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Nov 29, 2017 08:11PM
I welcome you here and wish you the best of luck with your journey.
I have had a lot of experience with psychiatric medication because I have literally tried almost everything on the market in the last decade or so for my ptsd symptoms and I highly recommend seeing a neurology specialist if you do not find medication that works for you. They have some new options for symptom and active brain imaging that better demonstrate breakthrough symptoms of current medication.
I too tend to stick to older classes of drugs also because I am banned from certain classes completely after severe reactions.
I had a seizure on Chantix when trying to quit smoking and am now banned from Wellbutrin class completely because off label use does not disclose risks the same way.
I've heard great things about deoakote working wonders but wasn't right for me. I used lithium and risoeradol for 3 years but it was like living life underwater.
Fun fact about risperidol 2 mg or over for mothers of young children... it turns lactating back on and is toxic to child.
I get zofran with my weekly chemo and it really helps keep me still enough to treat because I have to surpress the urge to run away from people who want to put poison in my body. I know it's what I have to do to survive so we all have fun with it.
I am on taxol and I would NEVER recommend it to anyone! I think it should be pulled off the market because side effects were so bad my therapist documented it to report to state medical board because it scared us both so much when I turned suicidal after about my 5th treatment on it because I would never hurt myself EVER and these new dominating thoughts were NOT a part of my ptsd for over 10 years before I started taxol.
It was very frightening and my therapist was critical to helping me stay at home as we stabilize instead of needing in patient psychiatric services because of the current industry standards of care are based on outdated biased research instead of the best options in the world used by other countries that don't market drugs and healthcare services like a commodity that openly profits from failure to disclose facts about their products.
I found a nurse coordinator to help with keeping my appointment schedule invaluable to me with chemo brain I'm lucky to find the right door!
And the greatest peace of mind I found with pill management was an app that I could input exact time and dose of everything and all my doctors could check it along with my chart online so we could accurately track consumption rates, pill counts, interactions and my own sanity knowing I can check when I last took what instead of fear of not being sure and making a mistake that could land me in the hospital!
I hope some of that helps give you a few new options to ask about at your next visit and I will be praying for you!
I have my last chemo treatment next Tuesday and I am NEVER doing chemotherapy again!!!!
If I had to do it all over I would have definitely done surgery and reconstruction FIRST now that I can prove our entire family is braca 2 estrogen positive and I have other organs that have to go soon also since I am unable to have any more children and my accelerated risks with my diagnosis.
Hormone therapy meeting is post surgery in about 2 months so I will let you know if I hear anything helpful but hands down taxol is the WORST for hot flashes and I average about 10 every 24 hrs lasting anywhere from 1 to 20 min and I soak anything I am wearing in sweat every time, it's insane! I am also fairly small now, 5'7 and 125 lbs so that might make it worse but 12 years ago I was 240 lbs when I gave birth to my son and had gestational diabetes twice but after birth my body was fine and never turned in to permanent type 1 or 2.
I am still a pack of day smoker though but of all the reasons I have cancer... That's NOT it! It does raise skin failure rate on radiation treatments about 5% and every surgeon balks at increased risk factors also ultimately it is a reality that must be openly discussed to avoid complications and spare everyone quitting lectures because even quitting today does not erase enough damage in time to be anything other than the illusion of moral superiority from those lacking such an addiction and I need a position of power while treating you.
Manners are free and you would think people who spend that many years in school to have that job would know that.
I am all too happy to be instrumental in the sensitivity training programs they are creating to forever change their industry standards of care and EXACTLY who is responsible for setting such precedents will be held directly accountable for results in a much more public manner than they are currently getting away with on our dime!
I will make sure no other patients have to go through what I did because I was underestimated for lacking a formal education and still knowing about new treatments and options they didn't offer because it's not the industry standard recommendation at this time despite legal standing for cancer treatment in this state!
I will use their favorite tactic in a much more public manner, SHAME on them for taking advantage of their position for profit over patient quality of life in treatment
6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2-
7/13/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel)
9/1/2017 AC + T (Taxol)
1/8/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
1/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement