"Tamoxifen Road" - Support and Encouragement
For those that are taking Tamoxifen, considering taking Tamoxifen and need support, and for those that have completed Tamoxifen Therapy. There is alot of good and helpful information on many threads. Thought it would be nice to have information and experiences logged together on Breastcancer.org in a main Tamoxifen thread.
I have been thinking about starting this thread for awhile. I am in my third year of Tamoxifen!!! Yeah!!!! But, in the beginning, I was a chicken and scared to take Tamoxifen. I have worked my way through several stages of Tamoxifen therapy, and am doing amazing.
Please share your ideas, questions and personal journey on The Tamoxifen Road. We can help each other succeed in our Tamoxifen Therapy.
Comments
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Hello Michelle, I'm writing from Athens, Greece. Nice to meet you (not so nice for the reason we meet). I've started Tamoxifen (Nolvadex 20mg) at November 2018, after chemo and radiation.. I wanted to ask you or anyone else might write here: did you have any dizziness? or feeling lightheaded or couldnt concentrate? the odd thing is that I've started to get dizzy only last week and I can tell you that I've got a little scared...the thing also is that I broke my glasses and I'm using my old ones so maybe the dizziness is from my eyes...I've asked my MO and said its probably that although tamoxifen also has that SE listed...
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Hi!! I am over 2 years into tamoxifen. I hate it but would be too afraid to stop. I am only 41 and have a family member with stage 4 that developed way after original dx.
Anyway I have posted other places, but I get to experience joint tendon (mostly) and muscle pain. I am so inactive out of necessity and I hate it.
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gb2115...so sorry you are suffering from side effects of Tamoxifen. Unfortunately the side effects you are experiencing are not uncommon. I'm sorry it has left you inactive since exercise is so important. Hopefully your symptoms will get better with time. Just know you are not alone and we are all here to support you. Hopefully someone will come along who has had the same side effects and give you some suggestions. Good luck to all navigating this complicated disease.
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Notered, I take 2 doses of 10mg Tamoxifen and spread them out by 4 hours. It works for me and I am doing great. The key is introduction to anything new, has to be gradual. Work with your MO to find the right way for you to take this med. You have been through a lot in a short amount of time. I believe it takes a couple of years to find equilibrium in our bodies. Radiation therapy made me a bit dizzy. I cannot take 20mgs full strength, that is why I take 2 10s
Gb2115, thanks for joining us. Magnesium is a wonderful supplement for the types of aches you are experiencing. Epsom salts soaks really work too!
Dtad, are you on Tamoxifen therapy? This thread is for those taking it or have taken it. We are living this path of treatment together.
Hugs to my new members on this thread. We can do this together!!!!
This week I am at a design conference ...,, fun fun fun!!! Pharmacy and MBA Executive by education, designer by heart.
Life is wonderful!!
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Hi there,
I have been taking Tamoxifen since August 2018. I've been dealing with joint pain treated by physical therapy and recently got prescribed an anti inflammatory cream to deal with this side effect. And the vaginal dryness is real y'all!
Question. For those of you who are pre menopausal, how far apart are your periods?
I had on the clock monthly periods for about 4 months after starting Tamoxifen. Then it switched to about every three months. However I just had a cycle about a week ago and I'm spotting again! I know non chemical induced menopause could be as erratic but I didn't expect back to back periods. Anyone else experienced the same?
Thanks!
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Lamar’s, prior to starting Tamoxifen. I had a hysterectomy and oopherectomy. I take Tamoxifen because of osteopenia.My cycles were nonstop after radiation, and I was going to take Lupron indefinitely. My kids are 20 and 22, and I had cycled with my daughter for several years. They say that women cycle together, anyone else in your household? It is very common to have irregular cycles or no cycle at all. Ask your OBGYN what they think. I have quite the opposite issue with vaginal dryness. Not dry here.
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Thanks for your answer Michelle_in_cornland. I will check with my Gyn about the erratic cycles. My daughters are not yet teens so I don't have anyone to cycle together.
And I find it hopeful that you are taking tamoxifen to also treat osteopenia, as I was just diagnosed with mild form. I was already looking at other medications to discuss with my onco, I will add questions about tamoxifen in there.
And lucky you! I have been using a couple of different products recommended by my Gyn to deal with the vaginal dryness, plus lots of coconut oil.
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Lamar's, I do feel fortunate that Tamoxifen also strengthens the bones. That was a plus.
Time to time, I deal with little annoyances, but am grateful to have a med that I can take
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I have been on Tamoxifen for 6 years, and Aromasin for 2. I have 2 more years to go on Tam, unless they change the guidelines again. If they do I can cope with it, because I have very few SEs. When I first started taking Tam, I had vicious hot flashes, but those are gone thanks to Effexor.
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Thank you for starting this thread. I am just finishing my first month of Tamoxifen. I am not liking the side effects, but they could definitely be worse!
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Michele in cortland...yes I took Tamoxifen for a short time but could not tolerate it. Not sure why you are questioning me. I was only being supportive to another member. Isn't that why we are here?
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Welcome Pupmom and lightning!!!!
Pupmom, we have been at this awhile. So glad we can join together and create a community for those taking Tamoxifen. Hugs, girl...... did you know I have 2 9 month old Miniature Schnauzers? Theodore and Thaddeus make me so happy. I have been at a conference this week and had to FaceTime twice a day. The struggle is real....missing my fur babies.
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Awww, Michelle, I know what you mean about missing those furbabies! I'm retired so can be around Pansy most of the time (can you imagine how spoiled she is!?). But we go on an international trip once a year, rarely twice, due to conferences my DH attends. I love to go, but hate to leave my little one behind. We have a dog sitter, who works at our vet's office, stay in the house with her while we're gone, but she would rather have us home. Sigh, we do what we can.
I'm so glad you started this thread! Hope we can give lots of support and information to those on Tamoxifen. This cancer journey is such a challenge, but people need to understand that it can be managed!
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Pupmom, My beloved 14.5 year old Mini Schnauzer, Sylvester, was by my side the entire time after my diagnosis. He never left my side. Because of Sylvester, my husband did not have to deal with my anxiety or fears. My husband, from a non med background would have been overwhelmed. Our son had just left to study at Bern, in Switzerland. Our daughter was starting her first year in college. I believe that dogs can be great companions during the breast cancer journey.
I stayed at home all last summer and early fall, to be by Sylvester's side as he went to the Rainbow Bridge. I was comply devastated, as I had also lost my mother in May last year. I had been looking at breeders for over a year and could find none that truly loved my breed. AKC contacted me with 2 bonded twin minis that had to be sold and taken together. I found them, and my heart is so full of love and joy. And, I found a wonderful breeder. If I did not have bad allergies to cats and certain dogs, I would have adopted. My once empty nest, is no longer empty and the kids plus serious boyfriends and girlfriends are back for the summer too!!! That makes 8 including Theodore and Thaddeus. My heart is full and my home is full....I would not have it any other way
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Michelle, my beloved yorkie, Chloe, helped me through my cancer dx and treatment. Then, 4 years later I helped her cross the Rainbow Bridge, after she was diagnosed with brain cancer. She died at home in my arms, which is exactly the way we both wanted it. A few years later we adopted our precious Pansy as a 4 month old puppy. She helped me through spinal surgery and 2 hip replacements. Animals are such comforters and healers!
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Hi dtad- thankyou for posting! your
tamoxifen experience is invaluable to
me- you see, its still sitting on my dresser
and I cant bring myself to take it...arghhh
We have the same pathology- are
you taking anything now ? I am
debating tossing them.
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I am so excited to have so many girls write to me personally, excited to begin a new positive thread for our daily lives. Pebbles, Hopeful and Pupmom, we are going to have so much fun!!!! Taking pics of fur kids whenI get home
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Can't wait to see those darling pics Michelle! Here's one of my favs of Pansy.
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So cute
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these are my guys0 -
They are adorable!
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Dtad, I guess I am a bit confused, because all along, these last several years, I was under the impression that you rejected hormone therapy. That is what I thought I read in the above post that you made the other day. If I would have known that you tried Tamoxifen, girl, I would have been there to help you. I always try to find ways to counteract side effects, when I find medications essential. If you ever want to give it a go again, please let me know. I will be available to offer support and encouragement. By the way, it is Cornland....but most people would think it was Courtland....because of the family of lawyers and now doctors..... everybody is in the courts either as expert witnesses or attorneys. Big hugs from the Heartland.....
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Well since you asked. I did refuse aromatase inhibitors from the start. However, my breast surgeon convinced me to try Tamoxifen. I was on it for a few weeks and had horrible side effects. I have no interest in trying it again. I have lost 30 pounds and exercise daily. This has been shown to lower recurrence rates significantly. I'm happy for anyone that does well on it and I have never disputed their effectiveness when taken for the recommended time period. The footnote under the tread stated this was a safe place to share so I dd.
cassiecanada....I would be happy to talk to you but I do not want to discourage you or influence your decision. We all have to make our own informed decisions. Plesse let me know if I can help in anyway.
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I remember when I was diagnosed, and being in a state of shock. I was diagnosed very quickly, from a mammogram on Monday, to an ultrasound on Tuesday....and then the news. I headed to my friend's house, who was off work that day, she was my radiologist. We did the biopsy on a Wednesday. Everyday after that, Sylvester (the OS - original Schnauzer) and I would pack a daily bag, and go to my sister's house to camp on her couch. He never left my side, during the entire process and I believe he kept me grounded enough to make well thought out decisions. I do have a great husband and children, but did not want to burden them with my shocked state. My son was leaving for college in Switzerland 2 days after my surgery, so my husband/daughter/son were focused on seeing him off. Between my sisters (twins), my nieces, and Sylvester, we made it through surgery with the least amount of impact to my non medical husband and children. My sisters are both in the healthcare and education fields. I believe that I suffered some type of stress trauma, and that my dog played a key role in support.
My two puppies, Thaddeus and Theodore, came from a breeder that breeds minis for certain situations. It just so happened that the two I have, could not go to their intended location, became available and that is where AKC became involved. Because of their breeding, they hug, smooch (we touch noses), and snuggle any time they have a chance. Even for people that are reserved, my puppies have worked their way into their hearts.
If you would have asked me a year ago, right after my mother passed on and Sylvester was in his last few months, if I thought I would have another dog.....I would have said maybe one. I just can't believe that I was lucky enough to have two minis. They are a big part of our family life and I am so grateful to have them with me. It is totally unproven, but I believe that pets help breast cancer patients live very normal lives, and have helped ground me on this journey.
Happy Sunday, everyone....
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Michelle, you know I completely agree with you! If we could package unconditional love in a pill, it would be called DOG! Maybe we could take that instead of Tamoxifen and everyone would be happy!
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Had a great day today!!! Tired, though from the driving and attending the conference. Puppies got baths and de-matted. Just chillin' now with them. It was really pretty today and a perfect day for a boat ride on our local lake. We were celebrating my niece's 13th birthday, with all the bells and whistles. Next week our son will move home from DePaul in Chicago, with two classes remaining for his MST. I pray that this week goes smoothly for him.
I can always tell when it is time to take Tamoxifen. I can feel a little ache in my ankles, and once I have taken it...the pain dissipates. So, I take an 8pm ish dose and an 11pm ish dose. It actually helps me sleep. After radiation, I had insomnia so bad, that I created a thread to find solutions for the insomnia. What I learned was the the radiation, which makes most people tired, made me wired. I never had the one year of tiredness, but several months of insomnia. I am thankful every day that I can sleep, eat, walk, and live a healthy lifestyle.
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Hi All-
Michelle - Thank you for starting this thread.
Here's where I'm at... The Tamoxifen has been in my cupboard since May 9. : (
I'm determined to give it a try however, I was waiting to be cleared for full time exercise. The Surgeon and PT cleared me Thursday. So what I'm I waiting for? I've been exhausted lately and wanted to feel my best prior to starting a drug that could potentially make me feel a bit off. We think I'm so exhausted because my recovery went amazing well and I didn't give my body much rest. It's now catching up to me.
Prior to dx I was already experiencing hot flashes, night sweats and vag dryness due to a hysteroscopy/D&C in Feb. My monthly cycles were very heavy. They investigated, removed a polyp and abnormal tissue that tested negative. I have yet to have a period since that procedure. Although this week the dryness went away and I broke out on my face so I'm expecting to have a cycle soon.
In general I'm a fairly healthy, active 49 y/o. I'm working with a Naturopathic Oncologist as well. He said, take Tam for a month and then we'll see what supplements I need based on how I'm feeling. My calendar is marked to start July 1st.
Advice? Just dive in with the 20mg? Take in the evening?
Thanks!
Oh, and we have 5 fur kids! Cats =^..^=
Benjamin (M), Charlie (F), Ralphie (F), Blu (F) & Frankie (F)
The system won't allow me to post a pic.
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416, You just went through surgery. Give yourself a little break, before hopping into something new. You will find that your MO is very accommodating. Most MO's don't care how you start, 10 mgs for a month and ramp up to 20 (in some manner 2 x 10s, etc). My best recommendation is to be stable on 10mgs, take it at night, and be ready to walk. Magnesium and Vitamin D are going to be your friends to strengthen bones and alleviate muscle spasms and bone pain. How we start something, is irrelevant. It is how we finish that is important. Finishing therapy, whether 5 or 10 years is doable. But, physically, psychologically and emotionally, we have to accept a new foreign entity into our bodies, and basically make a home for it for the required time. When we are creating our physical home, we do not just move in everything at once, or even have all the pieces to fill a home. During the introduction of new medicines, we have to put the pieces together to tolerate and thrive. By putting the sustaining pieces together, you are going to ensure a smooth transition to a new medication. I build ideas, strategies, coping mechanisms on an incremental basis. We don't have to have all the answers when we start a new medication, but we can search for answers during our journey. Your cats can play a role in keeping you centered during this time.
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CassieCanada...
I really had a bug up my nose about tamoxifen. All sorts of reading prior to taking it showed that it has a pretty good track record of keeping cancer away. Then I came to BCORG and saw women who were taking tamoxifen daily and got a recurrence anyway. Hmmm. What is one to think of these very opposite outcomes?
If you take the tamoxifen and get cancer again anyway, how pissed off are you going to be?
If you DON'T take tamoxifen and get cancer again, how pissed off are you going to be?
These two questions, for me, made only one thing clear. THERE ARE NO GUARANTEES. There are statistics, best guesses. But nothing, NOTHING with this disease is carved in stone. So. How big of a gambler are you? Because that bottle of pills, they are chances. Rolls of the dice. You can take the pills, weather the side effects and do what you can to stack the odds in your favour - accepting that you might lose anyway. OR... you do NOT take the pills and accept that whatever happens, happens. Of course, even if you DO take the pills, whatever is going to happen, will happen.
I looked for research that said, "Every woman MUSt take 20mg every day otherwise she will NOT see any benefit from this drug. 20mg is the LEAST amount that will do any good." But despite everything I read never, ever,did I find the information saying that the lowest effective dose was ever determined. It wasn't. No research was done into HOW MUCH was NEEDED daily to prevent recurrence. They did find that at 60 and 40 mgs a day, women said screw this and quit taking the drug. The number of women refusing treatment because they felt so awful was very high - so they dropped the dose until women stayed on it - grudgingly - with hot flashes, aching bones, thinning hair and dusty vaginas....but they stayed on in larger numbers than before. So they settled at 20mg as the dose where the fewest women quit in utter misery. But that IS NOT the same as the lowest, effective dose.
There are some small studies saying that lower doses are just as effective. But these are small and inconclusive.
I don't enjoy feeling miserable, aching, sweating, going bald, having killer leg cramps, dribbling pee and a vagina that is as dusty as the Sahara in a windstorm. But I also did not enjoy the idea of doing nothing and hoping this cancer didn't come back. It was a tough battle. In the end I decided to split it down the middle. Like the small studies said, I started with 20mg, to get a good, high amount of the drug in my system, and now I take 10mg a day. I cut the pills in half. On Sunday and Wednesday, I take a full 20 mg dose. To keep the tamoxifen levels up there. My oncologist did not tell me I could do this. I told him I was doing this. I did not seek his permission.
I know full well my cancer might come back and someone will say it's because I didn't take the full dose. But no one can say that with any authority at all. We do NOT know the dose that works - therefore saying cancer comes back because you didn't take the fulldose is just plain BS. We also know we can take the full dose and get cancer again anyway! So.........
Even on mostly half a dose I have had the full range of side effects. They ease off then ramp up again. IT's always something new! But the aching joints did go away about a year in. I also switched to taking my pill at night and have not had leg cramps since - which is weird, you'd think taking it at night would make the cramps worse, but no. Not for me anyway.
CassieCanada, you can take these pills on your own terms. Take a full pill every other day. Or take 3 full pills then cut back to half pills. Or mix it up in any combination that you wish. Your oncologist will NOT give you his blessing so don't expect it. But if he is honest he will agree that the lowest, effective dose has never been established. Therefore .... there is no WRONG way to do this. Don't feel STUCK. If you start at 20 and want to cut back, do it. If you start at 10 and want to increase, do it. You are in the driver's seat with this. Sometimes knowing that you get to tweak and juggle the dose as you see fit can make it a bit easier to cope with. As my onc said, some tamoxifen is better than no tamoxifen. Good luck with your decision, whatever it may be.
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Thanks for starting the thread Michelle,
Courage, I am a similar age to you. The SE I have had from tamoxifen are limited to : no periods; dry skin (resolving) and hairloss
(. Other than that, I wouldn't know I am on it. i did one month at 10mg and then went to 20mg.
Give yourself a decent break and then give it a go.
Best wishes0
