Will you please send us some info about the German clinic? I am currently having second opinion of a French wellknown oncologist at Justave Rossi. I have family in Germany and they hve been urging me to try out oncologists there. How eactly do they base their therapy on pathology tests and how accurate is this process? I am currently contemplating trying out the Germans in case my current regimen fails. I have had a faied Xeloda experience and now the French onco ut me on Taxol, Carb, and Avastin. I am scared that this may not work as Xeloda raised my TMs from 197 to 612 in less than 2 mnths! I feel that my days with my family are counted.
Yes, chemo is a force to be reckoned with and I don't blame you for trying other options first. I will be glad to have a break from it, even though I will be entering the unknown. Lovely, sunny day here which, along with this site, has helped to lift my mood. Enjoy the rest of the weekend. X
Hi Carolyn, not all oncologists use tumour markers and, to be honest, I wish mine didn't as they just add to the uncertainty. CT scan shows all stable then TMs rise; it doesn't make sense and adds to stress, especially as oncologist reviews treatment plan. Anyway, enough of my moans. I hope all is well with you.
Thanks, Geidre. I really do feel so much better for having posted on here and 'spoken' to you and Carolyn. You are right, it is a terrible disease and the fact it seems invisible makes it much worse. I do try to fill my days with lots of positive things, but sometimes, when you least expect it, the cancer knocks you down. Good luck with your treatment too and thanks again x
But I don't know if the cancer progresses just based on tumour markers, as I am supposed to have stable bone mets and nothing anywhere else. I can really understand you and everyone and George.
The German clinic is lovely, and they are sourcing my tumour tissue from the pathology lab here in Australia so that they can target treatments.
But it's the pathology lab that is giving them trouble, I think they have no experience of sending tumour tissue, whereas the German clinic does such things all the time.
The German Clinic has kept me updated, and even a oncology nurse has emailed me to introduce herself and tell me that I can contact her with anything at anytime. Here in Australia, the Breast Care nurse stopped contact with me when she found out I was stage 4.
yes we are going in August, but the clinic has to access my tumour tissue so that they can analyse it for treatment, as here i just get the next in line treatment, which may not work.
Sorry George if I gave veered from your worries, but I really do feel for you. Keep us updated, this s truly a horrible disease. I often wonder what kind of devil did this.
Yes, that is what is so frustrating for me. I will be on my third treatment since my secondary diagnosis and I worry that my options will run out although oncologist reassures me that there are many left. Fell I am always living in the land of wait and see. At least with primary there was a clear treatment plan: op, chemo, radiotherapy and hormone tablet. Sorry if I am sounding grim, just results came as a shock as I felt I was doing well. Also, I am on my 12th cycle of chemo so think I am tired from that. I have been having the three weeks on and one week off. Another moan, but bcn gives no support at all. Anyway, hoping Tamoxifen will give me some respite. Trying to enjoy the sunshine at the moment.
Thanks again to you and Carolyn for your replies. Got husband, family and friends to support, but sometimes you need people who have been there and know first hand what it is like.
Yes, each oncologist is different. Tumour markers cause me lots of stress, as my oncologist changes treatment based on the markers. It really scares me that treatments will run out. But I have heard that this horrible disease is called chronic. How can that be if treatments run out? I take thyroxine and never give it a thought, as that's the treatment that has worked for me for a long time. I wish that was the case with bc, just one tablet and then it would be truly chronic, but changing treatments is truly scary.
Thanks Giedre, I find the whole tumour marker thing very unsettling. Originally I was on Exemestane and tumour markers went through the roof which is why I was put on chemo to try to stabilise everything. I have scans every 3 months and the last one in April showed NED in organs and stability in bones which is why the rise in TMs came as a shock. Oncologist said he will try Tamoxifen and if that does not have any impact I will be back on chemo. Trying to be positive but fear I may run out of options.
Thanks again for your reply.
Hi George. I do understand your anxiety. I am the same. I was on femara for 12 months and my tumour markers rose to 120, so I really don't understand why my onc changed me to tamoxifen and watched my tumour markers rise over 9 months to 487. He has changed me now to Faslodex and my tumour markers are falling. I think the whole tumour marker thing is confusing. Perhaps have scans as they are more accurate. I had scans recently with tumour markers of 487, which showed NED of organs and stable bone mets. Your tumour markers may not really show what is going on. Please have scans.
My oncologist is excellent and takes things in his stride; he always seems to have a plan. Thanks for your reassurance. I was just keen to find out if other women had been in this situation. I am sure I won't be the first. Thanks again
Thanks, just that the news took me by surprise so feeling a little dazed and uncertain about what will happen next, especially if Tamoxifen has no impact. Have been really positive up until now.
I am new to this site. I was diagnosed with breast cancer in 2008 and secondary bone cancer in April 2015. I have been on weekly Taxol for 11 months, just started cycle 12 (phew). However, oncologist has said that tumour markers are rising again -up from 487 to 583 in a month which indicates chemo no longer effective. TMs had been stable up to this point. He is seeing me again in two weeks and has suggested I go on Tamoxifen for a while to see if that will keep everything stable. I was on Tamoxifen for 2 years when I was initially diagnosed then consultant changed to Exemestane as I was post menopausal. Just wondered if anyone had been in a similar position as feeling really despondent at the moment. I knew the chemo would not las forever but it had been effective until now. Sorry to sound such a misery