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Bottle o Tamoxifen

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Comments

  • lala1
    lala1 Member Posts: 974
    edited April 2016

    Molly50--I'm post menopausal and on Tamoxifen. I have been since my TLH/BSO in Jan 2015. My docs and I have discussed swapping to an AI but they all agree that for now it's better I stay on Tamoxifen since I do so well on it. I've had all the usual SEs like joint pain, nausea, hot flashes, sinus issues, etc but I've found solutions that work for me. i do wonder if I should swap for the extra benefit but my docs say that the increase in joint pain and such would outweigh the 1 or 2% reduction in recurrence rate. I've been on Tamoxifen for 3 years so I'll probably revisit the idea of swapping at 5 years. My BS says that compared to Tamoxifen, AI SEs are brutal. And although the risk of blood clot is greater with Tamoxifen, he says he's comfortable with a daily aspirin to counterbalance that.

    Jabe--I was also a winner of SEs from Tamoxifen...thickened lining, cysts, fibroids, etc. They were found in April and watched via TVUS every couple of months. No real changes and no one seemed to be worried. Then in Dec everything showed up quite a bit worse so I bit the bullet and did the total hysterectomy that Jan. Other than increased hot flashes that I manage pretty well, I feel really good. I'm really happy I did it and don't have to worry about that part any more. I am 52 but wasn't in menopause yet so I don't know if that makes a difference for you. I think there is a lot of Tamoxifen that involves watchful waiting!

  • jabe
    jabe Member Posts: 165
    edited April 2016

    thank you lala1. That helps to hear it as "watchful waiting". I'm 43 so I think the docs are hesitant about pushing me permanently into menopause until we know if I've for sure chemically been put there from chemo

  • momwriter
    momwriter Member Posts: 276
    edited April 2016

    Like Lala, I'm also on tamoxifen because I'm tolerating it well and benefit of AI is outweighed by the manageable side effects and the fact that AI's have their own set of intense and even life shortening side effects as well. I will switch when the time comes because I know I will have to, but I'm okay with this for now. I just pray that it keeps working. I hope scientists are pursuing an alternative to both tami and AI!

  • Molly50
    Molly50 Member Posts: 3,008
    edited April 2016

    Thank you to those that are post menopausal that answered me. I had not considered taking daily aspirin. That may put my mind at ease. We have a family history of stroke and heart disease on my dad's side. My SE's on Anastrozole were getting worse by the day. So I need to switch to something.

  • lala1
    lala1 Member Posts: 974
    edited April 2016

    Molly50---I lost my sister 8 years ago to a heart attack. She was 39. (She was obese with high BP, high cholesterol, pre-diabetic, and fighting PCOS which is really hard on your heart, She had also had chemo many years ago for Hodgkins.) So I have that family history as well. My MO and BS were comfortable with me on Tamoxifen as long as I took the aspirin. I did get lots of bruising taking one a day so my MO said to take it twice a week. He feels it works just as well as that dose. I also met with a holistic doctor who used to be a breast cancer doc before he retired. I went to see him to see if he could help with the joint pain from Tamoxifen. I told him my medical history with the BC as well as my sister's history. He suggested I take turmeric and ginger. He said both would help tremendously with the joint pain but as an added bonus, they were very good for heart health. He was absolutely right about helping with joint pain (from a 8-9/10 pain scale to a 1-2/10) so I'm hoping he's right about fighting any inflammation for my heart. So far, so good!!

  • lala1
    lala1 Member Posts: 974
    edited April 2016

    momwriter---Have you been given a time frame of when you might switch? I'm thinking 5 years I'll reevaluate. My BS did say lots of postmenopausal women stay on it for all 10 years so I guess it's not required that I switch. Heard if that's right?

  • iammags
    iammags Member Posts: 105
    edited April 2016

    Wow. So much info. Andy you all make Tamoxifen sound so fun! I'm with DeeRatz when she says that she'll do anything not to go through this shit show again. And I have it fairly "easy" without chemo. I'm now considering having my ovaries removed but I'm waiting on the results of my genetic testing.

    My question is this. I'm pre-meno now, at 52, but hopefully will be in meno soon. So, 1st you go on Tamoxifen then after menopause you go to AI's? If I have my ovaries removed I'll go straight to AI's? Or, will I still take Tamoxifen? I don't think so but I'm a bit confused. Do any of you have some experience with this?

    Also, just wanted to mention that I take Gabapentin and have not had weight gain. I feel great on it but still get those fun "personal summers" at night. I used to take Wellbutrin but I've had to stop ahead of the Tamoxifen.

    And I apologize to the lovely ladies of the other forums that I post on because I've asked this question before. Happy

  • MJS1266
    MJS1266 Member Posts: 159
    edited April 2016

    I had my ovaries removed and a complete hysterectomy last October.  I stayed on Tamoxifen at my MO's recommendation because I was tolerating it well, no longer had a risk of endometrial issues and AI would be more of an issue for my osteopenia and neuropathy.  I will probably be on Tamoxifen for at least two years before switiching to AI.  The two SE's I have from all of this are hot flases which are not severe and vaginal dryness.  For those worrying about weight gain, I have managed to lose 45 lbs.  I still have another 35 to go, just hope I can keep it up.

    All the best, MJ

  • molliefish
    molliefish Member Posts: 650
    edited April 2016

    I was 2 years onto menopause and the doc still put me on Tamoxifen for 5 years with a review at 24 months.


  • Andraxo
    Andraxo Member Posts: 168
    edited April 2016

    LynnBM - I just finished radiation this week too - On Thursday (which was after 6 rounds of chemo). My RO won't have me start Tamoxifen until June 1st. She wants me to have at least a month of recovery from radiation first. I also had a month in between chemo and radiation. Even though I have exercised pretty hard daily and worked through all treatment, it's still nice to have some weeks without anything assaulting me...to simply let my body 'be'....even if most people would look at me and what I can do and think I'm already recovered (I'm not!). Really not looking forward to taking tamoxifen.

    - xo

  • TinyDancer5
    TinyDancer5 Member Posts: 217
    edited April 2016

    3 months on Tamoxifen and this week I had cramps in my calf for a few minutes, then it went away. My skin is very dry too. Is this a SE

  • Blownaway
    Blownaway Member Posts: 662
    edited April 2016

    tinydancer - my skin is so dry its breaking out as in KP.

  • DurhamGirl
    DurhamGirl Member Posts: 13
    edited April 2016

    Hi everyone! I just started Tamox after finishing rads about 4 weeks ago and chemo back in January. I am still getting Her/Per infusions every three weeks until October.

    Anyway, I've been on Tamox for about 2 weeks now and haven't really had any side effects yet. The only thing I've noticed is that my lower legs and ankles seem a bit swollen. I used to see that kind of swelling but not generally until the evenings after a busy day, but now I see a little swelling even in the morning. Has anyone else experienced that with Tamox?

    There are zillions of posts with SO much useful information on this board...hopefully I'll get a chance to go through them at some point.

    Take care everyone!

  • rleepac
    rleepac Member Posts: 193
    edited April 2016

    Anyone take a Tamoxifen break and have your SEs 'mostly' disappear but not completely?

    I took Tamox for 4 months and had horrible joint aches in my hands, feet, knees, hips, and back. Then I stopped it due to surgery and my MO told me to stay off it for a few weeks because it can take 2-3 weeks to completely wash out of the system. I've been off it for 4 weeks and about 90% of my joint pain went away but I still have some that just hasn't resolved.

    I'm supposed to restart Tamox next week but I'm worried that if my SEs didn't completely go away I might be in for a return of SEs with a vengeance and possibly permanent joint pain.

    My MO said I'm post-menopausal according to my labs but that the AIs typically have worse joint pain so he's hesitant to try those. But he said we have options and there's no harm in trying something different. He wants me to keep a log of my SEs on Tamox and he will work with me if I just can't bear it

  • Molly50
    Molly50 Member Posts: 3,008
    edited April 2016

    lala1, thank you so much for your reply and the information about the aspirin and tumeric/ginger! I was discussing with my sister because of the heart disease, stroke family hx. I mentioned taking baby aspirin and she thought that might be a great solution. I was guessing 2-3 days per week. I will definitely discuss with MO. I see him in May but we are communicating (sort of lol) via the patient portal. I am enjoying feeling nearly normal on this break.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited April 2016

    Molly50, I have a personal history of DVT and was very concerned about getting another blood clot from Tamoxifen, since I was told that I was never allowed to take any hormonals. My MO told me to take baby aspirin. I take it every day with my Tamoxifen and so far so good.


  • tazbear89
    tazbear89 Member Posts: 35
    edited April 2016

    I didn't see or maybe I didn't dig deep enough, but how much tumeric/ginger does everyone take a day? I am getting ready to restart tamoxifen because when I intially started taking it, I developed severe jaw clenching to the point that I cracked a tooth that I will now end up losing at some point in my life. We decided to start me on Effexor for 2 weeks and then start the tamoxifen, but I would like to get ahead of the joint pain if possible.

  • trvler
    trvler Member Posts: 931
    edited April 2016

    The only SE I seem to be having besides the hot flashes (which I already had from chemopause) is that my right bicep muscle cramps up all the time. Anytime I move my arm in certain ways or stretch it the wrong way I get a cramp. Not sure what to do. I know what to do about leg cramps but this one I can't figure out. I have been off Tamoxifen for just under two weeks because I am having Stage 2 tomorrow.

  • lala1
    lala1 Member Posts: 974
    edited April 2016

    tazbear---I take Gaia Turmeric (suggested my doc as it's local and clean). I take NOW ginger but sometimes take other brands as long as it seems to be a "good" company. This is how they were suggested to me: take 1 capsule of each once a day for a month. If you get improvement, continue with that dose. If you don't, double your dose to 2 capsules of each once a day for another month. If you still don't get relief, then it probably isn't going to work for you. I got relief within about 10 days. My dad now takes it for his knees and it took about 2 weeks for him.

    Tryler--Ask you doc if it would be ok to take magnesium. I take 2 kinds: SloMag (magnesium chloride) which helps with hot flashes and regularity and Magnesium Glycinate which helps with muscle cramps and spasms.

    Between the ginger, turmeric and magnesium I've found a very happy medium. My hot flashes and muscle and joint pain are minimal. I can jog on the treadmill, do yoga and work with my horses with no problems.

  • superius
    superius Member Posts: 310
    edited April 2016

    The only thing I'm taking is a multi-vitamin (need to find one NOT Soy-based?)

    WorryWart wants me to talk to Dr to do blood work to see I'm missing any vitamin & stuff.

    So there are so many different things everyone is taking... So I'm gathering that Turmeric & Magnesium Chloride helps with Hot Flash . Melatonin is for sleep?

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited April 2016

    Superius,

    I take the multi vitamin Alive! by Nature's Way. It is soy free. I do not know about their gummy version though.

  • Musosgirl
    Musosgirl Member Posts: 305
    edited April 2016
    Tomorrow is the day I talk with my MO about Tamox. I've been reading on here for a few weeks and I am really nervous. These side effects sound overwhelming after having struggled through radiation for the past 8 weeks. Glad I have you ladies to lean on.
  • Molly50
    Molly50 Member Posts: 3,008
    edited April 2016

    I picked up my bottle of Tamoxifen tonight. I have so enjoyed my break from anastrozole. I hope this one goes better.

  • ksusan
    ksusan Member Posts: 461
    edited April 2016

    Best of luck, Molly.

  • mairew
    mairew Member Posts: 56
    edited April 2016

    Musogirl, i meet with my MO (Dr. Gloom) today to get hooked up with some Tamox. i am so anxious (in a bad way).

  • Musosgirl
    Musosgirl Member Posts: 305
    edited April 2016
    I think my MO actually wanted to do Lupron and an AI for me. I told him I had no clue which way we should go but I was very concerned about the Paxil/Tamox interference (I take Paxil for PTSD and OCD and have been very stable for the past two years). I do not want to switch off Paxil, but we are going to try it. We are making the switch to Effexor first to see if I do okay and to rule out side effect issues with that med--if Effexor does not work my anxiety triggers hot flashes which throw me into a full-blown PTSD flashback, so this whole pill-induced menopause thing is very scary for me. He said to wait three weeks to start the Tamox but I may wait four. I want to make sure I am good and stable on Effexor and there are no problems. I normally wean off Paxil over 4-6 weeks and we are doing it in 1. I have said this many times but I want off this cancer roller-coaster. The next two (or more) weeks may be a bunch of loops back to back. Either way, here I go.
  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited April 2016

    Tazbear. . .I'm currently taking 1,000 mg daily of turmeric/curcumin complex. I still have to clear it with MO next week, but it definitely seems to help HFs.

    Scottie

  • heidi s
    heidi s Member Posts: 398
    edited April 2016

    Yesterday, I used the last three eggs for breakfast. I put the empty shells in the carton with the intention of throwing them in the garbage. This morning I found the carton with the empty shells in the refrigerator.

    Dang you Tamoxifen

  • KateB79
    KateB79 Member Posts: 555
    edited April 2016

    I think tamoxifen is making me chronically late for everything. As in, I get places five minutes later than I should.

    Either that or I'm just losing my edge. :)

  • heidi s
    heidi s Member Posts: 398
    edited April 2016

    My short term memory is in the toilet

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