Breast Cancer Now Forum

Hi Grammy Bear - I totally get where you're coming from. I was put on anastrozole initially but the pain in every joint and muscle was excruciating so was changed to Tamoxifen after one month. Although the pain wasn;t as widespread with Tamoxifen, mainly right knee now and after 18 months I have times I can barely walk, getting up off sofa and sitting down is so painful I have to grunt and pull some really unflattering facial expressions - but at least I'm at home. I gave up work to focus on my recovery and one year on everything is worse to be honest. Oncologist suggested it might all be down to depression so I tried Citalopram for three months but didn;t notice any difference in fatigue or pain so have stopped it. I have also stopped the Tamoxifen five days ago - my plan is to try without for three months and see if energy and pain improves.    It's such a dilemma but I just don't think the Tamoxifen improves my chances enough to make this limited mobility worthwhile. I'm an active person with many hobbies but this daily nightmare has worn me down so I have no interest in anything and this is so not me. I also got permanent nerve damage from the Docataxol part of chemo which has resulted in severe tinnitus, a loud whistling in both ears all the time. It leaves me feeling very wooly headed all the time so thinking and concentration become such an effort to maintain.    Two years on from initial diagnosis and I can honestly say this past year has been worse then surgery, infections, chemo, and radiotherapy combined.   Well I'm sorry my reply has turned into my hard luck story - it's just so current for me. Oncologist did say that changing brand of Tamoxifen can help as sometimes the pain is due to intolerance of the various additives used. Personally it didn;t make a difference for me but I have read quite a lot of others experiences and many have said it improved things significantly for them. Worth trying perhaps.   Good luck xx ... View more

Thank you Amero - I checked with a local M&S and went there today. Got measured and bought two bras for very reasonable price ... getting VAT deducted was a bonus too. I'm very happy 🙂 ... thanks again 🙂 x ... View more

I've been taking Tamoxifen for just over one year and have had some new issues for the past few months, including itching and eczema. I hadn't realised that different brands have different coatings which can cause different problems, so haven't been taking notice of brand names until now.  Currently I'm on Teva and my oncologist has suggested changing to Wockhardt. The itching wakes me up at night, mainly right arm where lymph nodes were removed but to be honest I itch all over sometimes. Skin is also extremely dry and I can produce a veritable snowstorm of skin flakes when I take off my leggings even though I moisturise daily. I also itch like crazy 'down below' which is a new development. I'll see how things go with the Wockhardt brand.   ... View more

Thank you catokitty - yes I've been feeling super sensitive lately thanks to this Thoracic surgeon who will be getting a strongly worded letter from me now I'm done with them.  I know this forum can be quiet but I haven't been thinking quite rationally 🙂   And now this sternum situation has been resolved I have been booked in for implant and uplift in March which I hope will mark the end of the hamster wheel I seem to have been on since day 1. It will be strange having two boobs again ... View more

Thank you Lizzy - your reply came through as I was posting a following up message myself. I was surprised that no one had acknowledged a post that was clearly about the distress of being ignored ... ironic lol.   Anyway in case this subject comes up for someone in a future search I thought I would write the outcome. I saw my breast consultant last night who had a faxed report he had eventually received yesterday showing an initial report dated 17 December and final update 21 December. So telling me it was showing as status incomplete the other day and that its normal to take almost four weeks was not true.   The results show fibrosis in the sternum but no malignancy. The lesion has been showing up as metabolically active in bone scans since my initial diagnosis in June 2014 so my breast consultant thinks the cancer had started to spread there but the chemo and tamoxifen have dealt with it. So alls well that ends well. ... View more

Glad you're feeling less anxious now Patty and the news seems to be good.     ... View more

Hi there Nanny Sal - my biopsy is also for a sternal lesion which has been there ever since my initial diagnosis in June 2014 ... they weren't that concerned until last bone scan showed it had reduced in size which might be due to the tamoxifen working on it, hence the biopsy which is booked now for Friday 11th December.   I agree the waiting is tortuous and the seemingly never-ending issues cropping up can be so difficult to deal with.   I really hope your CT scan puts your mind at rest and everything is okay. xx ... View more

Hi patty - I feel for you as I wait for a bone biopsy appointment, hopefully Friday. I can relate to your comment about life going ok then getting the rug pulled out from under you. I had taken up cycling, nordic walking and joined a local Rock Choir ... really started to feel I was getting the old me back again. It is difficult to cope with the uncertainty, the waiting, the overactive imagination ... and I don't really have anything I can say to make that better other than I understand the emotions and you are not alone.   For me I have found it helpful to know what will be done if the test comes back as metastasis, and I've been told they can operate so I am holding on to that as a positive and taking each day as it comes. I am also throwing myself into crafting which helps me to zone out all those worrisome thoughts.   I hope your scan is sorted soon and the news is positive.   ... View more

Hi Samntha and everyone else ... I had my 5th cycle today and went for the FEC75 ... they gave me extra recovery time after what they called a severe toxic reaction to the Docetaxel ... I haven't felt ill for the past few weeks but my energy levels, stamina and mood are still really low ... I also managed to hang on to my eyelashes until the Docetaxel and losing them has been difficult as I don't feel I can paint on my mask like I could before ... I went to a Look Good Feel Better workshop last week but I just don;t like myself without eyelashes and I know that sounds selfish and shallow but it's making me not want to go out and see people which is not good ... I was happily going out with my bald head and lop sided chest no problem but I've turned into a right hermit this past month or so.  I just feel like I've had a complete personality change since the Docetaxel and wonder when I will start to feel like the old me again. I have to say how much I admire all of you who have persevered with the Docetaxel in spite of the pains etc ... I truly and sincerely wish you all the very best in your recovery   ... View more

Thanks so much for your reply Maryland ... I saw oncologist today who has cancelled next week's chemo and is reluctant to continue with docetaxel because of the extreme reaction in terms of severity and duration ... she is suggesting I either stop now after the four cycles or have another two FEC at reduced dose ... FEC75. My temperature was still spiking last night and rose to 38.4 which means I should have gone back to A&E but I went to bed and it's back to normal this morning. She said that full treatment gives me an 80% chance of surviving beyond ten years, and stopping now reduces that to 76% ... I reckon I can more than make up that 4% with lifestyle changes but if continuing with FEC75 gives me another 1 or 2% then I will probably go with that. ... View more

Hi there ... I had my 1st Docetaxel 13 days ago ... I would liken the pain to falling 100ft on to concrete if it was possible to survive it ... absolutely everything hurt and the pain was excruciating ... I was bedbound for five days and I've also had two trips to A&E with high temperature ... and right now I am blubbing like a baby as I type ... feeling so low and emotional. The fatigue has been debilitating and I am petrified at the idea of sitting in that damned chair next week while the stuff is dripped into me again. This is the worst I have felt since my diagnosis in June having felt very positive throughout surgery and most of the FEC cycles. I'm seeing my oncologist today and hope they will offer stronger painkillers and a reduced dose of Docetaxel next week ... everything about this is just so hard ... I really really hate self pity but feel I'm wallowing in it right now and struggling to snap out of it 😞 ... Lynda Bellingham's death hit me hard and I feel guilty that I'm not appreciating how fortunate I am ... which has been my mindset throughout until recently. I do hope others are getting the help and support they need to deal with it .. it did help to read others are feeling floored by it too even though it saddens me that this treatment is so punishing on us. Best wishes all. ... View more

Thank you all so much ... more good news for me is that I'm covered on my partners private health insurance through his employer .. this means I can see my consultant on Thursday for results of CT scan instead of the two to four weeks he said it would be on NHS. He said it was a busy day for positive results yesterday  My kids seem to be handling it well ... my daughter is diagnosed with emotionally unstable personality disorder and I was absolutely dreading telling her as I am the one she relies on a lot for emotional support ... but she came through for me and held it together which was such a relief. It's early days and the news is still sinking in for all of us but we are a close knit family and that is such a blessing I know. Hopefully I will have uplifting news on thursday. Thank you so much for taking the time to reply ... bless you all xx ... View more

Thank you Evie ... very pleased you had a good outcome and what you say is reassuring ... not too long to wait now for me and hopefully will be posting good news as well ... you take care xx ... View more