Please post your two cents on Herceptin "side effects" real or perceived!

[Cif]

I cannot turn bold off, sorry. Being dosed on actual weight instead of waiting till weight dropped more than 10% from dosing calculated weight has made a huge difference such as the bloody nose and hole starting to form in the septum is now healing. I logged into this site by myself (okay, I had to follow hubby's instructions but still huge improvement for somebody that used to design and code huge world wide computer systems). Reading better, and still learning math again. Balance may take a long time as well as speech and finding correct words. Seems I'm also a whimp with tramadol, gabapentin and many others - get more confused and hallucinate with some too. I guess being a 100 pound pixy has disadvantages when it comes to meds. I lost two inches in height in seven months, so I guess soon I can try out for the remake of OZ. Although not pleased with the mental deficit, I got many replies on how to adapt. I set many timers when the oven/stove/etc is in use, and laughable when they all go off but necessary to keep tenants and house safe. The app, Calendars 5, has been a huge help.

Blessed with a smart 17 year old dog that learned to nudge me when I zone out, actually when the stove would start to smoke ... still ... smart dog. I still lose time and get confused. I found that speech improves when I take pain killers for all the concrete tendons/muscles/joints/etc. I figure calming the pain waves may help the brain function better - seems that way. I'm told to give it a couple of years before feeling the pain and/or disabilities are permanent. Based on feedback, I truly believe things will resume to me being a strong Ox again and being able to get cognative abilities back.

I did find out the GP2 vaccine did complete phase I and II with all recepients with Her2+++ not having recurrence - YAY huge break through. The bummer part is that phase III has not received funding, I believe Antigen has the ID. If ANYONE can get me access to the GP2 vaccine, please let me know. My last Herceptin is Dec 1 and to be part of the trail or for the vaccine to work you have to have just finished the one year of Herceptin.

I will work on future posts being more concise with specific hints for others. Although against the rules, I am taking supplements, but none that are known to conflict with Herceptin and only those documented to work and complement Herceptin such as Q10 with an omega 3 supplement such as MegaRed, Glucosamine (without controtin, I feel this gave great relief to joints), and there are two others - gads I miss the steel trap memory. I also got permission to take B12 and D. Needles with steroids directly into joints stopped the trigger fingers and toes, but let me tell you ... the first 24 hours are a bear ... just immobilize the joint and take something to sleep/pain for 12 hours, then expect the trigger to actually get scary worse before the shot makes things better, like 4 weeks. I went from not being able to pull up underwear without dislocating fingers to barely recalling how awful a problem things got, fingers and toes now normal again. Nobody told me I was suppose to use a dialator during chemo and Herceptin, so I had to have surgery to make a certain part usable again - I have no idea why they don't tell folks these easy preventive tips before starting chemo regardless how private and TMI it may be. Honestly, I was told six chemos would be easy peazy and back to normal physical and mental sports/hobbies/work after the sixth. I was just informed that nobody with lympth nodes removed is suppose to shovel snow, lift hay bails or anything over 5 pounds, and to never never use the forearm to hold shopping bags. I'm just wondering what are all the other things I don't know about, and is there something to read that lists these gotchas? Why is each patient having to learn all this (e.g., recreating the wheel)? I have to resume taking care of handicapped and elderly family, so if you know if I ignore that advice the risk I'm taking let me know.

For folks out there in tears and scared that the symptoms will land you in a wheel chair or bed ridden, it does start to get better, but pretty scary ride, I understand. Just don't understand how the medical staff can be so ignorant there are folks having issues and issues are real and valid. Oh, and if you can't find your car keys look in the freezer - seems to be the first place I check now. (and NO, I do not drive often or under the influence, but when I do drive I only do so without any meds and only super good days. I will not risk the lives of others to drive).

No words can articulate the appreciation and thanks I have for those that shared on this post, it is very scary to be told nobody else has issues and to buy a wheel chair. Folks like you posted during a critical time to help provide faith in recovery and healing. THANK YOU. I will post as things improve so others can get a feel for changes and timelines. Hopefully I'll also learn to be more precise and concise posting. I'm thrilled I can type with more than two pinky fingers again.