Bottle 'o Tamoxifen

Artista928

If you have any post menopausal bleeding or even spotting, you need to be worked in. Last week I had bleeding, co days barely noticeable spotting, then again all with the pms discomfort I used to have. I've been postmenopausal for 5.5 years.

It can be from a few things, fibroids that I have, cancer, tamoxifen.... point is you don't wait to be seen even if symptoms stop like it mostly did mon and tues. Receptionist had me may 26 due to covid staggering appts. Called again and another gal said no, come in tomorrow. So on Thurs I had pap, cervical polyp removed and endometrial biopsy done. First was the transvaginal pelvic ultrasound which with my fibroids, not much could be seen. GL. I find out my results this week.

1ofHissheep

Hi,

I have not been on this site since trying to make decisions regarding my breast cancer treatment in January 2018. I had estrogen positive, HER2 positive, progesterone negative Invasive lobular carcinoma in my R breast for which I had a lumpectomy, followed by chemotherapy, radiation and tamoxifen. I started the tamoxifen June 2018. Overall I had done pretty well on it with hot flashes being my biggest deal. I gained about 15# overall. In the past few months I have had back pain/ spasms when getting up out of bed and sometimes just with position changes. It feels worse in bed than when I'm up during the day. They did a PET scan to rule out cancer which thankfully did. More recently I am having pain, more at night than during the day in all my body joints. Ibuprofen helps quite a bit but I know that is hard on the body if taken too often. Now just tonight when simply washing dishes, I suddenly got sharp pains in my left hand middle and pointer finger joints and they suddenly feel very stiff and hurt like crazy when I straighten all the way. I looked up Tamoxifen here in this chat and it seems that joint pain is pretty common with this drug.

I'm 2 years into the recommended 5. I guess I'm wondering if once a person is off this (hopefully I can stay on through the recommended course) but does this pain go away too or is the medicine causing irreversible joint damage/arthritis?

I'm so sorry for you having such trouble with how you are feeling, the weight gain, stiffness, pain. Makes me wonder what is in store the longer I am on this. They are considering changing me to an aromatase inhibitor ( I am 58 - was premenopausal when diagnosed but had no periods since chemo and tamoxifen was started) after the 2 year time frame on tamoxifen (end of June 2020. What I read on this site though is that has a greater percentage of women with joint problems.

I also am struggling with low neutrophils and total white blood cell count even this far out. It was up last fall in normal range. I'm off work now for 1 1/2 months (I work in a hospital as an O.T.) due to COVID 19 and risk of exposure while being immune compromised.

So I'm exercising, stretching, working on abdominal exercises and walking to try to improve all areas of concern. A week ago I started the Whole30 diet which I did for a month just a few months prior to cancer diagnosis. It is supposed to help reduce systemic inflammation and therefore help with immunity. I'm very curious if my joint pain will improve. I'll let you know. Who knew there would be these post chemo/surgery/radiation ongoing issues!?

molliefish

runor I’m going to leave this right here.

I felt just like this. I was over weight, on the verge of buying new clothes, felt fat and useless.

Was it tamoxifen..? Prolly.

Was it me...?... most definitely

Could I make the change I needed to make? Yes.

It was tough, a long road 18 months so far but one day I decided I was ready, and it was time for me.

Not my husband, my kids, my dogs or anyone else. Time for me.

I started out really slow. 30-35 mins a day exercise, watched every thing I ate and recorded what I ate.

When diagnosed with cancer in2015 I was 140lb give or take. In 2018 I hit 163 lbs. today I float around 138-140lbs. I take .5 tam every second day. my hair stopped falling out Mar 21.

Sometimes we have to concentrate on us. Once I started to focus on my health and well being I was able to adjust my days so that after putting me first I had time for everyone/everything else.

It’s not easy, it will take time. YOU Are worth the time and the effort. YOU really are. Trust me on this.

runor

Mollie, I am giving you a hug of gratitude. It is very hard to be motivated when looking at this ...hot mess, literally, a hotflashing, hair falling, beard growing, leg cramping fat mess. Motivation to care is in short supply. But I know you are right. I know you are.

I should recall from past posts (but do not, sorry, tamox memory trouble) tell me more about this .5 mg daily dose. Did I read that correctly? You must get 10 mg tablets and cut them in half. I cannot imagine trying to cut a 20mg tablet into 4 pieces. Mine would shatter into powder. Are you on this dose level as a permanent thing? Or is this just a short term dosage while you get your hair to grow and get your bikini body in shape? Are you doing this with docs blessing or did you go rogue? My 10 mg most days and 20 mg Sunday and Wednesday are NOT with my doc's blessings. I did not ask his permission, I told him what I was doing and why. I would like to know more about this. 

BCat40

Runor, did you have the oncotype test run on your tumor specimen? Based on the score, you can determine what percent benefit the drug is offering you in terms of risk reduction, which might help you decide whether you wish to continue or not.

Artista928

I thought the oncotype score helps figure out if chemo would be of use, not antihormonals.

molliefish

re the 5 mags, I cut the 20 mg tab in half and take a half a tablet every other day, no blessings from the MO just a tacit acknowledgement that we don’t know an acceptable minimum dose.

I know it is hard to be motivated, and when it is time, if it is time you will know. Be kind to you, this is a shitshow none of us asked for.

Hang in sister. You can do this.

BCat40

Arista, technically, yes, but the test gives you the recurrence rate *with* antihormonals, and you can mathematically back into what percent reduction you get without them by applying the efficacy rate of the drugs to your recurrence rate. If she posts her numbers I can calculate.

In my case, my node-negative Oncotype was 20, which corresponds to a 6% distant recurrence rate risk over 9 years w/ the use of tamoxifen. Tamoxifen gives an approximately 30% reduction in distant recurrences. That means the 6% corresponds to 70% of my total recurrence risk. .7x = 6, so x, total recurrence risk rate w/ no Tamox is 8.57%. 8.57 - 6= 2.57, which means the benefit to me of taking Tamox is a 2.57% reduction in my distant recurrence risk.

runor

BCat40, my Oncoscore is 11. Doc said chemo would do far more harm than good.

Molliefish, that is exactly what I said to my doc, that the best lowest dose has never been determined and he said, you're right, those studies were never done. So I take 10 mg most days and a full 20 on Wed and Sun.

Today was Mother's Day and I allowed a camera to be pointed at me with my mother. Oh my god. Molliefish, the time is NOW!

BCat40

Runor, what percent did the score correspond to in terms of a 9 year distant recurrence rate? It should give you a percent "with TAM alone," then I can calculate for you.

runor

My report says 10 year risk of distant recurrence Tam alone 7%  then in brackets (95% Cl: 5%-10%) I am not sure what that refers to.

BCat40

Hi Runor, the 95% CI 5-10% means that they are giving you this prediction within what they deem to be a 95% accuracy rate, with a "confidence interval" give or take 5-10%. It basically just means that they have a high level confidence in the prediction but it can never be perfect.'

If your test is telling you that you have a 7% chance of distant recurrence with TAM alone, and we know that TAM reduces distant recurrences by ~30% to calculate your risk of recurrence without TAM, we do .7x = 7, which is easy math of 10% total risk of distant recurrence without TAM. TAM reduces that risk 30% of 10%, which is 3%.

So the absolute benefit in risk reduction on a distant recurrence you are getting from taking TAM is 3%.

Note that TAM also separately reduces the risk of a local recurrence (or new breast cancer) as well, though local recurrences are less scary than distant recurrences as they are more easily treatable.

runor

Thank you, BCat40. I wish they'd put these reports and numbers into some translation that we can understand.  You've got some mad math skillzzz!

BCat40

Runor, Beesie helped me figure out the math on my own so I just reapplies the skills. :

molliefish

Runor I want you to know that YOU were my motivation to accept the I could reduce my dosage. I dropped it to 10 mg every other day because of your research. Then I was out for lunch with my Mom and she said, why don’t you just reduce again and see what happens? My mom is a retired RPN so she has a good knowledge of the medical world. You can always increase it again she said. She was right. Thank YOU Runor. Thank You for being tenacious and honest and here. N

BlueGirlRedState

runor - do not give up on yourself and do not continue beating yourself up. You are a beautiful person and can work through this. Have you talked to your oncologist about alternatives? I have seen posters from time to time looking for BC candidates to participate in non-invasive weight/nutrition/sleep/ etc studies. I have fought weight gain/loss/regain for a long time. At one time I took tamoxifen, and now Arimidex and Ibrance. Years ago before BC, I found weight watchers very helpful. The key was a great group leader, we spent most of the time laughing, and less time on "lessons". Also it was an "at work" group, so very easy to attend. The couple of times she had a substitute, I realized I would not be as successful with the substitutes. I am finding a journal to track what I eat, how much water I'm drinking, activity/exercise really useful, if I use it and am honest. But it does take time and is easy to be obsessive. I am using "Body Minder Workout and Exercise Journal, a fitness diary. IT also has some pages with calorie stuff, exercise info etc. I am trying to find an easy way to customize it.

Momgr5

I have been on tamoxifen for 3weeks. Most noticeable side effect is terrible acne break out and my face feels burnt. First Dr. I talked to said I had Folliculitis. She put me on docycline. Got so sick to my stomach. Today I called my internal med Dr. she said she would contact oncologist immediately for me because severe complications can arise, such as Stephan-Johnson disease. Gosh I looked that up and no way will I continue tamoxifen if my face looked like that. Anyone have a problem with acne. It’s mostly my forehead. I am past menopause. This break out is crazy. I think it’s just hormones adjusting or I sure hope. Anyone else experience this? A 66 year old should not have acn

Veeder14

HI Momgr5,

I have been having acne since starting tamoxifen and I don’t like it at all. My dermatologist has prescribed me Clindamayacin liquid that I put on the break outs. It’s a topical antibiotic and seems to dry it up but it doesn’t prevent it. I’ve got acne on my legs if working out in a hot climate and my face. I never even had acne when I was a teen. This is annoying

runor

Molliefish, thank you.  I thought of you today as I hoofed it around a park, none of which was level, over rocky, steep ground and my ass felt like two fat pillows tied to my thighs and I thought two things at once 1) how did I become this winded, sweating person and 2) I am obviously going to drop dead on this happy little jaunt through the woods. BUt I did it and I realize I need to push myself MORE to just WALK and flex those joints that suddenly seem arthritic and unwilling.

BCat40, Beesie also has some mad math skillz! She can often make sense of things when no one else can. 

BlueGirlRed, I don't know that I'm a beautiful person, but I am not in love with myself. Today my daughter snapped a selfi of the two of us, one of only a few in existence. I avoid a camera like the plague. I have no sense of humour about how I look. The last thing I want to see is my own face. As I viewed the pic on FB I realized that my mirror has been lying to me. I look pretty bad in the mirror but out in the daylight covered in sweat OH MY GOD SHOOT ME NOW! Yeah. It was a downer. Like when I see old school friends and think, wow, did she get old - as if I look like I did when I graduated. NOT!

runor

BCat40, I am curious. You say your Oncotype was 20, which represents a 6% recurrence rate (over 9 years wit tamoxifen). My Oncotype was 11, lower than yours, but I showed a 7% recurrence risk, higher than yours. This does not make sense to me. I always thought that as the number goes up,  your recurrence risk rises accordingly. BUt our two numbers, you with 20 score and 6% risk and me with 11 score and 7% risk, do not support my understanding. I am going to have to investigate this further.  

BCat40

Runor, I noticed this as well with my mom's score. She had hers done in 2015 and had a 13, which was an 8% recurrence risk, whereas mine was 20 with a 6% risk. Also for node negative. I think the risk percentages have been going down over the past few years as they collect more data. They also changed it to say "risk with Tam or AI" instead of just "risk with Tam."

Momgr5

Hi Veeder14. Thank you for your response I would never have thought of having major acne at 66. This past weekend I contacted tele doc through my clinic. She thought it was folliculitis and prescribed doxycycline. Two doses and I had to stop, I got so sick. On Monday I contacted my primary physician and she said she would contact my oncologist immediately because there is a disease call Stephan-Johnson disease. I really don’t think that is what this is. Googling that made me remember friends saying never gogglesymptom. Since Monday I have not heard from my oncologist. For very one that heals, another one shows up. I started using Witch Hazel which seems to help dry. I probably will schedule appointment with dermatologist. This is the only side effect I have experienced so far. I praying this is all I get for a side effect. With be starting my 5 th week of Tammy on Friday. Thank you for your response.

rlws

I started 20mg of tamxoifen in October. I also need to drink way more water than I ever thought. I also drink a low sugar electrolyte drink every day and some magnesium. I struggle with getting cramps at night, some aches and pains. At first I did have upset stomach daily and some fatigue. That has gotten better, drank a lot of ginger tea! I try to get some exercise and stretching. Tough road, glad I am not alone in this journey!

BlueGirlRedState

rlws - I no longer take tamoxifen, but was on it twice, now take Ibrance and Arimidex (3rd time BC for me). I found magnesium really helpful for cramps in calf muscles. The cramps could happen at any time (AM/PM, active/relaxing/falling asleep, stretching, walking/hiking etc) and were usually painful. There are lots of formulations, and some seem to work better for some people than others. I still take Mg. I switched from "citrate" to glycinate after someone posted that they absorbed it better. I tried "malate" for a while after reading that athletes seemed to prefer it, but went back to glycinate. Staying hydrated, active, stretching, also help

Lezza13

rlws Just a thought: you might want to take it with food. I drink Ginger tea as well. I do take chelated magnesium nightly for leg cramps. Seems to help. Just have to figure how to deal with the hot flashes. I agree about staying hydrated and stretching and walking. Short walks and yoga seem to help.

molliefish

yay! You did it!

TrmTab

I just realized I had passed my first year on this...my main side effect is weight gain, right in the gut +17 lbs in one year, ugh!

My primary has actually questioned my MO if I should stop taking this given this side effect, wow.

I switched to T after 3 years on Arimidex, so I am only scheduled for 2 years of T for the total of 5 years of treatment...I can't afford another year of +17, I will burst like one of those kids in Willy Wanka.

Cricketdog

Hello, ladies! Looks like I will be joining you all in a couple of weeks (only because I begged my MO to push out the start date of tamoxifen). I cold capped during chemo but have a giant bald patch on the top of my head, which has just started sprouting hair. I wanted to give it a chance before killing it off again. I've been reading portions of this thread over the last couple of weeks. I am really hoping I don't get the negative side effects. I did not have Oncotype testing, I had Mammaprint instead, which showed me as high risk. I've had ob/gyn issues just about all my life (heavy bleeding, fibroids, IVF, etc.). That part scares me a lot. MO tells me I'll have annual checkups that will measure my uterine lining. Do your ob/gyns do that with you?

Some of the SEs include nausea and weight loss but it appears that most on the medication actually gain weight. I hate how the chemo has changed my body already. I weigh exactly what I did when I started all of this but my stomach and inner thighs are way larger than before, which means I've lost muscle and gained fat. I've been exercising (tennis) 3x a week for the last couple of weeks and it takes every ounce of energy to play for an hour. It's been 5 weeks since my last chemo treatment. MO says to give it time. It seems so odd to me that being overweight means a woman is at higher risk for BC yet we are filled with steroids and medications that contribute horribly to weight gain.

Runor, you need to start a blog or do stand up comedy. You are very funny. I'm sorry you are suffering so horribly but glad you seem to find the humor in things, too.

Thanks to each of you for sharing your experiences on this board.

BCat40

Cricketdog, are you pre- or post-menopausal? Curious whether your MO offered you the option of an aromatase inhibitor instead of tamoxifen given your gyn issues?

Cricketdog

BCCat - I was premenopausal prior to chemo but it appears to have disrupted that, slowly. I'm 50. I asked the MO to run my hormone levels yesterday to see where I am hormonally. Are you on an AI? I've read the side effects from those can be pretty bad, too.