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Worried about starting Tamoxifen - personal question

19 REPLIES 19
ellaniamh
Member

Re: Worried about starting Tamoxifen - personal question

Diagnosed with stage 3 bc at 44. Having underlying chronic fatigue, I struggled through the entire process. I had profound paim post op x 10 weeks. Absolutely scalding. No pain relief worked. Chemo was very difficult too. My body went on fire after first dose. Severe reaction to nuelasta too. Had to stop. I couldn't be touched anywhere with the pain. Was on reduced doses of chemo. Last dose cancelled. Peripheral neuropathy (now thinking it's fibromylagia brought on by chemo). Radium left me with inflammation and burns. I've held off taking tamoxifen. Was to start Feb 1st. Finished radium last week. I'm taking a break with permission from consultant.. severe constipation x 7 weeks. Body just didn't cope!. I'm very sensitive to medications. I found the entire process incredibly difficult. Especially mentally. I felt like staff found me "difficult" because I didn't respond to convertional treatments. It took more time to figure things out. I'm off all Meds last 4 weeks. Pain Meds don't work so no point poisoning myself further. (I'm a nurse/reflexologist). Now getting relief through strict diet (strictly no processed/no sugar)/no dairy), energy therapy and accupunture. Pain subsiding. Liver detox underway (heavy metal detox). getting more movement back into my joints. I burn with pain when I get tired and stiffen up so needed more resting periods and i stopped taking care of everyone else!! Menopause very difficult. Night sweats (absolutely drowned). Also no kids. BC robs so much. It drove me crazy when people would say "everyone gets BC now, you'll be fine"... Not a clue!!!! No kids. Infertile (tried to harvest prior to treatment but it failed). Body image (not my greatest concern). Body pain main concern . I want to return to work in a supportive/education role. Get more alternative therapy training too. Found the entire process pretty appalling! I would never ever go through this again. I think people so brave that keep fighting. I'm in awe! I'll post again in few months and see where I'm at. If I can help anyone, I will. 😊
nickif
Member

Re: Worried about starting Tamoxifen - personal question

Im taking Tam as well as having Rads. I started with hot flushes but seem to have settled down ( I have changed brand though so might be why) Hope the migraines go away, it might be just your body getting used to the new Meds
Ele J
Member

Re: Worried about starting Tamoxifen - personal question

Hi JsyJan, I started Tamoxifen on 2 Jan and started my rads on 7 Jan so they are concurrent. I did have chemo after surgery, but I think whether the benefits of chemo outweigh the risks depends on lots of things...your age, the grade of your cancer, the type (lobular, ductal, DCIS etc) so your oncologist will have weighed up those things. Don't forget that if you have surgery first, the surgery has removed the cancer, and chemo and rads are really just extra protection.

A month isn't a long delay...my tumour was grade 3 I.e aggressive/fast growing but the oncology team still recommended I have my planned holiday last year after diagnosis, delaying my surgery by a couple of weeks. And lots of people have longer delays waiting to heal from sugery, getting over chemo etc so I really would just put that worry out of your mind (haha as if it's that easy!)

The other helpful thing my Onco said is that for the first 3 months of Tam your body will still be adjusting to the difference so you may get all kinds of side effects that will go away or settle down in a few weeks.

And finally, it's possible your symptoms are unrelated to the Tam...if you've been worrying about your month delay, might that have triggered the migraines, for example?

Anyway good luck - hope the migraines stay away and hope this has been helpful, When are you starting rads?

Ele x
JsyJan
Member

Re: Worried about starting Tamoxifen - personal question

I know this an old thread, but I was wondering about 2 things:

I have early bc and been told I need radiation and tamoxifen only following my lumpectomy. Most people on here seem to be following on from chemo too. I started taking Tamo on 1 Jan (after delaying for a month worrying about side effects) Will this delay have been harmful (ie let some cancer cells 'escape')??

Also, I have read conflicting reports about taking Tamo at the same time as having radiation (soem say it is ok, some say Tamo reduces the impact of radiation) Any thoughts ladies??

Finally, 2 weeks into the Tamo, I have got 'itchy' down below, and, worse for me, had 7 days of migraine in a row. Today is my 2nd mig free day, yay, so hoping it was only a settling in side effect?? Nothing else yet.......!

Yvonney1
Member

Re: Worried about starting Tamoxifen - personal question

Hi Mrs B, I too am about embark on Tamoxifen for 5 years and am a little worried. I have had a mastectomy and they found a grade 1 cancerous lesion but thankfully nodes were clear. Due to my type of cancer being hormone receptive I have been advised not to take primrose oil or other herbal medications to help with Menopausal symptoms. Also St Johns Wort is not reccomended. I am 57 so already get hot flushes and twitchy leg syndrome at night so I guess this will get worse for me. I was given the breast cancer book on Tamoxifen therapy by my Breast Care Nurse. This should help to allay some of your concerns. I have found it helpful. As we all agree it is worth it to keep cancer at bay.
Good Luck and dont give in to despair keep talking and researching all the time to get the best for you.
xx
samjs
Member

Re: Worried about starting Tamoxifen - personal question

Mrs B,
I still feel I am at the beginning of my BC trip as just had 2nd WLE and waiting on results. Think I am having chemo as it was in a lymph node and blood vessel and to be quite honest I am more worried about being on Tam for 5 years than having chemo. Since being diagnosed I have felt that being on the pill followed by the Mirena coil all caused my BC (pumping the body full of chemicals isn't normal but we do it) And now I will need to pump more into my body for another 5 years! I have asked about having my ovaries removed as I was 8/8 ER and 8/8 PR but consultant said that is something to discuss with the oncologist. I have never worried about things like this at all before now I seem to be worrying about everything past and present.
Good luck all you ladies that are on it or have started it.
xxx
Nottonericnott
Member

Re: Worried about starting Tamoxifen - personal question

Hi Dianne
ive been on tam for 9 weeks now ! Now per menopausal! Take it at night so don't get hot flushes to bad during the day! But means sleepless nights!
Was emotional prior tam but found it got worse once I started it! But it is settling down now! No more crying at a drop of hat.
My concern was it makes your hair thin but with good shampoos it is coming back quite think in the places were I lost it! (I used the cold cap).
My libido was low after op but im begining to accept the way i look and feeling more comfortable with my image around my OH,and being on Tam has not made it any worse! (Keep lights off if u know what I mean) !!!
Hope rads go well
love Norms xx
Mary_grace
Member

Re: Worried about starting Tamoxifen - personal question

Hi Mrs B,
The possible effects of tamoxifen on libido worried me a lot. Seemed like the final straw on top of all the other indignities. I did have flushes at first but these settled after a couple of months. Thankfully other than that, I've had no symptoms at all and have taken all kinds of different brands. It doesnt affect my life at all, and I would happily take them forever if there was a medical benefit.

Tamoxifen is a bit of a comfort blanket for me (although who could need one in this weather?!) and once active treatment was over somehow it made me feel better than I am popping my little pills and "doing something" to reduce my chances of recurrence.

. I guess they have to tell you all the contraindications but there are many of us picking up the threads of our lives who happily take it with no side effects. Hope this is the case for you too. MG x

Mrs_B
Member

Re: Worried about starting Tamoxifen - personal question

Thanks ladies for sharing your experiences with me.
Paged, you made me laugh, at the moment I also dont know whether my hot flushes are chemo related or due to the weather.
You are right meemoo, I think I have got myself all worked up on taking the TAM. I know I am lucky to be offered it but all I seem to be told about is the SE's and not why I should take it. I still dont like the idea of taking TAM for 5 years, but suppose thats because it will be a daily reminder of having had cancer and being at risk.

So I have picked up my first perscription and will start taking it next week. I have been given Wockhardt Katzygirl I will hope for the best. My onc consultatnt has recommended evening primrose capsules for menopausal SE's, so have started taking them. I must admit feel a little sad when I use the word 'menopause'. I know its medically induced and temporary but feel too young to have to apply this word to myself. Yes, not having periods is not necessarily a bad thing (though my onc did say I may very well have periods still whilst on the TAM), but feel more upset about this at the moment than losing a breast. Feels like another part of my femininty is being taken away - along with my hair, eye lashes, eye brows and now finger nails.

Thanks again ladies, I really do appreciate your responses

xx Dianne XX
meemoo
Member

Re: Worried about starting Tamoxifen - personal question

Hi
I'm in my second months of tamoxifen, the symtoms that people talked about on this forum gave me all the same worries as you. Just remember that is normally the few that are having problems that tend to post as they are the ones that need support. The others who are probably doing really well on it dont post because it's not an issue for them.

If you start to think of all the side effects you'll only sit and wait for them to happen and then you'll start thinking your more time than normal ect when really your not.

Best of luck, I'm sure you will be fine on it and be able to manage any small side effects that might you may get (if any). We are lucky that we get the option to take a little pill everyday to stop cancer, that's how I try and think of it.
xx
paged
Member

Re: Worried about starting Tamoxifen - personal question

Dear Mrs B,
Thank you for posting your question. I am on day 3 of 5 years worth of tamoxifen. a heat wave seems as good a time as any to start with hot flushes if they happen as everybody is sweating so nobody will notice me 🙂 ! I attended the ounger womens forum in Leeds several weeks ago. There was a very useful seminar on menapausal symptoms - maybee one of the BCC administrators could attach an eelctronic copy if they have it. I found some of the infomratio very helpful and hope my husband will too!
Good luck. Let me know how you get. When all is siad and done, I hope that tamoxifen will keep me around to see my children grow up so I'll take the hit!

take care. x
Ethel_horner
Member

Re: Worried about starting Tamoxifen - personal question

Hi just a quick response. Give been on tamoxifen since December and have no side effects, none, not any! Ethel x
bulldogbyrne
Member

Re: Worried about starting Tamoxifen - personal question

I was diagnosed in 2010, had mastectomy but then diagnosed with lung cancer so had to have op for that. I then had chemo the end of 2010. I then had radiotherapy beginning of 2011 then I commenced Tamoxifen....there was one which was made by different company which gave me more menopausal symptoms but I cannot remember which 😞 I also had my reconstruction in 2011. I continue to take tamoxifen daily which I take in the morning with my omeprazole.......and paracetamol and I do not appear to suffer any side effects !! I have sweats which may be due to that or menopause or heat lol so I try not to think about it. I do not look at side effects any more as the more I read the more I suffer. And I am a nurse lol albeit a mental health nurse. Hope it all goes well for you I sent a friend request even tho I dont know what it means on here, but just knowing you aint the only one going through what you are made me feel better 🙂

katzygirl
Member

Re: Worried about starting Tamoxifen - personal question

Hi Mrs B
I was so nervous about taking Tamoxifen and all the possible side affects i read about on here, I have now been on Tam for 7 weeks and on day 7 of 20 days of rads with no side affects from either. Obviously too soon to be sure but would have thought some would have started by now. Sleeping well even in this heat, sex drive unaffected, I can still tolerate alcohol the same as before, no aches & pains so fingers crossed. I was just reading another thread on here that some different brands can be better re side effects and several found they lessen on Wockhardt which is the one I'm on so maybe ask your pharmacist for this brand. Also what time you take it can make a difference, I take mine at 8pm after my dinner.
Hope this helps and good luck.
Steph x
SP0
Member

Re: Worried about starting Tamoxifen - personal question

Hi Mrs B,
Main issue for me on Tamoxifen is the menopausal symptoms. Mine started during chemo & are not as severe now, 15 weeks post chemo.
I'll message you on a couple of points I really struggled with...
SP.x
Mrs_B
Member

Re: Worried about starting Tamoxifen - personal question

Thanks Cassowary and Zuzy

I am thinking of asking about delaying starting the TAM for a little while at least. Being that I am still feeling the affects of chemo and about to start my RADs, I really do think that is enough for my body at the moment. I think its not unreasonable to wait until RAds are finished. I want to monitor my SE's from the TAM and think that a break between the treatments will help me to do so.
Cassowary
Member

Re: Worried about starting Tamoxifen - personal question

Hi Mrs B, i can't provide any experience but just wanted to let you know that your situation reflects mine, except that I am also starting Herceptin before the rads at the beginning of August. I started taking Tamoxifen on Friday, so early days, but am trying to maintain a positive outlook despite my reservations about starting so soon after chemo and with two other treatments commencing in a couple of weeks.
Jude
Zuzy
Member

Re: Worried about starting Tamoxifen - personal question

Hi Mrs B, have sent you a personal message xx
Janet_BCC
Member

Re: Worried about starting Tamoxifen - personal question

Dear Mrs_B

While you are waiting for other members to come along with some replies to your post, I thought the BCC publication "Sexuality, Intimacy and breast cancer" might be helpful. Here is the link:

http://www2.breastcancercare.org.uk/sites/default/files/bcc110_sexuality_booklet_web_3.pdf

Very best wishes

Janet

BCC Moderator

Mrs_B
Member

Worried about starting Tamoxifen - personal question

Hi ladies

Just hoping for some advice/reassurance. I am due to start TAM shortly. I had am MX in feb, am two weeks post chemo and start RADs in 2 weeks. I have an appointment with my ONC on thursday and as TAM is part of my treatment plan, assume this will be discussed. What questions would be useful to ask?
I am really worried about the SE’s connected with TAM, especially the menpausal symptoms, low libido and mood swings.

Whilst I am generally coping okay, I am like many of you I'm sure on an emotional rollercoaster. Guess I'm worried that the TAM is going to magnify my emotions further due to its affects on my hormones. I am emotional about being emotional if you know what I mean. I am normally a strong person and dread the idea of being an continuous emotional wreck for the next 5 years.

I am also worried about the possible effects TAM might have on my relationship with my husband. We are a very strong couple and have accepted the interruptions to our private life, if you know what I mean from my MX and through my treatment to date. However 5 years of TAM makes me wonder if things will ever get back to normal. I know its quite a personal thing to discuss, but would hate to think that the TAM could affect this part of mine and my husbands life for such a long period of time. I am 38, and would love to think that I'm not ready to hang up my hat for good just yet.


I suppose, really what I want to know is, once your body has adjusted to it, that you can feel normal of the TAM. Suppose I'm at a point in my treatment where I can't imagine feeling 'normal' again and wonder what the new me is going to be.
Hope that some of you lovely ladies can offer me your experiences or advice of the TAM.