Breast Cancer Now Forum

Hi all   how are all you eribulliners doing ?? Just reading through some of the posts has been really helpful for me recently. I'm struggling with the fatigue and joint pain. Feel like a 99 year old! Can't get up out of a chair without moaning and groaning! But reading through I see a few of us struggling with the same thing. Has anyone had any light headedness ( is that even a word?). I've just mentioned to the doc on the ward where I have my treatment and now she's talking about doing a brain scan! What!!   Hope all are well!  Jo x ... View more

Hi cmccallum   i was diagnosed nearly three years ago with primary breast cancer and then mets to the liver one and a half years after the primary. I had a mastectomy. It seems that if you are diagnosed with the double whammy of primary and secondaries together they don't remove the primary because it's already spread. I see the same consultant every time I go. I think when you do get a doctor who doesn't seem to know your case or has a 'not so good ' bedside manner its very unsettling. How old is your mum? What hospital are you at? Have you had a second opinion? I left my local hospital and now go the Royal marsden in London. Hell of a trek from where I live but worth it. Interesting the anti-inflammatory works.  I have been in tamoxifen (which didn't work) then letrazole which also didn't work. Then I went on capecitabine which is an oral chemo which worked fir a while then stopped! Then I went on to pacitaxol which worked for about six months then stopped then onto e/e combo which gave me pneuminitis so I had to stop that. Now on third line chemo eribulin. I'm 47 and have tolerated all off these pretty well apart from the last one which is wiping me out tiredness wise. I don't take that many painkillers. The minimum really.  How do you stay strong ? That's a tough one. I think all the ladies on here would agree that none of us want to be in this situation but .... We are ! We have good days and bad and pray we are here to see the important things in life that matter the most to us. Hopefully our children growing up. It's the most difficult challenge we face but we also know that as mothers , it's the most difficult challenge you will face. She will be trying to be brave for you and you for her. But it sounds like she has many options left if letrazole and tamoxifen are the only drugs she's used so far.  You are more than entitled to get a second opinion even if it's so that you see the same onc every time and they have a plan ready for you. It's always good to have a plan!  PM me if you want advice or just someone to talk too best wishes jo x ... View more

Hi  ss   yes but it's the private patients day unit. I guess some people may not want to know their blood results or tumour markers. It's a double edged sword. It lifts you when they are good and terrifies you when they are bad! It's a personal thing.   Best wishes to all   jo xx ... View more

Hi ss   im not there on thurs. I'm not there until 17/11. Do you go to the PPDU? Hope your treatment goes well today?  Jo x ... View more

Hi julia   Firstly do you get print outs of your blood results? I get mine every time I get a blood test done so I can see the changes.  If you have liver mets they will do a liver function test. You should be looking at alkaline trans, gamma gt and bilirubin. My gamma (which is inflammation of the liver) has been as low as 22 and as high as 1477. After two cycles of eribulin it is down to 330. My alkaline is 30 and bilirubin is 11 which are both normal. I don't have a scan to see if the lesions have reduced until after the third cycle. I don't know how many lesions there is but I think I can safely say too many to count. There was significant progression and it wasn't specified as too how many or what size in the ct scan report. One thing I will say is that you must get copies of everything! Every scan, bloods and letters sent to your doctor.  As far as I know eribulin is what they call ' third line' treatment. Basically if you've had two chemos that haven't worked this is the next line of treatment. I'm hoping if this pins the lesions back enough I can have SIRT or TACE treatment but need to stabilise liver first. please feel free to ask any questions or PM me if you want. jo xx ... View more

Hi belinda    thank you! The thing is you never ever get complacent with this disease ! Even when you get good news you think ' well when is it going to change to bad!' That's the cancer roller coaster that we all live with ! I'm just hoping to get some length of time out of this one as I've used up quite a few options. How's it all going for you?  Jo x ... View more

Hi all   wondered how everyone is getting on. I've had two cycles of eribulin and have had amazing results! I had significant progression in my liver which is just terrifying and after one cycle my gamma reading had gone down by 1000 ! My onc said it's rare to see such a quick response to treatment. I'm now nearly in normal range for gamma and everything else is normal ! I'm hoping this lasts! Having very few side effects apart from hair thinning even though I'm having the cold cap ! Tiredness is the main one ! hope everyone is well ! jo x ... View more

Hi belinda   i have my second dose tomorrow. Have you had many other chemos? I seem to be ploughing through them. I am looking at a procedure called TACE. I think I may have to go to Germany to get it though.    Good ode look to everyone having treatments and results this week! jo x ... View more

Yes. So sorry I put the wrong name! I'm at Chelsea too. Pm me if you like we can swap notes!   jo x ... View more

Thank you ladies for your positive and prompt replies.    Am am just having my first dose now. Hopefully coming out of the marsden tomorrow. Fingers crossed this one does the job   stillhere - are you at Chelsea or Sutton?    Best wishes   jo x ... View more

Thanks Belinda There always seems to be something with this disease that just drags you down! I'm on the e/e combo and that's actually proving to be difficult to manage. I've had a ct scan recently from neck to pelvis inclusive and nothing showed up. Would anything show up on a ct scan? I have a history of cysts,fibroids and endometriosis. Am fed up with the anxiety and worry xx ... View more

Hi all Just had scan result today and damn it the taxol has stopped working!! What a nitemare! They are starting me on the everolimus and exemestane combo hence bumping this up to see if anyone else is a) taking it and b) having any good results on it. Gonna run out of treatment if I keep using them up at this rate!! Many thanks and best wishes to all Jo xx ... View more

Hi Nicky That's excellent news ! Long may it last for you! Love jo x ... View more

Hi belinda Thank you for your reply. I read blondies post! What a star she is! It's really good to read stories like that. Wow and you 12 yrs. just what I needed to hear. Thanks for that. Janet - thank you fir your support also Jo xx ... View more