Bottle o Tamoxifen
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thanks Corky, isagenix is not a drug it's a supplement food/shake program with all natural ingredients, for weight loss energy etc. it's very expensive but this tamoxifen has made me so fat that it is still cheaper than a new wardrobe!
Xx kk
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Hi all,
Run, I am on tamox (of course), Pristiq (anti depressant instead of efexor), naproxen, 2 high blood pressure meds, vit d, vit b. For me this is working. We are hoping I'll be able to stop the blood pressure meds soon. Oh yeah, the inhaler still as needed.
Kiwikid, I am also on a very low calorie diet. It is supervised by my doctor's office. It is a meal replacement plan. Shakes and bars. So far I have lost around 30 lbs. But I had gained weight while on steroids for my breathing problems that happened while I had rads.
I feel like most docs throw meds at you and see which ones work. I don't know how else it would work. But I do know I have changed my pcp to get better care. She knows that less meds is better for me.
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Hi everyone,
Emma, I have been on Tamo for 2 weeks and most def have hot flashes. I am concerned about weight gain as well. Does Tamoxifen slow the hair growth after chemo? Thinner than before? Yikes, I really did not want to hear this.
Furfriend
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hi fur friend. Tomorrow week I would have been on tamoxifen for a week. I too am concerned about the weight gain and slow hair growth.....I just want my hair back. I have noticed I have not been bloated so much must be flushing out all the chemo poison......have you been getting any SE from tamoxifen....other than hot flushes? I have read from somewhere that tamoxifen slow hair growth. Can someone shed some light on this issues please???????
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Thanks Lacey, Nocompromises, and Emma! Someone questioned me about this a while back and suggested that maybe I AM Ellen and it's a secret that she has BC--clever theory! I agree with you, Lacey, that the picture is a bit different from Ellen's usual look. I hadn't thought about it before, but that might be why I chose this one, so my avatar didn't really look enough like her to make me feel like a total fraud!
macatacmv, thanks for the explanation about your combo. Radiation --> breathing problems --> steroids --> weight gain --> physician program to lose weight--what a mess! I hope you can reduce your meds the way you want, carefully and without new troubles. Meanwhile it's great that you have achieved a good balance of therapies right now. Good for you for losing 30 lbs.! Are you hungry on the diet? Also how long has it taken you to lose 30 lbs.? I've always been curious about those physician-directed ones.
Furfriend, others will likely comment on the hair/chemo aspect of Tamoxifen, but I did want to say that I had hot flashes at first on Tami, and then they went away. I was extra hungry for a while, and then less hungry than I've been in years, then it leveled off. So even if you don't like what you're getting so far, it might change for the better.
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run, My PCP is studying bariatric issues. She thinks people will feel better when they are at their optimum weight. I have to admit I feel alot better. It's taken me about 5-6 months. I lost weight myself first, after weaning off all the steroids. But then hit a plateau so I started with the New Directions diet. It is actually one of the diets people do before they have the bypass surgery. I am learning how to eat more sensibly. I will learn how many calories I can eat to keep my weight stable. I went to a wedding in FL last week and managed to eat and not gain any weight. I am not going to have the surgery, just get the weight off fast. I've been on the diet since Christmas. It has lots of protien and all the vitamins and minerals that I need. It was hard at first, but I am really not hungry anymore. I've learned to make stuff like muffins and pancakes out of the shake powder. lol
fur, I am not sure about the hair issue, either. I know arimidex affects hair growth. On that thread they recommend taking biotin. When I was on all the steroids I was growing hair like crazy, so I stopped taking the biotin. I had to have my face waxed at one point. Now I notice that I have no hair on my arms. Like run says, things seem to change as time goes on.
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actually I can't entirely blame tamoxifen, I'm also on zoladex shots, an anti depressant and a daily heparin shot for a dvt I developed last year (most likely a tamoxifen side effect).
The good news is that my hair is amazing.
Keep shining beautiful ladies
Xx
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HI guys! Ive been down sick with cold, lost my voice first and now congestion in my chest. Yea, ive had my flu shot. Getting real tired of coughing. Having some on again and off again hot flashes with tami. Missed my heart testing until cold is better. I really feel pretty good except I can' t walk on tredmill for 30 min yet thats my future goal I need to loose 25 lbs.My hubby just diagnosed with kidney failure. Big adjustment to our diets forth coming. You all take care!
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Emma and fur ..
I have been on Tamoxifen for 4 months now
I lost a kg a week for the first month - I have stabilized now 5kgs under my pre and post chemo wait
My hair is coming back in very quickly and thickly post chemo and def no signs of thinning - try not to second guess---- T. Is not your enemy
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hi noncompromises! How long did it take for your hair to be that long? I can't wait till the day I can stop wearing my wig!!!!!
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also I am from brassy!
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last chemo was sept 13th. Downy fluff came thru at 4 weeks , I threw the wig aside about 10weeks post chemo and now I am contemplating my first hair cut ( well trim) 5 months post chemo ( I coloured
it and it's gone pinky grey Grrrrr)
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do u mean brissie ??
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yes brisbane. Your hair looks great I can't wait for mine to get that long!!!!
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I hear everyone talk about chemo brain. Is there such thing as Tamoxifen brain? I didn't have to have chemo or radiation and I've been on Tamoxifen for just over a year now. Not too bad with side effects....a bit of joint/muscles aches at night that do well with turmeric, ginger and melatonin. About a month ago, I started feeling "off", almost like a cold without the cold. More like sinus congestion like my head is fuzzy. I did have some moments of lightheadedness that seem to have passed. Did have what I think were hot flashes but more like warm flashes which have subsided. Also would get nauseous at times which has mostly gone away. Are these all symptoms of going into menopause or could it be something the Tamoxifen is doing? I just feel almost like I have sinus congestion with the pressure but no headache or anything. Anyway, just curious if anyone else has had these kinds of issues on Tamoxifen.
Also, I still have my periods up till this last one that I did not get 2 weeks after I first had these symtoms. And yes, I checked to make sure I wasn't pregnant at 50!! That's why I'm wondering how menopause (or perimenopause first manifests itself.)
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Hi Folks, I haven't posted here before, but recently found out some info that has pissed me off in re: the drugs given to me during treatment for BC. I was almost killed with my one and only chemo. Taxotere was the culprit. I "failed" all three AI's b/c of s.e.'s. All of this could have been avoided had my MO paid attention to the Cytochrome450 genetic testing. Of the six genes tested, I have abnormalities in three. All are major players in the drugs I was given. Had I been tested, it would have been known. The drug choice and /or dosage modifications could have been made
Rather than rewrite the details here The link below will take you to a thread that has the posts that I have written in the last few days.
I'm not trying to sell Genelex. Other laboratories are doing genetic testing. But Genelex is the only company right now that provides the application of the genetic results to the drugs we are taking. Other companies, I'm sure are trying to build the same business model. It's the future of drug administration.
Why? Patients will no longer except being experimented upon with drugs that can harm them. If the docs won't do this because it's the right thing to do it. Then we have to PUSH them into doing the right thing.
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Lala, I took Tamoxofin for about 3-4 months and at first I didn't notice the lightheadedness but when they switched the manufacturer on me.I can remember the first day I felt like I was going to pass out after climbing a few stairs.My mother who is a nurse even was concerned.It passed but yes just about every morning I would have that weak dizzy feeling.Especially after my morning coffee.That is usually when I took it.My MO just looked at me like I was crazy.I am going back on it again but insisting on the Teva brand.
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Hmmm....Interesting Josie123. I haven't changed brands and was half way through my bottle when this started so I don't think that would apply to me. However, it did start about 2 days after I changed my multivitamin brand. I figured that out about 2 weeks into this and quit taking it. That's when most of my nausea dissappeared. But I still have this mild lightheadedness sometimes. But looking back on your reply, I will say it's worse in the mornings (and I do drink coffee!) and usually is mostly gone by lunch. Wonder if it's just an immediate reaction to Tx that only last a few hours.
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Yeah, I wonder if it affects the Blood pressure or HR .Because coffee raises the HR. I wonder if it's somehow related?
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Sign me up! I got selected in the lottery to run Grandma's Half Marathon on June 21.
My training has been terrible due to arm pain from ALND, frigid weather, and now a cold... but I'll do what I can to train over the next 4 months and just celebrate being back on the course one year after my diagnosis!!
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Thanks for the information, sas.
Runningfrom, high five! Way to go! You are on your way.
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Runningfrom....that is more than impressive! Best to you with your training!
Josie, I do think it's a worthwhile search to find the "brand" you are used to. I was also switched at CVS (both mail order and local store), then found out that the locall Walgreens could fill my Teva "brand". Am hoping they continue to carry it, since I just do not want to deal with more than the myriad se's I already am trying to cope with.
Not sure I can stand three more years of this....am going to ask MO if I have gained much benefit (probably just statistics, eh?) from the two years I've completed. And going to ask for another Tami vacay to see if I can get something done over a few weeks. The cog fog is so distressing! The only way I am productive is with my exercise program....nice, but certainly not the only way to exist.
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Hi, I was diagnosed 2 years ago yesterday but new to Tamoxifen. I am ER-, faintly PR+, and Her2+. My oncologist decided that I should be on Tamoxifen so I started taking it in Nov, stopped bc I was having GI issues and couldn't tell if it was Tamoxifen related and the started again Feb 1.
I am wondering if the following are side effects of Tamoxifen and if anyone else has experienced them:
- Fatigue
- Overly emotional/irritable
- Feeling bloated and like you are getting your period in between periods---basically feeling like you are always PMS-ing
I am 36 yo and still get my periods but they have been irregular since going through chemo.
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hi sdutch1. I am feeling very very much what your feeling. I dont have the light geadness but certainly the cranky moody and irritable. Also bloating llooking like 5 months pregers. I am also 36 yo.
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Ty for your reply Emma! For some reason I feel very alone in this whole Tamoxifen thing. Probably bc I am a little ways out from treatment and never considered myself hormone positive. And, it seems like everyone experiences different side effects so I'm having a hard time distinguishing if I am having side effects or if I am sick or what. I feel off and can't quite pinpoint it.
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you shouldn't feel alone this community is great for us....I've been so cranky sat few days. Every little thing has been getting to me. I need to retreat and remain calm. I feel the same way as you feeling all alone like no one understands. I've been trying to loose weight and feeling bloated doesn't help at all foe the self esteem.
Try to go for a walk or taKe a warm bath it may help.
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Hi girls....
I have been reading this board all week and finally decided to join.
I've read a lot of studies about this drug and I KNOW it is right for me to take it....but it's so hard (whine)... Mostly my feet are a mess, sore, cold, blotchy. My cognition is so much better than chemo brain, I can't compare...but I'm a little foggy. I am just really tired, especially my eyes.
I went to the eye Doc and he said I am fine, my eye muscles are just "not what they used to be"...???
I haven't had a period since chemo...my Onc says that if I test to be in true menopause he will switch me to an AI....how are the side effects for those? Anyone tried it yet?
....I'm lucky, no weight gain. I'm hoping to get acclimated and muscle through this. I'd love to chuck it and go back to my normal self. But BC was no picnic, and I have an 11 yr old son. I'm not a gambler.
Just thought I'd chime in, it helps to not feel so alone in this.
Hugs.......
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I will just tell you my experience with Tamoxifen I have just finished 5 years(2 months short of) glad it's over. When I started not too many s/e but did notice hair loss (I have fine hair) shortness of breath after some time and fatigue . I did think it was just post chemo and breast re-con ;which took 9 operations)but now I have finished I am sleeping better have more energy and not so foggy or breathless . The benefit of another 5 years was not enough to put up with such toxic drugs. I exercise every day eat well take vitamins prescribed for me and take DIM which I have taken for 5/12 years
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Hello All...
I started taking Tamoxifen Jan. 14. I have had clockwork SEs since the first night. 10 min. After I take the dose I am starving, followed by a burst of being "wired" and then burning up from the inside out. I am tired in the mornings where I used to be a morning person and I get chilled to the bone every afternoon, which requires layers in Texas. I am not "myself." I have trouble concentrating and I wonder if that is just from being tired. My husband and I were not particularly impressed with my oncologist. We don't feel like she offered any support or information. She made the Rx and sent us on our way. When I called about side effects, she referred me back to my PCP. He prescribed Lexapro for Lack of motivation and adderall for concentration. I am not taking either because I am not sure that they won't interfere with tamoxifen. I know I need to find a new MO. I have already had two surgeries and three to go...so tired of Dr. Visits and lack of motivation is not helping. I feel much encouraged after reading this thread...I knew I wasn't crazy. I have not ever had to take daily medication for anything...so I do feel extremely uncomfortable with all of this. Has anyone here heard anything about these scripts? I asked the pharmacist and he said I could take them together. That didn't satisfy the question of whether they would interfere with the effectiveness of tamoxifen.
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jeannie, from what I understand, there are tiers of drugs that interact or reduce the effectiveness of Tamoxifen. It's another risk vs benefit statistic scenario. You can google drug interactions with Tamoxifen and fill in your meds and see what the indications or contraindications are. You should find a doc that you are comfortable asking question and getting reasonable answers. It takes time to develope a relationship with doctors, but really some of these people need to take a class in bedside manner. Also your pharmacist should be more helpful. It took me 2 years to get a good med combo that works for me. I enlisted everyones help and came here and the arimidex thread a lot. I was started out on arimidex because I am "older", but after trying it for 8 months and feeling horrible, then having a slip in my bone density we switched to Tami. Which meant looking at the drug interactions and switching my antidepressant and one of my blood pressure meds. I, too, never took any daily meds before. I want to say that it doesn't happen quickly, but with steady due diligence and helpful medical professionals one can get to a place of well functioning again. Hang tough, you've been thru a lot and we don't just "bounce" back.
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