"Tamoxifen Road" - Support and Encouragement
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Hi everyone! Michelle in cornland thanks for starting this thread, good to see some familiar faces here too (hi pup mom!).
I've been on a 10mg dose of tamoxifen since Jan. 16th this year. So far my oncologist is OK with me on this “half dose" due to recent research showing smaller doses were just as effective for some cases. I'm still debating when and whether to go to a full 20mg dose - at this 10mg dose I'm doing great. Very minimal if any SEs - had a little nausea the first week but if I eat something I don't have it. No joint pain. Not even sure if I'm getting hot flashes - I do get warmer at night and need to open the door or window in the hours after I take it (8pm) but it's not the intolerable crazy sweating thing some people have described, and I'm usually cold, so maybe I welcome feeling warmer at night!
The only obvious SE is that it messes with my cycle. LAmargarita I think you asked for pre-menopausal women how our cycles are... I used to be very regular at 25 days. Post-tamoxifen it was 22 days then 30 days then 40 days then back to 26 days between cycles! My oncologist said that's normal and would get a bit more regular after 6 months if I was not approaching menopause so we will see.
I'm keen on sticking with this but also in a manner that does not reduce my quality of life, so I keep researching and researching on how I can combat or prevent side effects. So far I know that exercise and especially yoga helps avoid or combat the joint pain (and for me I have had NO joint pain with this), taking it at night seems to work for me as I do not have fatigue and can also sleep through the night fine, I take fish oil to help avoid blood clots, and dare I say keeping up a healthy sex life with the husband helps avoid vaginal dryness. Sorry for the TMI but that's also important!
Oh and cute furry paw paws helps with staying positive overall!
I've only caught up on page 1 of the thread so will check in again after I've had a chance to catch up more. For anyone still staring at their bottle of tamoxifen on the table, I was super nervous too, it's turned out better than I anticipated so far. My advice is just to try it, may be fine, if there are SEs you can switch up dosage or brands or find ways to combat them (should be a lot of good advice here on this thread).
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Hi Pebbles, good to see you here! The puppers are adorable as usual!
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Hey, girls love seeing you here!!! And of course, all the puppies too!!
Pebbles, I remember when you started your Tamoxifen journey, and I remember what I said...."work with your MO to find the best way to take it." It is so important to really work with the MO, listen and give them feedback. They are learning about the meds too. Your dad is an onc, right? Hopefully, one day, we will have more information for the optimum doses.
My puppies are too funny. They have now learned how to jump the internal gates, leading from the family room to the rest of the house. They jump onto the top of the rail, hang on with all fours, and do a gracious grand plie'. They don't hurdle the 24 inches yet, but have figured out how to get over and then back over to their area.
Son returned from grad school today with all of his "stuff." I did as much as possible in his room yesterday, the rest is up to him. His classes resume in two days. Not much of a break.
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Hi all. I'm on my last 6 months of Tamoxifen. There have been very few SEs for me, thankfully. The only notable one has been chills starting an hour or so after taking it. This is my last safety net, so to speak, and I'm getting nervous.
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Magicalbean, I just took 10mgs of my 20, and am sweating from head to toe. After I take my second 10mg tablet, things calm down.
Good job on getting to the last six months. Many people do just fine on Tamoxifen, but they don’t come on here to tell others. I am so glad that you did. Is your goal 5 years?
I think, from my personal viewpoint, that the first few months are the hardest. Just like anything new, there is a learning curve for our bodies too!
Starting next Feb, I enter my 4th year. I keep my eye on the calendar, but with minimal side effects I may stay on it longer, to treat osteopenia. I think my MO is thinking 10 years. But, I will just take it as it comes.
We will have to do a countdown and a virtual bell ringing when you finish. Hugs from the heartland...
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5-year survivor ER+; I had other complications that delayed starting on Tamoxifen
11/2014 started TM and after 5 weeks my doctor had me stop due to all the side effects: dizziness, clumsiness, balance, dry skin, itchy ears, constipation, and the worse....neuropathy of my fingers and feet. The side effects were gone by March 2015.
Feel good today.....
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Hi.
Experiment with different brands.
I have been on Tamoxifen since 2016
Suffered joint pain so bad (in the mornings getting out of bed my feet were so bad I’d have to hobble like an old woman to get to the loo!!), so I swapped brands til I found one that worked for me.
I don’t think there is one that suits everyone, so you need to experiment.
Wokhardt is the one that works best for me. Teva was good too.
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DRY EYE/MGD: Avoid with Proactive Care
The one SE I have developed that I ask you all to watch out for early is Dry Eye/ Meibomian Gland Dysfunction. The suppression of oestrogen ‘dries’ us up, so please get a wheaty bag that you can heat up and pop on your eyes every day to proactively keep your meibomian glands nice and clear in your eyelids (they release the oils that help your tears adhere to your eyes.. when they become blocked your tears don’t stick, just run off, giving you dry painful eyes prone to infection.)
I am convinced that had I applied a warm wheat bag proactively the oil would not have solidified as bad as it now appears to have. Nothing the eye specialist did over past year helped (my eyes hated the expensive Ikervan drops, just kept getting infections😱) so he’s now discharged me as there is nowt more he can do! (Can’t get Lipiflow on NHS.)
Mine are now completely blocked, and I am saving up for Lipiflow treatment as my last ditch attempt to unblock them (£2400!!!😱)
Honestly, this makes my life hell. I can live with the other SEs as minor irritations, but every morning my eyelids are stuck to my eyeballs😫
(I am on Wokhardt 20mg (Wokhardt was best for joint issues for me after trying every other brand over 2 years. My eye problem started 6 mths before going onto Wokhardt)
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Hi, Lala, thanks for sharing. Does the weather affect your dry eyes? I noticed that you live near some heavily forrested areas in England. Does that change the air quality where you live? In the US, most insurance companies would cover procedures to restore eye health. Not sure about what is offered in your country. Take care.
P.S. I love British TV programming...currently watching Wycliffe. I have watched so many shows over the last 10 years!
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Hope everyone is having a great weekend!!! We had a big brunch for my husband and my daughter's boyfriend's dad. My dear mother in law came along as well. I thoroughly enjoy my daughter's bf's parents. They will be moving soon to a house they built on Lake Cumberland. My son, who arrived home yesterday from grad school, is so the opposite of my daughter. He is a major hipster, who did his CPA internship with a man bun, and she is a preppy sporty girl. Their significant others are very similar to them. But, the bottom line, is that most of us played organized sports, have a fun sense of humor, and they like motor head cars...(not me...I don't care as long as my ride is smooth). Now, it is nap time!!
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Michelle - My husband was home this weekend and it was nice not to be the only one in the house to entertain the cats. Oh, and I like having him home too! : )
You asked what tops I've found to wear. I'm experimenting with different styles. I opted not to have reconstruction, therefore adjusting my wardrobe. So far I've found that light rayon fabric (due to hot flashes) with a simple print, square neck or v-neck look best and doesn't make me look completely flat. Costco cami's are my favorite, night and day. They also have bralette's with very little padding that look cute under a form fitting shirt.
Counting the days to start Tam; July 1. My MO returns from vacation on the 24th. I've left her a msg that I want to discuss a lower dose to start.
My GYN drew blood last Friday to see where I'm at in terms of menopause. She wants to know before I start Tamoxifen. I've been experiencing hot flashes, night sweats and v dryness since Feb. Although, last week a flood gate must of broke open. For others having issues, I've found brand name sliquid satin moisturizer to be extremely helpful.
Have a wonderful day!
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@416, A good friend of mine, recently had her silicone implants removed, that were placed in the fall. Her body had a capsular contraction issue and had been encasing the implants, causing them to leak. She decided after 4 surgeries, for DCIS, that she was going to not have any reconstruction. She was an A cup to begin with, and with implants, a full C cup. She uses layers of tanks, soft rayon types, to add shape. If you did not know that she had surgery, you would never know by looking. She is in her early 40's.
In the summer, when we have 85 and above temps, my face and chest become flushed. I try to avoid the extreme heat. My husband always hears my favorite quote, "I don't like extreme heat, and with extreme cold I can bundle up." We have had polar vortexes where we live, and had days of "feels like" minus 30 degrees. So, in our area of Illinois, we can go anywhere from -20 to 101 degrees. That is a swing of 120 degrees. As I was helping my son sort his Chicago winter wear, hunting wear, year round clothes, construction apparel, office wear and summer wear, he remarked that he had too much stuff. He was a builder with his father, building future rental portfolios, during his four year undergrad program. (He was honor roll all the way through and worked.) During his CPA internship, he had a man bun, (pictured below) and now is finishing his master's degree in Chicago. So, he has alot of different types of items. I bought him some space bags that are deflatable, and explained that our area of the country and his hobbies, require different types of apparel. I think Marie Condo, the organizing guru, is great if you live in the south, Florida, and California..... and have a simple life... But,, places like where we live with variable weather, lead to needing a variety of "stuff."
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@416 I can send you some of my 8 to keep you company. Most nights the kids have their significant others and friends over. There are so many cars, that we look like we are running a huge car lot. What does your husband do that keeps him away? My little guys are sending lots of hugs your way.......
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Another pretty day and more rain tomorrow. I am looking for a high quality agenda//planner. It is hard to find professional grade products. Considering making a custom one, but a bit of hassle. I write down everything in great detail, and need a new one starting in July. How is everyone doing this week
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Hello all! Happy to see this thread! I started tamoxifen in early October 2018. My side effects have come and gone, but generally have been night sweats, joint pain, irregular periods, and some insomnia. Some times the side effects are tolerable and sometimes I can’t wait to be finished with this drug. My newest side effect has been pain in my back that radiates around the top of my pelvis. Anyone else with that one?? I’m stiff in the morning and when I sit for long periods of time. When I’m up moving around it’s not as bad.
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Hi Everyone:
I've been on Tamoxifen for 2 1/2 years and have had lots of side effects. Some of them are more tolerable than others. I had my last period in April, 2017. In March of this year I starting bleeding, spotting and having vaginal discharge. I had dull achy pains but recently had some sharp stabbing pains in my pelvic area. I did go to my OB/GYN and he did an endometrial biopsy which was negative. I then went for a vaginal ultrasound. Found out that my uterine lining is very thick (19 mm) and there are many cysts or polyps. The doctor wants to do a Hysteroscopy to biopsy the polyps and remove the bulky lining. Has anyone else had this done and I'm wondering if the thick lining will just grow back again??
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Hi, Radon, I had a hysterectomy and oopherectomy in Jan 2017, in preparation for taking an AI. My MO found osteopenia and I take Tamoxifen. I think that the uterine scrape is fairly common. I love not having a cycle every 24 days and I feel amazing. I am sure that your obgyn and MO will present you with some options such as shutting down your ovaries, etc. I was going to have to shut mine down indefinitely with monthly injections. Glad I went the route that I did. Others will come along and weigh in...
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Sone of the other threads that have been helpful on here are Lumpectomy Lounge, my other thread Uplifting and Lively Messages that I started after rads in Dec 2016. Having the support from those threads have helped me to reach out to others. Check them out
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Looking for planners, for the academic 18 month variety. Came across a saying, "YOUR VIBE ATTRACTS YOUR TRIBE." How true... I want my vibe to be fun and positive, and hopefully that is reflected on here!!!
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LaLa, Thank you for letting me know I am not alone with the dry eye. After a recent visit to the eye dr. I got the eye compress mask and I thinking things are clearing up for me, but I thoroughly sympathize with your situation. Definitely a side effect to be aware of (although it seems a bit rare) and take preventive measures when it occurs. I found that eye drops alone didn't really combat the problem.
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Findingoptimism, thank you for your contribution. My eyes leak a bit on the outer corners, when I sleep.
Thaddeus is quite the jumper. About 2am, he jumped out of the 36 inch playyard, jumped the 24 inch indoor gate and proceeded to find me upstairs. I slept down on the couch with them, and they were at peace. I needed sleep. Today, I am going to create some type of rope woven roof. I am considering agility training for Thaddeus, as I need something to challenge him
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Mchelle- why did you begin hormon
therapy 4 months after you started
rafiation
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Michelle - I'd love your dogs! What adorable pictures. Sadly, I wouldn't have enough time to give them and my cats the attention they deserve. I know you're kidding though.
My husband is an Industrial Electrical Superintendent; works on national projects. He loves his career. If he wants to stay working with them he must travel. It's been 8 years and we've become used to the lifestyle. Projects are anywhere from 3mos to 2 years and he's typically in southern states. I don't think he's shoveled snow in 6 years. Of course it never snows when he's home!
It is difficult to have a minimal wardrobe when living in a state that has four seasons. I try, then end up needing something because of the weather.
I've been swamped this week catching up with work. Back to a full time schedule again. Yay!
radonlady - I had a Hysteroscopy in Feb this year. Everything went well; the biopsy was negative. I felt fine within 24-48 hours. If you still have a monthly cycle be prepared for it to stop for about 6 weeks. I think it's well worth having the procedure and it is very common.
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Cassie, I worked with my MO to start after the holidays. Then, I ended up having a major surgery in January. Not a fan of overlapped therapies, but finishing and moving forward.
@416 You so understand my 4 season plight. How is the weather in your area now? My SIL is from Gross Point. Do you ever go south with the hubby? I never mind alone time, as it gives me a chance to be reflective.
Seeing my MO for my quarterly right now. Always happy to leave. Hugs to all!!!!
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Michelle- interesting-( and quite understandable.)
I see from various posts
that the start of meds seems to vary
quite a bit from person to person
and i wonder why. With radiation it seems that its the goal to start it from 4-12
weeks out from surgery. Yet with tamoxifin
etc- its all over the map as to when
people start...so I guess its not
as pressing in some early stage cancers.
I wake up every morning and stare
down that unopened box of tamoxifen-
gathering more dust- hoping that this
will be the day i decide- and there is
no end to this indecisiveness-benefits
vs risks are equal...am i playing a game
of russian roulette- like- is my window
closing- thats why i asked ....does
window shut etc... i am trying to force
myself to choose .. clock ticking.
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Cassie, talk with your doctor about starting on a lower dose, for a month or two. It is not something that can be put off indefinitely. Have a timeline for starting and stick to it. Even with my background, I had read too many negative stories and was scared to start. There are a lot of people, men and women, who do fine. They are not posting on here, but are living their lives. I am here, I am staying and sharing my journey. It is doable
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Weekend plans, anyone? Going to our club for trivia....so fun we laugh our butts off. Theyshould really read the wrong answers. The answers that we come up with are so hilarious.
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We will be shopping for new lawn furniture tomorrow, then dinner with the grands on Sunday. Have a great weekend everybody!
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Pupmom, new lawn furniture sounds nice. I have a metal set, that is super sturdy. I think it was originally from a restaurant. Bought at an auction 20 years ago. Two years ago, I spray painted it and bought cushions at Pier One at the end of the season. I almost gave it away, but the quality was so good.
I keep my puppies in a playyard that is 3 ft tall. Thaddeus has been hopping out for a couple of nights.
I tied a stretchy sheet across the top and they did pretty well tonight. We had incredibly loud thunder that woke me and then them. I played dog therapy music for several hours to keep them relaxed. Trying to get them back to sleep now, with minimal fuss.0 -
Good morning all...
I am brand new to the tamoxifen clan as I started on Thursday and have had 2 doses. My first went fine and then yesterday I felt sick in the afternoon and vomited.
Now, I started it the same day as I had my second round of Kadcyla so I do not know for sure what the effect was from. I did really well first dose of Kadcyla so I tend to thing it was the tamoxifen or a combination of both being new to my system.
My MO put my on Tamox as I was still getting my period regularly at 51 and the last time I had it was a month after starting chemo and a month before I turned 52. I was definitely thrown into chemopause but also at the age where menopause must have been lurking but not moving in.
Hope all of our se's are minimal and that all of this crap does what it needs to do. And because of all the animal lovers, this is Stan. He moved in 3 weeks ago
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