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.
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.
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!!!
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, 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.
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.
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.
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??
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
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
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.
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.
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
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
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!
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.
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.
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.
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.
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.
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
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
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
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.
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?
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
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?