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Tamoxifen and side effects after completing 5 years

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Re: Tamoxifen and side effects after completing 5 years

 
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Re: Tamoxifen and side effects after completing 5 years

I’m right there with you. I was on tamoxifen for 5 years for prevention due to an abnormal biopsy. Was 40 when I started. Had a few side effects during the time I was taking it but all totally manageable and overall felt pretty good. I took my last dose in July 2016, then developed a new large fibroid (I had never had any problem with these before) which started to bleed profusely and ended up with a hysterectomy in November 2016. Then had 2 years of depression (also totally new for me).  Crying for no reason, no energy, stopped finding joy in things I did before, no concentration/mental sluggishness.  I have just now started to feel like myself again but now starting with frequent hot flashes. I think my body was just really screwed up after coming off the tamoxifen. I actually feel much better mentally now that I think my body is doing it’s normal thing and I am now moving into a true menopause with natural hormone changes. I think I’ve been “withdrawing” from that darn tamoxifen this whole time.  

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Re: Tamoxifen and side effects after completing 5 years

My radiation oncologist nurse suggests that I take an anti depressant with tamoxifen and what a blessing it was. It decreased the side effects and i was able to stay on tamoxifen for 7 years. I really didn't have any issues except having vaginal dryness after 6 years of being on the medicine. Less than a year ago I was taken off tamoxifen and all is back to normal except now my chin is breaking out with acne. I've had a complete hysterectomy so I'm not sure what's going on. You might as for an anti depressant to see if that helps. Good luck!
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Re: Tamoxifen and side effects after completing 5 years

After having a lumpectomy and 20 radiation treatments in 2013, I then started 20mg of tamoxifen Jan 2014 so on Dec 21 2018 I took my last pill and the side effects I am having is unreal. I expected so much but wasn’t ready for this. I went through some side effects when I first started but they went away fairly soon except for the hot flushes they stayed with me both day and night with too many to count through out the day and experienced the vaginial itching my last 10 months but over the counter cream helped with that. Now that I’m finished after 5 years I wasn’t expecting these side effects to be worse that when I started. My emotions are through the roof I can cry at the drop of a dime, I can get irritated on the least little things, and I thought the hot flushes were bad before.....Not compared to what I am having now. I pray this won’t last too long as I am not wanting to take any more medication if I can do it on my own and with God on my side I know I will. If you have any suggestions for me please advise as I am open to listening to them.
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Re: Tamoxifen and side effects after completing 5 years

Hi Tarach,
I was on Tamoxifen for 9 yrs. I went off the drug Jan. 24th 2018..
I felt "different" for lack of better words.
I am thinking was my body's way of readjusting to the drug leaving my system.
It is now Dec. 18th 2018 and I feel much better. I have energy again, less depression, less anxiety, no more aching bones.. all together better.
I was scared coming off it, but my mammograms since '09 have been clear. Thank the Good LORD!
Also no more nausea.
Headaches are pretty much gone as well. My sex drive is back, and I thank God I did the therapy of Tamoxifen.
I pray daily and my Faith is stronger then it has ever been.. I am grateful for every day I have and with clear mammos. I pray for all my "family" (meaning all going through breast cancer) that may find health, peace and happiness.
My older sister is terminal with same cancer I had, and she has been battling for 20 years. I KNOW I am blessed to have been healed. Now I pray hard daily for her ...This may be our last Christmas together.. and my heart is breaking, but I would not want her to suffer in excruciating pain as she does daily now.
My Christmas prayers and blessings go out to each and every one of you going through breast cancer, or are in process of recovery. There is always HOPE. Stay positive and know I care about each of you.... Have a blessed Christmas and keep keeping onward!
All my love to you,
Your friend , Claudette (SILVERRAYNE) xo
Member

Re: Tamoxifen and side effects after completing 5 years

I am wondering the exact same thing. 74 years old and my oncologist 'almost' promised me she would take me off it.  My five years is up tomorrow and I would like to know about my returning hair, relief from this ongoing constipation, as well as other things. who can we ask??

Member

Re: Tamoxifen and side effects after completing 5 years

i am 5 years out and my oncologist has told me she will probably take me off of tamoxifen right away.  Will things go back to normal afterwards?? --such as hair , skin, no constipation, sleep habits, and bone pain??

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Re: Tamoxifen and side effects after completing 5 years

Why did you come off after 9 years ? - I've done 6 and ready to come off but my oncologist suggests 10 now. But having endometria issues.

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Re: Tamoxifen and side effects after completing 5 years

ME TOO! = Just completed 6 years, Oncologist suggesting 10. Don't hink I can do it....

Member

Re: Tamoxifen and side effects after completing 5 years

Hi Cindy D, thanks for sharing!! - Just curious why you had the hystectomy, oopherectomy and salpingo? Where you having issues? - I have been on Tamoxifen for 6 years and ready to come off!! - Of course I have many side affects (hot flashes, leg aches, bone aches, confusion, blurry vision but I just deal with it) My main concern is the endometrial uterine lining keeps getting too thick. I just had a D & C in December 2017, now it's thick again! - My Gyno says it's from the Tamoxifen of course.  She did a biopsy to make sure nothing had changed with the cells. (2 weeks before resutls) Either way she's suggesting a hystectomy, oopherectomy and salpingo. so I'm curious if you had this dues to complications with tamoxifen too?

 

Thanks & Blessings

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Re: Tamoxifen and side effects after completing 5 years

Very sorry to hear this, Oreolover.

 

You say you've been on Tamoxifen for 3 years. Do you have review sessions with an oncologist and/or your GP? You need to speak to a specialist about coming off the drug, if that is what you want to do. You need specialised advice; I'm afraid we couldn't give that. You might find it helpful to phone the specialised nurses at Breast Cancer Care on 0808 800 6000, or Macmillan Cancer Support on 0808 808 0000.

 

Have you written up some notes about your side effects? You might find it helpful to do that so you can take some information along to the oncologist/GP to aid discussion and for them to add to your health record.

 

I do hope you get the help you need soon.

Member

Re: Tamoxifen and side effects after completing 5 years

Hello ladies, I’m 32 years old was diagnosed with breast cancer when I was 29, got a lumpectomy and radiation in 2015 and have been on 20 mg tamoxifen for 3 years. I'm really contemplating on quitting the drug. I’ve beber felt worse. I’m 5’0 ft tall and used to weigh 109. I’ve gained about 15 pounds and these emotional breakdowns don’t seem to end. I’d like to know if you ladies know the good and the bad of coming off the tamoxifen. If the mood swings are worth it? Or what drugs I can take for the weigh gain or the mental disfunction I seem to have ever week. Please help!
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Re: Tamoxifen and side effects after completing 5 years

Dear Mads

 

It sounds as though you have made your decision and that your Mum supports you in it, so that's a really good start. I'm really glad your cat's supporting you too! You're right, they are very intuitive animals. Mine are a great comfort. I sometimes wake up in the small hours, when it's dark, feeling petrified and unable to get back to sleep. One of my boys (both neutered toms) is usually lying beside me. Without my saying anything he just starts to pur, and keeps it up for a whole hour or more. By 6.30 am I usually have two very upright furry statues sitting one on either side of me, staring at me very pointedly and purring politely in unison.

 

As for hormone therapy, I am contemplating giving up on it myself, and have an appointment tomorrow to see clinicians at the Breast Clinic. Letrozole caused a rash after 3 weeks, so the oncologist prescribed Aastrozole. After 9 1/2 weeks of Anasty I had gradually developed debilating effects which I'm pretty sure are a consequnce of oestrogen depletion, so I'm reluctant to try Exemestane as it's likely to prompt the same. I stopped Anastrozole 3 weeks ago and am still not back to my normal self. Although it acts differently, Tamoxifen appears to prompt very similar side effects to the AIs, whilst risking some very nasty possible long-term effects as well. I am considering refusing it.

 

Quality of life is so important. None of us should feel we have been forced into a treatment that has, in itself, made us ill. It comes down to deciding which horrors we are prepared to trade for which other horrors.

 

I do hope that you can become pain free soon, and that your work (and your cat) will lift your spirits.

 

All the best

 

 

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Re: Tamoxifen and side effects after completing 5 years

Thank you. It was my first week back at work as well and I was so tired after just one full day and two half days. I chatted to my oncologist and I’m due to see him in clinic in a few weeks. I will take my mum as she actually is supporting my decision to come off the Tamoxifen or at least take a break and see how I feel. I also have been given two different brands and I know some are worse than others. Just don’t know which! I’m kinda joking about my cat. She’s very intuitive and the night before my results she climbed on my lap (a rare thing) and purred. She hates that I spend my days of laying in bed so she jumps on me. Particularly the breast that is affected so it gets me up. My depression has only really been last two years, caused by major events, losing my Nan, a nasty violent relationship, the death of two young friends. I wanted to trade places with them and became morbid as I didn’t understand how a healthy 35 year old lady (on her hen night) went to bed and never woke up. Her young children found her cold. Totally off topic but just trying to explain how I’ve come to view life. It’s cruel, it’s hard, it’s overwhelming. Made a little easier when you have a partner but being single and horribly lonely I am desperate to just have a few healthy happy years. My oncologist knows my medical history-I felt brushed off- that I should be grateful for all that has been done. He said he had to fight with the “board” to get me chemo so I felt rude complaining -I had a couple of moments where I said I wanted to stop. But he is very tunnel visioned. As for breast care nurses. I was not assigned anyone specific and in my area it’s difficult to get to speak to them. Hadn’t known about the breast cancer nurses on here. I’ll give them a call. Thank you for your advice. I feel happy deciding to stop as the pain in my hands is affecting my work and I love my job as I meet people all day and it lifts my mood. Currently living on cystitis sachets, wearing compression gloves and unable to stay awake past 8pm. To think I was an insomniac before all of this!!! Peace and love to all you ladies xx
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Re: Tamoxifen and side effects after completing 5 years

Dear Mads

 

It will be difficult for anyone on this forum to give you really clear advice, as your case is specific to you and needs medical input.

 

You make it clear you are in agony on Tamoxifen, and have been for some time. This indicates you need specialised advice from your Oncologist and, preferably, a Breast Care Nurse as well. You could ask them if it's feasible to take a break from the drug to re-establish your baseline of health issues, so you can then have further discussions as to what might help you most. 

 

Stats are no more than a very general guide. (I'm a former maths teacher and taught stats along with other areas of maths.) Stats results are based on trials of 100 women and no-one can say which individuals they will apply to and which will be the exceptions. Decisions whether or not to take a treatment need to be looked at holistically.

 

What would be of greater help to you would be to arrange to see your Oncologist again, and to take along a breakdown of your medical history, including your depressive illness and other significant health issues you are having to juggle with cancer. (How long has your depression lasted? Are you on any medications for it which need taking into account?)

 

It could also help for you to list all the aspects of your life which make life worthwhile, and which you feel are being damaged by your present treatment.

 

On discussing all your health issues with him/her, you could ask them to run through all the known adverse effects of Tamoxifen and the other endocrine therapies, and relate these to your existing health issues. It could be helpful to discuss how each drug available to you might make your current health problems worse.

 

Try being frank with your Oncologist and give him/her a chance of understanding where you are.

 

Make a fuss of your cat and give him/her a chance of giving you love and attention back. I'm a great believer in the support and understanding of cats, and talk to mine a great deal! It's surprising what they understand and how supportive they can be.

 

It's sometimes tempting to want other people to make our decisions for us, but ultimately we have to decide for oursleves what we can cope with and what we can't.

 

All the best

Member

Re: Tamoxifen and side effects after completing 5 years

Thank you Appletree. I get confused with all the numbers. I might try this calculator thing! But my results were ER8/PR7/HER negative LVI negative oncotype score 23. So I am well aware I need a endocrine therapy. I’m permanently in agony going for a wee. Plus all the symptoms listed below and I’ve only been on them 6 weeks. If anyone knows the way to look at stats to see if I could just come off it. Again I don’t have children and no dependents. Just an12 yr old cat who hates me! So I’d happily take a chance. Can you take breaks? My oncologist is lovely but he just sees me as young and wants to do the best he can which I understand but he doesn’t understand how depressed I am and that I never cared about having cancer (sorry ladies) as I was already severely depressed and saw it as a way out. I still do. Any suggestions?
Member

Re: Tamoxifen and side effects after completing 5 years

Dear Mads

 

You are certainly not alone.

 

Have you been assigned a Breast Care Nurse? You might find it helpful to phone her and have a discussion about your side effects, your anxieties and your problems with quality of life. She should be able to direct you to someone appropriate within the hospital for further advice and support. You could also phone the specialised nurses on the Breast Cancer Care line at 0808 800 6000; I have found them very helpful.

 

It can happen that oncologists are sometimes slow to understand the effects of oestrgoen depletion on your general health and daily life, especially if you are on your own and have to be self-reliant. There seems to be a general assumption that everyone has family who can care for them, when the reality is quite different.

 

You might find it helpful to write down a few notes about your present side effects and how they obstruct your daily life, referring also to your personal circumstances and your need to manage everyday practical household matters as well as your own care. You could include information about relevant aspects of your medical history. You could request an appointment to see your oncologist and/or your BCN to discuss the problems you've outlined, prividing them with a copy of your notes for your medical file. I have done this and have found it helps to get the message across.

 

Qualilty of life is the most important thing. You need to find the right answer for you that will allow you to cope, and to do that you need to have your clinicians on your side. Do talk to them and get their support for whatever you decide to do.

 

All the best

Member

Re: Tamoxifen and side effects after completing 5 years

Hi I’m new to this forum as I think when I got diagnosed back on 11th April 2018 i went into denial as I didn’t speak to anyone really about the outcome. I was 40 and had been feeling very unwell for a year and was down to 6 stone. I’d had a neck problem and had a little lump on left side of my neck that would swell up and down. Was scanned and told a sebaceous cyst. I only found the lump as it was painful. Was assured nothing much there by doctor but would send me for a biopsy. 2 weeks late I had Stage 1 Grade 3 invasive breast cancer. I didn’t care. I almost felt I had know for a while. Lump on neck was a swollen. Lymph node. In a daze, swept up in the rollercoaster, my mum pretty much talking to the doctors as I just didn’t understand. I had a lumpectomy, 4 weeks of TC chemo regime and I just finished radiotherapy 10 days ago. Been given Tamoxifen. I suddenly feel like I’m 80. I’m so tired I can’t even go back to my career as a dental Hygienist full time. Joint pain, muscle pain, uncontrollable crying, numbness and swelling in left arm as I had a SND which were clear but been told I have lymphodemea-another life long condition, I’m depressed. I am trying counselling. Against my morals I’ve started a very low dose anti-depressant. My cancer is extremely hormone receptive so was made to feel Tamoxifen would be my saviour. Didn’t read side effects. I’m blistering from the radiotherapy so my holiday to centre parcs is looking like I won’t be swimming. I turned 41 on the day of my last radiotherapy. I live alone. I rent. I have no partner. Not many friends. I don’t get out much. I have anxiety. This was not me 3 years. I don’t recognise myself. I now get cysytisis despite drinking 3 litres of water a day. I have problems with my bowels. Today I have not taken my Tamoxifen. I still ache but had more energy. I don’t have a life to fight for. So I am taking my chances as just maybe I’ll get a few years of feeling like pre cancer me -I’d happily trade another :40 odd years just for a few pain free and happy few years. Sorry not very positive but I wish I’d asked so much more. I would have possibly bypassed some of the treatment. I feel ungrateful and I’m sure I’ll get a backlash for my comments but I just wanted to say or at least write out my feelings. Maybe I’m not alone
Member

Re: Tamoxifen and side effects after completing 5 years

This is for all my sisters having new symptoms after coming off Tamoxafen,

I just started on Tamoxafen.  I am also a Neurologist, but not an oncologist!  Tamoxafen helps reduce breast cancer recurrence by blocking estrogen binding in the breasts.  In other parts of the body, it acts like estrogen.  I know it helps build bones, and works like estrogen in the pelvis, after discussing symptoms with gynecologist.  

 

The headaches he’s and dizziness sound like symptoms of estrogen withdrawal- similar to what happens in menopause.  This can cause hot flashes, insomnia, irritability, migraine, anxiety, depression, etc.  If side-effects are bad, it is a good idea to discuss gradual tapering of Tamoxafen with your doctor.  Everyone is different, but the body adjusts better to gradual changes.

 

Another possibility is that your symptoms are due to Vitamin D deficiency.  To the body, Vitamin D has a similar structure to estrogen.  When you stop Tamoxafen, you stop the estrogen effects it had on some parts of thebody.  If your Vitamin d level is low, supplementing Vitamin D3 May help reduce your symptoms.  This should be supervised by a physician, as too much Vitamin D can also cause problems.

 

I hope this helps!  You are all helping me feel less guilty for how tired and listless I am!  Blessings to all of you!  Braindoc

Member

Re: Tamoxifen and side effects after completing 5 years

Dearest Niamitz,

 

First of all, welcome to the forum. The people on this site are pretty amazing and loving. Great support. Smiley Happy

When I began the Tamoxifen I was so terrified of the cancer spreading or coming back, so I bit the bullet and took it. The side effects were bothersome, but I told myself.. you have lots to lose If you don't. My cancer was fast spreading kind, and I had my only child, and she was 13. I am single parent, and looking into her heartbroken terrified  eyes told me I needed to do the tamoxifen, whether I liked it or not. 

Am happy i made that choice, because am in remission and it has been almost 10 years . 

I am saying, do what you think is right for you. There is hope ..and come back to the forum often , if you are able to. So many inspiring stories, and encouragement.

I hope I helped you , even a little bit. My thoughts and prayers are with you.

Stay strong and take good care of you.

P.S.  I have a few posts on this forum explaining what my journey was like.. 

if you wish , look me up  Smiley Happy Silverraynefox

 

With sincere words of healing for you.. HUGE HUGS to You as well..

 

 

Silverraynefox  <3

 

Community Champion

Re: Tamoxifen and side effects after completing 5 years

Niamtz

 

Hello and welcome to the forum, you will get loads of help and support from the lovely ladies on here.

 

It is scary taking any medication for the first time and even more so when you read all the side effects that they put on the leaflet,.  What you have to remember is not everyone get all or any of them and the suppliers have to list them in case they get a compensation claim against them if they did not.  When I started taking mine, I stared at the pack for a week before taking them, that was 2 years ago next month.  I have had a few side effects, mostly at the beginning and I have a lovely hot flush about an hour after taking my tablet, which I take in the morning, but on the whole it has not been anywhere near as bad as I thought.

 

Sending you hugs

 

Helena xxx

 

 

Member

Re: Tamoxifen and side effects after completing 5 years

Hi I am 68 yrs old just had surgery. A lumpectomy , I was stage 1 cancer , radiation for 3 weeks and am recovering from the radiation burning.tI’m afraid to start taking tamoxifen because of all the side effects it has . Has anyone opted not to take it after surgery? Very confused and scared.
Member

Re: Tamoxifen and side effects after completing 5 years

Oska, I had lumpectomy and chemo and radiation .. 10 yr. therapy of tamoxifen , but body said no after 9 years of it. I had immense aches and pains in my bones, and muscles , and sleep is still affected.. it's been since January of 2018 that I went off it. Yes I also had pins and needles in arms and legs , and I still have some of this after going off tamoxifen. I am sending so much positive energy and healing.. I pray this helps you .. take real good care my friend. Keep on talking to your doctors until YOU are satisfied with what you are told.
Member

Re: Tamoxifen and side effects after completing 5 years

Huge hugs sent your way, cindy d. Take good care and know people care. <3 Smiley Happy
Member

Re: Tamoxifen and side effects after completing 5 years

Hi sloyd66

I did lose some of my eyebrow hair , but only on my left eye, now the hair came back light blonde and i am dark brunette, but i just use eyebrow dye and it lasts a bit , but i am so concious of it. Eyebrows are way thinner than before treatment . I am much thinner now , than before, by about 30 lbs. I choose to eat healthier, and this is why the weight loss. I cannot fathom eating fast foods etc.  My body repels it if i do.. so i chose to eat  healthier. Hope this helps a bit .. Smiley Happy 

Member

Re: Tamoxifen and side effects after completing 5 years

Hi..Iv been on tamoxifen 7 years after stage one cancer in 2011..I had a right mastectomy.Later on had the right one removed for my own reasons no cancer..Iv had no weight gain on this drug or side affects until now. Im full of muscle pain and pins and needles in my legs and hands. Was a very energetic lady 5 weeks ago now I ache all over and live off paracetamol and ibuprofen cream..Iv asked to come if tamoxifen to see if this drug is the course of the aches and pains..im really confused.My doctor has written to my breast surgeon asking if it's ok to take me off it .In panicking coming off it incase my cancer comes back x
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Re: Tamoxifen and side effects after completing 5 years

I am 71 and have been taking Tamoxifen for almost 5 years. Lots of hot flashes and difficulty sleeping. Worst is fuzzy brain and sometimes emotional roller coaster. Mammos and exams every year are all okay. No one will give me a straight answer as to my risk if I stop Tamoxifen after 5 years.

Original dx was Pleomorphic Lobular Ca in Situ. Had modified mastectomy, but no chemo or radiation.

Any advice or suggestions are welcome! Thanks....

Member

Re: Tamoxifen and side effects after completing 5 years

Coming up on my five year mark for the tamoxifen.  Dr wants to test the original tumor to see if it's better to go the ten.  Im almost resigned to stop anyway. Im not sure the benefit is that much more.  Diagnosed stage 2 b on right and insitu on left.  Double mastectomy, bad reconstruction, hysterectomy, oopherectomy, salpingo. Positive BRCA. Then my gallbladder shut down. I'm really hoping for a good outcome after stopping. I have horrible hot flashes and leg cramping. I've gained weight and my energy level is just not what it should be.  Hre's hoping for the bet.

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Re: Tamoxifen and side effects after completing 5 years

question for the ladies that are off tamoxifin. Did you loose hair or eyebrows and if so did they grow back after you got off the medication? My eyebrows use to be perfect and now i barely have any.  And what about weight gain did you go back to your pre weight size before tamoxifin?

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Re: Tamoxifen and side effects after completing 5 years

oh ok. I've done good on it minus brain fog and a little leg cramping but i'm almost to my 5yr and want out. lol

Member

Re: Tamoxifen and side effects after completing 5 years

Hi sloyd66! Smiley Happy
I was on 10 year therapy with Tamoxifen.. i did 9 of the 10 years .. .. keep smiling sunshine.. xo
Member

Re: Tamoxifen and side effects after completing 5 years

How long were you on Tamoxifin before getting off Silverraynefox? It's good to hear good news over a lot of negative news.

Member

Re: Tamoxifen and side effects after completing 5 years

Good morning sweethearts!!

I pray for each and every one of you going through treatments , or coming off them. I can say, for myself, that things do settle down... i have been off tamoxifen for 6 months now and i feel better than i have in years. At first, going off Tamox... i felt achy and sad, and grumpy... I now feel better in all areas, except being diagnosed with arthriris now, which is in my spine and hips and legs... BUT   i am managing..

Hang in there to all... we are so individual , and when coming off any drug , some will feel better or worse... my thoughts are with all of you.

All in all, for me, life is great!  I just tell myself today is a  good day and i shall make it a happy one.. even if i feel opposite. takes work, but am in MUCH BETTER place than I was a couple years ago..

 

keep shining, and smiling... YOU WILL GET THROUGH THIS!!  All my love to you... YOU CAN DO THIS!!!!  

 

 

 

Feel free to message me anytime.. just to say hello or if i can help in any way....... God bless! <3...

P.S.  getting out in nature helps immensely..  Smiley Very Happy xo  hugs to all 

Member

Re: Tamoxifen and side effects after completing 5 years

Hi

 

I have been off for 1.5 years and still the side effects keep coming aka no sleep hot sweats fatigue and big bad mood swings oSmiley Sad

Member

Re: Tamoxifen and side effects after completing 5 years

Hi

 

I thought it was just me whom felt like this I Have been off 1.5 years now and still feel that way . Mood swings crying snd someties thinking what if . Its not a nice feeling

Member

Re: Tamoxifen and side effects after completing 5 years

I was diagnosed with BC in 2011.  The year my oldest was going away to college...Smiley Sad , I was 45 years young.  In the prime of my life.  Had just lost 30 pounds of baby weight and was so full of energy it was unbelievable.

 

After having a mastectomy on one side, reconstruction on both I was put on tamoxifen.  Like most of you, I was told 10 years.  During the second year I started experiencing terrible side effects.  Joint pain, extreme tiredness, bitchy beyond belief, crying, not wanting to get out of bed, and complete craziness (full blow depression if you ask me).  I complained and complained.  The doctor changed the doses from morning to the evening, from the evening to twice a day at a lower dose, which seemed to help some, but not enough for my liking.  Still many aches and pains, still uneven temper and uncontrolled crying at times.  I was monitored every 3 months.  Periods came sporatically.  This lasted for over a year.  I was too tired to do anything and gained back 40 pounds.  I was having yearly internal sonograms to check for uterine cancer (a 2% risk on tamoxifen).  Each time I was subjected to "issues" and had to have additional testing.  The additional testing lead to nothing.  So nothing was ever done.  Body started to deal with the tamoxifen within the last year a bit better, but still achy and tired, just not as cranky.

 

Here we are 7 years later almost to the day.  My last internal sonogram has once again found some "issues", leading to the additional testing.  The MRI has resulted in suspicious abnormalities, so much that my oncologist has told me to stop the tamoxifen and see a gynocological oncolgist.  (Waiting for that appointment).  So, now that my body finally stopped fighting the tamoxifen over the last year, I have been removed from it and starting the blues all over again.  Tired, cranky, and just in a completely blah kind of mood all the time.

 

Sorry for rambling on and on.  Just wondering if anyone else has had all of these issues and if I can expect to get back to my pre-cancer self anytime soon?   Smiley Sad

Member

Re: Tamoxifen and side effects after completing 5 years

I have just stopped taking Tomoxifen last month and noticed my hot flushes had also started to come back. I had to have a full hysterectomy 15 months after being diagnosed and treated for breast cancer, after this I had bad hot flushes but they passed and I have had a fairly good year free of day time flushes and less severe night flushes. At first I put it down to the hot weather but one of my staff thought I was getting angry as she could see my arms and face going red- bless her... I decided to look into the side effects of coming off the Tomoxifen and was amazed by people suffering the same thing, hot flushes, headaches, hunger, tiredness.  I am hoping that all this passes soon as I have been going to the gym and dieting for the last six months and really battling with losing weight even though I am working so hard at this. What makes it worse is the glorious weather we are having - however despite all this I am so thankful that I have got through the last 5years and got the all clear, now it’s just this last hurdle. To all those lovely ladies out there going through the same, stay positive and keep fighting xxxx

Arl
Member

Re: Tamoxifen and side effects after completing 5 years

Hi ann-m
I got told at beginning to that would be on tamoxifen 5yrs & now been changed to 10yrs, I’ve been quite lucky on it a few side affects but not many, stick to the same brand. A few years didn’t have a period and now it comes and goes, you just never know when it’s going to happen, have put on a stone in weight, the flushes were awful at the beginning, get the odd one, sore joints & tiredness, I got a chillow pillow then the magnet to try and help, which it did. I will ask my consultant next time I see him if taking it any longer than 10 yrs is a good thing or not, I know a lot of people are so happy coming of it, I just don’t know how I feel about it when time comes to stop.
Member

Re: Tamoxifen and side effects after completing 5 years

Hi sloyd66.... you are very welcome.  Smiley Happy   Take real good care .. Smiley Happy  

Member

Re: Tamoxifen and side effects after completing 5 years

ann-m and that's just what i said 10 yrs going to go to 15 yrs and 15 going to go to 20 and so on... It's a money making thing. Like i told my Onc this is keeping a lot of women in fear and it's unfair. There's no guaranteed in nothing now adays.

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Re: Tamoxifen and side effects after completing 5 years

Victoria16 Ok, I just seen my Onc and we talked about it she was laughing at me because. I'm really considering getting off in April that will be my five years. I'm now doing yrly mammograms after doing every 6 months. This past  monday was my first yrly and and it went well, i didn't have to do more images or u/s so i was happy. But my Onc is not persuading me either way. She just says  if you don't have bad side effects they say you should consider staying add'l 5 yrs. But to me there's no proof in nothing.

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Re: Tamoxifen and side effects after completing 5 years

Sloyd66, I was diagnosed 6 years ago, I was 39, and initially I was told that I had to take 5 years of tamoxifen, then it was increased to 10. My life wasn't good, bad hotflushes, really bad sleep...not energy at all. It was my decision to go to talk to the oncologist to stop it after the 5 years. The oncologist considered my age when diagnosed, type of cancer, the treatments I had (surgery, chemotherapy and radiotherapy) and it came out that the benefits of taking it another 5 years, in my case were very small, so I decided to stop it and have my life back. I still have the yearly mammography to keep it controlled. X
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Re: Tamoxifen and side effects after completing 5 years

hi sloyd,

When I was first diagnosed just over 2 years ago, I initially was told 5 years, then it was changed to 10 years, so it probably came in generally, at around that time. It was based on research that found reduced recurrance rates if hormone treatment was continued to 10 years. I was also told that it may go up to 15 years!

If you would prefer to continue, it maybe worth talikng to your team or GP about it.

ann x

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Re: Tamoxifen and side effects after completing 5 years

Why were some patients told 5yrs on Tamoxifin and other 10yrs? I was dx in 2013 I was told 5 yrs but i'm noticing some ladies on here did the 10yrs being dx prior to 2013. Just curious to see if anyone know. Seems the Dr's don't they're just going by studies. Now I know most recent dx ladies will be told 10 yrs because that's what they are saying now. But us ladies from earlier dx we were told 5yrs nothing else, no possibility of staying on 10 or longer at least not me.

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Re: Tamoxifen and side effects after completing 5 years

Thank you @Silverraynefox for some HOPE after Tamoxifin. Feels good to hear positive outcomes.

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Re: Tamoxifen and side effects after completing 5 years

That's @Victoria16 good to hear that your body is now adjusting, and most of of all losing weight. This make me feel at ease as i'm looking at ending 5 yrs in April. But i'm not sure about getting that period again, however i'm 52 now my dr said tamoxifin may have blocked it for good. I hope so. lol

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Re: Tamoxifen and side effects after completing 5 years

You are most welcome.. any ray of hope and sunshine helps us all...keep your head held high and conquer! Smiley Happy This forum is like "family" to me, and am concerned for all. Please keep in touch and let me know how you are doing ... take care sweety.. keep smiling hun Smiley Happy Only thing i have noticed , going off tamoxifen.. a little more weight in tummy area.. but def. manageable.Not a lot .. but about 5 lbs.. am working to get that off now...
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Re: Tamoxifen and side effects after completing 5 years

Hello! I am 45 and I stopped tamoxifen after 5 very long years, I stopped in March and for over two months the hotflushes were much worse than before. I was feeling really down. Then all of the sudden the hotflushes stopped and I feel more energetic. As well my period has come back, and I have been able to lose a few pounds too! So it seems that the body is recovering well. Hope this help! Good luck! X
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Re: Tamoxifen and side effects after completing 5 years

Thank you Silverraynefox, that is sooo good to hear - onwards and upwards Tamoxifen warriors! 😁 xx
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Re: Tamoxifen and side effects after completing 5 years

Hello Rockythecairn:

Just wanted to say.. hang in there.. i felt same way after suddenly stopping 9 yr. therapy. That was end of January , this year. I now feel so , so much better being off tamoxifen.. i thanked it for what it helped in my body, but was happy to bid it farewell. I feel much healthier ( altogether feeling way better in all areas)... i pray you will as well. 

Best wishes to you....  Smiley Happy <3