29-02-2016 07:58 PM - edited 29-02-2016 07:59 PM
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
28-02-2016 09:55 PM
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
25-02-2016 04:30 AM
24-02-2016 11:15 PM
24-02-2016 09:18 PM
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.
23-02-2016 05:49 PM
21-02-2016 02:07 AM
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?
08-02-2016 07:03 PM
08-02-2016 02:56 PM - edited 08-02-2016 02:57 PM
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
08-02-2016 07:05 AM
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?
06-02-2016 05:55 PM
06-02-2016 11:27 AM
Hi everyone I don't often come onto the forum now but just wondered if anyone could share their thoughts on how you feel after herceptin my last injection was new years eve we are now in to February and I feel really tired and still extremely achy I just wondered if this could be the letrozole and not the remnants from the herceptin my shoulders are so stiff at the moment I'm finding it hard to do day to day tasks maybe I need to change hormone therapy tablets I've been on them for a year now thanks ladies love judi
02-02-2016 03:36 PM
02-02-2016 01:04 AM
01-02-2016 11:52 PM
Kandiland, thank you for posting. I too have feared that same concern despite family stating that I'm pushing and trying too hard which is reason I get zonked. But I keep seeing these PINK commercials with folks doing 5k walks during/after chemo and other treatments. I'm struggling with pain and discomfort that results in sleepless nights and dropping things or tripping and falling alot. If I were to listen to the Ono team, they have never heard of these aspects, but the neurology team outside the hospital system has. YOU ARE NOT CRAZY OR LAZY. I used to be a dynamo and was there for everyone, I look back and cannot figure out how I did it, but pretty sure things are a matter of learning to live with a new me that will never be the old me, but I still push and pursue to a degree. Your post made me feel better and less alone, thank you. I'm still learning to talk, write, spell, perform and finish a task. I used to be highly educated, articulate, multitasking person that did everything well despite the saying nobody can multitask and do it well, I exceeded and my products and reviews and salary reflected that. Now I strive to have a household chore done without the fire department having to put out a fire due to forgetting something was started on the stove or oven. I will never figure out how these PINK 5k commercials happen, I suspect they had better doctors and everyone is confident the doctor ignored all the warning signs and dismissed my issues at a resulting great cost. Sometimes I figure this is karma from not being tolerant or patient with those that were slower or not as quality assurance oriented. During this process I have gained friendship from neighbors that understand, but I have lost nearly all friends before this because too much of a shock how different and weaker I am, I suspect makes them uncomfortable - which is okay - I'd rather not be around anyone that felt obligated or awkward around me. I feel so fragile, going from doing extreme sports like hang gliding, sking or anything to fearing if I fall my bones will shatter. I restrict hard exercise and impact workouts to within the home when someone is home, just in case. I also want to thank those in big box stores that offer to help me when I stumble or having difficulty communicating. Big problem is needing more biopsies due to recent emerging 2" lumps, and if they turn out bad, how could I possibly do chemo again and expect to come out of it more than a drooling shell of a human being if only 6 chemo's and a year of herceptin left me retarded and handicapped. I used to have 3-4 hour daily commutes, now I consider myself lucky if I'm focused and balanced enough to drive 1-4 times a month and limit distance to 30 minutes of home, typically to doctors appointment when the county transit cannot take me. In all honesty, I went from a 34 year old athletic and intelegent person to a 120 old not able to keep a house up. Ugh. In case anyone is same boat, hubby has found that the Apple watch has greatly decreased the kitchen mishaps, I cannot walk away from a timer set if still on my wrist, the trick is to not dismiss the timer until I physically turn things off. Also, you are not crazy if you have one day that you are strong/clear minded/active followed by days or weeks of a clumsy bubble head. I have not figured out the pattern, hubby says he has, he says I've lost ability and common sense to pace myself and become manic on chores on good days thus wiping myself out. My problem is I rarely can remember the prior day to say whether that was true or not. In last two weeks I've downed serrapeptase and ahcc in hopes of killing the lumps before the biopsy date, so far they have gone down by more than half , yeah. Mushrooms Rule, chemo makes you drool. Sorry, just thought of that, sorry if offended anyone.
01-02-2016 06:26 PM
28-01-2016 02:36 PM
thanks crystalbella! and EXACTLY! everyone suddenly thinks it's all over and sorted out once the chemo and op are done..and everyone expects u to be up and running catching up on the job and everything else..it's less lonely here...thanks!
28-01-2016 01:53 PM
27-01-2016 10:22 PM
Hi! It's my first post in this forum since I was diagnosed last June - im 26 and i was dx her2+, er-, pr-, stage 1, grade 3, been on carboplatin, docetaxel, pertjeta and herceptin. done with chemo and now starting radio and still on herceptin...i always feel very tired. very listless and drained. everything hurts, my muscles, my joints, all of it. is this the herceptin or chemo residues or radio or just the whole thing? it's also very hard at 26 - no one gets it out there, and no one gets it at work at all. im a research assistant, im supposed to think, be creative, and implement and publish papers and deadlines and work long hours. i can't do any of that anymore...i feel like i'm not fit and never will be. it's a very lonely and dark place. everything is too much effort...i used to be able to keep up with my life, but now i can't. i also have heart palpitations because of the herceptin maybe and it gets worse when i drink coffee.
i've complained too much!! on a positive note, things are so much better with chemo over!
25-01-2016 10:51 PM