"Tamoxifen Road" - Support and Encouragement
Comments
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I have been on tamoxifen since March 2017. I still see my oncologist every 3 months he checks my estradiol levels and I I am not quite postmenopausal. I haven't had a. Since January 2017 right before I had my lumpectomy. Side effects are minimal. Brain fog drives me crazy and if I don't drink at least three liters of water a day I will get leg cramps. I have had 2 transvaginal ultrasounds since going on tamoxifen and they are monitoring the thickness of my uterus. So far I have been within normal range. I was recently diagnosed with glaucoma and I strongly feel the tamoxifen had something to do with it. Since being on tamoxifen my vision has gone downhill quick. I've always had excellent vision and now I'm having a hard time telling black from Blue!
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32B - My first MO wouldn't prescribe less than 20 mg, but that didn't make me TAKE 20 mg / day. I am only taking 10 mg / day. My current MO doesn't like it, but says some is better than none.
Based on what I cut & pasted below, my concerns were:
1) thickening of the uterine lining (including benign growths and uterine cancer) - I have seeing a gynecologist every year now and had the lining thickness measured at the first one (in December)
2) liver - the Kelsey MO would do blood tests every 3 months, but I've opted to go with the MD Anderson MO who doesn't test for liver issues. I plan to ask my PCP to include the liver blood counts in my bloodwork each year
3) changes in vision / retina - I had eye exam in Nov or Dec and will have it each year. I include the option where they take a picture instead of dilating the eyes
As far as things to watch for, the Tamoxifen support group has a file that is the "tamoxifen package leaflet" from the UK that lists the following side effects:
Very Common (may affect more than 1 in 10 people)
• Nausea
• Fluid retention
• Hot flushes
• Tiredness
Common (may affect up to 1 in 10 people)
• Anaemia (a blood problem which means you have too few red blood cells)
• Increased amounts of fats in your blood (shown by blood tests)
• Allergic reactions.
• Changes in the womb (including changes to its lining and benign growths)
• Feeling light-headed
• Headache
• Itching of genitals
• Vomiting
• Diarrhoea
• Constipation
• Thinning of your hair
• Changes in blood test of liver function
• Formation of fatty liver cells
• Leg cramps
• Muscle pain
• Increased risk of blood clots (including clot in small vessels)
• Changes in vision due to cataracts or changes to retina of your eye.
• Sensory changes (including taste disorder and numbness or tingling in the skin)
Uncommon (may affect up to 1 in 100 people)
• Blood problems. This can make you bruise more easily, get serious infections, or feel
very tired or breathless
• Changes in the amount of calcium in your blood. The signs may include feeling very
sick, being sick a lot or being thirsty. Tell your doctor if this happens because he or
she may want you to have blood tests.
• Changes to your vision and difficulty seeing.• Swelling of the pancreas. This may cause moderate to severe pain in the stomach
• Inflammation of the lungs. The symptoms may be like pneumonia (such as feeling
short of breath and coughing).
• Liver cirrhosis (problems with your liver).
Rare (may affect up to 1 in 1,000 people)
• Severe blood problems. This can make you bruise more easily, get serious
infections, or feel very tired or breathless.
• Changes to the cornea of your eye
• Problems with the nerve that connects your retina to your brain
• Swelling of the optic nerve.
• On occasions more severe liver diseases have occurred from which some patients
have died. These liver diseases include inflammation of the liver, liver cirrhosis, liver
cell damage, reduced bile formation, and failure of the liver. Symptoms may include a
general feeling of being unwell, with or without jaundice (yellowing of the skin and
eyes).
• Cells normally only found in the lining of the womb found elsewhere in your body,
cysts on the ovaries, and cancer (the signs of this are given above).
• Non-cancerous mass in the inner lining of the vagina (called vaginal polyp).
Very Rare (may affect up to 1 in 10,000 people)
• Inflammation of the skin characterized by rash or erythema, very often on areas
exposed to light (a condition called cutaneous lupus erythematosus).
• A skin condition characterised by skin blisters in areas exposed to the light, this is
due to the increased liver production of a special group of cell pigments
(called porphyrins).
• Radiation recall - skin rash involving redness, swelling, and/or blistering (like severe
sunburn) of the skin after receiving radiation therapy0 -
Please, does anyone feel a clicking sound on the joints especially on the knuckles of the hand and ankle joint while on tamoxifen? If i do range of motion on my shoulder, I hear the click and If I make a fist and open it, I hear the click too. All these started about a month ago. I'm just 2 months on tamoxifen.
Thank you
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Hi MsPrecious---my joints have always been pretty clicky, so I can't say tamoxifen changed them. But I have increased joint pain after being on Tamoxifen for awhile.
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Just started Tamoxifen 20 mg from yesterday. Fingers crossed hopefully not much side effects.
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Feeling so down in the dumps today, I find myself once again tempted to stop taking Tamoxifen, I feel like it's wrecking my life. I feel depressed and miserable, overall pessimistic about the future, as well as having hot flashes so often, which is uncomfortable in this hot climate. There just seems no point in feeling like this for years when it's not even 100% guarantee of keeping cancer away.
Please forgive my whining, just needed to say how I feel to people who understand. Tomorrow I'll probably be better.0 -
Worry the Pooh- I totally get it. I have only begun Tamoxifen this month and am ramping up slowly but I already feel some of the things you are describing. Good days and bad days. Vent all you want....and yes, hopefully tomorrow will be a much brighter day for you!!!
Hugs!
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worrythepooh I went off my tamoxifen However I still feel periods of blah which I'm sure is SAD, since I have that every winter. So now I'm worried I stopped when the side effects weren't real and it was just SAD. But ya know, I still choose to wait and stay off of because I have some good days now which is better than no good days onit. Not feeling like a zombie is a good thing! But to each their own - it is all dependent on so many things within each person, it's all not a guarantee. Good luck on your decision processing.
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Togethertolearn - I wanted to share that I picked up one of those light boxes for treating SAD. I have been on tamoxifen for 19 months now and suffer from the depressive effects of the medication. I cannot take an anti depressant because I am an intermediate metabolizer, so Onc says no. I had noticed when I went to Florida for a quick trip that my mood lifted significantly with the sunshine. So when I came home I purchased a light box at Bed Bath and Beyond. So far I am working my way up to 30 minutes a day and I truly believe it is helping me. So maybe try a light box? It was $80 but I think you can purchase a smaller one online at Amazon.
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rah2464 thanks for the idea, I do have a light box and I just had my vitamins tested, which came out fine. My body seems to just really really need actualsun! Midwest living doesn't allow that for several months
The days are getting longer so the sun should be coming...0 -
Hello all,
I’m starting back on tamoxifen today after being off since December 23rd. I had started originally on December 9th 20 mg but had severe hip pain so oncologist told me to stop and did xrays and a bone scan. There was no sign of metastasis. In that time frame I also had a bench mark bone density scan which revealed I have osteoporosis. I am 51 years old and peri menopausal. The original plan was 3 years of tamoxifen and then 2 years of amortase inhibitor. That plan is now changed to tamoxifen only due to potential bone loss on AI. I was only on tamoxifen for two weeks and I started having 13-14 hot flashes a day in week three. I was very nervous about restarting, but my oncologist said let’s start at 10mg and gave me some homeopathic medicine called Acteane to try to see if it helps with side effects. We will meet in 6 weeks to see how it’s going and if we ramp up to 20mg.
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I'd love to hear how the Aceteane works. I'm staying at 10 mg for now due to side effect of turning into a zombie at higher dosage
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DorothyB,
I will keep you posted.
Oncologist also suggested black cohosh for help with side effects. It seems there are two schools of thought on this. 0 -
i went through the same thing. Heard about Gabapentin awhile back on one of these threads. I take 300mg before I go to bed and sometimes 300mg more if I wake up hot in the middle of the night. As a 3rd grade teacher, I just could not function from that lack of sleep and being 52. All I did was ask for it and got it right away. I tried all the herbs and they did not kick it. Hope this helps you. I sweat so much less during the day too.
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Polkadot1 and Togethertolearn thank you for your replies.
I also am prone to SAD in winter, but I am wondering if I have it also even though it's Summer here, because the weather has not been like normal Summertime with all the bush fires, the sky is most often grey and dull due to all the smoke.0 -
I am going to look into this, thanks! I actually have a room air conditioner in our 2nd floor bedroom set at 64 degrees right now. It is 32 degrees outside. Like my hubby said, maybe we should just open a window:)
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Well I was driving down the road a few days ago with both front windows down in the car hot flashing away. It was 25 degrees outside haha
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worrythepooh I think that could be possible because SAD happens because direct sunlight is hidden for an extended period of time (because of a change in season). Although yours wouldn't be a seasonal reason, it could be a circumstance reason for sure. If you are not getting direct sunlight, even through a window, your body may be experiencing the blahs from that. Very likely. Do you notice that in others around you? I can tell a difference at school on gray days vs sunny ones, it's that pronounced. Not that it'll make you feel better, but you'll know you're not alone.
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Hi Y'all. I've only been on tamoxifen for a few months so far. Not too bad, but definitely noticing some SEs. Hot flashes are weird to experience, because I'm usually chilly. And I tend to hit a wall of tiredness during the day. That's becoming more common, so I'll need to monitor that one.
I've also had some sporadic anxiety attacks. Fortunately, I was able to recognize the anxiety for what it was, my body doing acting like it was in fight or flight even though there was nothing to fight or fly from. The most frustrating part of the anxiety is that my oncologist didn't seem to understand at all what I was talking about when I described being able to parse out the difference between feeling fear as opposed to actually being afraid. He looked at me with no comprehension at all. Then he offered to write a prescription for some flavor of anti-anxiety drug. Unfortunately, it'd be a daily dose with who knows what additional SEs to dump on top of what I'm already experiencing. That's not worth it for attacks that happen less than once a month, and that I'm able to recognize and not be overwhelmed by.
My oncologist's reactions really made me appreciate how valuable it is to actually be heard by your medical care team. When a doc doesn't listen to you or doesn't bother to try to understand what you're telling them, it's really aggravating. And almost all the other docs, nurses, and specialists who have worked with my cancer have been great about asking, listening to, and humanizing me. It was such a derailing moment when I saw the utterly disengaged expression on his face at our last appointment.
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DorothyB thank you for the list! So helpful! Best wishes to all. We're in this together.
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I started tamoxifen about a week ago. I am feeling nauseous all day long, waking up at night and overall bodyache. I can't imagine everyday is going to be like this from now on
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Neeli,
I think you will find that everyday is not going to be like what you are currently feeling. I started out with the nausea, but that passed with some help from Omperazole. Since that time I have experienced quite a few other side effects that come and then they go. As I reflect back over the past year, things have continued to get more tolerable, although I won't say it has been easy. My suggestion is to do what you need to do to combat each side effect and try to remember it is for a finite, but unknowable, amount of time. I just wish I could remember that, because I am still worn done by the experience from time to time, but it is much better now than during the first six months.
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Finding optimism - Do you remember for how long you had to take Omperazole? was it for months?
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Hello fellow warriors!
I started Tamoxifen on October 14th after my treatment. I have had various side effects like a lot of you as well as many concerns. When going through my diagnosis and decision making I started an anti depressant, lexapro, which I was given by my PCP and am continuing to be on as it is one that does help the SE's of tamoxifen. I have the hot flashes and was told to take evening primrose, 3000 mg a day. I have found that it helps with the hot flashes. I of course have had a couple while lecturing my college courses but that is life.
I have nausea daily, mainly in the morning. Some days are worse then others. My MO said it was similar to morning sickness as if pregnant, my youngest daughter is 21 so I did not think that would happen again. It is nice to hear that it settles. I have a supply of ginger chews and drink ginger tea every day, of course that is after my coffee. That settles my stomach some.
I do get the aches as some of you have said, creaks and cracks. I have to stretch and massage machine a lot.
The other thing I think helps with the SE's is exercising of some sort as many days as I can. I like being active so that is something that helps me mentally as well and gets in the outdoors and the sun. I run, play tennis, spin class, and yoga. All seem helpful. I am currently training for a 15K that is February 8th, I am doing this just to show cancer will not win, I will win and can have some control of things. This is a stretch for me as I have never run more than a 10K. It has really been my therapy to run and to get out a walk.
You are all troopers and will get through it. I am grateful to have this board to read and learn from each of you.
Have a great week.
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Thanks Togethertolearn, yes that's probably the reason, the grey days have been plentiful!
Neeli, I really hope the nausea passes soon for you!. I didn't get nausea when I started on it, but had a marked increase in depression and flat mood for the first few weeks.
The one thing I have found which has really helped counteract side effects is exercise. I know that's not exactly headline news...most people find it helps. I'm glad I now enjoy exercise and it makes me feel more upbeat!0 -
I’m new to this thread.... learning a lot here....
I’m wondering if anyone is ER+/PR- that has foregone Tamoxifen and had NED...I guess I’m trying to say,
“ do I really need it?”
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I tried it, had unacceptable side effects and am not taking it. Time will tell regarding NED.
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Any of you got your period while on tamoxifen? i started tamoxifen about 8 days ago and i am having vaginal bleeding since yesterday.
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Neeli - tamoxifen has a long half-life, so if you would normally be having a period, it could be that it isn't strong enough in your system to stop the periods yet.
I am post-menopausal and I am to call my gyn if I have any bleeding at all.0
