Bottle o Tamoxifen
Comments
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Lezza13, funny you should say accupuncture because I am going to be involved in a study where I get accupuncture twice a week for 10 weeks. Hopefully it will help!
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Lewtry I wish I could be part of that study! I hope it will. I have an appointment this week;. Best of luck.
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Today is the start of my second year in Tamoxifen. Made it through the first year and hoping for the best as I move along. It is so hard to tell what are side effects and what are normal changes as I age. Actually hoping some are SEs so there is hope they will improve in a few years!I
Lewhy, I'll be very interested in learning about the acupuncture. I know some folks have found it to be helpful-- may that be the case for you.
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Lewhy - One of the really helpful comments I found on these boards (mostly from Bottle of Tamoxifen - I think I read every page when a friend first recommended this site) was that magnesium oxide is constipating, but magnesium glycinate is not. I switched and it made a *huge* difference in my life. The rest of my diet includes having 1/2 - 1 c blackberries or other berries with oatmeal every day (sometimes have low-fat yoghurt instead of oatmeal), and a couple of handfuls of unsalted dry roasted almonds each day. I'm not vegan or vegetarian, but I have reduced my red meat, and eat chicken and fish. I try to increase my other fruits and veggies, increase H2O, but the magnesium change probably made the biggest difference.
Another suggestion from the boards was 500 mg ginger capsules, 1 each evening. I already had been taking 37.5 mg venlafaxine for night sweats and hot flashes, and was still getting night sweats. The 500 mg ginger knocked them out! Yippee! I take my tamoxifen (5 mg) in the morning.
Best wishes to you. 🌺
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Beverantx I do like acupuncture. I do it for trocanter bursitis. Glad to hear you started your 2nd year. I am coming up on my 7th so hang in there!
Rae7200 I saw a study online at Mayo about magnesium glycinate for hot flashes. I did not join the study but starting taking it to see if it helps with hot flashes. I am hoping it does. I will try adding more ginger to my diet. Thanks for the suggestions.
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stress. I am stressed to the and sometime spend an hour or 2 trying to get back to sleep after waking up at 300 to pee. It's not uncommon and really quite annoying. Just a thought for hubs, n
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Thanks for the ginger tip! I am sitting in the accupuncture waiting room right now and feel like I need a shower! I really cannot stand these hot flashes. I will try all recomendations!
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Lewhy Please let us know how the accupuncture went. I feel you literally about those damn hot flashes.
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Hi everyone, had my first accupuncture appointment today. It was uneventful, except for a small bruise on my wrist. 19 more to go. They told me if it works it usually works for a while after you stop. I have been keeping a hot flash diary so I will see if they get better!
Rae7200, thanks for the magnesium tip. I have the wrong one! That might explain the problem I have had this week, lol!
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My oncologist said I should come off the tamoxifen for a month. Then she would try to titrate me back up, along with exploring options with a psychiatry consult for provigil or something like it. She thinks my risk of metastasis in ten years without the tamoxifen is high single digits to low teens, which she says is low. But also reminds me that I'm young and she's also thinking of risks 20, 30, 40 years down the road. Also reminds me that I have the kind of cancer that's most responsive to hormone therapy. I'm also reminding myself that my mother died of estrogen positive breast cancer when she was about 14 years older than I am now. Sigh.
Well, I'll be happy to be off it for a month! And hope that maybe the titrating up or the psychiatric support will make it bearable.
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Salamandra, enjoy your month off! Did your MO mention just staying on a 10mg dose and seeing how you do with that?
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So this doesn't really belong in this thread, but I find you all to be accepting and kind in your responses.And understanding these two path reports will help me with this upcoming tamoxifen decision.
I'm confused about two differences in my path reports from my biopsy and my lumpectomy. I believe the biopsy report has been updated as a result of the MammaPrint test, but I'm not positive.
Here's the first difference:
- The biopsy report says Lymphovascular invasion: Present.
- The lumpectomy report says Lymphovascular invasion: Absent.
Here's the second difference:
- The biopsy report says I'm scored at a 6 (Tubule formation: Score 3, Nuclear pleomorphism: Score 2, Mitotic rate: Score 1).
- The lumpectomy report says a 7 (Tubule formation: Score 3, Nuclear grade: Score 3, Mitotic rate: Score 1).
I'm assuming that nuclear pleomorphism and nuclear grade are the same thing, but perhaps that's not the case? Both reports say grade 2, so no difference there.
Anyway, I would love to know if you guys have seen similar differences in your path reports.
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Strongly support the going on slowly to minimize SEs.
I started at 1/2 a 10mg pill everyother day for two weeks, then 1/2 a pill everyday for 3 weeks...today, saw my first full 10mg pill and will take 5mg/10mg everyother day for a couple of weeks, etc. Letting the body adjust to the drug and only moving to a fuller dose when the SEs of the new dose start to back off/are accepted by the rest of my body.
TT
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EDJ3 -> I didn't have any differences between my biopsy and my LX other than they discovered DCIS in addition to the already known IDC. Have you tried posting in the "Interpreting Your Report" thread? DJMammo can be extremely helpful. He might have some insight that most of us might not have, as he's a licensed Radiologist. Also have you asked your MO about the differences? If these were my reports, esp the vascular difference, I would want answers too. Good luck.
Salamandra -> I don't have anything informational to add, but I do incredibly sympathasize with the dilema you're struggling with. We are both young with many years to go. While your mother did not survive her cancer, that doesn't mean you won't. I'm beyond sorry for your loss.
My mother survived her cancer, that doesn't mean I will. Just a friendly reminder to keep the idea in your mind that every cancer is different, even if we share genetics. We will each have our own story. Sending you extra hugs and I'm right there with you in the scary METs risks (mine high 20s -35%). Ugggh. I feel a Terminator quote coming on "The future is not set. There is no fate but what we make for ourselves.". Please excuse the nerd in me, she couldn't resist. But seriously, hang in there. Sending awesome "RESET" vibes to you while you take a month off. Some women have luck starting off again after a break. Maybe this is just what you need. 
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Hi Edj3- My reports were also slightly different. The details you got dont
show up on my path report- mine is
a written description plus final number
( eg: some tubule formation etc therefore
between stage 1-2. on biopsy , )...yet
once the whole mass is removed
and examined- the true details and
full picture presents itself- i was told
that biopsies/screenings come pretty close
to true deets, but only final pathology
gives the final reality. So in my case
my tumour was actually 7 mm not 8mm
and i also had 1.5 cm of dcis- and grade, stagewere both 1. er: 90 %...a big
shrug by my BS that with my age,
weight, etc..VERY slim chance
of recurrence / mets....and only
a small benefit with the meds...
bit the bullet and took first tamoxifin
last nite- in your case- it puzzles
me that it says present for lymphatic
invasion on biopsy report- because
isnt that that a sentinel node determination?( which i believe is usually removed at surgery time ?).. did
they also biopsy the nodes ? i just
havent heard of that-spoonies suggestion
is good re: understanding path report
link- i may just check that out myself-
mainly cos i have always windered
why not one doc seems tocare less
about the dcis that was with tumour.
actually, my ro did tellme that most
tumours come out eith that mixedin,
because tumours “ spring” from
that stuff, so to speak- like thats
where ibc evolves from-
anyways- it seems your final
path report would be the one to say
is definitive- i know it seems awkward-
like why was my biopsy giving
me between stage 1-2...
yet final path came out a 1.
That fact alone nagged at me, snd spurred me to at least try tamoxifin. Are you
pre menopausal?..It is far safer
to tske it if you are in that age bracket
( for uterine issues)- its all tough-
making these decisions- to be at peace
eith the right decision-
docs are always agog at the fact i came in to this at my age with no meds
or health issues and i rarely
take even an advil- so it puts me in
a funk when i think of rocking the boat
now with tamoxifin- i remind myself
this isnt like recovering from a broken
arm or a root canal- its a dangerous
and wily beast that i just dont trust-
so gonna give it a shot- if side effects
bug me too much- i will deal with it
then- good luck and keep us posted
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Salamandra, as I understand it, titrating means to adjust the dosage of a med to get the benefit while avoiding the side effects. This means you may forever stay on a lower dosage. If your doc is saying she wants to titrate you UP, what she's actually saying is she wants you on the full dosage, just not all at once. These two things are not the same. One has the WORKING (most tolerable while still effective) dose as the end goal, the other has the WHOLE dose as an end goal. Which is it that your onc (and you) are aiming for? If she's saying she will ease you in to the 20mg dose over a few weeks then she's not titrating you. She's dosing you.
You have a low Oncoscore. That's a good thing! You are young, that is a complicating factor (in my opinion) as young women seem to be hit harder by cancer. You have a lot of life you can expect to live still, so this is also a consideration. If you were 92 when diagnosed your feelings about treatment might be understandably more relaxed. (or not!). But tamox can also cause one to feel like they are going crazy and their body is breaking down. The benefits of tamox can come at a high price. But you also feel exposed and vulnerable if you take nothing at all. So what is a person to do?
I thought about all of this, my risk, my age, that I wanted some hope of not getting mets but that I didn't want to spend the next 5 years feeling like hell. I had to weigh and balance this out with a treatment plan that I felt I was likely to stick to. I know myself. I know I will try and try and try something but then I reach a point where I throw up my hands and say done, out, not playing this game anymore, the answer is no, I am finished with this shit. I didn't want to do that. So to avoid that I SELF decided on the quasi half dosing I'm doing.
Did the half dosing avoid side effects? NO! I have had the full range of effects AND, it turns out, the added effect of becoming highly reactive to sunlight which turns me almost instantly lobster red. Not a burn, an extreme photosensitivity. The joint pain was ferocious as were the hot flashes and hair falling out. But the pain was only in bed at night and I was fine during the day, so that was okay to live with. Not great, but I was okay with it. I put hair catchers in all the drains so the plumbing wasn't at risk of clogging, so that was okay. The leg cramps have been better since I changed my pill to night taking instead of morning taking. I still get killer cramps, but not as often. And even half a dose stopped my periods absolutely, instantly and without even a trace.
Your doctor might imply that if you don't take the FULL dose you will not get the FULL benefit and there is simply NO research to support that claim. Your doc has no clear guidelines on how much steady state tamox you need in your system to keep you safe from recurrence. The bottom line : this comes down to you and what kind of risk you are comfortable taking. Do you want to be more cautious with your health? Then you might have to suck it up and take the full dose to feel you are doing everything you can. Are you more concerned with living without undue physical misery? Then you might have to live with your doc's disapproval and take 10 mg a day, or whatever you decide on. But ultimately the decision you make is up to you.
If you take half a dose, can the cancer come back? Yes.
If you take the full dose, can the cancer come back? Yes.
Those two questions were the truths that I needed to consider. Where in the middle was I willing to stand? It is not a striaght forward issue. I wish you luck and peace with whatever you decide.
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Edj3-
Yes, I had three different pathology results . Every time someone new looked at it, it changed slightly. My advice- get a second opinion if it concerns you. You can have your slides sent somewhere else to get another set of eyes on it. It amazes me how subjective it all is! I went from grade 2 at biopsy to grade 1. I went from no LVI to having LVI. I went from node negative to node positive. Then From macromets to micromets. We all want difinitive answers, but all I learned is that I was on the cusp of everything!
If you’re treatment is the same regardless, then don’t worry about it. That node got me rads, and almost chemo, except I fought for Oncotype. If you’re undecided, or you disagree with the proposed plan, get a second opinion.
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Hi All - Rae 7200 - thx for the info about Ginger for HOT Flashes - Mine are devastating. I have panic attacks they are so severe. So far I've tried Effexor, Oxybutinin, Gabapentin, and just picked up a script for Paxil. But like I've said, its NOT the Tamoxifen. I've been off of it for 3 months now. My hot flashes started the day after I stopped taking my Hormone Pills upon Dx. After Chemo they became unbearable.
Any other tricks of the trade to ease Hot Flashes please let us know!
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I guess I'm lucky. Started out with hot flashes now no more. Fatigue is my se.
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Rosabella -- How did you get rid of your HOT flashes! Do tell!
Today I got my hair cut SHORT - mini pixie so I can duck my whole head under the faucet with COLD water to ease my Hot Flashes. I can only think of one other place I can do this in public - Walmart. Ha.
This Evening I'm trying Paxil for the Hot Flashes - ANYBODY try this? Then I start back with Tamoxifen on July 1st. (5mg)
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OK I have what may be a stupid question for those of you taking tamoxifen who are also post-menopausal.
Menopause was super easy for me, seriously I blinked and missed it. I had a few warm flashes (very few); insomnia was bad but that was it.
If you are post-menopausal and now taking tamoxifen, are you experiencing more/less/the same amount of hot flashes?
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I didn't do anything. It went away about a year ago. I'm on the at least 10 year plan since ai are horrible ses. I'll take fatigue over hot flushes though.
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edj3, I am postmenopausal and just started my second year on Tamoxifen. I've had a few mild hot flashes but am more often cold than hot. Hot flashes are more likely if I am out in Texas summer heat and humidity. My other SEs have been tolerable and tend to come and go, thank goodness. This is not to say any one else will have the same experience! Best wishes to you, let us know.
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I agree with Beaverntx, the side effects seem to come and go. The first several months the joint pain was really bad but that eased off. However, the hair falling out, plugging the shower, clogging the dryer lint trap, all over the floor, IN OUR FOOD! Lord! I warn people before they eat here, you're probably going to find a hair in your lasagna. I have not yet resorted to wearing a hair net in the kitchen, but it's close!
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I had a hysterectomy at the age of 36. Instant unbearable hot flashes, so OBGYN put me on Estrace Hormone Pills. Zero Hot Flashes until I was dx June 2017 - I stopped my Hormone pills immediately, and instant tolerable Hot Flashes. Once Chemo ended - my Hot Flashes became unbearable. Started on Arimidex which was intolerable, then started Tamoxifen, and Hot Flashes became worse. Even tho I stopped Tamoxifen 3 months ago - no relief with Hot Flashes. They are so severe I have Panic attacks.
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I'm post menopausal and on Tamoxifen (end of 4th month) plus had a hysterectomy/ovary removal and have yet to have a hot flash. Menopause was easy and I've never had hot flashes so hope I don't get them. I'm also cold a lot even in warm temperatures. Weird. I'm having enough problems with stomach pain and lack of sleep.
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My aunt has wicked hot flashes. Her sister has being cold issues. Mom is in the middle. I can get warm but I've always ran warmer than normal .
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edj3 I was post menopausal when I started tamox, had a very easy menopause in physical terms, no hot flashes. But I did have insomnia, anxiety and depression about the same time, took antidepressants for a couple of years, then was fine again. Then when I started tamoxifen, within a couple of weeks I was a complete wreck emotionally, couldn't sleep, couldn't stop crying, sometimes couldn't put one foot in front of the other. So now I take mirtazapine, which has put me back on an even keel. To be honest, I don't even know that the tamoxifen was to blame, it wasn't exactly a great time in my life right then. Apart from that, I've never had any side effects from the tamoxifen that I know of.
I was looking up some stuff about being a poor metabolizer of CYP2D6. I don't know for sure whether I'm a poor metabolizer but I did read that that is the same pathway for metabolizing codeine and opiates. And a few years ago I was told I don't metabolize codeine. It just doesn't work on me, no painkilling effect, no sleepiness, no nausea. And the Oramorph I had after surgery had no effect either. So I wonder if being a poor metabolizer of opiates is a marker for being a poor metabolizer of tamoxifen? In which case, it's probably doing me no damn good anyway.
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Dizzyee I had the genetic testing completed and I am an intermediate metabolizer of the CYP2D6 pathway. I remember that opiates and codeine were also listed as drugs that I would not metabolize efficiently. It was a pretty long list of drugs, including many acid suppressors. My MO feels like with the intermediate status perhaps I am getting an equivalent dose of 10 - 15 mg Tamoxifen vs the 20 so we stay on my current dose for another year, then switch to an AI if my bones can take it. She also has me be very careful and clear any other medication or vitamin I want to take to make sure there is no utilization of the CYP2D6 pathway. I am also careful not to miss a dose. So we will see if that works for me. There is still significant discussion on whether this testing is truly indicative of Tamoxifen efficacy so who the heck knows. I figure if I am getting a little bit in there maybe it is working.
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