"Tamoxifen Road" - Support and Encouragement
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Rain88, I also increased my activity, especially before starting radiation as I had heard that being active helped with the fatigue. I was walking at a moderate pace, 6 days a week for about an hour. By the time I started Tamoxifen, I felt better than I had in ages. I was able to keep this up for the first 2 months on Tamoxifen and then things changed virtually overnight. I found myself hobbling out of bed in the morning, feeling as though I had aged 10 years. I'm still walking, but not as long as the fatigue has impacted my endurance. I try not to get too discouraged, but I really thought that I was going to power through the next 5 years by making diet and exercise a priority. I'm going to keep moving, but with a lot less power
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Mom - yes turtle slow these days! I do feel better when I force myself to exercise. I had been going to exercise classes at the gym two - three times a week before Covid hit. I am active outside (I live on a farm) but it isn't the same as an hour long spinning class. I need to get that going again somehow. I do zoom yoga with my old gentle yoga group from the hospital and that keeps me somewhat limber at least. This medication and getting older takes effort!
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Yes, Rah, Mom2bill, I can totally relate to what you're experiencing; not fun.
On a different note, does any of you find that you're hair isn't growing that much? Due to Covid, I haven't cut it in 8 months and it's almost the same length! Meanwhile, all my friends had already gotten their hair cut at least twice! I am not too bothered by it, but really curious if it's just me.
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Rain, Tamoxifen does affect the hair, up to losing it all. Mine has thinned and, strangely is longer than it had been in 20 years without a haircut in that time. Interestingly now that I have been back on for a few months I seem to be losing some hair again and it is not getting longer. I am taking biotin and using a biotin/collagen shampoo which I think have helped. The hair changes seem to vary from person to person, just like most of the SEs.
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Beaverntx, I would be really upset if I started to lose it, on top of it growing so slow. I know it's not up to us what happens when on meds, but I really hope hair falling out won't add to the slew of SEs. Thank you for the biotin tip.
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I took Tamoxifen for 4 years. I started with Arimidex but it caused bone issues so my MO switched me to Tamoxifen.
I had joint pain, hot flashes and difficulty concentrating sometimes but I never experienced hair loss.
Diane
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Wow, that's very reassuring to hear, Diane! Thank you for sharing. I don't know anout anybody else, but for me, I am afraid that one extra SE, no matter how insignificant, might tip over the "Ok, I got this." attitude. There is a lot of stress in our lives and not only from this; yet we keep soldering on, encourage one another and hope for the best. I feel greatful for this site; it's been not only a source of information, but also a way to hear and learn from others' experiences. It helps feel I am not alone! So my fervent wish and hope for all of us is that the worst is behind! Diane, 4 years on Tamoxifen is SUPER! (((Hugs)))
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Started Tamoxifen yesterday. Age 60
Stage 1, grade 2, EP+ Her2-My oncologist has been a disappointment. I have met with her five times and she never remembers me, has gotten my diagnosis mixed up and never calls when tests come back. She requested a bone scan weeks ago after I explained I have had osteopenia for years and in anticipation of aromatese inhibitors. She never mentioned it, I requested it.
She said if it came back osteoporosis we would do Tamoxifen instead of Armoatese inhibitors. I stopped to see my OBGYN last week and she pulled up the bone scan for me since the oncologist had never called to tell me the results were in. My OBGYN had been having me tested yearly. She noted I Now have osteoporosis in the spine.
I went to the oncologist yesterday and she pulled up my record and said she was starting me on letrozole. I told her I could not take it because of my bones. She said she was looking at my report and didn’t see anything to warrant that. I told her to keep reading. She gasped and blushed then brushed it off. I told her how disappointed I am in the way she has treated me. She didn’t say anything. She prescribed Tamoxifen and Reclast. I asked her if Tamoxifen builds bone and she said no. I asked if Reclast does and she said no, it will just keep it from getting worse. I asked if my medications would interfere and she said no. I pointed out to her that she had prescribed Benedryl for me at the last visit and that you can’t take it with Tamoxifen - I had read that on this forum. She said she never read that. I asked if there is a way to test if Tamoxofen is working and she said no. When I arrived for Reclast infusion today, the nurse asked i had drank extra water before coming in and if the dr had explained I needed to drink extra fluids Prior to the infusion and For three days after and to call the dr if I get jaw pain ASAP. Nope. Dr never said a thing.Hoping to have zero side effects from Tamoxifen and Reclast moral of story - be informed and be your own advocate.
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Rain, I’m sorry to say that I have been finding several strands of hair on my hands each time I wash it, so the thinning has begun. My hair is still growing, but it has gotten really dry. I have seen people report hair thinning, but probably an equal number have stated that hair loss was not an issue. So, try not to get ahead of yourself on this one since there seems to be such variation in terms of side effects. I will keep my fingers crossed for you.
Beaverntx, I’ll have to start looking for a biotin shampoo. That’s for sharing that tip.
Rah, I’m with you regarding exercise. It’s hard to get started on many days, but I do feel better when I’m done...both physically and mentally.
Take care everyone.
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Rebalilly, I hope you can find a new MO! I changed recently and it was the best thing I could have done.
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Hi, I started tamoxifen a little over a week ago. My hair started falling out a few weeks after completing radiation. It's not a lot, but when I go to put my hair in a pony tail a few strands come out. I hope it doesn't get worse with the tamoxifen. Thanks to everyone for all of your insights on SEs. My MO said I could do two years of tamoxifen then switch to an AO for five years.
Rebalilly, the oncology nurse told me not to take benadryl because it reduces the effectiveness of tamoxifen. At the bottom of the link below is a list of medication to avoid that interact with tamoxifen.
https://www.breastcancer.org/treatment/hormonal/se...
Rah2464, I just bought a spinning bike so I could do spinning classes at home with the peloton app. I'm looking forward to spinning again.
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Rebalilly, I had a similar experience when I met the MO to which I had been assigned. He appeared to be totally unfamiliar with my medical history, including the fact that I have had osteoporosis for several years. When he recommended an AI, I had to tell him I have osteoporosis. When he started telling me about the increased risk of uterine cancer with Tamoxifen, I had to tell him I had had a hysterectomy, so that wouldn’t be an issue. The bottom line is that I left the appointment with a complete lack of trust in this doctor, and knew that I would never have another appointment with him. I switched to another MO who appears to be much more on the ball. Having confidence in one’s MO is so important, given the large role that they will be playing in our care for several years. It might be worth seeing if you have other options. Good luck
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Rebalilly I strongly urge you to get a referral to an endocrinologist for the osteoporosis. They are highly trained to help with that. I too have osteoporosis and my endocrinologist has been great. He's in the same hospital network as my MO and all the other cancer docs so they can all see what's going on with me.
Truly, get to an endocrinologist for the osteoporosis.
Edited to say I started on Prolia, had an allergic reaction to the second shot and will be on Tymlos in a month (daily injections for two years) because I want to be able to run w/o my bones breaking (two have broken--pelvis and foot). Reasonable goal, I think.
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thanks ladies! I think I am going to doctor shop and see an endocrinologist. I wondered for a long time, if I should have one. You pushed me forward. Thanks!
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Hi Pebblesv and Others,
It has been a little while since I have last posted, but in April I fell and broke my ankle (fibula to be precise), with the blessings of my Oncologist I got off of Tamoxifen for fear of blood clots forming due to my injury, with the intention of starting back once my ankle healed, as it was defined as a nondisplaced fracture, so no surgery needed. Ha! It is now August and I am still fighting with this fractured ankle, it has now become a non Union fracture, so had CT scan last Thursday, orthopedic dr has me not bearing any weight on it and will find out more at Aug 19 appointment, ugh! So surgery might be in my future!
Plus, not sure if Tamoxifen is safe for me if I have same genetic condition that causes blood clots that we just found out my brother has, a pulmonary embolism almost killed him a few months ago. I am waiting for his medical records to arrive so that my Oncologist can test me for what ever condition he has.
I can't switch to AI due to broken ankle, Oncologist told me that Evista might be an option for me to try as Tamoxifen has wrecked havoc on my uterus. About two months after stopping tamoxifen I had a period like bleed, weird, I had like a PMS headache and cramps, uterine biopsy was negative for cancer. Gynecologist suggested that maybe she can do a DNC at same time as my ankle surgery should I need it. I didn't know that you could have more than one surgery at a time!
I have been taking tamoxifen for the past 3 years and my oncologist told me that some ladies do ok after stopping it at that point in time. A friend of mine who stopped taking it after 3 years due to side effects told me that there are no guarantees and it is a crapshoot!
So, anyway I am literally in limbo for right now and that is the story of my life!
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hi everyone.
I want to know if anyone has been given a prescription of 5mg tamoxifen?
I am 48 and just diagnosed DCIS on the left and ADH LCIS on right. I just had mastectomy on the left and lumpectomy on right.
I am given the 5mg tamoxifen and wonder the strength is weak.
I am going to find a MO and ask this question.
Also for those of you who had an operation to remove the ovarian s for presentation, what made you the decision? The MO suggested?
I am in Chicago by the way
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Grdngrl I have peloton envy ha!
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Celand - I hope your ankle starts to heal. You mentioned that Evista is a possibility for you. I fell Nov 2018 and broke a bone in my shoulder which prompted me to get a Dexa scan in March 2020 (I kept putting it off). I was diagnosed with osteoporosis. I have been taking Raloxifene (generic Evista) since March along with some special bone vitamins since April. I just wanted you to know that I am tolerating the Raloxifene just fine (so far). Fingers crossed that all this works.
I did not try Tamoxifen so I cannot compare it with Raloxifene.
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GoKale4320,
I have wondered if I might have osteoporosis and that might be a reason why my broken ankle is now a non Union fracture 4 months after my injury. Surprisingly my orthopedic dr did not even mention this possibility. My oncology does want to do another bone density test on me, the one that I had done in 2016 when I was first diagnosed was normal, then I took Arimidex for 2-1/2 months, horrible bone and joint pain for me, I do have arthritis in my spine and I think my fingers as well.
Anyway, I do plan on getting another Dexa scan in the near future. Hopefully my ankle heals, will find out ct scan results next week and whether I will need surgery.
Thanks for sharing your experience with Evista, hopefully it can work for me. Although I can stop taking hormonal therapy, I wanted to take something for 5 years at least.
Celand
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I just saw an oncologist for the first time today to discuss risk and taking something for prevention after excision of adh and fea. My surgeon mentioned tamoxifen but the MO went right to Evista. I'm premenopausal at 51 and the MO said it would do the same for me tamoxifen would without as many side effects. Still thinking it over while I have none density scan.
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Bellevue, what is the dosage your MO recommend please? Mine said 5mg low dose and said it is the same effectiveness as 20mg...
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everythingwillbefine my MO would disagree with yours on that dosage. The thing is no studies have been completed that show a lower dose is as effective. It may well be but we have no research to back that up.
I do wonder if your MO believes that to be the case for that it's due to your dx.
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edj3,
I do not know. My surgeon prescribed the 5mg for me and I wonder the same you do too. I am concerned about the effectiveness.
I will have 2 appt on 9/1 and 9/2 with 2 different MO and I will confirm with them.
I have the pills and have not taken yet and will wait till I see them.
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everythingw…, below are a couple of links to articles on a study for low dose tamoxifen for DCIS, LCIS and atypical ductal hyperplasia. Both links are referencing the same study.
https://www.breastcancer.org/research-news/low-dos...
https://journals.lww.com/oncology-times/pages/arti...
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Grdngrl, Thank you!!
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getting my tamoxifen today. I’m 44 and haven’t had surgery yet. Dr wants to start me now. Have read a little and continue reading. Wish me luck please.
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lady,
Why you take tamoxifen before surgery? I had asked my surgeon whether I should take it before and answer was no....
What dosage are you taking
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I stopped taking it when I broke my ankle for fear of blood clots from my injury and in case I needed surgery. It turns out that I will need surgery because my fracture has become a nonunion.
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everything - I believe most people do not start until after surgery. My tumor measured bigger on mri than the ultrasound. Less than 2 weeks apart. Has this happened to anyone else? It was 6mm and 11mm. Other two areas are 5mm each on mri.
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Ladyc good luck! Wishing you a successful surgery and no Tamoxifen side effects!
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