Bottle o Tamoxifen
Comments
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Jeannie, DITTO to Macatacmv's advice! And first of all, find yourself a compassionate MO who will help you navigate this journey. This is not a cookie cutter process. Welcome....and best to you!
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macatacmv....thanks...I will check out the RX interactions online...and it is nice to know that you had issues and have found something that works for you. Did you require the antidepressant because of treatment SEs? I am just wondering if I should wait this out to see if things improve with time.
Lacey12...thank you! I was rather surprised by the MO's disposition...I am definitely going to find someone whom we will feel more comfortable and confident with. I am used to "bouncing back" quickly. Like most women, it is what my family is used to. I have always been very active. I hope that this is NOT as far as I bounce....uggggh!!! So we will search for a new MO with better answers.
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I just finished radiation this last Monday and plan to start Tamoxifen next week.
How many of you on tamoxifen are post-menopausal like me? I am osteopenia and my mother and aunt (father's side) both have osteoporosis so I decided I should start with Tamoxifen to spare my bones for a few years. My MO agreed it was a good idea given my family history.
Are the side effects different (better/worse) for post vs pre-menopausal women taking Tamoxifen? I stopped menstruating 10 years ago have hot flashes a couple of times a day, mostly at night when I go to bed.
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Hi Lizzie,
I am post and on Tamoxifen . A lot of MO 's in this area (Boston) do 2 years of Tam and then 3/5 of AI's.
Based on my stage I am on the 2/5 plan right now.
Some side effects (hair thinning, cognitive,minor aches) but mostly it has been fine on the Tam.
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jeannie, yes the anti d is because of issues that started on the arimidex. But now none of my docs are willing to let me not take one. And I have to admit that once I found one that works for me, I am fine with it. I had to change from one (might have been Zoloft) to efflexor when I switched to tamoxifen. That one was not good for me at all. So I am now on Pristiq which is a brand name so I had to have a letter of medical necessity written by my doc to get my insurance co to pay for some of it. But my doc did some research and said their were others that we could try.
I now have a bag full of unused meds that I am going to bring to the Police Dept to have disposed. All the "tries" in my trying to get it right.
lizzie, I am post menopause too. Right now the kinda weird feeling in my lower abdomen is annoying. My GYN said if I start to bleed at all to get right to her office. Another wait and see what happens. I see my MO on friday and will ask her about whether that is the way to handle it. And what she thinks about treating my bone loss. Always something.
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Hi everyone, just thought I'd introduce myself - I'm English but I live in Spain and I'm finding the whole cancer in a foreign language more than a little daunting. So looking for any help I can get.
I found out just before Christmas that I very likely had breast cancer, and I had a lumpectomy in January. It was classified as stage 1 and the lymph nodes were clear. I saw my oncologist for the first time yesterday, she's pretty sure I won't need chemo (but having some scans and blood tests to check) but probably will need radiation treatment and she's started me on Tamoxifen - 20mg a day.
Took my first tablet this morning and I'm sitting here waiting for side-effects (told my husband chances are he'll have to put up with five years of PMT and I haven't seen him since). Keeping everything crossed there won't be any!
Off to read some of the posts now - there's so much information here.
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Hi Lenn13ka,
What kind of cognitive effects have you had? I am a consultant and am worried about those side effects.
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Hi NicolaCleasby
I too am doing/have done cancer in a second language. It doesn't make matters any easier I can tell you that.
What makes it even harder is that my MO speaks a third language as her mother tongue.
Sometimes I think we don't know what the hell the other one of us is saying!
These discussion boards have been a great way for me to "talk" with English speakers.
Try not to worry too much about the Tamoxifen. Sure some women have problems, some very serious too - but there are a great deal of ladies who manage well.
My advise is to make friends with the idea. I view my Tamoxifen as a good thing. I am being very careful to exercise daily and eat carefully.
Feel free to PM me or exchange ideas via this thread if there is anything I can help with. Calm deep breaths. Calm deep breaths.
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Welcome Nicolas
Lizzie- cognitive issues- mostly brain fog/memory issues but like Bounce I eat super healthy and try to exercise outdoors each day and it really seems to help. The worst was when I had a brand switch at the pharmacy and I didn't know it. It took a month for things to settle down. I thought I was going crazy but by MO confirmed brand switches will do that.
Some people have no cognitive issues with Tam at all. I run a business, have to work with numbers and deal with clients, etc all the time and I don't find the cognitive issues getting in the way. Just catch me off guard every so often.
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Bounce - thanks for the support and yes it's hard - I did consider (very briefly) going back to the UK but this is my home now. It's just difficult when you're not always sure exactly what's going on.
I'm not going to worry about the Tamoxifen (I've spent way too much time second-guessing and presuming the worst over the last few months) Not everyone gets the SEs so - I'm not going to (I hope.) Nothing yet!
I'm missing the exercise right now - last week my scar re-opened, so I'm hardly moving at all in the hope it will heal. Soon...
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Hi Nicola
An interesting aspect of doing cancer in a foreign country is that there are also cultural differences not only language differences.
I originally (many many years ago) come from South Africa - an ex British colony - so I too was raised with the stiff upper lip - attitude. Talk softly - don't make a fuss.
Now I live in the Mediterranean - loud - aggressive - informal - wonderful but very different from what I am used to.
The first indication I had that I had cancer was when hospital personnel started treating me nicely - politely with care and consideration instead of being their usual rude selves. It was a shock!
I was delighted to get a British RO - but he turned out to be a bit of a dud. It seems I have lived here so long I now prefer I bit more lively, expressive, feeling doctor.
Did you get medical care for the scar reopening? It sounds really scary.
I believe in giving the body some extra vitamins and minerals during time of illness and healing - I swear by fresh vegetable juice - especially with something green - my combination of choice is beetroot, carrot, celery, parsley, coriander, cucumber, pear and a little ginger.
It sounds disgusting - I won't lie and say its tasty - unless you use a lot of pear!
But I swear the stuff helps your body get whatever building blocks it needs to repair and heal.
I treat myself to a juice at the juice bar so I don't have to do all the work involved.
Hope you feel better soon.
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Bounce - yes there are definitely cultural differences, but I've found the medical staff really helpful and they try so hard to speak English - when It's my fault I can't understand - my Spanish should be way better right now (but in my defence, I live on a mountain and there's no one to talk to!)
They just put a waterproof dressing on the scar and told me not to touch for a week (unless there were 'problems') It doesn't hurt at all. it's just a pain because I feel I can't move too much in case it pulls.
I'm going to start on the healthy eating tomorrow and cutting back on drinking (Takes a last gulp of gin and tonic). And I'll have a go at the juices.
No side effects yet from the Tamoxifen - though I've had a bad stomach since I started taking it. But my stomach hasn't been settled since this whole thing started so I'm not going to count that.
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Welcome Nicola! Today I started my third bottle of Tamoxifen. No side effects. Ok, maybe tired, but I think that is more because of the chemo and my body recuperating.
Let us know how your scar is healing. We are here for you!
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Hi Ladies...I'm new to the board and the site in general but what a gift!!! I feel like I've been in my head wrestling with so many things for the past few months and it just helps to talk/write to other women who have been there or are in the same boat.
I started with our friend Tammy in January...just starting Month 3. First month I felt like SuperWoman! Seriously...so focused and energized. I told my hubby I thought estrogen may have been my problem all along and if we block it I just might feel human. Then month 2 hit. Tammy became my arch enemy! However, my pharmacy also gave me a different brand. I started with Teva, then they gave me Actavis. I've gathered from earlier posts that others have had some issues with different brands as well. (I'm still learning how to best search topics etc.) I called RiteAid this go around and asked them to get me Teva again. Last month I was in a dismal pit most days, achy joints which I haven't experienced since taking gluten out of my diet several years ago and was bloated all the time. I haven't gained any weight...although I feel like I have b/c either the Tamox or previous pain killers have made me constipated. (Sorry for the details
). I'm curious if anyone else is A. Trying to follow a particular eating regimen like anti-inflammatory foods etc. or B. Taking any supplements that may help with side effects and C. Had any issues with switching generics. I'm hopeful that this past month was just part of the process and will quickly even itself out. I see my Onc on Friday. I had thought about starting DHEA to help with the moods etc. but that's a No-No with Tamox. Seems a lot of things are not compatible with Tamox if it in any way could effect our hormones. Sigh.
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runhappy, Welcome!
I started with Tamox on December 25 and haven't gained weight, i am actually losing weight, but i am also on a carb free diet.
I do have joint pain (knees and fingers) in the morning and i am not taking any pain medication, i just wait until it goes away.
I use the Teva brand.
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hello! I started Tamoxifen in October. I quickly developed joint pain. I was able to manage it the first few months with exercise. Then, things got worse and I have more side effects: nausea, sleep problems, tiredness, joint pain, and now I have a 'pulsative tinitis' which means I can hear and feel my heartbeat in my ears. Oh, and now I'm sad. Not like a deep depression, more like PMS: weepy. Ugh! I just don't know how much more of this I can take. And I am a bit frightened by this sudden increase in side effects. I am going to the Dr on Friday. Has anyone else had a similar experience?
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Hi Sandersmomma...looks like we are actually neighbors
. I'm actually heading to Emory for an onc appt this Friday as well. I went to three docs and this one has been a good blend of everything I liked in the other two. Re the Tam, did you notice if your generic brand has changed?? I'm not sure if some of my new side effects were from the brand change or not but I've been hearing more and more that it happens. Hope you can get some answers and relief to your side effects.0 -
thanks runhappy! I go to the main Emory too. My doc there is my second doc. I saw her for my second opinion. I liked her better then, but her advice was to stay where I was for treatment as it would be more convenient elsewhere and their treatment plans were the same. I loved her for her candor and honesty! The generic hasn't changed, I have definitely seen differences with other meds. Thank for your support. Hope you have a good appt Friday too.
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Hi Ladies,
I am leaving this thread to head back to the Femara group for the 3rd time. My MO took me off this for a couple weeks, the pain decreased some, and he wants me back on the other. Sadist that he is.
Best of health to each and every.
Much love
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Hope things work better this time on the Femera, susan. We'll probably "see" each other at other threads.
welcome, runhappy, nicola, and sandersmomma! The best part of this whole dx is meeting all the wonderful women on these boards.
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I wonder if someone could explain something that confuses me about AIs vs tamoxifen. Tamoxifen is a SERM, meaning it works on the estrogen receptors that fuel breast cancer. AIs prevent aromatase from converting fat into estrogen. But what happens when a person on an AI is still exposed to substances that mimic estrogen (especially ones that aren't fully understood, like parabens, soy, BPA)? Does that estrogen-like substance get blocked by an AI? Part of me worries that an AI won't be enough protection -- it's my understanding that tamoxifen is acting like a Trojan horse, latching on to BC estrogen receptors and tricking them in to thinking it is estrogen. Is my understanding too simplistic (probably!) ? And then I've been reading that AIs offer more protection for ILC than tamoxifen does.
I'm still at least a year away from switching to an AI (still not officially post-menopausal), and I know I could ask my MO these same questions ... But I find the explanations I get here from you knowledgeable ladies are often easier to understand. :-)
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Welcome new sisters! Hearing about Emory brought fond memories back to me since our oldest went to school there. We enjoyed our visits there a lot.
Susan, sending best wishes to you on your next path. Enjoyed your posts.
Gemini, wish I could help with your question....and hope someone more informed will, so we can all understand the Tami /AI distinction better.
Yesterday, I had a consult re: my burgeoning allergies at a facility that practices functional medicine and spent two hours sharing my health story. Such a different and integrative approach they have. One of the things recommended was that I start Vitamin C supplements. Need to make sure that will not pose a problem with Tami efficacy. Some of you may know...thanks!
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Gemini, I don't know the answer either but will share my MO's plan for me. I've been on tam for 1 1/2 months with no side effects. She had planned on me taking it for five years but says if I have no problems with it, she will keep me on for 10, even after menopause. She said she likes tamoxifen better than AIs, less side effects and good for my heart, bones and cholesterol. I'm 48. I think I just missed my first period since taking tam. I have the period symptoms without the bleeding, which she told me may happen. Can't say I'm disappointed about that.
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When I get a break, I need to do a search and see if the answer to this question is somewhere on this thread -- but I thought I would be lazy (haha) and post my question, hoping someone can give me a quick answer....
I am getting vertigo. I get dizzy on standing, bending over, sometimes just sitting still -- it is not consistent, and has been happening for about 48 hours. Is this Tamoxifen-related? I have been taking Tamoxifen without anything but some mild hot flashes since Jan 20. Finished rads on Monday and thought I was home free, but now this. Any suggestions, wise ones?
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teamkim I don't know. I was fine other than joint pain for two months and it's been a downhill slide ever since. I finally went to see the onco today. She insists I need to keep taking it. My cancer was big and advanced. So, now try to treat the side effects. First one to attack is sleep. I'm not getting much. I didn't think I was having hot flashes at night. However when I asked my hubby why he wasn't in our bed this morning he said he thought it had a fever because I was so hot last night! I'm going to try melatonin for a few days and if that doesn't work she prescribed neurontin. I refused the Effexor as I have had problems win anti depressants in the past. Here's to hoping for good sleep.
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Teamkim, I don't know if it's tamoxifen. Another possibility is an ear virus. I had one years ago and couldn't move without help. Then a couple of years ago I needed PT for vertigo. Hopefully yours will go away on its own.
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team Kim, I'm thinking it is not tamoxifen. I have been diagnosed with vertigo in the past, (way before BC), BPPV, benign paroxysmal positional vertigo. It has to do with positioning of the head, inner ear. I would get it by looking up, down, turning my head from side to side, etc. If you google it, there are exercises to do to get rid of it. I get it a couple times a year, usually in the summer, and oddly it seems to be brought on after boating, I guess the rocking back and forth. Your inner ear is like a snow globe with floating crystals, and if one gets hung up on a hair or something, that causes vertigo. I know it can be horrible, especially if spinning makes you nauseous. Luckily I still like spinning rides at my age but would like to experience the fun of the ride if I'm going to get the spinning. Ha.
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Teamkim, interesting you had vertigo. Me too. It started for the first time this Saturday night when I woke up to go to the bathroom and almost fell to the side. Now I almost don't have it, but if I move my head down i still feel some vertigo, which I never had. I thought it was because of dehydration: I went to watch a golf tournament and was so hot that I thought it was because of that...now that you point that out, might be the tamoxifen...
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Well, all those possible other things might be it -- like with some of the chemo SEs, it is so hard to know -- could be Tamoxifen, or....
Could be congestion -- I have allergies and our pollen count has been high this week -- tonight I will try taking a Benedryl and see if that helps.
Could be dehydration -- I drank more water today and dizziness seems slightly better/less frequent.
Could be because I forgot to take all my pills on Wednesday evening (so missed a day of BP med, low dose aspirin, Vit D, B12, Cranberry, Biotin, Calcium as well as tamoxifen) -- I will see if regularly taking my meds over the weekend solves it.
Could be that I am grading papers and maybe using my eyes too much -- I will be careful to take breaks throughout the weekend to rest my eyes.
If not better by Monday, though, I am going to call the MO, because I am traveling across country in two weeks, and I don't want the trip to make it worse. Tickets are no refundable, though, so I AM going....
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TeamKim...Benedryl and Tamoxifen don't go together, it's listed as one of the drugs not to tke with Tamoxifen.
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