Bottle o Tamoxifen
Comments
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I've been on Tami 2 1/2 months. I don't have any fatigue or tiredness, get up at 7:30 and go to bed around midnight, but I do exercise at least five days a week. Walk a mile a day, then weight lift for about an hour. The only thing I'm struggling with is nerve pain from the lymph node dissection or mastectomy. Lots of numbness with pain, if that makes sense. Almost like I'm being shocked sometimes. Kim
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Countdown begins....I will be starting Tami this Friday. Not looking forward to it, but I hope I don't have many SE. Thanks for sharing your experiences!0 -
Add me to the list of tired ones! So tired. Exercising is really hard - I have to force myself to do it.
Here's hoping our bodies adjust like Donnabelle.
I can't imagine feeling like this for another 5 or 10 years!
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Lovewins - Stay positive. I had so much angst about taking that first pill. It really has not been bad. Yes, I am tired but am able to function just fine. And all of this has gotten me off my butt and onto the treadmill daily. So there are positives! Most women are Ok on Tami so keep that it mind! Keep us posted.
Donnabelle - thanks for the encouragement! My MO said usually side effects will resolve so all that is good news.
So glad to have you all to share this experience with!
Dawn
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Thanks Dawn....I have been through a lot so this is one more hurdle....I am hoping for the best.
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I have to say that after three months and change my fatigue is finally vanishing! Almost back to my regular energy level. Very happy!
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Good for you headeast...I took my first Tami last night. I wake up a lot anyway, but seems like I work up more. Fell back asleep ok though.
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Hi Ladies - It's time for me to join you. Chemo is done and my exchange surgery is in a couple weeks. In anticipation of starting Tami, I have a couple questions I hope you can help me with:
Is there a preferred brand that most women tolerate better with fewer SEs?
How is it going with the supply problem? Has that been resolved?
From reading the thread, I am not getting the impression that most on here are gaining weight. Is that correct? My MO said "most" of his patients gain weight on Tami.
I have to do this for 10 years rather than 5. I'm not sure how I got so lucky.
Thanks in advance for any advice you can share.
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Warrior_Woman, I don't think I have gained weight, but I am dieting, no bread, starches, lots of salads, no desserts. I think it makes you retain fluids though and that is weight.
I use the Teva brand and haven't used any other one yet.
My MO said 5 or 10 years, I really don't care as long as I dont get this cancer again!
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Hi Warrier_Woman. Welcome - although I know there are other places you would rather be
I am also on Teva - no SEs except having trouble staying asleep at night. I am NOT gaining weight, if anything, Tamox has decreased my appetite like crazy and I am losing weight. I have no desire to eat anything and make sure I get my 3 meals a day and take my vitamins, etc ..All we can do is wait for the worst (SEs) and be greatful for what we don't get - I guess
((Hugs))
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warrior woman, I'm on the Watson brand, no problems with supply, no problems with SEs, and no problem with weight gain. I'm kinda with headeast and mrs Darcy, can't gain weight, though I am working out much more and eating better than I did before. I didn't have a weight problem before all this, though. My MO says 70% of patients have no side effects, so keep that positive thought. I know the feeling, though. I had the pills for a week before I started taking them, and I like you am on the 10 year plan, I guess due to my age of 48.
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Over this past year, I have had allergies surface with some very problematic itching (apologies for redundancy to those who have read this on my earlier posts). The functional medicine practitioner I saw recently recommended that I start 500-1000 mgs of Vitamin C. After a few days, the itching seems milder. However, I searched for any interactions with hormonal treatment and sadly, found several articles suggesting that Vit C inhibits work of Tamox (I did not look up AIs yet). Does anyone else know about this? I feel totally in a catch-22!
Meanwhile, I have been off Tamox for three weeks to see if the allergies, cog fog and sleep would improve. For the past week and a half, the cog fog is wonderfully absent, and I am present and ALERT ...and sleep is back to normal (no longer need melatonin). I am in a panic about emailing my MO who would now like to prescribe an AI (thinking it might be more gentle on me...but I already have painful hand arthritis) and if not, have me return to Tamox. Am putting off contacting her....just can't face return to what these drugs make me feel like.
Happy for you newbies who are tolerating Tamox well! I knew several ladies who sailed through their hormonal treatment.....which I anticipated. Hopefully that will be you! I am an overly sensitive case, I suppose.
. What to do....what to do.....0 -
Lacey,
My onco said to me a long time ago now that a lot of things effect the absorption & effectiveness of Tamoxifen. Okay, but I wish they would expand on that or simply hand me a list. Some OTC products, some antibiotics like Z-Pak, some anti-depressants....and the list goes on. So if don't know what they are how will my PCP? Not much help to me but I did go to Drugs com and found pages of meds that effect Tamo. Now I don't want to take anything......getting ahold of my onco on the phone is next to impossible.
Good Luck and Positive Thoughts to you
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WarriorWoman, welcome! That's a lot of W's ;-)
I just refilled my tamoxifen last week at my local CVS. I get a 60-day supply with each refill. I asked the pharmacist about the shortage ... She had not even heard of it. She said they keep two years supply on hand. I'm on the Watson brand.
Re weight gain ... I have gained seven pounds in the past year, but it's not the fault of tamoxifen, it's my bad food choices, quantity and inactivity. I recently made a commitment to follow Weight Watchers; it has been a little over two weeks and I've lost five pounds. So weight loss is certainly doable ... I have about 20 more to go to get to my goal. I know it will take a while and that I won't continue to lose at the same rate ... It always comes off quickly in the beginning. But good to know I can undo a year of extra weight in about a month. :-)
Good luck, and I hope you have little to no SE's.
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Headeast - Your posts are keeping me going and encouraged me to choose to reduce my carbs to keep from gaining weight on Tami.
Welcome Warrior Woman. - I am taking the Watson brand ( almost done with 2nd bottle) and have had few/no side effects. I have not had any problem with a shortage - I just picked them up yesterday. My MO said a lot of women gain weight on Tami too so as soon as I started taking them I started walking daily and am logging 10,000 steps on the pedometer. I also have minimized the bread/pasta and I eat and don't eat after dinner. I actually have lost a few pounds. I am not extremely rigid about it. That works better for me.
I read a great book - it's called Fat Chance by Dr Lustig. It's a great explanation about how carbs and sugar really are the culprit in weight gain. He does not have an extreme philosophy which I like.
I am wondering how long it takes for women to start gaining weight on Tami. Maybe it's going to get more difficult?
Hang in there everyone!
Dawn
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Dawn, Gemini, Stenokim, MrsDarcy & HeadEast - Thank you for the feedback. My hope is that my experience is more like yours and less like what my MO has led me to dread. I don't want treatment to lessen my quality of life.
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Thanks NormaJean....I do know of many of the drugs that are supposed to affect Tamox efficacy...but you are right about the ever expanding list. Definitely frustrating to keep track of......and MOs don't always buy into all the concerns.
Re : weight gain....I was very concerned about that possibility as I already had some lbs to shed by the end of my treatment. Last year I decided to be proactive lest the scale move upwards, and I reduced white carbs and sugar (as much as possible!), reduced size of any meat protein and increased veggies, including lots of cruciferous veggies along with fruit/chia and some walnuts in my breakfast smoothie. That change in diet and exercising 1-2 hours daily has allowed me to lose 30 lbs in about 15 months.
My MO helped me get started on my exercise plan by referring me to work with a trainer at the Fitness Center connected to the hospital. I still use that resource since it is very reasonable in cost, and now DH and I both work with the trainer and attend classes there. He keeps losing weight too! So, Tamox weight gain can be managed with that which we all know...healthy diet and exercise! Sounds like a lot of you are already doing that!
I never tought of myself as a gym rat type, but I sure love getting strong! Good luck to all of you!0 -
Thanks Lacey - I am a runner and run half marathons, lift weights and eat healthy. Despite this, I managed to gain weight during chemo and it felt horrible to find my body out of control. My MO thinks it's water weight and prescribed a diuretic which seems to be working. I panicked when he told me that weight can only be lost on Tami with "extreme dieting and exercise". I don't think I can do much more than I already do.
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Wow, Warrior, your MO is certainly not encouraging!! And I can imagine how awful it must have felt to find your body out of control during chemo, especially when you are so disciplined.
I would imagine that unlike during chemo, you will, over time, have more energy to keep up the exercise regimen that works so well for you and you will be fine. Not sure your MO needed to be so alarmist, since as you've read from several on this thread not everyone gains weight on Tamox....and I was taking it for a year before starting my fitness effort and had not gained weight. I just decided that I wanted to lose the extra weight I was already carrying so I would have fewer fat cells creating estrogen to feed any errant cancer cells. I'm no MO, but I think you should not stress over his comment. Good luck!
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I am experiencing such heartburn/reflux that am now under my PCP's care. The constant nausea makes it difficult to eat and I've lost five pounds. It started after I'd been taking Tamoxifen for two weeks. I'm going to take a break from this med while taking Prilosec twice per day for three weeks. Hopefully things will be back to normal by then and I will reintroduce Tamoxifen. If the problem starts back up then I'll know it's the Tamoxifen.
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As for weight gain during chemo, it could be steroids were also used in your treatments. This is what happened to me even though I pleaded not to give them to me. I gained 32 lbs. during chemo & had never weighed that much since being pregnant !!! It finally started slowly coming off by watching calories & sugar. When I got back to where I normally range the onco said "why are you losing so much weight?" Had to remind him to go back to the beginning of my chart to see what I weighed before I started this journey. Now I don't deny myself but instead do food in moderation. Now I tell the person weighing me in at any doctor to subtract 2 lbs. for the "foobs" !!! LOL
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NormaJean - Good for you turning things around for yourself. We're told to keep to a healthy weight to reduce recurrence risk but they make it as challenging for us as possible.
Corky - Heartburn is not the weight loss plan for any of us. Ugh!
Chemo does a fine job of messing everything up. Between the steroids and the muscles fatigue, it's amazing I didn't double in size. My MO only started to listen when my legs and ankles swelled like an elephant. Proof that it's not me eating Bon Bons all day. The Lasix diuretic seems to be helping.
How about hair loss with Tami? How are we all doing in that department? Again, my MO has suggested fat and thin hair. Exactly what one wants to hear when finishing up chemo. From what I've read on here some women have experienced thinning hair but many have not. I do take Biotin and liquid Silica.
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DawnCT, you are very welcome! Good luck with your diet! Today I haven't eaten any meats. I know that one day is not a lot but for me it is. My DH made veggie burgers and were delicious! Trying to lose the lbs I gained during chemo!
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Warrior Woman
One day I am going to blow up my RO's car. Just because I want to.
If you like I'll do your MO's car too.
Seriously though - to the lady doing 2 hours exercise a day - not a realistic goal for many of us. How do you do it?
My MO warned about weight gain on Tami so I am careful to exercise and not to eat "bad choices" while trying not to starve myself or kill myself exercising.
The things my MO warned about that set me in a tizz were cataracts, blood clots (stroke) and uterine cancer.
When people ask me "You've finished treatment and are just taking Tamoxifen?" I nod and say "Yes. I am just taking Tamoxifen." (Maybe one day I'll blow up there car too.)
Hopefully none of us will have the more extreme side effects and all of us will have maximum benefit.
Best advice I got here was a lady who said that most of the people taking Tamoxifen don't have issues and therefore don't write about their experience with Tamoxifen here.
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Bounce - I recently visited an eye doctor to try and stay ahead of the game on the cataracts. The eye doctor was much more worried about a Tamoxifen side effect that takes away your ability to see color. WTF?! I do not want to go through life seeing everything in black and white! He said it happens gradually. So ladies, if things begin to appear less vibrant, be warned. Damn drug!
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BayouBabe
Thanks for posting.
I went to the eye doctor when I started Tamoxifen to get a base line check of everything.
I was surprised that she tested my color vision as no doc has ever done that before.
Of course she didn't volunteer any info. Thanks to you now I understand.
I am going to need to find a very big open safe place to blow up all the cars!
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Bounce, you might have some co- conspirators in your car reduction efforts!
I'm the person who exercises 1-2 hours daily. You are right. 2 hours of daily exercise is hardly realistic for many folks. However, I had to leave my high demand job after starting Tamox, given the fatigue and continued lack of sleep. I probably would not have retired yet had I reclaimed my previous level of energy. But since I did, I decided that my body would now be my "job".....And exercising and cooking have been two very concrete activities I could easily do even with the cognitive fog I've been experiencing. I certainly would not be on this regimaen if I were still working full time, raising kids, etc.
Bounce, amazing you haven't yet exploded (or have your tongue shoot through your cheek!) given the verbal restraint you employ in response to the "just taking Tamoxifen" comments.
And yes, as we both noted previously, there are plenty of people who sail through hormonal therapy...and they would mostly not be heard from on this thread.
Wow....I had not heard of the color blindness issue......yikes!
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Bounce - I making a note to always stay on your good side and keep my car locked in the garage!
Color blindness, stroke, skin problems, gyno cancers, clots, weight gain...the list goes on. As I read through the research, while these SEs do exist, the studies indicate that for any given symptom, a person is less likely to have it than to have it. I hope those studies are correct.
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Hi Lacey12
Thank you so much for posting. Some days I really battle fatigue and cog fog (like "some lady" instead of Lacey12
) and never know if its just me or side effects from either radiation or Tamoxifen.Just this week I told my boss I couldn't understand some data and he better do the work himself. It was very early and I hadn't had coffee yet. He looked at me a little funny and assured me he would help me understand so that I could do the work. Poor guy is getting used to a secretary who cries easily, (that seems to have passed) forgets to do things, takes frequent time off to go to doctors visits and yawns repeatedly half way through the day!
Your post really made me feel better.
By the way - cooking and cog fog - not always a good idea. I leave the stove on and forget it. Now, even if I am just boiling some water for coffee I set a timer to remind myself to switch it off.
Thanks again.
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Hello ladies...day 3 of Tami....sleeping worse than I was and people keep saying I look tired. I am thankful for sleeping pills. So far not doing too bad. Would love a good nights sleep though.
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