CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Gma, your granddaughter and your son have the same smile! You can tell that's her Dad.
Octo, a trip to the coast sounds like a great getaway. I'm glad to hear your sister is going to a top facility. I've had relatives in rehab several times after hospitalization or injury, and it's amazing what they can do.
I saw the dermatology PA today. I elected to have two moles that I've had since I was a kid biopsied, rather than continue to watch them, along with a bump on my arm that has been worrying me. The PA wasnt too worried about any of them, but I don't want to be wishing later that I'd had them checked sooner. So now I have the wait for pathology results, which will take about a week. Tomorrow's off to the oncologist for a two month check and more blood test results. If everything is good, I may finally be able to start the AI.
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Crazies.....my toes slipped off the edge of the rabbit hole. Silly me, tried to grab something and fell in head first. That hole is very deep. Too many things going on to list. Short version....I officially have called dibs on a padded room at the inn.
I had a bit of a nervous breakdown, in a hotel room, across the country, from home. I threw away ALL my meds at 2:30 am. I want and need quality over quantity of life. The tamoxifen, Effexor, lovastatin, calcium/vitamin D, Vimovo, Ativan...all of them. I was in so much pain both mentally and physically....I hit a wall...hard. Trying to titrate off Effexor was horrific while still taking my other meds. Once they all started clearing out of my system, the withdrawal side effects subsided and disappeared. Go figure. My husband isn't exactly thrilled with my choice, but my sucidal rantings were even less thrilling.
I feel so much better and finally feel like I might have a chance to recover my brain function.
I am not setting a great example and have yet to inform my plethora of doctors, but I am at peace with my decision. They all will just have to live with it.
Love you all!
Edited to add: I am 12 pages behind on this thread. 😢
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Robin, we can be padded cell neighbors!
I had a friend who titrated off Effexor and it took three months before the withdrawal symptoms finally subsided. I can imagine mixing that with a bunch of additional meds would be rough.
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RobinLK: medication side effects are indeed a serious QOL issue--I too wanted off one of mine for exactly that reason. (thankfully MO agreed!) Keep us posted on how you're doing?
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Robin, so sorry you went down the rabbit hole, but you are not alone. I too am struggling with the QOL issue. My MO said last time I was there that if my vacation from Femara shows it is causing much of my joint pain (and I think it is) he may put me on Tamoxifen next. I really don't want that. Not convinced it would be any better than an AI, and besides, it is known to cause cataracts and the last thing I need is to make my cataracts worse...anyway, all of the choices sort of suck. well, forget the 'sort of': they all suck.
I am glad you are starting to feel a bit better, and at peace with your decisions. Still, pull up a chair on the porch. It is padded well. and as Queen says, definitely keep us posted.
xoxox
Octogirl
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Thank you my lovely crazies! ❤️
I know my doctors will be pissed but I have tried their way for 2 years. It felt like all my concerns were whispered into a fan to only blow back in my face. 2 of my meds should not have been taken together. I already had cataracts when tamoxifen was started. I am already being treated for osteoporosis so AI's are not really a good option either. I am done poisoning myself. My liver numbers are high and I have non-alcoholic fatty liver now. The only thing I was taking meds for was my cholesterol pre-BC. It wasn't even all that high. My panic attacks have dissipated and my lymphedema is under control. My hip and back pain are almost gone. My plantar fasciitis is back. I am a hot mess at the moment. I even threw away all my Ativan sprinkles! 😳 Sacrilege...I know. Thank you for lending your ears! Love to all
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...Kudos, RobinLK! I was just talking with my pain management dr, and the only pill I like, the pain pill, is the one he is trying to take me off of. You know, they really don't like you to take those, y'know, cause they actually make you feel better!!! Can't have that, no no no. So, he has me on clonidine, gabapentin, welbutrin (which he denies saying is a no no on the tamoxifen) EDITED TO SAY: he actually says its fine to mix welbutrin and tamoxifen...)meloxicam, regular strength tylenol. And robin, I also take the anti cholesterol, magnesium, vit D and biotin cause my nails are still a mess. And, every time I see the clinic notes, they say " she says pain attributed to femara" , even tho I am on tamoxifen... like they think I don't realize I am now on tamoxifen. Well it's because after quitting femara, and doing NOTHING for 4 months, those pains... the NEVER went away.
I hate it when I tell him, that women I know have had a very difficult time, for months, some times, getting off those things like effexor, then he tells me those stories are anecdotal, I say he's calling me a liar, because its not rigorously scientifically observed and quantified. But basically, i feel like he thinks I am an unreliable witness. But now, You have told me about yourself, and I believe you. But if I tell him about you, he scoffs. and at the end of the last visit, he gave me a list of meds he wants me to look up and try, effexor being at the top, for my 'hot flashes' , of which I have none. And to try quinine water for my leg cramps, of which i also don't have any...
Wow, though, I am impressed you did it in a hotel, by yourself, far from home. I was just thinking about doing that myself, just the other day. Always an option. I stopped tamoxifen on the summer solstice, a gift to my self, and I am almost done weaning myself off welbutrin, and I feel more like myself since this whole thing started. So happy for you, sister.
And I have been busy with my hands and muscles, but there is not one single hour that passes, that I don't think of one of you here, or another, or sometimes severally!
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Tomboy: I think your doc is the one who is not a reliable witness: if he can't even remember that you don't have leg spasms or hot flashes and wants you to consider stuff for them, but not stuff for the crap you do have!
Glad your hands and muscles are busy!
xox
Octogirl
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Straight from my shrink's mouth: “if you go on tamoxifen, we'll have to switch from Wellbutrin." Being 10-years post-menopausal, I went on Femara instead and can keep my Wellbutrin--the only antidepressant I've tried with no side effects and which keeps my carb-cravings anywhere close to in check. When I first had PPD, I tried a raft of tricyclics & benzos until I found that Desyrel was the only antidepressant that worked, and I weaned off that after a year and a half. Five years later, I went on Prozac after reports that it caused weight loss. (Alas, no dice). Six years after that, i went on Redux which handily combined SSRI anti-depressant and appetite-suppressant effects. Even took it in-hospital and orthopedic rehab after emergency surgery for a shattered tibia (courtesy of a space cadet in a beat-up Mercury who turned right and didn't see me in the crosswalk). Peeled 65 lbs. off me. (Lord, I miss it--the Redux, not the weight). But shortly thereafter came the reports of ventricular hypertrophy, so b'bye Redux, hello Effexor. The stuff made me nauseated and gave me nightmares. I found out its nickname was “Side-Effexor." So back I went on Prozac until we discovered Wellbutrin--which has kept me on an even keel since 1999.
I don't think anyone who's never had clinical depression with or without an anxiety overlay can quite understand what a difference--positively or negatively--psychoactive drugs can have on our lives. They can either make our lives transparently normal again or send us down the rabbit hole and into the sewers. And when it comes to pain meds--especially opioids--depending on who's doing the opining they are not simply a valuable tool for serious chronic pain, but either a wondrous panacea or the gateway to heroin. No in-between. As for “miracle" drugs that will normalize our blood lipids (but give us horrid muscle pain), AIs that accelerate the results of natural gradual estrogen deprivation, etc., we are supposed to unquestioningly take the side effects because of their lifesaving properties. Only recently has it begun to dawn on the medical profession that high cholesterol doesn't necessarily mean cardiovascular risk and that not all hormone-positive breast cancers are alike. I will take what is prescribed for me as long as the promise of delayed death outweighs the spectre of torture en route to the reaper. I had to quit Lipitor because of muscle aches. I'll stay on letrozole as long as I can handle the side effects, basically because I'm afraid of dying from mets. But you can bet that as soon as the SE's become unbearable, I will ditch those pills. (However, you can have my Dexilant for GERD, montelukast & Zyrtec for asthma & allergy, Wellbutrin, and Benicar for hypertension when you pry them from my cold, dead hands. For now).
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Robin, I don't blame you one bit. I am doing so much better on exemestane but if my MO hadn't listened to my pleas to take me off anastrozole I would have gone off on my own. I thought I was fast tracking early onset Alzheimers and felt lousy as if I had chemo. I won't take antidepressants or cholesterol meds. No thanks. You might want to take your vitamin D though. Tomboy, sorry your MO doesn't hear you or believe you. How awful for you.
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Tomboy, you have had a rough go of it, when it comes to doctors. In the past, I would have promptly fired, and have, the doctor who did not listen, or did not know what I do and do not suffer from.
I hear you on the fast track to Alzheimer's. I seriously miss my prior cognitive self. I have lost the ability to trust my memory. (False memories that feel real) I have even left the house with boiling eggs in the stove. (Hubby was home) I received the call that my new foob had arrived. (40 lb tamoxifen gain=going up 4 foob sizes.
Love you ladies, I am so grateful to have found my way out of the rabbit hole. We need to put a fence around that thing.
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Tomboy, I'd be worried if my doctor had that many details of my case wrong. Is switching docs an option? It's one thing to confuse something about similar patients occasionally, but to be that far off on several fronts - nuh-uh.
I saw the MO today and my blood work was OK, so he's starting me on Arimidex. Now I'm just waiting on my skin biopsy results.
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Ditto to everything you all said...............I went off Letrozole myself......I told the Dr I was done ....quit....no more........am I scared of mets.....hell yea, but I made a decision.......do I feel better.somewhat.....did the aches and pains go away..........NO< NO< NO>.....those bastards are here to stay.......I have no clue what it does to your body, but believe me...you never go back to feeling "good".
I felt better after surgery , 38 radiation treatments, and LE, the taking even one of those fucking devil pills............4 years............and screw it.......I'm done...........take a cholesterol drug, since 2007 after a mild heart attack........aches, pains, BP meds that make me "stupid", and dizzy and off balance...........I want my f/n life back.....wht there is left of it at 81 years old.......................
So we're not alone in this friggin battle......................and then there are the people who say "well at least you got the good cancer"..........and think..........it's over......your fine, your cured.............screw all those assholes too........including the ones in my family who try to peddle that shit to me.........I 'm done............LO
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Oh, and now I have plantar fasciitis , in addition to foot neuropathy............
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ducky, at 81 you have definitely earned the right to say what is and isn't worth it any more. At Grade 1, those 4 years of letrozole probably more than did their job and I would be shocked if you get mets.
I'm dealing with constant jaw subluxation now (annoying but not yet painful) and woke up this morning with an achy left wrist--might be carpal tunnel, might be OA but probably either one was accelerated by the AI. But since the SEs don't always go away after stopping treatment, that boat (or at least the dinghy) has sailed and I'll hang in as long as I can. (But if I get a blood clot, no thanks). Because of the stupid jaw stuff, I'll ask my dentist whether I should get that treated first before starting Zometa or Prolia--if it requires surgery I'm not gonna risk ONJ. Too early for the bone drugs to make a difference re bone-mets prevention, and I doubt whether my osteopenia will have progressed past where it is now.
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Ducky, for the planter thing, my trainer told me to roll a tennis ball back and forth with your dang foot
I got a can of balls and whenever the foot bothers me, i start with that. Dang but it does work in only a couple days
It stretches the mucle, i used to keep balls in my office, upstairs and down
Gonna see the nerurologist guy this afternoon waiting on my, blood test but want him to explain the other retports
Not sure but they say all stuff should be monitored and want to understand if he will
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How did we all get plantar fascitis???
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Up early to go get ultrasound of cancer breast. Apparently, since I am now on the one year plan and I had a mammo in dec, (No one told me, but actually they had scheduled a follow up, so I went, thats when they told me one year, but agreed to do ultrasound on this one non squishy newish (3-4 weeks, found by me) lump? I'm sure it's probably nothing, but I sure wish I could see through my own skin sometimes!
I got to talk to our sweet mayor last night, for a long time! And, I get a new cel phone today!
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in your pocket, Tomboy and Iris. I would love to have x-ray vision sometimes. It would save us these stressful scans and tests. Happy 18th birthday to my awesome Wyatt. I got an email from my insurance company last night that he needs to manage his own private medical records, lol. I'm still waiting for the court documents giving us conservatorship over him.
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Tomboy-I am in your pocket for your test! That's a rough one. Molly, don't you just love the government. I have a Schizophrenic son and I get those types of letters all the time. Ignoramuses
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Got injected wirh steroids again. PS wants to "do this right" said he is going slow and make sure scar doesn't start overgrowing. He is perfecting his technique for all his patients that have scar healing issues.
See him in September. God must be teaching me patience.
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Fraidycat, it is crazy trying to deal with entities that yesterday could talk to me about my son and today, magically, they can't!!
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Tomboy............saying a prayer for a good result......
I once in a while this pops up.....I think it's from walking in flat shoes too much, and of course the slippers when I know I'm not going out anywhere.......
Proud.....I was given an exercise on how to stretch the Achilles' tendon which is what helps to causse the probelm to begin with........but I know they say the tennis ball works too..........ugh........
Having a generally lousy day....they come often...LOL
Watching Lila tomorrow for my grandson...she is the 11month old great grandaughter...he was stuck for a sitter while they work....only 4 hours.......this is the terror, and don't tell me she looks like an angel.....she is a piece of work.
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Happy birthday to Wyatt! We had our son sign papers giving us access to any medical records and insurance info. Being a typical 18 yr old male, he was happy to not have to try and manage all of his insurance info all by himself.
Tomboy, Hoping you get good results... quickly. Waiting is miserable. I talked to our dear mayor last night, too!
Gma, In my opinion, patience is highly overrated! That said, it would be worth waiting for great results!
Ducky, Lila is beautiful! Hopefully, she won't be too much work! You make me laugh out loud with your descriptions of your grandchildren.
Hi Crazies! I love the idea of putting a fence around the rabbit hole!
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She is just adorable Ducky
This is a pic of my grandson Eli enjoying his spaghetti for breakfast yesterday.
He looks very pleased with himself. He's 11 months too.
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Thought I would share a little winter from my part of Australia. Brrrr.
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Wow, Smurfette--how far south are you?
Ducky, Lila is adorable and it’s plain to see how she could get away with murder. As to plantar fasciitis, I had it during my pregnancy, and was ordered to wear either wedgies or heeled shoes (kitten, or 1-1/2” block), and never to walk or stand barefoot except in the bath. I had this wooden roller thingy that served much the same purpose as a tennis ball. Footsmart has a variety of night braces for plantar fasciitis. The plantar fascia is one surface of the muscle of the sole, so since muscle aches can be an AI SE, that’s probably why we can get it from letrozole.
Tomboy, better make room in your pocket!
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In your pocket, Tomboy and Iris!
Smurfette, spaghetti for breakfast is my kind of food! I heartily approve of Eli's tastes. It's so weird to see a kangaroo in snow. It's like a moose at the beach.
I've had plantar fasciitis, but it was from pushing the riding mower into the garden shed. I've wised up and now ride the mower in. I'm short enough I fit, anyway.
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hmmm, spaghetti for breakfast? Count me in w
We'll had my nuero visit, we are waiting on results of blood tests but did check all my scans, happy asts they show progress and he feels they will only get better
Bummer as he is closing his practice and moving to cali
What? But will promise to follow up on my blood tests and suggesting to repeat scans in 8 weeks
My primary is able to do all that stuff so hoping all is going to work out
Nuts but while waiting for results of vit b test, eating lots of dark greens and doubling,up on vitamins
Sigh
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Smurf........Eli is a cutie pie......spaghetti for breakfast.......yum............spaghetti is good at any meal........
Snow, wow I didn't realize you guys have winter now......guess I'm clueless about other parts of the world...........now I know!!!!!!!!!!!!!!!
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