Member
Posts: 3
Registered: ‎05-11-2018

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
Posts: 3
Registered: ‎05-11-2018

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??

Member
Posts: 3
Registered: ‎24-10-2018

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.

Member
Posts: 3
Registered: ‎24-10-2018

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
Posts: 3
Registered: ‎24-10-2018

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

Highlighted
Member
Posts: 183
Registered: ‎13-04-2018

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
Posts: 3
Registered: ‎15-10-2018

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!
Member
Posts: 183
Registered: ‎13-04-2018

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

 

 

Member
Posts: 4
Registered: ‎12-10-2018

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
Member
Posts: 183
Registered: ‎13-04-2018

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
Posts: 4
Registered: ‎12-10-2018

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
Posts: 183
Registered: ‎13-04-2018

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
Posts: 4
Registered: ‎12-10-2018

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
Posts: 7
Registered: ‎28-03-2018

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
Posts: 16
Registered: ‎22-01-2018

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
Posts: 9,460
Registered: ‎16-11-2016

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
Posts: 1
Registered: ‎05-10-2018

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
Posts: 16
Registered: ‎22-01-2018

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
Posts: 16
Registered: ‎22-01-2018

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
Posts: 16
Registered: ‎22-01-2018

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