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Bottle o Tamoxifen

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Comments

  • sandyhook26
    sandyhook26 Member Posts: 4
    edited July 2015

    I am suppose to start Tamoxifen this week. I am getting freaked out. Are there people out there that have no side effects?? I need to hear from you.

  • ALittleBitBritish
    ALittleBitBritish Member Posts: 415
    edited July 2015

    No SEs now, first month or so hot flashes....turned my fan on at night, but that went away.

    Been taking them for 4 years. Will stay on them as long as possible to avoid a reoccurrence.

    I was worried too, but give it a try, you can choose to stop taking them if you wish. Personally it if keeps cancer away I am prepared to keep on them for as long as possible

  • sandyhook26
    sandyhook26 Member Posts: 4
    edited July 2015

    Thanks for the encouraging words.

  • loriekg
    loriekg Member Posts: 118
    edited July 2015

    Hi Sandyhook26...I came on board hoping to find some positive SE's too! I just took my first Tamoxifen today...YIKES! I'm almost afraid to read about the bad effects as I don't want to be waiting for them to happen, you know?

  • sandyhook26
    sandyhook26 Member Posts: 4
    edited July 2015

    Good luck loriekg. I am suppose to start the middle of this week. I am going to believe a lot of people don't have the SE's. They just don't post. THINK POSITIVE.

  • MidLifeCrisis
    MidLifeCrisis Member Posts: 15
    edited July 2015

    sandyhook .. I have been on it for 3mos and really have had no side effects. A few warm flashes in the beginning but they have ceased. My Onc had me ramp up to the full 20mg dose over the couse of several weeks, so I've only been on the full dose for about 2 or 3 weeks. I don't know if that has helped mitigate the initial SE's many people experience or if I'm so far just "lucky", but it might be something you could ask your Onc if you're really concerned (like I was) to get started.

    Good luck to you and I hope, like for all of us, that you can tolerate it well

  • lala1
    lala1 Member Posts: 974
    edited July 2015

    CindyK--I take 500mg turmeric 2xday, 500mg ginger 2xday, 2 tabs SloMag 1xday, fish oil with high amounts of DHA 1 capsule per day, aspirin 2xweek (daily caused bruising), Vit D (2000IU daily), Centrum multi vitamin 1xday, and 1 Peridin-C tab and 1 iCool tab a day to keep the hot flashes at bay. I also take a probiotic. In addition I try to work out in some form every day at the gym and I get myofascial release massages whenever I can afford them for the scar tissue that periodically builds up and gets tight along my rib cage.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited July 2015

    Have been working for months to build up endurance and keep away the Tamox/lupron wt creep. Just bought myself a Fitbit Charge on Friday and now determined to take this battle to a much higher level. I have maintained and added muscle but not really lost weight so far. I have 3 weeks before exchange when I'll have to take a break so stay tuned. I will conquer this.

    Scottie

  • Karz72
    Karz72 Member Posts: 102
    edited July 2015

    I've been on Tamox for 3 weeks now & haven't noticed any side effects. Although after 6 months of chemo & zoladex implants i'm guessing any I do have seem minimal in comparison!

    Noticing my appetite lately, I think the weight gain is the only SE I need to worry about :-)

  • Blownaway
    Blownaway Member Posts: 662
    edited July 2015

    I have been on Tamoxifen for about 6 months and I really don't think I'm having any side effects from it. Maybe hungrier than I used to be but I drink a big glass of water instead of eating between meals.  After chemo and the swelling, I was up to 140 lbs and have now lost down to 127 and I'm fighting not  to gain it back.

    I take Effexor for hot flashes, increased dosage 3 times (up to 225 mg) and was still having hot flashes but the higher dosage caused me to jerk myself awake about 15 times a night, constipation, dry mouth, hand tremors.....so I lowered back down to 150 mg and those side effects are mostly gone.  Tamoxifen did not cause the hot flashes, I've had severe hot flashes since menopause/hysterectomy about 8 years ago.  I controlled it with Premarin until my B/C diagnosis.

    I have noticed some hair droppage in the last 2 weeks but that could be similar to the way I was losing all my eyelashes at the same time over and over again after chemo.  I understand they were on the same growth cycle (I lost them at the same time and they grew back at the same time). I'm thinking that since my hair starting growing after chemo that I may be seeing droppage more than usual and all at once because my hair follicles may be on the same growth cycle, like my eyelashes were.  I sure hope its not the Tamoxifen - that would be a downer....

  • Mm68
    Mm68 Member Posts: 36
    edited July 2015

    I have been on Tamifen 3 months now. Had hot flashes in the beginning, started taking magnesium and the have gone away. Nothing else really that I have noticed

  • islandmom
    islandmom Member Posts: 131
    edited July 2015

    Scottiemom11, so great to hear you are "taking this battle to a much higher level", that is exactly what you need to succeed. Before you know it you will get there. I started 4.5 years ago at the same time I started chemo. I did not expect much, but slowly I started to see positive changes both physically and mentally.

    Please keep us updated on your progress.

  • Stenokim
    Stenokim Member Posts: 76
    edited July 2015

    I've been on it a year and a half. No side effects except occasional calf cramps in the morning. Once I get up, they're gone. Hope the best for you gals. Kim.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited July 2015

    Thanks islandmom, I will update periodically. I wish there was a beginning exercase board. I've seen the post your daily exercise board but it seems to be mostly runners. I can't run b/c of my old L4/L5 injury, but I can walk, hike and do weights.

    Scottie

  • Annie88
    Annie88 Member Posts: 124
    edited July 2015

    I have been on Tamoxifen for 5 months. The only SEs have been some hot flashes and insomnia when they switched brands on me. Everything else has gone pretty smoothly. I take Levothyroxin for thyroid issues, but there hasn't been any complications. Well wishes to all

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited July 2015

    Scottiemom, I post on the daily exercise forum and am not a runner. I walk, do weights and just getting back into hiking. With that said, I am trying to do a 5K in Sept, but that is a goal I set for myself as a post treatment goal. Come one over to the board and I am one that is barely getting my 10K steps in on my fitbit. LoL. Hope to see ya there. Fitness and Getting Back in Shape → Topic: Let's Post our Daily Exercise

    I hope the SEs with Tamoxifen diminish soon for me. I have had a rough ride over the last 2 months. But glad to hear that there are quite a few with minimal to no SEs -- good to see these types of post.

  • DianeNYS
    DianeNYS Member Posts: 17
    edited July 2015

    I thought that it would be good to give an update, since so many people are starting this med at this time...I started Tamoxifen on 4/15/2015, and it's been pretty Okay for me. My weight has turned out to not be an issue; I started the med at 129 lbs. (I'd been losing weight since 7/1/2014--started at 150 lbs.--and was afraid that the weight loss would stop, and that I would even begin gaining what I'd lost, back), and almost 3 mos. later I am down 7 lbs., to 122 lbs. at this time (my goal is 120 lbs.) :) I eat a low-carb, grain-free, sugar-free diet; count calories; and work out moderately for 1 hour/day. I've been doing this, though, religiously since July 2014.

    When I'd started the Tamoxifen the side effects were insomnia, leg/foot/muscle cramps, and warm flashes (I'd already gone through menopause in 2001--I'm almost 62--so maybe that's why my flashes were not "hot"?). I take 1,000 mg Curcumin Turmeric/per day, and Magnesium Carbonate/Citrate powder, 2 teaspoons/per day. I've already been taking Calcium, Vitamin D and Flaxseed Oil for years now, so I don't know if they have been helping with Tamoxifen symptoms or not.

    As of today, the muscle aches and pains come and go here and there, but nothing unmanageable and not chronically. The insomnia has disappeared, and I believe that is because I take the Magnesium powder before bed (I take the Vitamin Shoppe's version of "Natural Calm", called "Calm Zone Magnesium", which is much cheaper). The warm flashes have disappeared, and I have to say that as of now, I'm really feeling very good. And at 122 lbs. I'm fitting into my favorite pair of jeans that I wore in High School--44 years ago :)

  • willowreed84
    willowreed84 Member Posts: 31
    edited July 2015

    DianeNYS, thank you for the tip about Natural Calm!  I read an earlier post you made about it and gave it a try.  I started tamox last August and I have hot flashes and weight gain and aches and pains from the waist down.  I got the natural calm 2 weeks ago and my aches and pains are gone.  I only take half a teaspoon at night.  I didn't get any relief from the flashes, but I can move so much better now without pain.  

  • DianeNYS
    DianeNYS Member Posts: 17
    edited July 2015

    willowreed84, I'm so glad that the Natural Calm worked for you! When I first started using it, 1 tsp. of the powder pretty much did the trick for me, but as time went on with me taking the Tamoxifen I needed to up my dosage--first I tried 1.5 tsp. and that worked, but eventually I needed to go up to 2 tsp. I've been doing that for awhile now, and I find that it is still doing the trick, so I'm happy :)

    I think it's the Curcumin Turmeric that is helping me with the warm flashes I was having, but not sure...I actually started taking it for inflammation with my arthritis (which now is not a problem anymore), but I'd read that it would help with the flashes, too. Who knows? ;)


  • lala1
    lala1 Member Posts: 974
    edited July 2015

    I also take magnesium, turmeric and ginger. I know for sure that all have helped tremendously with my joint pain. I've read that they may all help with hot flashes. I started taking them before I started getting hot flashes so it's hard to say if my relatively mild HF are a result of them or if I'm just one of those to have fewer and milder. My mom never had any HF so maybe if I hadn't been put into surgical menopause, I might not have had any either. But I can say for sure that the iCool has reduced the number even further as well as the intensity. I started out having about 12-15 HF in a 24hr period. After a month on the iCool, I'm down to about 4-6 and they are much less intense. Now that I've lessened my joint pain and HF, I'm feeling the best I've felt since starting this journey. I just got a FitBit for my birthday so working on weight is next although my MO says he's happy that I'm maintaining on Tamoxifen since most of his patients gain an average of 40 pounds!

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited July 2015

    I cried uncle last night and stopped the Tamox this morning a week early (had to stop before exchange). I'm in one of the three busiest times a year at work and stressed enough w/o HFs and insomnia added from Tamox. I go back on after exchange but in the meantime I hope I sleep like a baby.

    lala1 congrats on your Fitbit. I got mine a week ago and it's fun except for the sleep tracker. Apparently I was awake 3 times last night and restless 25 times. No wonder I'm exhausted, as I type on tablet from treadmill.

    Scottie

  • lala1
    lala1 Member Posts: 974
    edited July 2015

    Scottiemom--Yeah, I was awake 5 times and restless 29! I am in bed for over 8 hours but not getting a very good sleep.

    Here's an interesting thing though....after suffering for 1 1/2 years with mild nausea, lightheadness, head pressure, burping, bloating etc and being told "maybe allergies. Here's some nasal spray." I finally got my ENT to give me some antibiotics and found major relief in about a week. But he told me I had some node swelling and I should get it looked at after my course of antibiotics. Well, I go north for the summer and this guy was down south so I sought out a new doc up north. This one is an allergy specialist and I saw him today. First thing he says is "I bet if you tracked your sleep you'd find you're very restless at night." So I pointed to my new FitBit and said yep! He then proceeded to tell me all the issues he thought I might have just by looking at me, and he was spot on. Ended up meeting with him for 3 hours!! Did some allergy testing and it turns out I'm mildly allergic to most things including dust, mold, grass, pollen, ragweed, etc. so I'm going to do immunotherapy for it. He did some really thorough testing on me and I'm excited to start feeling "normal" again. He did mention that Tamoxifen is known to encourage allergies and that he has a number of Tamoxifen users who thought all their "little ailments" were Tamoxifen when it turned out that allergies were more of a culprit. I had a hysterectomy in Jan and have hit my deductible so all this immunotherapy will be covered. I told him that most of my docs had blamed perimenopause (before my hysterctomy) and he said he wished more people would do allergy testing just to be sure that wasn't the problem since it can be treated. His preference is to treat the problem, not the symptoms so I am totally in sync with him.

    One little issue though, he has put me on Singulair. Does anyone know of any problems with Singulair and Tamoxifen? Drugs.com says moderate so I'm going to check with my MO before starting. Just wanted to see if anyone else uses this combination without any issues.

    Thanks in advance.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited July 2015

    lala1 Singulair is a good idea. I took it years ago for allergies. Quit b/c so expensive, but it's been cheap for a few years now ( both kids take it for asthma). I've had a lot of congestion since starting Tamox. I think your doc is on to something and I'm going to ask about it after exchange.

    Scottie

  • ndgrrl
    ndgrrl Member Posts: 645
    edited July 2015

    Hi everyone- I saw the ENT and she didn't discuss a brain scan at all. Basically told me that I needed physical therapy and lined it up for me to go to next week. I was thinking wow. couldn't t be caused from allergies or something else? Do I really have to have PT? I will be moving 4 hours from the hospital that does the PT so I guess I will have to be getting a referral. I will be coming back July 28th to have a lump removed from my breast again- ufff .. at the plastic surgeons. So maybe can stuff physical therapy in then too.

    Have any of you had physical therapy for your ears from dizziness?


  • lala1
    lala1 Member Posts: 974
    edited July 2015

    ndgrrl--Never heard of PT for your ears for dizziness!! Did they tell you how it would work? If there is PT that would help, I'd certainly be willing to try. My gym has a PT program in it. I'll have to ask about it.

    Scottiemom--My doc called in an RX for Singulair and when I went to pick it up, it was free! When I refilled my Tamoxifen last month, it was free as well. Now, he also called in some RX nasal spray that my insurance declined to pay for. My cost for it would have been $150! Needless to say, I declined and will probably just use Flonase. Otherwise, it's interesting that suddenly my insurance is paying for my scripts....no copay or anything. On another note, I have decided to put off the immunotherapy. I'm feeling really good right now and I'd rather see how well my body deals with my "mild to moderate" allergies on it's own for now. I really hate the idea of doing more meds so I filled my prescriptions and will just hold them for now. Also, my dad warned me that if I have too many claims on my insurance, they won't hesitate to jack my rates up. $450 a month is bad enough right now despite the free meds!

  • live_deliciously
    live_deliciously Member Posts: 183
    edited July 2015

    im still in rads and will be put on tamoxifen in about 5 weeks when I finish rads. Can you ladies tell me if there is a way or a test that shows if tamoxifen is actually doing its job of blocking the estrogen from attaching to the cancer cells? I had a 99% positive estrogen and progesterone tumor and many nodes involved so I really need to control these hormones. I know tamoxifen doesn't always work for everyone and I heard it can stop working after time. Scary to not know til cancer has spread.

  • Lolis
    Lolis Member Posts: 294
    edited July 2015

    live_deliciously there is a test that can test. If a person is a good metabolizer of Tamoxifen but I don't think most MO will think there is any value added to it. Mine wasn't. My cancer was 95% ER+ and 85% PR+ and I had 8 nodes involved, when I asked my MO about the test she said there is not enough data to support it.

    It doesn't hurt to ask. Good luck!

  • lala1
    lala1 Member Posts: 974
    edited July 2015

    You'll probably know whether it's working from all the side effects!! ;) Hot flashes, joint/muscle pain, nausea, lightheadedness, fatigue, brain farts, etc! But all are usually pretty manageable with supplements and exercise.

  • live_deliciously
    live_deliciously Member Posts: 183
    edited July 2015

    thanks for the feedback. I am pre menopausal and onc says tamoxifen after rads. Others are getting lupron shots for ovary supression and arimidex. Any knowledge or experience if one treatment plan is better

  • Lolis
    Lolis Member Posts: 294
    edited July 2015

    I would ask for a different ovary suppressant than lupron. I haven't read good things about.

    Personally I didn't like it how I was while in chemopause. My hot flashes were bad and they stopped once the period was back and haven't had any since then. You can try the ovary suppressant and see how you react to it and if the side effects are hard to handle then you can switch to tamoxifen.



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