Starting/declining hormone therapy Nov, Dec, Jan 2018
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A heads-up for those of us in nasty northern climates with lots of snow and little sunshine: At my survivorship appointment last week, the nutritionist told me about the importance of Vitamin D. She advised me to take supplements, first getting my level checked. Sure enough, I'm low; so low that as soon as my PCP saw it she called in a prescription! I'm supposed to take it for 8 weeks and then get rechecked. On the one hand, how long has it been low, and did it contribute to getting cancer? On the other hand, I'm glad that there appears to be something fairly simple I can do to fix it. Assuming it's improved when I recheck, I'll feel like my risk of recurrence has gone way down. I don't know what I'll do going forward; I need to be really careful of the sun because of the radiation treatment, but that's one of the best ways to get Vitamin D.
Salamandra, I'm brewing my coffee right now! Can't wait to try it in the morning!
Ingerp, thanks for the oatmeal story! This week I learned that one of my survivor friends who was most supportive through my own treatment is facing a possible recurrence. We talked at the time of my own diagnosis, and I don't remember what she said about tamoxifen; either she didn't take it at all, or she took it and quit, but she definitely didn't do five years. I also don't know if she was ER positive. The very last thing I'm going to do right now is ask her either of those questions, and I'm so hoping for good biopsy results for her. But any thought I had of quitting, or lowering my dosage, are right out the window at the moment.
Dani, YAY for losing five pounds! That's awesome! I signed back on with Weight Watchers this week and am hoping I can lose 15 in the 3 months before the special offer runs out.
Pebbles, give those adorable pups skritches from me!
HPFULL, I hope you're feeling better and that the adjustment to 20 is going OK.
My biggest thing lately has been emotional/anxiety. I'm doing yoga and really trying to be mindful throughout the day of how I'm breathing, and that does seem to help, but I'm definitely struggling. There are both physical symptoms, like chest pain and little dizzy spells, and emotional things, like nearly bursting into tears during a mild disagreement with my boyfriend and having to walk away. That's really unlike me; I've always been anxious but even-keeled, if that makes sense. Could be tamoxifen, but I think the news of my survivor friend's possible recurrence is triggering a lot of stuff, and I'm sure the hormonal changes aren't helping. Six months ago I was right where she is, waiting for biopsy news, so I'm sort of re-living those awful early days. And it's reeeaaally dragging out for her because of various circumstances in her world causing delays. I hadn't realized how mercifully quickly things had moved along for me in those early days until I realized there's going to be almost as much time between her initial mammogram and hearing her biopsy results as there was between my initial mammogram and first surgery. The wait is torturous. And it's really hard to give her the support I want to be able to give without getting too entangled.
Hi to everyone I didn't mention, and thanks to those who have shared tips and wisdom from long experience. I think whether we respond directly to each other or not, it's so good to have a forum like this for support.
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Hey there, I am wondering what anyone knows about possible effects to the eye from tamoxifen? I have an area of blurry vision since friday in the center of my vision. I went to the optometrist today and they said I have a hole/ cyst on my macula, Something about the vitrious pulling it away. I really did not understand it. Their recommendation is a 3 month follow up. I am putting a call into my MO here soon. They had to "look up" if tamaxofen could cause this but they "didn't think so" They did say it could resolve on its own, or get worse. I am just kinda freaking out.
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I can’t advise you specifically but I have read that can be a side effect of the AIs so dotalk to your MO for sure.
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I googled this a while back because my vision was doing funny things that weren't quite like the funny things I experience with migraines. There were articles that suggested some connection between tamoxifen and eye problems, including what you're experiencing, so it could be. I think it's good news, though, that the optometrist is telling you to come back in 3 months instead of sending you immediately to a specialist. But I'm glad you're getting in touch with your MO. Keep us posted!
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Hi ladies,
I've now been taking lupron shots and anastrozole for the last 2 months since Jan 21st. I am doing well with side effects for now, except a little trouble with staying asleep the whole night and mild headache in the morning. I try to exercise vigorously 4 to 5 times a week so hopefully that's helping with hot flashes, joint paints, etc as I haven't had much of those (yet?).
My vagina however is now completely dry:( I just started online dating again and want to be able to use the thing sometime soon with this guy I've started dating:) Any suggestions here for natural remedies around helping with that? Hope it's not tmi. I also will tell him about the cancer thing this Sat when we meet as the boob is still very much swollen and skin is different color here and there after radiation. Weird roads we're traveling due to this disease.. Thanks in advance!
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Dani- I hope the eye issue resolves and that it's not something weird the tamoxifen is doing. That must have been pretty alarming.
Nomaddd- just started lupron and preparing to start anastrozole, so am following along as I'm sure I'll be dealing with similar issues in the future.
Does anybody have a preferred time of day for taking arimidex? Trying to gear myself up to start it in the next week or two, but am curious if people have noticed if it's better in terms of sleep/fatigue/other side effects to take it in the morning or evening.
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OTMom, I take my anastrazole in the mornings. I also had heard it can affect sleep, and I already have insomnia. I’m happy to report that insomnia isn’t any worse.
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I spoke to my MO’s nurse, she said he wants me to stop the tamoxifen and see ophthalmology. She said to call the office back when I see them and they would decide if I need to “ try something else “
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Nomadd--never TMI here but I have no recommendations other than OTC stuff. My OB/GYN prescribed an estrogen vaginal supplement before my BC diagnosis but I stopped that once I got the dx and learned it was ER+. I'm sure some others will have recommendations, but have you googled it?
Dani--ugh. All good thoughts your way.
OTMom--I take mine at lunch because I don't eat breakfast. I think most of us take it earlier in the day. My biggest worry was about my sleep being interrupted but I haven't noticed that. And you've read about the many of us who did a gentler on-ramp? Like starting a half dose for a few weeks? I took a full dose every other day for about three weeks before doing the full dose and haven't had a whole lot of SEs.
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Hi all,
Nomadd, exciting and good luck!!
I have my first follow up with medical oncology today. They switched my appointment from the doctor to the nurse practitioner. I had the option to keep the doctor but it would have delayed the appointment and I wanted to talk to somebody, so hopefully she's good. I made a list of all the symptoms I want to talk with her about and will also ask about liver monitoring and the tamoxifen uptake test.
The GI doctor wants to schedule me for a 'pH/Manometry' to follow up on the acid, so I suppose that's good.
I'm SO exhausted. I feel like almost as fatigued as I was during radiation. I mean, I'm less fatigued, but I have to work now so I feel just as fatigued. My work is definitely suffering, I feel like I'm phoning it in more. So frustrating. Luckily my co-teachers are super supportive but I wish I could be doing better by my kids.
On the bright side I'm generally in a good mood and enjoying everything I'm not too tired to do
And I'm loving the cold brew coffee, and not even minding the cold so much. I'm using bustelo, which is the cheap espresso brand I love because it reminds me of how my grandmother's coffee smelled. Most directions said to use a coarse grind for cold brew but the fine espresso grind works fine, I think I need a somewhat higher ratio of water to coffee though. It tastes great to me and I love how easy it is in the morning. And now I'm drinking a hot ginger drink every morning for my tummy so I still have that morning hot beverage thing.
I'm so grateful to these boards and to all of you.
Here's my kitty (Kalenda/'Kali') just now doing a close surveillance of a suspicious hole in the concrete in the 'courtyard'. I have my own guesses about what she sees/smells there, but trying not to dwell on that
#urbanliving 
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Got my DEXA results back: osteoporosis in the lumbar spine and osteopenic in the femoral necks. I'm an avid runner so not sure what to do about the femurs, but it looks like I need to start up that strength training routine sooner rather than later.
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Oy, hapa. Is that what you were expecting? Are you taking any bone-strengthening meds? And how does this compare to any earlier scans?
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This was my baseline scan. It is not what I was expecting, as I do a lot of load bearing exercise and osteoporosis does not run in my family. I am not taking any meds currently. I may switch from AI to tamoxifen, we'll see what my MO says. My BMI is <21 and I think this is not terribly uncommon for thin women. My 10-year risk of fracture was 2.5%, which is significantly lower than my 10-year risk of mets. Just to put things into perspective.
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Roger that, hapa. Sounds like your head is on straight.
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OTmom, I take Aromasin in the evenings, because I read it could cause dizzines. As many here suggested, I eased into it - I was taking half a pill for about 3 weeks. My MO knew about this and she was completelly OK with it. I think it helped me a great deal. My body adjusted and I didn't have any sudden SE's. Now I am waiting for those dredded long term SE's. Well, but I am determined to try to live with them and take the AI as long as possible - what Ingerp's MO says helps me with this (I mean the piece about oatmeal 👍).
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hapa, what a bummer. That's what I had. I went for my baseline DEXA scan in December and was completelly taken aback - osteoporosis in lumbar spine, but both femurs ok (not even osteopenic). I am petite too, BMI under 20 my whole life. My PCP said "well, look at you, what were you expecting?" Ugh, I was expecting my bones to be strong enough, I am really not a coach potato, have large garden and I was wearing both my children in a sling for long walks in forests until they were 2 years old! But here it is, osteoporosis. I have bought a weighted vest and walk with it. I don't know whether this helps, when wearing my kids didn't, but I feel I have to do something. Have your vitamin D levels been checked? Mine was low, so I was put on prescription strenght vit. D + vitamin K2. This is very important as I understand it, since they work together for the bones. I am taking some calcium too and eating low fat dairy. I have a check up after half a year to see whether vitamin D level rises
(Editting some dumb typos. Sorry for my English, I feel I sound weird.)
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JaBoo - your english is great, IMO. I have had my vitamin D levels checked, but it was in 2017. In August, they tested fine, but in December, they were a little low. I'm taking Vitamin D supplements and going without sunscreen every now and again. I hike with a hiking pack, but the only weight I add is water in the hydration bladder. I also run with a hydration pack. I could throw some of our scuba weights in there I guess? I'll ask my MO what I could be doing to improve spinal bone density.
I found an online FRAX calculator and calculated my 10-year risk of osteoporotic fracture if my T-score was 0 and it's still 1.8%. That's for a white American, which is what the radiologist decided I am, I guess? I'm actually half asian. There's no calculator option for that but if I calculate as an Asian American, my 10-year risk with my T-score of -1.6 (for my femoral neck) is only 1.3%, and is 1% if I use a T-score of 0. I don't think this is something I should be terribly concerned about.
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Hi all,
I had my appointment with my medical oncologist nurse practitioner yesterday. I liked her a lot, as much or more than the oncologist. She was very validating about my symptoms being from the tamoxifen.
Basically her message to me was to keep following up with the related services docs (psych for mental issues, gastro for stomach issues) and give my body more time to get used to things. She did approve me asking my pharmacy for an alternative generic brand, and suggested I try the alternate brand for a month and then contact the office to update how I'm doing. I'm dreading dealing with the bureaucracy of Express Scripts, which is both my prescription drug insurer and pharmacy, but I'll try to start that process soon. To be honest, I'm not sure if she approved that route because she actually thinks it could help, or because it seemed like something she could let me do that would feel pro-active, without me actually cutting down or coming off of tamoxifen.
She did say that the evidence doesn't support 10mg tamoxifen. I kind of surprised myself with the ninja communication skills of my response to that! I said that my understanding was more that there was not evidence to support, not actually that there was evidence that discredited it. Then added that I supposed I could always just break the pills and try it if I felt like I needed to ease up. [Subtext: This is something I can do on my own without the doctor's blessing, so don't blow me off]. The nurse practitioner said she didn't think the med onc wouldn't be happy about me only taking 10mg. I laughed and said that the doctor was already not happy with me for keeping my IUD, so I didn't want to give her any more reason to be unhappy with me so I'll do my best to make the 20mg work. [Subtext: I want to be compliant but in the end I'll do my own thing if I think it's best, so work with me not at me].
They did routine blood work after the appointment, next time I'll try to do it before. I'm a little concerned about some of the results.
Most stuff stayed pretty steady from my initial blood work but the albumin plasma went down from the low end of normal to just low. My blood urea nitrogen also dropped to the very low end of normal. From googling it sounds like these can be associated with liver issues, and the albumin with fatigue, which I'm having in spades. My glucose plasma is still in the normal range but went up from the low end of normal to the high end of normal, and my plasma protein dropped to the very bottom of the normal range. On the blog side, my monocyte percentage went above normal into the high range, though the abs mono is still normal.
I'd like to understand more about what that could all mean, and I'll message the office to ask about it and ask whether I should have another blood panel in a month to monitor instead of waiting for my next regular follow up at the end of June. If any of you have any insight into these or recommended reading, I'd really appreciate that.
What a pain in the butt. At least the cold brew coffee is still delicious!
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hapa, I had a similar DEXA scan with osteopenia in hip and osteoporosis in lower back. My BMI is 21 and I walked 500 miles, over 6 weeks, with a 13ish pound backpack two years ago. I still walk a lot and was totally surprised/disappointed with that test result. My MO asked if I wanted to take Tamoxifen (easier on the bones) or the AI which she had originally planned for me to take. I decided to go with the AI because it would offer better protection from cancer. I will have to have a Zometa infusion once or twice a year for bone health, but my MO said it also seems to add extra cancer prevention too! A week or so ago I had a blood test and the results show my cholesterol is already elevated, another disappointment, which is another SE of letrozole. My numbers are usually great. I feel like I eat a healthy diet so who knows what's going on. When the nurse called to explain the results, including low vitamin D, I was sleeping and missed the call. I am going to ask for a retest when I go back in three months.
OTMom, I take letrozole before bed.
Salamandra, I'm glad you had a good appointment with the NP. I have had good luck with mail order ExpressScripts and I hope you will as well. You don't need the aggravation of having to fight with the pharmacy. I hope the weekend provides some rest and relaxation. I love the surveillance that Kali is doing!
Dani, scary eye stuff! I didn't realize that hormone therapy could cause eye problems. I think it's a very good idea to get it checked out further.
I am ready to make an appointment for acupuncture for my frozen shoulder. My PT said that after (now) 8 weeks of treatment I have made no progress and he thinks I might want to reconsider having a cortisone shot. I am still reluctant. Has anyone had experience with acupuncture?
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Hi Everyone,
Trying to catch up on everyone's Posts. A lot of interesting things going on.
Dani - Plz keep us informed about your EYE condition -if it has anything to do with Tamoxifen.
I'm still staring at my Bottle of Tamoxifen 10mg. I'm so tired, dizzy achy, without taking it - I am afraid whats going to happen when I do. But I know I have to take it. Started 500mg of Magnesium (for Hot Flashes and Muscle Cramps) I know it sounds strange, but It seems that when I took Arimidex, it triggered something in my system and just won't go away. I guess that's what I'm waiting on, for all my SE's to subside then I will start taking Tamoxifen. But it might be a flare up of my Auto Immune Diseases - its a cluster.
One of my Dr's prescribed Ritalin. I'll try that for my chronic fatigue. And I've tried to take longer walks. And since a few have suggested Tamoxifen causes weight gain, I'm going to do the quick " Sacred Heart Diet" (you can google it) Its for 7 days and you drop about 10 lbs. It works, I've done it several times over the years.Take care, rj
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Hi girls - my friend who is a Radiologist said MOST women all age quite similar in numbers when it comes to osteo. It's just part of aging. And those drugs for osteo are so dangerous & cause so many SE's that it's a crying shame that the dr's push that crap when they can just prescribe the strong bones exercises.
Taking these estrogen blocking hormones will definately put us at a higher risk for osteo. We have to work very hard at strengthening our bones & doing this EVERY SINGLE DAY! Just like we know we have to take the AIs to prevent cancer from coming back, we have to do those exercises to reverse bone lose & keep our bones strong.
My radiologist friend said in years ahead from now, dr's will look back at these hormone mess & osteo meds & wonder how & why they were ever approved for us. Big Pharma has a plan & we are the guinny pigs.
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BadLuck that’s an interesting thought—that many of us would have bone density issues even without the meds. (I’m just sorry I didn’t inherit my mom’s bone genes. When she was 70 she was told she had the bones of a 30-year-old.)
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Hi,
You know what's weird is that Tamoxifen and Evista are both SERM meds (estrogen modulator) and supposedly help your bones. Evista was originally marketed as a medication to treat osteoporosis, now being also used to treat and prevent breast cancer. I agree about the dangerous osteo meds and is why I tried a couple and gave up years ago due to severe side effects. Now I'm stuck with bad side effects from Tamoxifen but supposedly helping my osteoporosis.Yes, I had bone density issues before getting cancer. Yes, I agree, strengthening your bones with exercise and calcium supplements.
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Salamandra- How nice that she was validating with your SE's. And way to go in advocating (with ninja like swiftness) for the 10 mg try if needed. I will be curious if the switch in brand makes a difference. I have read many posts here and there in different threads that it does make a differrence! Are your stomach issues any better?
hapa- uggg, sorry about the DEXA scan results.
rljes- I hope you start feeling better soon. It makes sense to want to feel better before adding in the tamoxifen, and I hope it starts heading that way for you soon.
I have only been off the tamoxifen since Thursday, but I am thinking maybe since I have not been on the full dose long I might get a break from the SE's since my appointment with ophthalmology is the 25th. I actually did feel more rested when I woke up this afternoon (I worked last night) ans slept a solid 6 hours before waking! And then dozed some more because I could! It felt amazing. If my body allows I may just plan on sleeping as much as I can until we decide if I am going back on the tamoxifen. So if anyone needs me I will be napping in between sleeping
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HIya,
I think the diet is helping my stomach a little but it's still a problem. The good news is that Express Scripts made it pretty easy to try a new brand. They are shipping me Mylan instead of Mayne, and said if that doesn't work, call back and they will try another. From reading other threads on here it sounds like different brands work for different people and it's worth it just keep trying. I'm really really hoping it will make a difference. The stomach was bad, but the fatigue is terrible.
Also I broke my bike
And not sure when I'll be feeling enough energy to bring it to get fixed. Big bummer. And my probation time at work is going to be extended a year. That should be a good thing in the long run, since my application this year would be weaker because of all of this distraction from the cancer, and and I'm feeling pretty confident I will get 'tenure', but also a big bummer. 0 -
Veeder - thanks for the info on Tamoxifen & Evista. I believe my oncologist will be switching me to either one after doing another bone density this August. Because I have my overies, they did remind me that Tamoxifen is known to cause ovarian cancer but may build your bones. I'm really scared of the bad side effects of Tamoxifen. But what about the Evista? Never heard of that one
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Hi Badluck,
Your welcome. It looks like Evista has the same listed side effects as Tamoxifen except I don't see a warning regarding ovarian or endometrial cancer. You might have to ask a doctor about that. The information sheet online says, affects the cycle of bone formation and breakdown in the body, and reduces loss of bone tissue. It apparently acts similar to Tamoxifen blocking estrogen to breast cells, and giving estrogen to your bones and other tissues including your uterus and ovaries.
When I read the chance of getting endometrial cancer was 1% I didn't think too much about it. Until my uterine lining got very thick 17 mm fast in just 4 months, and thick lining is a cancer risk. The pharmacy informational sheet I have from T is very detailed and indicates women having a uterus, the risk doubles for uterine cancer according to one study. T is giving those tissue estrogen (sort of like getting estrogen replacement). I think my MO was delinquent in not making sure I understood this before starting the mediation.
Before cancer I already had severe osteoporosis and the osteoporosis mediation I took in the past couldn't even keep up with the bone loss. So there's no way I'm taking the AL medication that depletes bone. Even if my bone density was good to start, I wouldn't want to loose a large percentage of bone over 5-10 years. It takes a very long time to grow bone.
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Veeder - does Evista & Tamoxifen have the same risk to us as those osteo drugs have such as the oral & jaw disease that cause holes in your mouth?
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BadLuck,
I was thinking about this the other day and concerned about it so I looked it up. Evista and Tamoxifen are SERM meds, and the other bone medications are bisphosphonates or similar. From what I can tell it's not a side effect of either Tamoxifen or Evista. I did find one study where a patient did have that problem however they were previously on bisphosphonates and also had some other, not mentioned, illness/disease that contributed to it.
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Veeder - thanks for the info!
Those bisphosphonates have some of the worst side effects & doctors will even warn us if the terrible side effects. My oral surgeon warned me that if I did choose to try them to limit myself to only 2-3 yrs at the most. He said even yrs later in life, if I had any teeth extracted, it could trigger that disease to developed holes in your gums & teeth! So I will talk to my MO about Tamoxifen or Evista for bone building. Thanks again
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