Bottle 'o Tamoxifen

so-she-did

Tempy - I hear you about the anxiety and depression. I don't want to take anything that could possibly lower the effect of Tamoxifen (I'm 100% er and pr +) and have been on anti-depressants before and didn't like feeling so "flat". So far I am finding a lot of relief from depression by taking magnesium. I included the link to the study so you can show it to your MO if you are interested in trying it. The bonus is that magnesium helps with hot flashes, too. Just be aware that magnesium will give you diarrhea if you take too much. I didn't have a problem with diarrhea until I had taken a high dose for about a week or two. I think my levels were so low before that the magnesium didn't have an effect until my levels came up. Now I've dropped down to a normal dose.

http://www.ncbi.nlm.nih.gov/pubmed/16542786.

ladyb1234

Thanks all for the suggestions. I reached out to me MO regarding some of the suggestions on cramping. At this time I have decided not to try Effexor but may reconsider if my HFs don't reduce soon.

light1

I don't know what to do, to take tamoxifen or not. I was on it for 4 months and my vision became blur, I saw the eyes doctor and they thought i was developing glaucoma, after I did a fellow up it was rule out and it was confirmed that it was due to the tamoxifen, because after i stop taking it my eyes were fine. Now my onc think I should try taking it again and if the blur vision return, I should stop immediately. now, I am scared and afraid at the same don't want recurrence. I am 36yrs.....

Positive_spirit

I started on tamoxifen in June and had a bout of depression. Was really going through some dark times and found myself struggling. Talked to my onc and was asked to get of tamoxifen for 2 weeks. Within 3 days the depression lifted and I have had more normal days since then. The oncology psychiatrist put me on lexapro at the end of July to see if it will help when I restart tamoxifen. The first 2 days on the antidepressant, I had high anxiety. I had not had this for a while. But the third days was fine. Going to let the antidepressant run its course and go back on tamoxifen. Rough times but I worry about not being on tamoxifen.

Springtime

I just read many of the entries here. I just feel disgusted that this is the best medical science can do for us. And to alleviate the horrible symptoms, we should take another drug! Shameful!

Today I did not take Tamoxifen. Yesterday while out for a run, I re-injured my calf muscle and I need to go see a doc today about it. This is the third muscle tear I've had. I feel it is related to whatever is causing my muscles to cramp up and be inflexible. AFter a tear, the spot is never really the same again, and I am so sick of this. The description above of estrogen like an oil, I can't find that anywhere, but it makes sense to me. I also have a numb spot in a toe. I feel if I can't exercise, then this drug is not worth it. Exercise is incredibly important in preventing reoccurrence, and the more vigorous, the better. If it's between exercise and Tamoxifen, I choose exercise.

So that is my rant for today!! Thanks for hearing me. It's been 61/2 years, and I don't know if i can go on!

jojo9999

I having been reading this thread for a while, I will now chime in. I have been on Tamoxifen almost 8 months. My side effects have changed over this time. At 3 months, hot flashes were the main problem, pretty bad, disturbed sleep - went on gabapentin which helped a lot. Stopped getting my period (age 51). Then the hot flashes went away, and I had few other side effects, even got my period, stopped taking gapapentin. Now I am worried that tamoxifen isn't working! I see MO next week and will discuss it with him. It amazes me how different every woman's reaction is to tamoxifen, makes me wonder if it is doing its job inspite of these differences.

tonia52

lala1, I will definitely check out the slowmag. Thanks for the information. Best wishes!

SummerAngel

Light1, I also developed eye problems on tamoxifen. My eye doc said he saw symptoms of "maculopathy" he was sure was caused by the tamoxifen, even though I had stopped taking it 5 days before my appointment. My oncologist's PA (onc is on vacation) said to stop for 1 to 2 weeks and then try every other day, see if the symptoms return. I'm a week and a half into the break and my eyes are much better but still a bit blurry. I'm thinking I'm going to wait longer, until after my exchange surgery, then try every other day. Has your oncologist suggested trying every other day? It might be worth a try.

Rmanmom

I have been following this thread as well. I powered through TCHx6, DIEP and rads and got through the first 18 months of Tamox with the usual hot flashes, night sweats, hair loss, weight gain and muscle cramps but nothing I was unable to manage through exercise and supplements. Then about 6 months ago, things really started going downhill. I started getting nauseous daily, light headed and extremely fatigued. It seemed the worst around late afternoon, early evening which was the same time I felt my worse when going through chemo and pregnancy. I was starting to panic every late afternoon as the symptoms came on. So I came to the unscientific conclusion it had to do with estrogen levels in my body. I did report the symptoms to my MO, and I've been to all my doctors, tested and even had a colonoscopy so another cause was ruled out. After reading this thread and finding this worked for some women, I decided to cut the pill in half and take half in the morning and half at night to even out the estrogen and while it took a few weeks, it did help tremendously. Certain foods still make me sick but I feel so much better. I have lost some weight. My husband is nervous about me doing this but I think at my next MO appt I will request a 10mg perscription to take 2x a day. I take Teva and despite all the problems it is actually better than Watson.

Springtime - I am also an avid runner and having problems with old injuries. I strained my peroneal calf a few years ago skiing and it still tightens up and that is where I get the most cramping at night. In fact it is still sore after a 4 mile run on Sunday. I totally agree about vigorous excercise to reduce recurrance and I am trying my best to maintain that.

So I am on year 3 of Tamox now and not sure I can get to year 10. I am 51 still considered perimenpausal and my MO is concerned about bone loss on the AIs and would rather I stay on this. I am scared to not take something. I agree it is shameful that there are no better options for us.

GirlPowerDebbie

CHTEASE ... I was on Arimidex for 3 months at first, and I felt like an 80-year old woman with the muscle and joint pain.  Not a lifestyle.  My MO put me on Tamoxifen which has its own set of troubles, but I did better on the Tami than the Arimidex. 

Debbie

DianaNM

Looks like I will be getting a Tamox scrip in a few weeks, just finished radiation. I feel like I'm on the cancer treadmill and can't get off!

My new MO seemed like a good listener, but I think he is not. I explained that I have past chemical injury (jet fuel in water at work), and still have a chemical sensitivity immune disorder, so would NOT consider chemo. At the end of our session, he ordered an Oncotype test to see if I needed chemo. Whatever.

But his argument for hormonals is solid, and I have a choice between Tamox and Arimisin. One evil or the other.

What doses are you ladies on? Is anyone doing low dose?

lala1

I just want to tell my story about my last 2 1/2 years on Tamoxifen. When I started it I was premenopausal. During the last 2 years, I became perimenopausal and then in Jan of this year had a full hysterectomy and ovary removal because the Tamoxifen was starting to cause issues like cysts, fibroids, thickened lining, etc. A couple of months earlier I'd had a surgery to remove a suture from my lifted breast which had never dissolved. My PS put me on massive doses of antibiotics to try to get it to quit "spitting" and to try to avoid surgery. Didn't work so in I went. This was my 3rd surgery of 2013. In Jan of 2014, I started feeling nauseous, lightheaded, bloating, burping and other minor but very irritating issues. I told my BS and PS and PCP who all attributed it to either the beginnings of menopause or Tamoxifen. I didn't disagree because all of those things ARE menopause symptoms as well as Tamoxifen SEs. My MO suggested a chronic sinus infection though and off to the ENT I went. This guy did think allergies but just gave me a NetiPot and some nasal spray. Helped some but not completely. This continued on through 2014 and into 2015. My GYN thought the hysterectomy in Jan 2015 would help because he thought maybe the ovarian cysts were causing wildly fluctuating estrogen levels which lead to nausea, dizziness, bloating, etc. The surgery did help a little but still suffering. Next was a holistic doc with a breast cancer background. He thought all the surgeries (I never had chemo or rads) in 2013 caught up with my digestion and suggested probiotics. Again, helped some more but still feeling just so blah. As I rolled into June and about a year and a half of feeling like crap, I decided to revisit the ENT and discuss allergy testing and other treatment possibilities. I was starting to feel like this had something to do with my sinuses because I would wake up sometimes with plegm and would sometimes get pressure in my head when leaning over. So back to the ENT. He reiterated that he thought it was allergies and offered antibiotics. I told him I thought antibiotics what what put me here in the first place because all this started a few weeks after all the antibioics, namely Ceflex. He then said he was going to try a course of one called Clindamycin. He told me that he'd done some Tamoxifen research and found that Tamoxifen tends to cause more frequent colds and sinus infections. Coincidentally I'd had a couple of colds around the time all this started which I don't normally get. So I went home and looked up Clindamycin and saw that it's usually used for vaginal infections(!!) but said what the heck and did a week course.Wow!! What a difference! At day 7 I felt like my old self. No more nausea, dizziness, bloating, burping.Turns out all that anesthesia combined with meds and stress had probably weakened my immune system. That allowed a couple of minor colds to set in for a few day but even after my symptoms were gone, an underlying infection was just sitting there messing with me. I didn't have any normal symptoms like coughing, sneezing, watery eyes, etc. so I really thought a sinus infection was unlikely.

Anyway, my point is to advocate for yourself when dealing with these Tamoxifen SEs. I was almost to the point of quitting and now I'm feeling really good. I'm not saying I don't have SEs just that much of them can be managed. I have the muscle/joint pain but with turmeric, ginger and magnesium, I'd manageable. I have hot flashes but use iCool. And now that I know Tamoxifen actually can exacerbate allergies and sinus infections, I can manage that too. I use a rinse (3 days on, 4 days off per my ENT) and I have a refillable prescription for Flonase. Hopefully I'll get through this coming winter with no problems but I'm prepared just in case. My docs are all really good and I love them dearly, but so many want to just put everything off on something else, especially menopause....and in our cases, Tamoxifen.

jojo9999

lala1, your post got me thinking about probiotics. I (usually) take one with reuteri. I recall hearing that it might be beneficial for breast cancer, but this is coming from preliminary research on a mouse model. Here is the link

http://www.ncbi.nlm.nih.gov/pubmed/24382758

It is really difficult to sort out the likely causes of our symptoms. can we really blame everything on tamoxifen?! I had to take an antibiotic Bactrim after my recon surgery two weeks ago and I think it caused a number of problems that I did not get when taking Ceflex, but I kept up with probiotics and things are better.

light1

SummerAngel, it seems both of us are experiencing the side effects of tamoxifen. I will bring out the suggestion to my onc about taking it every other day. I actually plan to start again taking it tonight it been almost 6months since I stop.

MagicalBean

I've been on Tamoxifen for 9 months and se's have been mild. I did have hot flashes for a few weeks but they've pretty much stopped. Recently, I started having heartburn at night. My cousin recommended Kefir. It seems to be doing the trick, but it is definitely an acquired taste. I drink it out of a wine glass to make it seem special but the sour yogurt/buttermilk taste is a bit off-putting. I like the idea that it has 10 probiotics opposed to yogurt which has 1-3 so I slug it down.

Anonymous

MagicalBean, I like the wine glass. I make a smoothie of plain Kefir, fresh fruit (usually berries, kiwi, or peach), and coconut water. Maybe that would seem more like dessert

In addition to probiotics, I take a mushroom immune complex that was recommended by my naturopathic doctor. I was very run down after my surgery, rads, and going back to work while starting tamox, and had a couple bad bouts of cold/sinus infection. Although I did take antibiotics to clear up the sinus infection, I think the probiotics and mushroom immune have helped me to stay healthy ever since.

I'm now 8 months into my tamox treatment and experience many of the common side effects. For what it's worth, stress seems to be the biggest factor in making my SEs go from an annoyance to almost unbearable. For example, the number of hot flashes I have will double, and they are more intense, during a rough day at work. I generally only experience the bad headaches and nausea when I'm stressed. I don't want to give up on the tamox, so stress management has taken on much greater importance for me these days.

lala1

MagicalBean--My holistic doc said it was ok to take a probiotic pill, just be sure it had a minimum of five strains and 35-50 billion units and comes refrigerated. I have been taking NOW brand that I found on Amazon but someone suggested Nature's Way Primadolphilus Probiotic that is at Whole Foods so I may try that one too. These pills are MUCH tastier than Kefir!

Kiki13--I have been going to a massage therapist who does myofascial release therapy and cupping on my ribcage where my scar tissue tends to build up and get tight. She suggested a while back that I try a mushroom immunity supplement which I totally forgot. May I ask what brand you take? What are the benefits you feel from it?

DianaNM

Re Probiotics. I try for a multi-focal approach. Some of this, some of that. Recently read that one of the best sources for a wide diversity of strains is home made sauerkraut! Now, I don't make sauerkraut, but Bubbies is pretty good and natural. And a bit of juice from the jar is great for an upset stomach.

Kimchi is good too, if you can handle it.

Not Kiki, but I take Jarrow Mushroom Optimizer. Would like to hear what others take.

MagicalBean

Kiki, I like the idea of adding fruit to the killer kefir. I'm trying that today.

Lala, I'll look into the pill form. Anything to avoid the delightful kefir taste.

Diana, I didn't know about the sauerkraut. I love it and always crave it (or dill pickles) when I have an upset stomach.

Anonymous

Diana, I'm with you on the sauerkraut and kimchi - I like Bubbie's too. I try to vary my probiotic sources (can only eat so much yogurt and Kefir!). I agree with lala about probiotic capsules too. I take them along when traveling and can't do my own food.

lala, I buy "Host Defense" brand organic mushrooms by Paul Stamets - I've seen about 6 or 8 different "Host Defense" varieties - I have bought the Turkey Tail, Cordychi, and MyCommunity. I have also bought the Sprouts brand Mushroom Immune Complex (if you have Sprouts grocery stores where you live. If you have Whole Foods, they probably have a store brand). My naturopathic doc said its important to not always take the same kind - you need to mix it up. So I'll take one kind for 30-60 days then switch.

To answer your question about the benefits, I started taking the mushroom complex after a couple terrible colds/sinus infections, and I have not caught cold since. I've had plenty of exposures: sick coworkers who come into work, sick little kids in my family, air travel, etc. I almost always catch a cold when I fly, but not lately. I don't blame the tamoxifen for my colds/sinus infection - I think it was just the cumulative effect of everything. The one SE that I just can't seem to shake is fatigue, which may be tamox or a combination of things, so I figure that giving my immune system a natural boost certainly can't hurt.

Springtime

I just wanted to follow up. I went to the Orthopedics office about my calf muscle tear, explaining what happened and that I injured myself a week ago, and then it happened again. So she said, you can't run for 3 weeks, but you can walk. (I am glad I went, because I never would have waited 3 weeks on my own!) They also gave me stretching exercises to do, which I am doing, and I have a PT appt. So today I walked my 5K which was kind of gimpy/limpy, but it did feel good. She also asked "what drugs do you take", which I thought was interesting. So I told her Tamoxifen and a pill for hypothyroid (NatureThroid). She said typically a muscle tear like I keep getting (I've had in my back as well from weight training) are related to meds. She felt it was the Tamoxifen. So today was day 2 I did not take it. I have decided to give myself a break for a month or so and then re-evaluate. I've done 6 1/2 years and I am wondering if that is just enough at this point. I also don't want the AI because I have osteopenia and I have already had 5 infusions of Zometa. I don't want to loose more bone, this is actually the main reason I run, all that banging is great for bone building.

Anyway, that's my update. I also wanted to say I did take Tamoxifen for several years with minimal symptoms, and I was even able to lose weight if I exercised and logged what I ate. Maybe I am just at the natural "end of life" of taking it. It was really okay for a long time. Just recently, it's like my body is saying, okay, enough already.

ladyb1234

Tamoxifen is kicking my behind. I have only been on it for 3 months and have had a myriad of SEs. Some have gotten better and others worse. My MO wants me to take a 10/14 day break to "reboot" my system as she says. I am 95% ER+ so she doesn't want to much of a break and wants this to work like me. She is not keen on putting me on an AI. This biggest issues with me right now are GERD and muscle cramping. The scariest SEs which were earlier on were the dizziness and lightheadedness.

4pink101

I picked up my bottle of tamoxifen last night- but haven't dared to take it yet. I'm terrified. Is there anyone out there that isn't having a hard time with it? The instructions that accompany it are crazy. Do you have SE immediately? Was anyone else terrified to begin?

sandyhook26

I was terrified to start. But I did. I have been taking it about a month. The only thing different seems to be some constipation and more gas. And my stomach gurgles more. But really nothing.

SummerAngel

There are many, many women who take it with few or no problems. Those of us who are posting about it tend to be the ones with the worst SEs. It's very well documented to reduce recurrence, it's definitely worth a try.

molly1976

I've been on it three weeks and have noticed nothing at all! A warm flash or two in the evening but not bad enough that I would think twice about it if I didn't know I was on Tamoxifen.

Rose0766

I feel like it's sucking the life out of me, muscle pain, cramps, hot flashes, night sweats, brain fog, and now a blood clot. Where does it end?

Professor50

I am currently on break from all hormonal therapy after 5 months on tamoxifen and 2 months on lupron+exemestane. I saw my MO yesterday to just check in and let her know I am hoping to give tamoxifen another try in September. The funniest part of our conversation was that she STILL asserts in no uncertain terms that she has NEVER EVER heard of ANYONE having cognitive side effects from tamoxifen. Not. Ever. Not. Anyone. I don't know if she just avoids reading about side effects or what.

molly1976

It's so weird when MOs have blind spots like that regarding our treatment. Mine is wonderful overall but tried to tell me that my constantly dry, bloody nose during Taxol "wasn't from the chemo." What?? That's a pretty weird coincidence, then!

ladyb1234

4pink101, I agree with SummerAngel, most have few to minimal SEs. Those that post on the board are ones that more SEs to get input, guidance and encouragement. Although I am one that has more SEs, I am still trying to take it as long as I can due to the % of reduction for recurrence.

I have to say my MO is great and she is willing to help as much as possible. I like that she doesn't dismiss or have "blind spots" when it comes to SEs. Her thought that is that bodies are individual and the "SEs" are based on our individual response to the drug. Her first question is when did it start, what did you change, etc. So I keep a good dairy on my exercise, food intake, supplements or any change I may have. Usually we are able to narrow it in. The current SEs she feels are Tamoxifen related and I should take a 2 week break to reboot my system since I haven't been on it long.

Again, good luck to all just starting out and remember most don't have severe SEs with tamoxifen.