Breast Cancer Now Forum

Hi Dawn - how heartening to hear you are 12 years post diagnosis of multiple bone mets. I was diagnosed with multiple bone mets in July last year which then spread to liver. I am currently stable on capecitabine with no symptoms and very manageable side effects. Long may it continue! Good health and stability to all you ladies out there. Chris x ... View more

Hi Mileytom - I am so sorry to hear your news but thought I would share my story. I was diagnosed with multiple bone mets in July last year which spread to my liver by December. I am now on Capecitabine (oral chemo) with very few side effects. My last scan showed things improving so will continue on meds - on denosamab for bones. I am a busy single mum of 2, still working, running 6 miles twice a week and have signed up for the full 26mile Moon Walk (in a mad moment). Life goes on and WILL get better - there are a load of treatments out there and so many good people willing to support us. I am enjoying reflexology and pilates. Off to Scotland on sunday with my 10 year old to enjoy the snow and do some horse riding. I wish you well and lots of love. Chris x ... View more

Hi Lyndylou, I thought I would share my experience with you. I am now on my 4th cycle of capecitabine for bone and liver mets. I had scan after 3rd cycle which shows partial response which is good so I'm told, so will continue on this until the cancer gets wise and it stops working. So far side effects minimal, during the 3rd cycle I got a sore tongue but this cleared with the help of corsdyl mouthwash and the one week off tabs. I am still managing to have a 'normal' life although try to have a rest in the afternoon. I am also having reflexology which I would recommend to all mets ladies. I do hope capecitabine will work as well for you. Chris x x ... View more

Hi I am on cycle 3 and have really noticed hair coming out. otherwise very little side effects. Hopefully this will stop as time goes on. I also have trouble sleeping although desperately tired - any advice? Hands and feet ok but getting through cream like you wouldn't believe. Wishing you all a good dry weekend. Chris x ... View more

Hi All - I saw my Onc yesterday and for the first time since diagnosis in July my tumour markers have not risen. Scan in 2 weeks will hopefully show stable disease. A fantastic start to 2014. Good luck to all you ladies out there. Chris x ... View more

Belinda and Lynn Thank you - what uplifting stories to start the new year. I'm still waiting to find the right treatment for my mets (diagnosed in July). Have had 2 rounds of capecitabine and will have tumour markers done on wednesday and see ONC for results thursday. Such a rollercoaster - one day I'm positive it's working then the next convinced it's spreading. Last appointment I found it had gone to my liver but very subtle lesions.So far no real sideffects from chemo but finger tips beginning to feel strange - may be my imagination as you get to expect these things. A Happy Healthy New Year to everyone. Chris x x ... View more

Hi All, have now been on capecitabine since last monday and so far so good. Does anyone have any idea when to expect a drop in tumour markers if it is working? Would one cycle do it because if not then I don't want to have them done after 2 weeks - too depressing if no change. Would rather wait til after cycle 2. Chris x ... View more

Hi Belinda - thank you so much for your reply it is always so encouraging to see people out there 10 years on. I think I agree with you on the quantity issue as I have young boys and am so well at the moment. Will discuss with my Onc when I get results next thursday - will keep you in the picture. I wish you good health and good luck. Chris x ... View more

Thank you ladies for your replies - I feel (maybe wrongly) that I should exhaust the hormone therapies before going down the chemo road. Also as my original tumor was grade 1 how effective will chemo be as it tends to work better on the faster growing cancers. I just don't want to make myself ill with the treatment when I don't have many symptoms from the mets. X x ... View more

Hi - can anyone help? My last scan showed only subtle progression of bone mets but my tumor markers have continued to rise since diagnosis in July. I have been reluctant to change treatment (letrozole) as pretty symptom free at present. However had scan on tuesday and will see next week if any further progression. My choices will be either E/E or capecitabine. I was diagnosed in July after 3 years of tamoxifen and have had the letrozole since July. Any advice would be apreciated. x ... View more

Hi Helen I was on tamoxifen when my bone mets were found and markers were raised. Now on letrozole and although pain improved markers have continued to rise. Going back today to see if they are still going up and then will change to E/E. My problem is - if my symptoms ok should I change?? Alk phos I believe is related to the bones and indicates disease. I have heard that some oncologists do not rely on cancer markers for disease progress. Good luck. Chris x ... View more

Hi All - I too am a bit confused about the tumour markers. I was diagnosed in July and markers were slightly raised, changed from tamoxifen to letrozole. PET/CT at 3 months showed only subtle progression and no new metastases. However markers have continued to rise - in the 200's now. My symptoms much improved (had fractured ribs with mets in spine and pelvis too). Due to start E/E but delaying a month as going away next month. It is interesting to see some hospital dont do markers as my ONC said if it was only on the PET she would keep on with the letrozole. As you say it is such a waiting game - like sitting on a ticking time bomb. However ladies fill your lives with the positive and get out there and take help and as many complementary therapies as you can. I have my first refexology session tomorrow, Raiki next month - human touch is very powerful. Chris x ... View more

Hi Claire - that's interesting to hear about denosumab as I can't get GP to give it, I was told that it has to be given at the hospital as GP's not keen to give. Starting E/E this week. . . . . . . Chris x ... View more

That's fantastic news - have a great holiday x x ... View more

 Hi  Rosie   I have now had 2 doses of denosumab with no apparent SEs - aches and pains but think they are due to fractured ribs and letrozole. Maybe headache due to stressed - I have just started pilates and all that deep breathing and concentrating really helps me relax. Good luck and take good care of your self. Chris x ... View more

Thanks Nicky will have a look - I know its not chemo but some of the side effects sound pretty like it! Chris x ... View more