Breast Cancer Now Forum

@louby_lou69  I can understand why you feel a bit anxious with your classroom  situation - I used to be a teacher too and my classroom was the furthest from the toilet too and I think I would have worried.  2 things I would suggest - maybe have a few weeks off when you first start it to see how you react to it ? and could you ask to move classrooms in September so you are nearer to toilet? Hopefully school will be understanding.  Hope you are coping back at work - take it steady it’s a hard job .  ... View more

Hi Louby  I took Neratinib April 2020-April 2021  I was very worried about the diarrhoea side effects too before taking it .  I was prescribed Loperamide to take along side it .  I has to experiment a bit in the first few weeks to get the balance right . I took 1 Loperamide a day alongside the Neratinib and I was fine.  In terms of eating I was also worried as I am vegetarian and obviously eat a lot of fruit and veg . I did cut down - mostly I lost my appetite for them and wanted some beige food- but went through phases where I ate normally and it got better as I got used to it.  I quickly got back to normal once the year was up and really it didn’t affect me too much . But also it was the height of the pandemic so I wasn’t going out much !  Good luck with it  ... View more

Hi Fruaich I finished 2 months ago - so got through it !  It was OK - I never managed to drop the Loperamide over the year - I was on 1 tablet a day right to the end. I tried a couple of times to stop but the consequences were dire - explosive to say the least! so I stayed on it.  I mostly felt OK - not 100% not terrible - just a kind of offness. I had days I struggled to eat healthily and only wanted beige food so just gave in and went with it . It has been so good to fill my plate with healthy veg and fruit since finishing the course.  I also found that even one glass of beer/wine made me feel sick so gave up the alcohol for the year as well.  Was very glad to finish the year , felt like a release and since Covid restrictions have started to lift I feel like life is getting back to normal. 2 months on I am feeling good .  Good luck with your year - take it steady and be kind to yourself x ... View more

Hi Jane  I had the full clearance 2 and a half years ago when I was 60, it’s more uncomfortable than painful and heals quickly. Agree about the exercises- make sure you do them and keep doing them - I have full movement in my shoulder still and no pain . There is some numbness and no sweating in that area but otherwise fine .  Good luck and hope it goes well xxx ... View more

Hi Natasha  I’m post menopause so no menstrual cycle to disrupt . Just get hot flushes from the Letrozole anyway 😏 I tried stopping the loperamide and the diarrhoea was awful so have not tried for a while as been out on little trips in Motorhome and didn’t want to risk it.  Might try again now winter is coming .  ... View more

I was the same the first week with constipation- had to reduce the loperamide down from 6 to 1 and it has kept me stable so far.  They only give monthly prescription and have to give bloods and have a Covid test before they send it out.  Onc consultations all on phone and are getting more spaced Out as I have been OK .  ... View more

Hi Sam  I have been taking Neratinib since April. Took a couple of weeks to get used to it but I am mostly fine now.  I was a bit wary about starting it with the description of the side effects but it hasn’t been anything really bad- I take 1 loperamide a day to keep the diarrhoea at bay and 1 antisickness for nausea.  It has affected my appetite and I find I don’t fancy lots of fruit and veg - bit of a bugger since I’m vegetarian 😂   Hope your first weeks haven’t been too bad.  Take care  Bibi ... View more

Thanks for your reply- I am waiting for an appointment at the breast clinic to find out more. I was just interested in whether this was a common/ rare occurrence . Thanks again x ... View more

So good to hear you are positive Jac - and glad you has your op and got sorted.  I will raise a glass to our wonderful NHS  too and to wish you a speedy recovery .  Take care xx Bibi  ... View more

Laura hi again - look under the ‘going through breast cancer treatment ‘ section and there is a group for younger women - hopefully you can connect with someone through there  All the best  Bibi  ... View more

Hi Laura  sorry you are going through this at such a young age - I’m sure it would help to talk to people who have been through similar at the same age - I’m a lot older so have a similar experience physically but would probably affect you and me psychologically and emotionally in different ways. Keep up with the exercises is my advice - it will help tremendously and once the drain is out it will be much more comfortable.  if you look on the menu I believe there is a ‘Someone like me’ section that you can post on to look for people who have been through similar- or just start a new thread appealing for people your age to talk to. Take care and I wish you a swift recovery xxx  ... View more

Hi - glad you had your op  I had the drain in for about 5 days -2 weeks  does seem a long time to still have it in . Hopefully it will settle and you can start getting back to moving normally - it’s quite a weird and uncomfortable thing to have isn’t it ?  Take care  Bibi  ... View more

So so sorry that you have to wait - so awful.  if you look on the Hormone Therapy thread you will see threads and info re Tamoxifen.  I am on Letrozole as I am post menopausal- Tamoxifen usually given to pre menopausal women . They are drugs to reduce oestrogen which reduce  oestrogen +ve cancers growing.  So I guess they are trying to stop your cancer growing any more using the Tamoxifen.  So awful to have this happen - I hope they are able to get you in as soon as possible - did they give any time scale?  Take good care of yourself - I want to say try not to worry too much but I know I would be so just be kind to yourself and stay safe from the virus xxx Sending hugs xx ... View more

oh really - that’s a shame for them to cancel your Herceptin. Yes I’m also on the 12 weeks and it is to do with when I finished Herceptin.  Enjoy the sun xxx  ... View more

Thanks Jill- I mean I am following strict social distancing anyway but would miss my daily walk so hoping for some clarification later today from my onc.  Thank you  Bibi x ... View more

I finished Herceptin last June and am now just on Letrozole and I received the text and am also shocked - didn’t think Letrozole compromised immunity.  Be interested to know if anyone else got text if on Letrozole  Bibi  ... View more

Hi Bungula Sending you hugs - a tough time to be coping with BC and Covid 19. I had the same op August 2018 - was just in overnight and that was because it was an afternoon op. They try to get you out of hospitals quickly these days.  Recovery from op was not too long - just having the chest drain was the only thing to cope with really - the op scars settled down and healed quickly.  Take care of yourself and I hope it all goes smoothly for you - good luck x Bibi ... View more

Hi - I have also just been offered this treatment - wondering if anyone has started it and can give any feedback? Thanks Bibi ... View more