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Tamoxifen & Radiation Started

Tamoxifen & Radiation Started

Posted by Charper on Mar 6, 2020 2:18 pm

Hi everyone, I just wanted to start a new topic for all us new comers.  A place where you can share your story and offer advice to all that have upcoming treatments.  I just started my radation yesterday and tamoxifen on Feb 12.  So far only side effects is constipation from the tamoxifen.  I have increased my veggies and started taking metamucil. Seems to be working.  As for the radation, too early, I have been lathering myself with Cerva cream hoping everything works out.  Sending hugs & love

Re: Tamoxifen & Radiation Started

Posted by mc2 on Mar 7, 2020 7:15 am

Thanks for the update Charper‍   Thing are pretty good here.  A few side effect from either Tamoxifen or it's resulting low estrogen in my body but all tolerable. Oncologist told me last week that they may clear out over time.  So we'll see. Back at work part time and just bought a new tshirt that says "I am fine. Thank you." which I will likely wear on days where I need a break from being asked how I am doing. And my smurf nipple from the blue dye injection has finally disappeared. On Monday, it will be the 6-months mark aftr surgery.  I am also waitinf for q consult with a plastic surgeon to see if I get the "good breast" could be reduced to match the other one. Not sure yet if I want to get it done but would like to know what it would imply,  And I am eating more vegetables too. 
So keep us posted.  Radiation felt like a pilgrimmage to me. Actually met some nice people in the waiting room too.  Hope all goes well for you. Keep us posted.

Re: Tamoxifen & Radiation Started

Posted by Tzi on Mar 7, 2020 9:47 pm

Just signed up on the forum today. Almost a month since my surgery. 
i will be starting both radiation and tamoxifin in a few weeks, so keen to know how you're doing and pick up any do's and dont's. 

I like the sound of radiation being like a pilgrimage!

Re: Tamoxifen & Radiation Started

Posted by JacquelineM on Mar 9, 2020 8:24 am

Hello,
I had my surgery in August last year, followed by chemo. I had 4 weeks of radiation which finished Feb.14. I have been on Anastrazole since.

My recommendation is moisturize,  use saline soak, drink lots of water. Repeat. 

I fared well during the radiation, only experiencing side effects similar to sunburn, in the final week. It was right at that point that the side effects worsened. My breast and armpit went purple, I blistered, and even now more than 2 weeks post, I am peeling.  I went to the nurses at triage at PMH and they were very helpful. They provided me with a great cream and showed me how to apply.

I hope this is helpful, and I wish you all the best.
Jacqueline
 

Re: Tamoxifen & Radiation Started

Posted by Kims1961 on Mar 14, 2020 7:17 am

What a great thread!  Thank you Charper‍ 

I finished radiation 18 months ago and had to switch from Letrozole to Tamoxifen due to side effects.  So far, so good on tamoxifen.  Some side effects - constipation, weight gain, fatigue - but manageable.  The benefits of tamoxifen are so important , i'm going to do what i can to manage them.

A pilgrimage is so symbolic ...I found during my treatments i met so many other wonderful folks on their own pilgrimage.  We each had different stories but a common theme of cancer treatment.  I found the staff at my radiation centre just so amazing - helpful, supportive with a perfect touch of a sense of humour.

All the best. Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Tamoxifen & Radiation Started

Posted by Charper on Mar 22, 2020 10:12 am

Hi Everyone ashconBonnieCmc2Kims1961Runner Girl‍ and all that have been in this journey or starting...just checking in, just finished day 12 of radiation on Friday, seems to be going well, little itchy and pink but so far so good.  Little scary going to the hospital for treatment but I am taking all precautions, my hands are so dry from washing lol. I hope everyone is doing good, sending love and hugs

Re: Tamoxifen & Radiation Started

Posted by Kims1961 on Mar 22, 2020 11:14 am

Charper‍  GREAT news!!!!  That's the spirit. For me, the skin issues happened at the very end, but from there on, I could manage at home.

Are you experiencing any fatigue?  I found trying to keep as "normal" a schedule as possible - getting outside for fresh air, rest when i was tired and drinking as much as i could, was my daily routine. How are your days going?

The "silver" lining to radiation for me, was the appt were quick.  My centre was very good for the most part of getting me in, very soon after i had checked in.   I also washed my hands before and after treatment just to be sure and this was before COVID-19.

If you don't mind me asking...how is the constipation and tamoxifen?  I'm on tamoxifen and still  find this a bit of an issue.  I may just have to increase my metamucil.  🙁  getting fresh veggies has been a little tricky lately! 
Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Tamoxifen & Radiation Started

Posted by Treepeo on Mar 22, 2020 10:05 pm

Hey Charper‍,

I was just wondering how many times you have to hold your breath per radiation session?  When I went for my pre-radiation simulation at PM, they told me I would have to hold my breath 15 times, but I never thought to ask if that was 15 holds per individual session, or one hold per daily treatment. I am hoping it is the latter. 

Re: Tamoxifen & Radiation Started

Posted by mc2 on Mar 23, 2020 8:43 am

hi Charper‍  thanks for the update! You're doing great!  The finish line should be in sight very soon!  Keep it up and keep us posted.  Feels like decades ago that I was at radiation twelve.  Time is a wonderful thing.   I am doing well here.  I decided to stop Tamoxifen for a while until this COVID insanity stops at least.  I have been on the fence about continuing for several weeks as I had many small side effects that were adding up.  So I am trying without to see if they were due to Tamoxifen or someting else. I know the impact on risks as I have discussed with my oncologist. She can not offer an alternative since I am premenopause, I am making an informed decision not to take it right now and I will reassess in a few weeks.  My day to day reality has changed with school closures.  My main focus is on keeping a new normal for my daughter who is five years old until life itself returns to normal.  It is not particularly useful for my return to work plan but my employer is very understanding.  Take care everyone.

Re: Tamoxifen & Radiation Started

Posted by Lianne_Moderato on Mar 23, 2020 1:35 pm

mc2‍ 
Thank you for sharing. I so appreciate that you let us know that your decision to cease taking Tamoxifen for now was done with careful consideration by both you and your oncologist and that you may revisit it down the road.

Wishing you all the best. Happy to hear that your employer has been so good and  I hope you can enjoy this time with your daughter.

Lianne

Re: Tamoxifen & Radiation Started

Posted by Charper on Apr 7, 2020 10:52 am

Hi everyone Runner Girlmc2Kims1961BonnieCashcon‍ and everyone else in this journey.  I hope everyone is well and stay and sane.  I finished my last radiation treatment last Wednesday.  I am feeling alright but the boob not so good.  Very itchy and red, I have been putting cream on and trying to keep my skin from rubbing under and in the armpit area...any suggestions other than the creams?  Again I hope and pray everyone is well, sending hugs and love.

Re: Tamoxifen & Radiation Started

Posted by BonnieC on Apr 7, 2020 12:15 pm

Hi Charper‍ !!!
Congrats on finishing your treatments!!!! Life is so crazy right now that I have zero time to connect on here.
So I ended up with my burns getting so bad that they were peeling so I had to use a medicated cream to help.  I think it was flamazine sp? I had open areas from the peeling so I was in excruciating pain to the point that I didn’t move - staying still was what gave me relief. And barely any clothes as nothing could touch my skin as it was on fire.  But one thing that did help was polysporin in the red tube as it has a bit of pain relief in it. (White Cream) It was suggested by my radiation team - but not doctor. Also they suggested using saline as well - again suggested by my radiation team not my doctor.  I ended up following my doctor’s advice and didn’t use any cream or saline ..... hmmmm - so it makes me think it that my radiation burns couldn’t have been any worse so maybe Glaxo cream should have been part of my radiation routine. I didn’t expect the peeling of my skin from the burns both under breast and underarm so it really took me off guard when it developed very rapidly at the end.  The skin turned an ashy pink in those areas and then opened up and skin fell right off.  They developed even worse in the 7-10 days after my last treatment.  I kept thinking - how can this get worse - but it did.  Until one day it started to be less painful.   Then I knew I was over the jump.   I’m 4 weeks from my last treatment and I’m all healed now but those 2 weeks at the end were the worst for me. I think mentally and physically my rock bottom.  I cried on the radiation table in pain my last 3 days and it was excruciating.  The staff kept apologizing but there was nothing they could do.  I would see older women with no issues and it was so heart wrenching that I had so much pain.  I kept thinking I’m strong, I’m younger - I can do this.  I was hard on myself thinking I was a being a baby but it was worse that childbirth 100%.  When I look back I know I was just at an emotional breaking point from this whole 6 month journey.  I finally shared with people close to me that I needed their strength- that’s what helped me through those dark days.   I had my phone follow up yesterday with my oncologist and even though he tried to stretch the treatment out - he said they can’t predict who will get bad skin reaction and who won’t. 

As for tamoxifen - so far I’ve had not much side effects.  I think I’m adjusting ok. So at least that went fairly smoothly unlike like my radiation.

Good luck @charper - you are almost through this now.  ;) 

One question I have is - has anyone in the field suggested that get a follow up mammogram?  That’s been something I’ve wondered about.  Not the annual one we get but one after surgery/radiation to get a new base line of what our breast is now?  
I’ve wondered about this but not really keen to go out and get one right now because of the covid-19.  Thoughts? Opinions?? Anyone ask this of their doctor? 

Re: Tamoxifen & Radiation Started

Posted by Kims1961 on Apr 7, 2020 12:24 pm

Charper‍ Thank you for the update!!! Congratulations - what a great feeling.  Like you, it was after treatment that i very angry, sore skin.  As i had bilateral mastectomy - the area radiated seemed so thin, raw. My radiation was during the summer so i found trying to keep it away from extreme heat or cold key.  I wore very loose tops - lathered on the cream and even used the flamazine  hyrdo-cortisone  cream they gave me.

https://www.cancer.ca/~/media/cancer.ca/CW/publications/Radiation%20therapy/32056-1-NO.pdf

This is the pamphlet from the CCS that I found helpful.  Also this info. from www.breastcancer.org
https://www.breastcancer.org/treatment/radiation/skin/care



I found after 2 weeks, it became less angry.  So happy for you !  Great to hear...Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Tamoxifen & Radiation Started

Posted by mc2 on Apr 7, 2020 3:35 pm

Woooohooo Charper‍ !!!  Congrats on finishing radiation!  Time for some TLC!  I too had an emotional rush after radiation.  It was like "now that I am done fighting, I can grieve a little." Relief, sadness, anger, you name it...  I am better now.  And even dealing with this covid-related stress has been easier in the last week since I had an "haha moment" thinking that one year ago, i had never had a mamogram and never had it ever crossed my mind that I would have breast cancer.  In less than a year, I can now say that i HAD breast cancer and I am on the other side.  It gives me perspective.  I find it helpful.  And this whole cancer experience did make me stronger... or at least made confirm that I am strong.  And being strong includes having down moments, being scared, and the whole nine yards.  And coming out at the other end.  Even my uneven boobs do not bother me anymore.  I wore thank tops to the gym not caring if people saw my under arm scar.  It came, it went, and I am here.  Anyways, I know this is a long message but the main thing I wanted to say is that I am soooo happy for you!  Now please give yourself the time to heal inside and out.  You are on the other side.  Curative treatments done.  
And please do keep checking in here once in a while.  It is always good to hear from you and how you are doing.

Re: Tamoxifen & Radiation Started

Posted by Essjay on Apr 8, 2020 8:12 am

Charper‍ And mc2‍ congrats on making it through the radiation marathon! Woohoo!

i too had itchy raw skin and I used a hydrocortisone cream for a few weeks which really helped. I also kept busy. I was back at work, and gently easing back into my life. I found the breathlessness a real pain. I had to rest after dressing, and was puffing after climbing 3 steps. So I started running - following a couch to 5 program. It took me a couple of extra weeks to complete it, but graduating that program coincided with me making it back to work full time, 3 months after finishing rads. I haven’t looked back - now running up to 10K three times a week! Took me far longer to be able to wear a proper bra all day though, and to fully kick the fatigue!

I am sure the scar tissue has hardened through rads - if you can, massaging the whole breast but particularly along the scar line is a good idea. You will be checked for changes to this area in case your cancer reoccurs, so anything you can do to make lumps palpable if present is wise.

Congrats for making it through - you are on your way xx
Triple Negative Breast Cancer survivor since July 2018

Re: Tamoxifen experiences anyone??

Posted by Scared on Apr 8, 2020 8:37 am

Anyone just on tamoxifen alone...no other treatments?? Can I ask the dose?? 10mg? 20mg??

Here I am.  Scared again.  It's been 6 months since mastectomy and sentinel nodes biopsy. No chemo or radiation. 
But oncologist put me on Anastrozole 1mg (since my tumour was hormone receptive) and after 2nd or 3rd day had all the side effects possible including painful cysts on ovaries.  I'm postmenopausal and have osteoarthritis in knees and have arthritis flare ups from time to time in other joints as I age.  So after putting up with extra pain for a week on this pill I decided to stop taking it.  After all I didn't want to be suffering at my son's wedding and then a month later it was Christmas and then I was caring for my much elderly father.  Theres always reasons not to want to be in pain.  It's called living.
So on everyone's advice I finally told my oncologist why I'm off that hormone pill so now he prescribed Tamoxifen.  After reading about blood clots and stroke, I'm scared to death to take this one too!  
Can anyone tell me their experience with Tamoxifen?? I know we are all different and my body may tolerate this better than the anastrozole.   But I would still appreciate hearing about your experience whether good or bad.

Re: Tamoxifen experiences anyone??

Posted by Scared on Apr 8, 2020 8:37 am

Anyone just on tamoxifen alone...no other treatments?? Can I ask the dose?? 10mg? 20mg??

Here I am.  Scared again.  It's been 6 months since mastectomy and sentinel nodes biopsy. No chemo or radiation. 
But oncologist put me on Anastrozole 1mg (since my tumour was hormone receptive) and after 2nd or 3rd day had all the side effects possible including painful cysts on ovaries.  I'm postmenopausal and have osteoarthritis in knees and have arthritis flare ups from time to time in other joints as I age.  So after putting up with extra pain for a week on this pill I decided to stop taking it.  After all I didn't want to be suffering at my son's wedding and then a month later it was Christmas and then I was caring for my much elderly father.  Theres always reasons not to want to be in pain.  It's called living.
So on everyone's advice I finally told my oncologist why I'm off that hormone pill so now he prescribed Tamoxifen.  After reading about blood clots and stroke, I'm scared to death to take this one too!  
Can anyone tell me their experience with Tamoxifen?? I know we are all different and my body may tolerate this better than the anastrozole.   But I would still appreciate hearing about your experience whether good or bad.

Re: Tamoxifen & Radiation Started

Posted by mc2 on Apr 8, 2020 10:48 am

Scared‍   my prescription is 20mg per day.  I found taking it before going to bed was easier on me than at dinner time.  I had really good discussions with my oncologists to assess the risk benefits based on my personal situation (cancer size, type, markers, lymph nodes, age, treatments) and she was able to give me helpful stats to help guide my decision.  Stats are just stats i.e. no certainties but, for example, in my case the risk of recurrence for my diagnostic/treatment/family history etc is predicted (emphasis at predicted) to be at 12% .  With tamoxifen, the risk is cut in half (i.e. 6%).  The risk of a major side effect (e.g. blood cloth) , from the literature I found, is approximately 1%.  With your oncologist, you can have a better sense of the odds for you to help guide your decision.  Hope this helps. Take care.

Re: Tamoxifen & Radiation Started

Posted by Scared on Apr 8, 2020 12:42 pm

mc2 thanks so much for your reply.  Yes it helps. 

I was given 20mg pills as well.  At first I thought that was a high dosage but what I see on internet may not necessarily be accurate.   
The bottle says to take with food so I think I will start tonite.
after a week or so I should know if its tolerable .

Re: Tamoxifen & Radiation Started

Posted by Runner Girl on Apr 8, 2020 2:12 pm

Congrats on finishing radiation Charper‍ !!!  I found my skin began the healing turnaround about 11 days after my last radiation.  I used cold aloe gel on a washcloth to cool down my skin, it's messy but felt so very good.


Scared‍ , I have been on 20 mg of Tamoxifen since December 3, 2018.  The worst side effect I've had is muscle pain, which is well controlled with magnesium supplements.  The hot flashes and night sweats are a pain, but not the worst thing in the world - and it tells me that the tamoxifen is actually doing the job it is supposed to so I welcome this.  My oncologist wants to switch me to anastrozole in December,  2020.  

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Tamoxifen & Radiation Started

Posted by Charper on Apr 9, 2020 11:43 am

Hi everyone ashconmc2BonnieCRunner GirlEssjayKims1961‍ Thank you for all for the helpful advice. Yesterday and the day before the burning and itchiness was driving me up the wall, so I put Polysporn on and it helped, today is much better.  The worst is under my boob and my armpit, looks purple but no broken skin, thank God.  
Runner Girl‍ I tried finding aloe but it is all sold out, all those diy hand sanitizer people lol.

My tamoxifen is 20mg and I take it before bed with 2 capsules of Metamucil (which helped with the constipation).  My hot flashes are not too bad but I suspect the antidepressent Effexor is helping with that and keeping me level  (according to my one docs, he said they do use it to help with hot flashes).  

BonnieC‍ I did have a follow-up mammogram schedule on the day of my biopsy but I got a letter in the mail saying it was cancelled and not necessary.  I find that alittle confusing, not necessary, who decides that?  Have no idea when or who I call to have it done?  I do not think I would have gone anyways, it was booked in May and with all this covid crap I was just happy to be finished my rads.

During my actual treatment I had to hold my breath about 6 times, 2 of those times  was for about 20 seconds.  It got easier as time went on, I just thought about being totally relaxed and sometimes floating, that helped me.

Be well everyone, stay safe, sending love and hugs.

Re: Tamoxifen & Radiation Started

Posted by Kims1961 on Apr 9, 2020 12:05 pm

Scared‍ I had the strangest side effects on Letrozole - i had hoped they would improve but i eventually had had enough.  I was put on Tamoxifen in August 2017 - 20 mg - and so far so good.  Very manageable compared to Letrozole.  Any side effects - like hot flashes - have been tolerable and definitely much different than Letrozole.

I figured I would give it a try - given the very positive benefits for being on this medicaiton.  I"m glad I did.  

Good for you to connect with your oncologist.  They want us to succeed - to live .  I also figure getting feedback about negative and positive side effects - helps them with other patients.

Let us know what you decide.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Tamoxifen & Radiation Started

Posted by Ineke on Apr 9, 2020 1:46 pm

Hello, Scared
I had bilateral in 2016 (my choice due to family history).  ER+, PR+ and HER2-, no chemo or radiation as it was caught very early.  Started Tamoxifen in April 2016 at 20mg a day.  I did not have any serious side affects. Have had some weight gain and did have bleeding about a year after but it turned out to be a huge fibroid (that should have shrunk with the Tamoxifen but didn't) so I had a total hysterectomy.  The hot flashes, initially, were quite frequent but have since tapered off quite nicely with just the odd one here or there.  I was supposed to be on Tamoxifen for only 3 years but they have now increased that time line to 10 years.  My hormone levels, to date, are pretty much non-existant which I am hoping will keep me healthy and cancer free for years to come.  This journey is not easy and everyone experiences different things at different times.  Just know that we are all here for each other and this community is amazing!  Take care and stay safe in these crazy times.

Re: Tamoxifen & Radiation Started

Posted by Scared on Apr 10, 2020 12:44 am

Thanks for the replies. This really helps!

Ineke my case is much the same as yours.  I was ER+, PR+ HER2-,  NO OTHER TREATMENTS had mastectomy of left breast.   Over 40 years ago I had partial hysterectomy so everything is gone just left with ovaries.  I was hoping maybe if they removed them now, I wouldn't need to take anything.   But they dont do that of course and apparently hormones dont just come from ovaries.  Guess I'm not very well informed, because I didn't know that. 
so today is my second day on Tamoxifen. So far so good.  Wish I could stay calm.  I had a migraine this morning and was freaking about what I'm allowed to take for it now that I'm on Tamoxifen but I googled interactions and I'm  ok now.  Ugh so much stress these days.
it's been a terrible 6 months for me.  First my cancer and surgery,  then 6 weeks later my son's wedding while still recovering,  then 3 months after that my dad passed away and now we're in middle of a pandemic.   This is like a nightmare that won't stop.  Nothing in my life feels normal anymore! 
sorry I'm ranting.  I should just go to bed now.
I'll let you know how I make out with any side effects.

take care and thanks again for being there.  

Re: Tamoxifen & Radiation Started

Posted by Scared on Apr 11, 2020 8:14 am

Ineke‍ 
I'm into third day on Tamoxifen and worst pain I have is right lower back.  I'm having trouble sleeping because it aches so much. Heating pad doesn't seem to do much and now I'm thinking of asking pharmacist what I can take for pain with Tamoxifen.   I have arthritis in my knees and they ache more than usual but that pain I can handle better than the back pain.  I just hate having to take more drugs to deal with with effects of this drug.  
I had terrible indigestion last night too but this may or may not be related.  It's so hard to know what the right thing to do is. 
After my surgery and all tests saying I'm clear I didn't want to take anything and was totally convinced this was the right decision for me.   But my oncologist is so sure that I should be on a hormone blocker of some sort even though my recurrence rate is medium low.
Do you take anything for pain relief while on Tamoxifen?