Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Bottle o Tamoxifen

1…981982984986987…1022

Comments

  • rljes
    rljes Member Posts: 499
    edited April 2019

    Hi Everyone -

     Florida1234 - Before starting Tamoxifen (its now day 3) I was prescribed Ritalin to help with my extreme fatigue. Its helped a little bit - my eyes don't feel so heavy.  But I don't take much. 

     The SE's with Tamoxifen are headaches, nausea and more tired then my normal chronic tiredness.  I plan to stay at 5mg of Tamoxifen for a month then move up to 10mg. Probably up my Ritalin dose too.  I also take Magnesium, so far no leg cramps.  Sleeping has always been an issue, I have to get up and go to the bathroom at least 4 times a night. Hot Flashes are horrible. 

  • Dovehome
    Dovehome Member Posts: 41
    edited April 2019

    Hi all

    I''m in the St. Petersburg Florida area. I have a 6 month supply of tamoxifen and I no longer take the prescription. Anyone out there interested in buying? I'd like to get some money back on what I paid for as I had to pay cash and no insurance.

    I know this may be an unorthodox post and I will remove if not allowed since it is a prescription. I just didn't know where else to post.

  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    Dovehome, that's actually illegal to sell prescription drugs to those not on the prescription.


  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    I haven't been here in a while. I was doing well on tamoxifen for 5 months. It was the Teva brand. The last bottle was Advantis. Not sure if it's coincidence or if the new brand brought on bone and muscle pain. It's especially noticeable during the night. I was up for over 2 hours last night trying to find a comfortable position. Aleve doesn't touch it. I'm frustrated because the AIs all caused the same problem, but for 5 months I was pain free AND my cholesterol level dropped 40 points.

    Anyone experiencing anything similar?


    Nancy

  • Dovehome
    Dovehome Member Posts: 41
    edited April 2019

    right. If best to just give them to someone who has a prescription I don't know where or how to do that. I will have to do more research. I would imagine thatsomeone out there has a financial burden and I could help.

  • Mymomsgirl
    Mymomsgirl Member Posts: 95
    edited April 2019

    Salamandra have you tried taking 10mg in the morning and 10mg in the evening to get you full dose of 20mg? My MO was okay with me starting on 10 and then moving to twice a day. I would like to get to 20 once a day, but if I'm better on twice a day I'll stick to that. I did 2 weeks on 10 and just moved to twice a day on Wednesday so I feel the jury is still out.

  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    Talked to the pharmacist when I sent in a refill request and she assured me that they had the Teva brand. Picked up the prescription today and it's Mylan. No experience with it. The Avantis I think has caused the hip, thigh and knee pain I've been having.

    Anyone have any insight into SEs of the various manufacturers?

  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    Mymomsgirl, were the SEs better on the 10mg dose?

  • beaverntx
    beaverntx Member Posts: 2,962
    edited April 2019

    Nancy618, reading through the various threads related to Tamoxifen it has become apparent to me that SE s varying by manufacturer vary by individual. Some folks report doing much better with one manufacturer than with any others, others folks indicate their SEs don't seem to change. I've been taking Tamoxifen for 10 months now, have had pills from three different manufacturers and have been one of the lucky ones for whom the manufacturer doesn't seen to make a difference. Hoping the same for you!

  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    Beaverntx, I haven't been lucky. As I wrote, I'm having lots of hip, thigh and knee pain on Avantix that I didn't have on Teva. Today I picked up Mylan and hoping that the pain will go away.

  • beeline
    beeline Member Posts: 193
    edited April 2019

    Nancy, I'm on 10mg after having to stop entirely due to migraines. For me, the SE's are much less noticeable on 10mg, especially the joint pain that had me hobbling around like I'm 80 after only a month on the full dose. I have my MO's blessing on the 10mg for now...

    Edited to add - and of course the migraines are much better, too!

  • applejuice
    applejuice Member Posts: 49
    edited April 2019

    Mymomsgirl I am exactly on the same schedule as you, I started 10 mg once a day (at night before bed) and after two weeks moved to twice a day. Mine has imprint WPI 2232 by Watson Pharmaceuticals, Inc..It is too early to say how things are going but hope for the best!

  • beaverntx
    beaverntx Member Posts: 2,962
    edited April 2019

    Nancy, Fingers crossed that the Mylan works for you. My hip pain has been diagnosed as bursitis and arthritis, currently physical therapy is helping. My gi track doesn't deal well with very many consecutive days of NSAIDs or Tylenol. What works for me is Celebrex which is now a no no since it blocks the action of Tamoxifin. I haven't tried an AI because I've had osteoporosis for more than ten years and don't want to risk the bone weakening. It is always something, isn't it?



  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    That's good to know beeline! My horrible pain started 3 weeks after I started a different manufacturer. Got a new scrip yesterday and hoping things get back to normal but will discuss half doses with the onc if doesn't.

    Someone posted a link to Walkfit Platinum orthotics here. DO NOT order from that link. They'll tell you that included are THREE orthotics and post the price as 19.95 plus shipping. In fine print too hard to read on my phone, it says per pair. And when you get a comfirmation email, it doesn't include a receipt OR the price. You find that out when they charge your credit card. After the fact, I checked reviews and this appears to be a shady deal all around. The customer service email link they post is bogus. If you call the phone number, nobody answers.

    These orthotics are available on Amazon, so if you want to try them, go there.

    Normally I'm so careful about ordering online. I was tired and in pain and made a poor decision.

  • DeeBB
    DeeBB Member Posts: 71
    edited April 2019

    Rljes: There are two different pills and you take one in the morning and then the other about 30-45 minutes before going to bed. The actual name is AM/PM for menopause.

  • rljes
    rljes Member Posts: 499
    edited April 2019

    Thanks Dee -

    I'm still on 10mg once a day - (Actavis Pharma) and plan to be for several months.  However I have extreme bone/hip/back pain BEFORE Tamoxifen.  Pain no better No worse.  So no difference there.  I usually wake up with a bad headache which is unusual, usually I have Migraines 3/4 times a week. I had a bout with diarrhea for the past 2 days- usually constipated. This is Day 7.  I can't imagine how I would feel taking the full 20mg.  

  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    Rljes, I wonder if you could try a different manufacturer. I had terrible pain, and also noticed headaches, which I normally don't get. I've been on Actavis for a month. Previously on Teva with no issues except intense hot flashes and constipation. Now on Mylan for 2 days and already noticing a decrease in pain.

  • Lomlin
    Lomlin Member Posts: 116
    edited April 2019

    Yes, I was the one that posted that link about Walk Fit, didn't know the link was bad, I did as mentioned I ordered from Amazon instead.

    I was on Activis from the start, I was fine, no pain, then I got a new manufacturer that was Teva, I was in so much pain, so I asked the pharmacy the next time I get the RX refilled to put me back on Activis and they did. Except my pain is still around. I really thought Activis was better. I have heard and even from my oncologist that women say Teva was better. What about Mylan? What kind of physical theraphy can you do for arthritis in the hip? I am curious as I have this and would like to know, someone here posted that that was helping them.

  • beaverntx
    beaverntx Member Posts: 2,962
    edited April 2019

    LomLin, I' m having PT for trochanteric bursitis and arthritis in my hip so I'm not certain which aspects of therapy are for which problem, or if they all are for both! I am going to PT three times a week so far where they do deep massage on the hip, have me do a series of exercises, some with and some without special equipment, and finish with electrical stimulation and a cold pack. At home I am doing four of the exercises and using an ice pack three times a day. The PT thinks the problem is bilateral so some of the exercises involve both sides. It has only been a week but I can tell some difference already so I am very hopeful! My PT company does not require a doctor's referral, although I had one.



  • rljes
    rljes Member Posts: 499
    edited April 2019

    Thx Nancy - My MO will only prescribe 20 mg now, so the next bottle will be from my Optim Rx 90 day supply -I'll give them a call see what manufacture I can choose from.

  • Mymomsgirl
    Mymomsgirl Member Posts: 95
    edited April 2019

    Nancy when I started the biggest thing I noticed is I was very thirsty. When I moved to the morning and evening dose I have had a few warm moments but no real hot flashes, except for right before my cycle but that has been the normal for the last year anyhow.

  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    Thanks for all the replies.

    LomLin you and I had exact opposite experiences. I was good on Teva and bad on Actavis. This is Day 3 of Mylan. I'm still having pain, today mostly behind my knees. Seems each day the pain moves. But it is less than it was last week. I haven't been going to yoga which is probably the wrong thing to do. It's a catch 22. Also I'm experiencing some mild depression where I don't want to go anywhere or do anything. I had that on the AIs. I'm hoping that the pain goes away. And I'm definitely asking for Teva.

    Regarding the Walkfit... I was finally able to get someone on the phone. They couldn't cancel my order, but they said they will fully refund me and when I get the package to just write refused and take it to the post office.

  • lala1
    lala1 Member Posts: 974
    edited April 2019

    Nancy618--I saw a segment this morning on the Today Show where Dr Oz talked about ways to treat chronic pain and yoga was one of them. I had severe muscle spasms after my mastectomy in my pec muscle from the surgery and the tissue expander. Then I had pretty bad muscle and joint pain from Tamoxifen. All my pain was helped dramatically with turmeric and yoga. Not sure I could have made it my 5 years on Tamoxifen without it. And still, one year after finishing Tamoxifen, if I go more than a week without yoga my muscle pain comes roaring back. I go 3 days a week to stretch yoga and it's been a lifesaver. Dr Oz strongly recommended even just doing certain yoga moves at home every morning when you get up. He said as little as 7 minutes a day can make a huge difference. Maybe you could google the story.

  • rljes
    rljes Member Posts: 499
    edited April 2019

    I have severe fatigue - more than my normal chronic fatigue - can't keep my eyes open fatigue... Anybody else? 


  • Nancy618
    Nancy618 Member Posts: 318
    edited April 2019

    Lala, thank you for the info. I KNOW I need to get back to yoga. The Tuesday class especially is gentle stretching. However, lately the instructor has been doing way more meditation and reading than I like.

    I am happy to report that after 7 days on the new brand of tamoxifen, the aches and pains in my thighs, knees and left hip are gone! I still have some in my right but I've had that for quite some time. The sciatica is very minimal. I have been able to move better. And my attitude and emotions are much improved.

    So don't let anyone tell me that there is no difference between manufactures!



  • beaverntx
    beaverntx Member Posts: 2,962
    edited April 2019

    Great news, Nancy. It is so very good when things work!

  • rljes
    rljes Member Posts: 499
    edited April 2019

    I wish I had the energy to go to a yoga class.  Its a catch 22 (like Nancy said)  Too tired to get up to take yoga, but I'd feel better if I did.  Today I was cross eyed so tired driving to get my port flushed.  So tired I locked keys in my car.  Its a danger for me to drive I'm so tired. and again, I'm only taking 5mg. I can't imagine going any hire. I'd never get out of bed. 

  • sm627
    sm627 Member Posts: 142
    edited April 2019

    Hi Everyone,

    Wanted to check in and see how you all are doing?

    I want to thank you all for your input about questions to ask my MO. I saw her last week. The good news is she spent 30 minutes with me answering all my questions and she did a great breast exam. She gave me a clean bill of boob health and ordered my 3D mammogram for May. The only thing that disappointed me was I felt like she didn't take my concern about my very heavy periods seriously. She said it was not caused by Tamoxifen and that it was just a part of getting older. She told me to talk to my GYN. I wish I could meet with my MO and GYN together that way I could get both their inputs on how to make my side effects better in one visit.

    I still think Tamoxifen is the reason why I am having all these changes going on all of a sudden.If everything starts to go down hill in your 30s that sucks!

    Does anyone else sometimes feel that Dr don't take your concerns about changes in your body seriously?

    Thank you all for listening it helps to vent.

    Hugs to all and I hope you all have a good week.

  • lezza13
    lezza13 Member Posts: 579
    edited April 2019

    LomLin and Beaverntx - I have done physical therapy for both hips n the past. Now I do acupuncture for my trocanter bursitis and really recommend giving it a try. It seems to help and lasts for months. I even got a groupon for it. Hope this info helps.

    sm627 I have to agree with you that mds do not take changes in your body seriously. My onc says sure I have hot flashes and minor joint pain with Tami but I still have to take it. I am going to ask her about splitting the dose. After almost 7 years on it I did not think I could. Now I know. Glad you are getting that 3D mammogram. Perhaps you need to see a gyn. for your heavy periods.

  • beaverntx
    beaverntx Member Posts: 2,962
    edited April 2019

    Lezza, Thank you for your suggestion, I'll keep it in mind as a potential next step. Right now I'm working on retraining my hip muscles to do their jobs the way they are supposed to do. It has only been two weeks and I am seeing progress so I am hopeful! In the meantime I'll look into who does acupuncture in my area so I'll be prepared.😊

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.