Starting/declining hormone therapy Nov, Dec, Jan 2018
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I am so thrilled to see so many of you talking with your doctors about an introductory dose schedule. It does make a big difference in how your body adjusts and reacts to something new. I am so passionate about gradual introduction of these anti-hormonals, that I am approaching an incoming doctor at the practice I am at, to do a focused study on patients that start with full doses vs. half doses, and the long term adherence to the drug therapy schedule, i.e. 5, 10 years, etc. Always remember, that we own the bottle, the bottle does not own us. By working with our MO's, we are taking ownership of how we will introduce something new into our bodies. Our goals are the same, prevent recurrence and live a healthy life.
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Tigerlily, no none of the docs seemed to treat the Prilosec as a big deal at all. It was a nurse Practioner in the radiation treatment unit who initially prescribed it, and they seem happy extending the prescription until we figure out what's going on.
It's interesting that so many of us are dealing with the heartburn thing - yet my MO told me it would be a rare side effect for tamoxifen. I sometimes don't think they really know what they are talking about with side effects! I wonder if it's because women tend to underreport - we're so used to grinning and bearing it, and then getting brushed off if we do report...
Anyway it's a bear and I'm pretty sure it's what's interfering with my sleep. I am now taking trazodone to 'help' with that. I don't think it makes the heartburn any better but it seems to help knock me out so that I get slightly more sleep anyway.
I'm hopeful that either the GI doctors+MO will figure out something better to do with this side effect (the omeprazole definitely helps, it made it go from excruciating to annoying but bearable during the day and only unbearable for sleep) - or that my body will keep adapting and eventually it'll go away on its own. I spoke to a woman at my work who is on her 2.5 year of tamoxifen and she said that after the first year or so, the side effects she was having (for her, exacerbated migraines and I think achiness) either went away completely or diminished significantly.
I have so much work to still do before work this morning (lesson planning I was too tired out to do last night, argh) and I'm bad at responding to everybody, but I so much love being responded too that I hate when I can't do it too. So I will just say that I'm reading all of you, I see all of you, and I'm so thankful for you all being here!!!
I'm sharing two cat pics, one at rest and one at prowl! Kalenda (Kali) is a sweet funny cat most of the time.
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I'll second what Salamandra just said: I'm reading all of you, seeing all of you, and so thankful you're sharing your stories, even though right now I can't take time to respond to everyone. It's so comforting to have a tribe out there all going through the same thing, all just doing our best to avoid getting more cancer, commiserating and encouraging each other.
I'm tapering up, and the night before last I took my first 20mg dose right before going to bed, after about 3 weeks of 10mg. Woke up in the middle of the night with leg cramps. I have a lot of trouble with foot and leg cramps anyway, especially in the winter, and this had been a particularly bad winter for cramps and aches in general; I think I've just been so tense since diagnosis that my muscles hurt all the time. But the fact is, the first night at 20mg the leg cramps were bad enough to wake me up, which doesn't happen often. So last night I alternated back to 10mg but still woke up every couple of hours needing to pee, and also alternating between chills and hot flashes. Between that and starting to feel some dryness/stinging/irritation "down there" I wondered if I might be getting a bladder infection. Probably not; it's likely just more of the fun of this drug. Thankfully I got to sleep in a bit because we're now in an ice storm that cancelled my shift at work yesterday and today is causing a late start. My sleep has become gradually more disrupted over the past few days, with frequent awakenings beyond what I was perimenopausally experiencing before this all started, so between that and being stuck in a house for 36 hours with the constant fear that an ice-covered branch is going to damage my property or knock out my power I am tired and cranky, cranky, cranky. On the bright side ... if you're going to start experiencing epic hot flashes, what better time than in an ice storm? I can only imagine how much more miserable last night would have been on a hot summer night! I'm clinging to all the stories from those who report that the side effects were temporary.
Surfing through this and other threads, it sounds like magnesium might be helpful, so I'm going to look for some today. There's a vitamin shop on my way home from work which appears to have the brand I want. Hoping it will save my sleep ... my relationships ... my job ... hey, if a little white pill can supposedly save my life, why shouldn't another one be able to save the quality of that life. I'll report back after trying it.
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So the first 10mg was taken before bed last night. Not much to report, LOL. So far so good. I am hanging on to the hope that it is possible to have few side effects! I am using my anxious energy to clean and organize my spare bedroom closet. Anxiety seem to be one of the gifts I have gotten from this "experience" (thanks cancer, you are an asshole). PS Hope it is ok to be in the group even if I officially started in Feb.
Purplecat- It was Egads that had suggested what type of magnesium to try. It was bisglycinate or glycinate that she had said was highly absorbed and easy on the tummy. Its a miracle I even remembered the post so I wanted to share. I am going to try it as well. I hope it brings relief to your leg cramps.
I had my 3 month appointment with the BS yesterday. She did an US of the lumps I felt in my upper chest. She thinks they are changes from radiation and said we will keep an eye on it. I also second what Salamandra and Purplecat said, and I am so very grateful for everyone sharing their stories. Here is a picture of my floofy Leroy wearing hearts in honor of the support I feel from you wonderful peeps!
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Hi, all! I have been reading and waiting to chime in on this topic, as well. I just finished radiation last week. I'm going on a trip out of the country next week, so I don't want to start Tamoxifen until I am back. I am quite nervous to start this...don't like the idea of continually assaulting my poor body! Surgery, radiation... Now physical therapy for stage 1 lymphedema. Adding one more challenge sounds daunting. I am not yet in menapause, but I guess Tamoxifen will send me there? I am curious about the 1/2 doses to start - is this something my MO would recommend? Any input would be helpful. Thanks and good luck to all of us on overcoming these obstacles and returning to our regularly scheduled life programming!!
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Hi To all - I went to my Infectious Disease DR today and mentioned 'by the way' that I have severe acid reflux and he prescribed CARAFATE. I havn't even looked it up yet, or filled the prescription. Tigerlilly - I take Omeprazole (little help) tums, pepto bismol, & zantac. All no help since Chemo/Herceptin and Arimidex. I've taken it for years. (prescribed by my Rheumatologist)
I have way to many Doctors. I need to fire some. Its getting confusing. (I go to this doctor for my Sepsis Issues)
My Oncologist said I would have a second bone density test to compare to 2 years ago - I just looked up my last one and it said I have Osteopenia - I want to know if my Arimidex will effect this. I sure my MO is not aware.
I love this thread. I would have never thought to look up my bone density if it hadn't of been mentioned. (thx LPLibrary) amoung other things...0 -
Dani, I started my anastrazole in mid September- I hope I’m not voted off the island either! Wishing that everyone’s leg cramps, insomnia, acid reflux, migraines and other #*%a# side effects resolve soon. Gentle hugs to each of you...
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MissCommunication—I asked my MO about easing into the AI based on posts I’d read here. She didn’t have a problem with it. I think for a medication you’re going to take 5-10 years,taking it easy for a few weeks can’t possibly matter. In fact, I haven’t read about anyone’s MO having a problem with it.
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I love Leroy and Kali so cute you guys
I third that! I am so grateful for all you and your posts.I normally get horrible migraines and have not had ONE since starting Tamoxifen. I started at 10mg and am still at that dose. I did not ask my MO because he is an AH! I do have a bit of joint pain and some weirdness going on "down there" I am not sure if it's a UTI or yeast infection. I think I need to head to the Gyno, but am so over going to the Dr. I probably won't start the 20mg of Tamoxifen until I end RADS in March. I am so glad that I eased into the Tamoxifen.
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I used to have regular migraines, too - about twice a week. I had none during chemo and still none now that I'm on tamoxifen (and I started right off at the daily 20 mg dose).
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Hi rljes,
I've been taking Carafate off and on since my earlier stomach/throat flair up about 2 years ago after Melanoma surgery and treatment for complications. The instructions say to take it before meals and especially at bedtime, however it can't be taken within an hour of taking PPI medication such as Protonix. Not sure about with over the counter type meds as Pepsid. So it's kind of a hassle allowing 2 hours before meals to take medications before you can eat.
What it does is coat your stomach/throat and helps heal it. It can't be taken before surgery either~something dangerous about it if you should aspirate it in your lungs. I would check whether you can take Pepto Bismol and Zantac with it, Maybe ask the pharmacist. Anyways, I'm going to try taking one pill in the middle of the day, prior to taking the Tamoxifen which I'll be restarting soon to see if that reduces the irritation.
Salamandra,
Saw my MO today who insisted that Tamoxifen will not give patients acid reflux/stomach/throat issues. I'm sorry but she is full of bull. I explained that I am in contact with other patients taking it and that's what they report. Like I told her, the tamoxifen already destroyed my uterine lining and necessitated surgery but I won't let my stomach/throat be destroyed. She was ok with me taking PPI medication and Carafate or whatever medications I need to treat my stomach/throat issues. She did tell me that there's research that the PPI medications long term can cause Dementia. Well, I need to check this out because I don't believe half of what she tells me especially without citing her sources.
It's very uncomfortable having stomach/throat issues daily but what's worse is if the Tamoxifen or AL is causing permanent damage. I also have a referral back to GI but not sure what they can do for me.
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Regarding DEXA scan - I went for baseline and bummer! Osteoporosis in my spine already! At 38! but I believe it is due to my tiny body (BMI 19-20 my whole life) - my bones simply never reached the average. The average is a woman 40-50 heavier than me, so I personally think that would be a miracle to have bones as this imaginary average person.
Nevetheless, I have been put on ovarian suppression + AI (Aromasin).
I am now at full dose of Aromasin and honestly, I don't see any issues. I am recovering from the surgery from 2 weeks ago, so that might be the reason - I am thinking constantly about the incissions and TE's cutting into my chest, not about anything else. This morning I noticed a hot flush, one in several days. I am glad I don't get more of them now, because I would be worried about fever post surgery.
Salamandra, thank you so much for the pictures of your beautifull Kali. I see she has one sock ❤️. These pictures even made me read about cat fur genetics on Wikipedia 🙂 So interesting. I once lived with a tortie and she was a sweet little thing. Your Kali reminds me of her.
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Hi everyone,
I started Lupron (monthly injection for now) and anastrozole 3 weeks ago. No side effects really aside from difficulty falling asleep. However I got my full period 2 days ago! Lupron was supposed to put me into menapouse. My MO said it is not that unusual after only 1 dose but of course it also means that I still have tons of estrogen:( Did anyone have an experience with this?
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Veeder your MO is correct about the PPI causing Dementia. My doc has been trying to ween me off protonix stating this potential S
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Nomadd - my MO told me I might get one more period after starting zoladex, and it works similarly to lupron. I did get that one period and no more after that.
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First day of full strength arimidex. Wary. We will see.
Have been ramping up very slowly over the last two weeks. Main effect is fatigue, which has been heavy especially in the late afternoon and evening. Headaches are slowly getting better. Nausea was really only the first few days.
Five years of this. Hope it works. Hope the fatigue lifts some.
Good wishes for healing and happiness to all here!
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Hello all.
I finished chemo and radiation almost 3 years ago. I was on Arimidex for nearly a year but couldn't stand the side effects so I was placed on Exemestane. I am now faced with heart damage from the chemo (AC) and just learned that Exemestane also causes heart damage. I'm so frustrated and scared. I thought I was doing everything right and now this. I was so focused on ridding my body of the cancer, I just didn't give the long term effects of the meds a second thought. I told my oncologist about my symptoms a year ago. She told me it was all in my head. 6 months later I was unable to climb a flight of stairs without being breathless. I did pulmonary testing which came back clear. My primary care dr. ordered a heart monitor test and it was clear. She then had me take the treadmill stress test on 2/5 and I could only make it 2 minutes before I couldn't breath. I see my dr. on Monday to see where we go from here. Question, has anyone gone off Exemestane and found their breathing improved? Thank you for being my support.
ER+/PR+/HER2- 12 Chemo, 35 Radiation
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Hi Everybody - MY LAST DAY OF HERCETIN - Yippie!
I spoke to my Pharm Oncologist about my aches and pains since taking Arimidex, He said to STOP and retry. I asked if it was ok to take 1/2 pill or everyother day - he said yes, but would prefer I stopped. (I'll do as I please anyway) He said if I don't tolerate it any better he will switch me to Tamoxifen. I'm not so sure about that. I think I will give Arimidex anther try.
HPfull - Do we have the same MO (lol)
Wanderweg - My Migraines stopped during chemo too. But came back, afterwards, at least not nearly as frequent now. I have more headaches now with Arimidex.
Veeder14 - thx for info on Carafate. I'll start soon - as soon as I drag my behind to the drugstore.
Nomaddd - I took Lupron 30 years ago and it stopped my periods cold turkey, plus severe Hot flashes. Hope you do well.
egregious - You and I are on the same schedule with Arimidex. How are you getting along with it? I'm glad to hear the headaches subside. My Pharm Oncologist said I was 'Hyper sensitive to pain" due to Arimidex. Even my Port was hurting, My hair follicles were hurting.
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Hi, guys. Lurker here. I’ve been reading your posts for months, and let me tell you, pictures of yiur beautiful pets brighten my day!
I’ve been taking Anastrozole with ovarian suppression since December and it’s been ok, I guess. I hate the Lupron shot more then the pill, so I decided to remove my ovaries. Saw the surgeon today, and he was in complete agreement with me. He said the side effects I have now are not going to get worse after the surgery. I will do it at the same time as my exchange in May.
Sorry, don’t have any pet pictures to post
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Welcome InnaB2018 - I've gained so much knowledge and comfort from this thread. Hope this photo makes you smile. These are my Kees that I used to have. My favorite picture.
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Hey all, love the cute animal pics
I am looking forward to seeing mine this weekend. I spoke to a nurse at my cancer center this morning and while they cannot completely be sure from 5000 miles away, it appears that I had a rare reaction to Zometa. My appetite is back, the Prilosec did nothing, and I think I mistook severe muscle pain for acid reflux. Might have had a touch of it. I am getting better and right now just feel tired and like I pulled a few muscles around my right ribs. Will go Inif not better by Monday. Morale of the story, no new drugs or infusions before going to Hawaii. 0 -
Hey rljes,
HOORAY RLJES for her LAST DAY OF HERCEPTIN! WOOHOO!
The arimidex is powerful. I found the first week at a reduced dose to be pretty awful. Now at the end of week two I can see that it's very slowly lifting and getting more tolerable. Stomach is better. Headaches are a little better. Still some insomnia. So very tired - of course I'm 67 and that is a factor.
The medical team promises it gets better after several weeks/3-4 months. If it can keep me from going through ALL THIS AGAIN, it's worth some discomfort.
Welcome, InnaB!
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Tigerlily318 sorry that happened before you HI trip 😢
Egregious- I am glad your headaches are getting a little better. I hope they go away completely for you.
Rljes- yes we have the same MO, it maybe they are evil twin brothers lol.
Welcome Inna 😊
So I was saying I had no migraines while on Tamoxifen, but today had a doosie! I am sorry n my period so maybe that why? I also stated Effexor because I was have major depression. I am fairly nauseous and don’t know if it’s from RADS, Tamoxifen, Effexor, or my period or all those combined. Just finished watching HEAL on Netflix. Have any of you watched it? Here is a pic of my Kiki Girl. Happy Saturday Ladies! Hope you have a wonderful weekend
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HPFULL, Kiki is adorable! Such a sweet face. Good luck with the Effexor. I’ve been on it since early Dec. My MO prescribed it to help my horrible hot flashes. It worked, they’re less frequent and almost always less severe. (I still get a real doozy every once in a while!). However, within 10-14 days my low level but still chronic anxiety also improved. I haven’t had any side effects from it. Wishing us all a relaxing weekend!
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Chiming in to say I started Tamoxifen in Nov '18, went straight for the 20mg and have had no issues so far. Hot flushes from it and Zoladex but overall all good. Really sorry to hear that some of you sisters are struggling with it. I'm taking my Vit D3 (50,000ui once a week), omega3, calcium, curcumin and magnesium daily. Not sure if that has helped with side effects.
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Tigerlilly- That is a bummer that happened on your trip
Sounds like you are starting to feel better though!! InnaB- Welcome! Glad things went well with your surgeon visit. Nice that you will be able to have it done at the same time as your exchange.
Bonnie- uggg I am sorry you are having on going heart problems. It really is frustrating when your SE's get dismissed by a provider. I hate that for you. I hope they can get you some answers and relief soon.
rljes- love the pic of the fluffy pups!
HPFULL-I am curious how the migraines are going to fare on tamoxifen. Sorry you had a bad one, they truly suck and really take it out of you! I haven't watched Heal but might try to check it out on my next day off! Kiki is a cutie!!!
Greenharbor- Glad the Effexor is working. I am just starting the tamoxifen but it is interesting it helps with the anxiety. That is something I could use some help with. I have been getting random anxiety since finishing rads.
Also I found a cool app (sorry if it has already been mentioned here) it is called About Herbs from Memorial Sloan Kettering cancer center. It is a guide to herbs and botanicals and has some great information on interactions with cancer treatments and meds.
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Hi All
Congrat's egregious On Last Herceptin!I had to call it quits on Arimidex. Final straw was Friday night after my Last Herceptin - I broke out in an itchy rash on my back/chest/arms - like I had chicken pox. Before I broke out, my Pharm MO had told me to stop for a bit and restart. My SE's kept getting worse. I had been on it for 20 days. I was going to ride it out for another month until the rash came. I see my MO in 3 weeks. : Truman - about 12 years old.
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Hello Miss Communication, I have been on 20 mg. of Tamoxifen for 8 mos.now. I did not start at a lower dosage. I am 52 and was still getting my cycle fairly regularly. In the past 8 mos. I got my period about 4 times. After the most recent 77 day hiatus I thought I was headed into menopause, but no such luck. This month was the worst ever. Hoping this was the grand finale'. I have been blessed with minimal side effects. Some anxiety (I had none prior), slight fatigue, and fortunately weight loss rather than gain. 4 years and 4 mos. to go. The plan is to switch over to another med after 1 year in menopause. Who knows when that will happen. The sooner, the better. Although the PE blood clots and Uterine cancer are unlikely side effects, they are still on my mind on most days. Best of luck to you on your Tamoxifen journey.
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rljes, I hope you start to feel better soon now that you’re off the arimidex. That rash does not sound fun at all. Truman is adorable in his bandana! Dani, thanks for mentioning that app; I’ll have to check it out.
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Just a quick hello! I’ve still been following along (especially when taking a work break lol) but wanted to wait to post until I could address each comment and now there’s so much that hard to address all (although I plan to post later and do that).
Quick shoutout to SugarMaple though because the pic of Kit Kat and her expression was inspired by your adorable cat!
And quick thumbs up for the explosion of paw family pics on this thread now. Love the cuteness of our paw supporters and so fun to log in and see more!
Almost ready to transition to full dose but I’m a bit nervous about it. So far so good at half dose and sometimes I wonder if I can just stay at that (I’m only 5 ft.).
We’ve had some rainy days so here are the pups prepared for outdoor walks in the rain!
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