Steroids vs. Tamoxifen

Well, I often refer to "tamoxirage" as one would refer to "roidrage". I don't know how much worse steroids would be, if at all, but they sure do have fewer side effects. And really, none that will kill me. The liver stuff, heck, I'd cut down on my drinky-poos.

Let's just hypothetically say that I decided to somehow convince an oncologist that I should be prescribed steroids instead of tamoxifen.

Perhaps I'd grow a penis. That would be fascinating. And, I could tuck it, as we've all learned from Silence of the Lambs.

Body hair? Well, I've had much of it lazered off. I wouldn't be opposed to more treatments, or just a handy razor. Or a Nair Bath.

Pimples on the back? Poor hubby will have to become my aesthetician. But hey, I think somewhere in our vows there was a promise of excising back pimples if my spouse goes on steroids.

The anger? Yeah, got that already.

Weight gain? I have stated numerous times that this tamoxifen is going to make me anorexic just to try and maintain a normal weight.

And bonus? Maybe I could become a female body builder!!!

I'll have to practice painting on that fake orange tan, but hey - maybe these nice girls can help. You go, Girls!

Now, do I actually think my oncologist would ok my use of anabolic steroids in lieu of the "Highly tested and highly suicidal Tamoxifen"? Probably not. Would she prescribe the steroids? I'm guessing no. Will another doc? Who knows. I kind of joked about this in the beginning but in the back of my mind thought it was more feasible than this stuff that basically would age me 50 years (who knew it would work so fast - what a *miracle drug*!!!) Maybe I can find a shady doc who believes that the patient actually comes first, and that fixed-by-drug-company-case-studies can bite me.

And yes, I'm being silly with my photos. But, I'm serious in my thinking. Seems that steroids would block enough estrogen to create a penis AND stop the cancer. Duh. I'd rather have a penis than watch my bones turn to dust.

Sick

Woke up with a massive sore throat and no voice. My girl was sick the past two days, but I'm the person who rarely gets sick. I am in so much pain and misery! I really have been feeling like my immune system is shot - took extra vitamin D and what not. Just want to curl up in a ball and call it quits. The aches, ironically, are about the same as before. But with everything else - more tortuous. I blame tamoxifen for my current misery. Each cough feels like someone is shoving a porcupine down my throat. Clearly, that is not awesome. 

Tamoxifen, you are a whore.

Folks warn other folks about the dangers of researching on the internet.

Fuck them.

The following quotes are from this link. I have not corrected any grammar or spelling mishaps, no matter how tempting.

-I've been on it for approximately 3 1/2 months and am having: memory loss, bouts of confusion, unable to verbalize things that are so clear in a conversation or things that I see but just can find a word for it such as apple, car, Walmart etc.., of course hot flashes, lite to moderate vertigo, pain in my right calf but lately more in the left, a very uncomfortable feeling in my throat, headaches around my eyes moving up to my forehead and around and the list goes on.

-Hi everyone,i also experience this symtoms,i am on Tamoxifen for 10months,first i thought it was from chemo and rads but have has no propblems,2 months after taking Tamoxifen my chemobrain start.Well on Friday they will pull out all my teeth loose and full of infection

-I started out with Aromatose inhibitors and had depression and joint pain. I switched to tamoxifen about 2+ years ago and it was better; except within the last 9 months or so I've started having anxiety, headaches, making terrible and costly decisions, forgetting words (I have a big vocabulary), hot flashes and feeling sorta crazy and unable to cope. My headaches and anxiety in my stomach and chest make new life changes hard to handle.

- I have never had teeth problems and after being on tamoxifen for 3 years I have had surgery for receding gums and now have a cracked tooth with a filling that fell out - I don't get it and it seems to me it could be another side effect of tamoxifen.

-My teeth was fine no problems after 9months taking tamoxifen my teeth problems start. loose teeth then when my dentist pull them out full of infection and i also have has nasel drip of this teeth problem.After pulling out all my teeth my nasel drip stops.Tamoxifen have a lot of side effects and every one of us are different,it kill the cancer but is hard on our body,so i think you can blame Tamoxifen for immune system disorders,anyway in my case,while taking tamox i do take calcuim,magnesium and salt tabs and some vitamins.My oncon doc blame my teeth my dentist so sweet said no it is from all the anticancer meds.

-I have been on tamoxifen now for nearly 4 years and the side affects that you have listed I get them all sometimes my body aches that much it reduces me to tears 

-this is my 6th year on tamoxifen, my immune system is crapp, i get easily infected with wot ever is out there.

-Hi, yes I too have memory problems. There is something with this drug that causes trouble with your teeth and or your jaw. As soon as my Docs heard that I was having trouble with my teeth they immediately took me off the drug. 

- I have noticed that I too have pains in my gum or at the root of my teeth. I'm still sometimes foggy, can't sleep or sometimes really tired and notice that if I don't take the meds on time my whole body schedule is off. I can say that I now have vaginal irritation that drives me nuts. Got creams and meds for that too.. I do have pain in my jaw at the joint here and there.

-Shortly after I started taking it, I started to have svere hot flashes, memory lost and a host of other symptoms., but the memory lost is the worse. It's hard to focus and concentrate on anything. Sometimes I'll hear or say something and forget it as soon as I say it or hear it. It's starting to affect my job and my life. When I was taking the Tamoxifen, I left home to go to my doctor and when I got to the stop sign at the end of my road and couldn't remember where I was and where I was going! I sit there having a panic attack, gripping the steering wheel. I had to calm myself down, and just started to drive. It finally came to me where I was and where I was going. So now when it happens, I just drive until it comes to me. It's effecting my job and everything else in my life! I also recently developed chronic inflammation and i refuse to take another medication for that. I am a vegetarian and a health food and exercise nut! My oncologist confirmed that the Tamoxifen caused that too.

-I have been taking tamoxifen for 4 years now and my oncologist is talking of offering it to me for another 5 years. But I am concerned as my teeth and nails are becoming brittle and breaking. I have always cared well for my teeth and attend the dentist regularly but fear that eventually I will have no teeth left!

-Over the course of the last 13 years (I was on Tamoxifin for 5 years), I have battled with osteoporosis of my jaw and, next Wed., will have my last 7 teeth out and will have full dentures at 61 y/o. No health insurance anymore, no dental insurance. VERY costly dental work to try and save my teeth...thousands of $$$. 

-I was prescribed Tamoxifen. After I started taking it my nails (which has been long and strong all my life), hair and teeth started breaking. The panic attacks were the worse. My memory is shot and I fear that I may loose my job because of it. I can't remember anything from one moment to the next. I constantly get lost when I'm out doing errands and such. But now I don't panic, I just keep driving and try hard to remember and eventually it comes to me or I give up and go home. Oh and thank God for spell checks. I also carry note pads with me so I can jot down things I need to know. I've done a lot of research and reading about memory loss and it's completely change my life. 

-I'm 2 yrs into Tamoxifen...I do yoga every day for the generalized aching....BUT....my vision and my teeth have turned against me!
I keep having to get stronger prescriptions for glasses each year and my teeth....Which I have never had problems with, suddenly need 2 crowns???
4 months ago they were fine?? What gives??
Aside from all the other **** we have to deal with regarding breast cancer, this was the LAST thing I needed!
I'm sooooo upset!
Are we the only ones with teeth involvement??
At first I thought it was my dentist trying to make more money....Now I'm just confused and looking at a HUGE dental bill!!

-Nope. I as well have major teeth problems....I have had nearly all my teeth filled and then twice and sometimes 3 times..he now says they have heavy decay...I had no idea that teeth problems were part of tamoxifen's side effects. I am 46. And been on it for 3 years now.

So, in addition to everything else (my f'd immune system brought me to that page - my jaw KILLS me and I'm very concerned about my teeth, now more than ever!) I don't care about my nails, except for the whole "being healthy" thing. Tamoxifen is a whore.

Well, that didn't go as I had hoped it would.

Acupuncture this morning. Awesome. Listening to waves and seagulls, the magic needles did their work as I closed my eyes and... tried to keep my anxiety down about my oncology appointment that was up next. I did ok. Really.

To the blood draw. My Vampire of the Day was not funny. I mean, no sense of humor. I like funny, damnit. But, he drew my blood. Like, 30 gallons or so.

I staggered to oncology, weak from blood loss and no caffeine - hubs brewed a coffee for me as I sat and waited. Nurse Smelly took us in for my weight, blood pressure and shit. I told her to take off about 40 for my rain boots, but I think she subtracted 2. Very nice, but hard to breathe around her. Don't you think that a person who works in health care should be careful to be clean? Especially around cancer patients? Shit. I'm not even doing chemo and I was about to hurl at her smell. One of the weird things since radiation - intense sense of smell. It's like I have a superpower, but it's not great, because it either makes me hungry or nauseous. I'd prefer being able to shoot lasers from my (blurry) eyes, or maybe knives coming out of my feet (Edward Scissor Toes? Wolverine needs a pedi?) But there I am, insanely sensitive sense of smell. Which of course increases my appetite as well, since good stuff tastes really good.

Anyway, gained a few since last time. Miserable about all the side effects. Thank goodness hubs came along, because I simply LOST MY SHIT. Dr. Cancer wants me to stay on the tamoxifen. We presented the idea of taking a half dose, but "there are no studies". Bitch, I don't care.

Surfing around the inter webs can be dangerous, but here's a sweet list on DRUGS.COM!!!

I'm going to post the symptoms, and the ones I have I will highlight so you can get a visual grasp on the utter shit I am dealing with. Yea, Me!!!

Less common or rare

• Anxiety
• blistering, peeling, or loosening of the skin and mucous membranes
• blurred vision
• cataracts in the eyes or other eye problems
• change in vaginal discharge
• chest pain
• chills
• confusion
• cough
• dizziness
• fainting
• fast heartbeat
• fever
• hoarseness
• lightheadedness
• lower back or side pain
• pain or feeling of pressure in the pelvis
• pain or swelling in the legs
• pain, redness, or swelling in your arm or leg
• painful or difficult urination
• rapid shallow breathing
• shortness of breath or trouble with breathing
• skin rash or itching over the entire body
• sweating
• weakness or sleepiness
• wheezing
• vaginal bleeding
• yellow eyes or skin

Incidence not known

• Bloating
• constipation
• darkened urine
• diarrhea
• difficulty with breathing
• indigestion
• itching
• joint or muscle pain
• large, hard skin blisters
• large hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, and sex organs
• loss of appetite CAN I PLEASE EXCHANGE ONE OF MY SYMPTOMS FOR THIS ONE?
• nausea
• pain in the stomach or side, possibly radiating to the back
• red, irritated eyes
• red skin lesions, often with a purple center
• sore throat
• sores, ulcers or white spots in the mouth or on the lips
• unusual tiredness or weakness
• vomiting

More common

• Absent, missed, or irregular periods
• decrease in the amount of urine
• feeling of warmth
• menstrual changes
• noisy, rattling breathing
• redness of the face, neck, arms and occasionally, upper chest
• skin changes
• stopping of menstrual bleeding
• swelling of the fingers, hands, feet, or lower legs
• troubled breathing at rest
• weight gain or loss
• white or brownish vaginal discharge

Less common or rare

• Abdominal or stomach cramps
• black, tarry stools
• bleeding gums
• blood in the urine or stools
• bluish color changes in skin color
• bone pain
• decreased interest in sexual intercourse
• discouragement
• feeling sad or empty
• hair loss or thinning of the hair
• headache
• inability to have or keep an erection (DO MEN TAKE THIS STUFF TOO???)
• irritability
• itching in the genital area
• loss of interest or pleasure
• loss in sexual ability, desire, drive, or performance
• nausea or vomiting (mild) I ONLY WISH I COULD VOMIT!
• pain
• pinpoint red spots on the skin
• skin rash or dryness
• stomach or pelvic discomfort, aching, or heaviness
• swelling
• trouble concentrating
• trouble with sleeping
• unusual bleeding or bruising

So, overall, you can see that I'm a lucky girl. Is it time to stick my head in the oven yet? I mean, really, is this a life? Not to mention how it's affected my career. I'm doing ok covering up, but for how much longer? 

Folks said that the symptoms would get better and definitely not worse after the 2 month mark. It's 10. Fuck you all who said it would at least not get worse. And the doc won't even give me an alternative to the devil pills. 

I went back to the Vampire Boy for more blood drawing, because we're going to test my thyroid. I hear that radiation can kill your thyroid, but again, docs won't admit it. I don't know if I hope that is the culprit. I think it all blows flaming monkey chunks and I'd much prefer to be an apathetic blob who doesn't give a shit about anything. Unfortunately, that doesn't seem to be a side effect, but seems possible. Some days, it is real. But it never lasts, and then I care that everything sucks. Winning is no longer an option, huh?

I did get some Soursop blend juice. It's delicious and tropical. It will taste better with rum. 

4 more…

… years are recommended for the tamoxifen.

My daughter asked me tonight: "How much longer do you have to take this cancer medication?"

This tells me that it's hurting our family.

We talked about alternative medicine. We talked about the legalities in this country.

The money wins over the cure.

Maybe I can try half doses. Because I'm still scared, like everyone else.

But I can't go on being this insane for another 4 years.

I'm going to see if I have enough turmeric to make This.  We take turmeric daily, but this looks really powerful. Black pepper? I may just spread this shit on toast.

Weight struggles (gained 5 last night, for really no reason - I had a few marzipan pieces after dinner… is that enough to put 5 lbs on someone?). Increasing joint pain. Osteopenia. False menopause. A multitude of grey hair. Insanity. The shortest fuse on the planet. Dry skin which affects my musicianship. Eyes are starting to go fuzzy (after I spent all that money on lasik!!!)  Did I mention - insanity???

I wish I knew what my mom went through and had done. She had some real insane periods in her cancer life, but they didn't have tamoxifen back then. I wonder if she had a hysterectomy. I remember her going bonkers and gaining weight. She, the woman who was 97 pounds at her wedding. The perpetual size extra small. It was too weird to make sense. I know she doesn't want me to end up like she did. I am guessing hormone identity theft, much like mine but MUCH worse. Why didn't people talk about this stuff with their children back then? I am seriously considering contacting her old hospital and seeing what I can do to get a hold of her records. HIPPA violation? They didn't have those back then. Do the records even exist? It was nearly 25 years ago. I'll pay for them. I don't care. They're a part of my history, and of my daughters. We deserve to know.

ps. Fuck you, Cancer.

The Fence

I want to stop taking the tamoxifen. And then, I have the guilt. If it morphs, if it travels, I will feel bad for my family. Not me. If I were alone, I'd have no problem with it. In fact, I wouldn't have taken it in the first place if I were not a mother. Wife… eh, I'm not sure - but the kid thing really gets me. Because I was that kid. And my mom died from this shit.

Had 2 good workouts and an actual date night last night - korean chicken dinner, beer, and some laughter and tears. Yeah. All this stress has just made its way into our relationship like a meddling third party. But last night was good. I still took my fat and angry pill, despite wanting to stop. Because in the end, it's still my guilt if I remain sick and get sicker.

I have been reading about tamoxifen and depression and craziness. It's real. You can't turn off your estrogen suddenly and NOT be crazy.

Decisions. Oncology appointment in a little over a week. I guess I'll take it until then and discuss further. She'll tell me I'm doing great on it. I'll disagree. At least, I think hubby will be on my side, especially since he's on the receiving end of crazy.

But, today is so far a good day. So I'm going to go with that for now.

Tamoxifen is officially an ass hole

It does something to my brain that I can't handle at times. I think I just told my husband that I would be dead when he got home. I definitely find that I drink more wine since I started. Is this worth it? Is it worth prolonging my life months or maybe a year, just to be miserable and probably certifiably bi-polar? I hate myself at these times and it's like I'm watching from the outside.

I think I'm better off not taking this shit and being happy for as long as I might have left. I think it's time to stop. Nobody needs me around like this. Especially not me, especially not my family.