03-06-2017 12:38 AM - edited 03-06-2017 01:03 AM
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.
02-06-2017 11:44 PM
31-05-2017 09:00 PM
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.
24-05-2017 11:35 PM
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!!!
24-05-2017 07:08 PM
04-04-2017 03:31 AM
02-04-2017 04:13 PM
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
27-02-2017 02:28 PM
27-02-2017 10:34 AM
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.
25-02-2017 07:11 PM
25-02-2017 12:18 PM
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.
20-02-2017 11:40 PM
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.
20-02-2017 03:03 PM
20-02-2017 02:18 PM
18-11-2016 05:33 PM
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