
Registered: ‎02-05-2014

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
Posts: 6
Registered: ‎20-07-2016

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
Posts: 31
Registered: ‎02-05-2014

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
Posts: 779
Registered: ‎26-06-2016

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
Posts: 31
Registered: ‎02-05-2014

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
Posts: 206
Registered: ‎08-10-2016

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
Posts: 206
Registered: ‎08-10-2016

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
Posts: 2
Registered: ‎20-02-2017

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
Posts: 2
Registered: ‎20-02-2017

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
Posts: 198
Registered: ‎16-06-2016

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
Posts: 644
Registered: ‎25-06-2016

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
Posts: 198
Registered: ‎16-06-2016

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
Posts: 644
Registered: ‎25-06-2016

Re: Herceptin side effects ( quick poll)

Dear Emma

hope surgery has gone to plan

xx