Hello
I was diagnosed with extensive non invasive BC last year and ended up with a partial mastectomy, reconstruction and radio. Finished treatment at the end of May and have been putting off the inevitable. I’ve read lots of posts and feel really emotional and stressed about the prospect of five years of side effects. My Onc suggested that as a mid 40s premenopausal woman, they are likely to be more severe. I’ve been prescribed relonchem. Does anyone have feedback about this brand? How long does it generally take for the drug to get into your system and should I expect to feel terrible? Any comments or advice very welcome
Thanks a million
Sarah
Hi Sarah
Everybody seems to have different experiences with Tamoxifen. So the best thing to do is take the tablets and see how you go. Some ladies have no side effects, others have a few. The main thing to remember is that if you find you are getting lots of side effects with a particular brand, then it’s worth trying a different brand.
I have found one brand suits me better than another. I get hot flushes but that’s it. I just keep reminding myself that this drug will hopefully stop the Cancer returning! That’s enough to get me through most days.
I hope you are one of the lucky ones and you stay side effects free. But if not just try a different brand. Good Luck, hope it all goes well.
Sal xx
Hi
I started on tamoxifen the middle of august and I too was worried about the side effects. The first month I had wockhardt and had a few hot flushes and stiff fingers and ankles on a morning for a few minutes, then I was ok, onc said was it like I needed oiling and yes it is!!
Due to problems with supply though on my next batch I got prescribed Relon and have been fine, same side effects but milder. Please dont worry too much about out other peoples symptoms as you may not even get any, remember people only ask for advice if they are experiencing problems.Think of the thousands of people taking it who are doing fine you never hear about xxxx
Hi Sarah,
I too have gone through surgery and radiation. Today I had my last rads session. Phew! I’ve started taking Tam two months ago and so far so good. So don’t worry. It’s not that bad.
Good luck.
Well it seems we are on the journey at the same time Dollie. As you say, fingers crossed that the side effects will be minimal. Think the advice about potentially changing brands is worth bearing in mind if things get difficult. At the moment the prospect of five years feels daunting after all the surgery and treatment to date. There again, feel lucky and blessed to be here!
Take a deep breath and do it! I took my first dose Wednesday and trying to be positive
I’ve been taking meds for just under a week now. So far only side effect seems to be odd taste in my mouth. Hoping for the best. Start rads two weeks
Feeling bad…haunted by the tamoxifen in the kitchen draw…just really wanted to have a mtg with fertility specialists before starting tamo and the appointment has been taking forever to come through. It all seems a bit futile though even meeting with fertility people given duration of tamo…
Maybe i should throw a tamo party…only its only you guys on this forum who would remotely understand!
How are you all getting on? Good? Okay?
Would be good to hear from you
Seabreeze
Hello lovely ladies
Box two and feeling ok! I was given a different brand this month but it doesn’t appear to have made any difference. My anxiety levels are a bit high, particularly when I wake up in the middle of the night, a few night sweats, but no more than usual. I think my temperature guauge is a bit more sensitive, but I could be imagining it.
How is the radio going Jackie? Seabreaze, how are you doing?
Keep smiling everyone xxxx
Hi lovely ladies,
Thank you for your updates…I’ve finally popped my first…(in a manner of speaking!)
What a week…met fertility bods to weigh up all pro’s and con’s…re trying for preg or not…risks re tamo or not, risks re endometrium given fibriods too…thought I had prepared myself to hear it all but came out feeling like I’d done 20 rounds in a Kenwood food mixer!
Heard that grapefruit juice may inhibit tamo so thought I’d mark the last tamoless day or occasion by having a grapefruit cocktail or two with friends…couldn’t believe it when googling that Seabreeze is a grapefruit cocktail! I’d forgotten! Had to be done, not sure my friends totally grasped the significance! As the juice carton ran dry I popped my first…so now a proud full affiliate of this strand!
Was given the wrong info about phased return to work by the office…another stress…and all they say is sorry…what about giving the right info in the first place? Is that too much to have expected?
What with that and last weeks Kenwood mixer experience I feel like I’ve been hit by two giant rollers in one week. Still, I’ve done the tamo at least! Hurrah! Just hope that doesn’t subside to argh!
Thank you for listening Jackie09, Romysgirl and Katzygirl…plus anyone else who relates to any of this!
Xxxx Seabreeze
Hi Romysgirl, Jackie09 and Forties
Welcome to this strand Forties, not been on Tamo long enough to answer (ps well done finishing rads, and on researching the whole booster thing…mine must have been higher grade, didn’t mean to panic you (I hope I didn’t), was just trying to help.
Well, its my one week and one day tamo anniversary…(yey!) and already my period, which has always been like clockwork has come early! Only been on it a week!
Also waking feeling v anxious but may be stress given work told me more misinformation…ops sorry…correction to info 1 month after we told you! They really aren’t conveying a message of care, yet as an org they claim to hold respect, health and fairness so highly. V frustrating and upsetting. Anyway, todays celebration and rant over!
Hope you are all getting on ok.
X Seabreeze
Hi Jackie09, Romysgirl and Forties,
Will be 4 weeks of Tamo on Christmas day!
Hope you are all getting on ok.
Jackie - 6.30 starts…that’s tough.
Finding I get sudden major mood dips…not sure how much is from stress re our lovely HR department or how much is the Tamo. Doc said Tamo could have that affect but should settle down after awhile. Hope so.
Want to wish my fellow tamo stranders a good Christmas and success through the Tamo in 2015!
Xxxx
Seabreeze
Hello everyone
i am a complete Tamoxifen newbie (I started taking it yesterday!) I have been prescribed Nolvadex - anyone else on this brand?
Basically I intend to get stuck into taking the tablets and see what happens and be as positive as possible. I am 4 1/2 weeks the other side of a LD flap recon so have just started to get back to exercising which is making me feel much better and very happy.
I have decided to take my meds at night as I read that this can be helpful. Is that true?
i eat healthily and do not smoke and as I said do lots of exercise - I intend to carry on this way and ensure my body is helped in every way possible back to being healthy and fit.
Any advice on supplements? I have read about tumeric, aspirin and Vit D.
All help and info would be gratefully received.
Vicks
That’s great news Romysgirl.
Bsal - I don’t get too many nights sweats, a few times a night. You may be right about low caffeine helping since I’ve not been drinking much tea or coffee.
Vicks - I think calcium levels can be affected if you are pre menopause (think it helps post meno but other way round pre). I guess the asprin is re the blood clotting risk…just think you need to be careful taking things if the side affect may not even affect you.
I still find I get rather massive momentary dips, although not sure if this is stress from other aspects…
I was also one of those stressing over starting tamoxifen. After six months I feel reasonably ok. I’ve put on around 5/6lbs which I’m really struggling to shift but in the grand scheme of things I’m one of the lucky ones. I did have a blip when I was given a different brand (relonchem) which I had an allergic reaction to the coating, my pharmacy are really understanding and now keep my regular brand aside for me
Hello everyone
It’s been 6 months for me too now…I feel ok but find that tiredness and night sweats creep up on me once a month. All my friends of the same age say they suffer from the same thing, so I can’t necessarily put these things down to the meds!!! My anxiety levels have clamed down and I have been prescribed various brands of tamo, none of which seem to have caused any problems. I’ve upped my exercise regime which I think helps to keep body and soul on an even keel. As Seabreeze and Dollie have said, I think we speak for the majority who are coping well and I certainly feel that I’ve overcome the initial stress and worry.