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Tumour markers

20 REPLIES 20
Momo
Member

Re: Tumour markers

Spoiler
Thanks Carolyn. I'll check it out and hopefully can reach something. My cousin in Germany has an oncologist friend who can better guide me. Will share my experience if anything useful does materialise.
cheers 
Carolyn52
Member

Re: Tumour markers

Hiya again Momo
I have just brought up the thread on German clinics for you.
It's under secondary breast cancer ..treatments and headed German clinics ...there is a lot of info there from downbutnotout about her visit.
Hope it helps you.
Xxx
Carolyn52
Member

Re: Tumour markers

Hiya momo
I don't know much about the German clinics ..only what I have read but giedre here is booked for the Hallwang Clinic in August . Also downbutnotout has been and just come back after three weeks treatment so i hope either of these two.lovely ladies pick up this thread and help u out but you can private message them .
It's very expensive though but you can't put a price on health.
All the best with it ..keep in touch as we all like to hear how this alternative clinics work etc.
Anyway loads of hugs xxxxx
Momo
Member

Re: Tumour markers

Hi Carolyn,

 

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.

george
Member

Re: Tumour markers

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

Carolyn52
Member

Re: Tumour markers

Sounds like the German clinic is very thorough but of course you are paying. Do u know the cost yet?
I assume the path labs have to keep the original tissue for ever sonewhere ..mine would b twelve years old and gone past its sell by date !!! Or I suppose do new biopsies.
I read online somewhere a patient that had been to Germany and put their bill online. It was €77000 and more for maintenance visits.
George ..when I got primary like u say ..you do the treatment and then you know u r finishing but with this secondary ..it's on going and it always ends up the same ...chemo !!
I've avoided it this time but don't know for how long ..but I'm 63 and a bit older than most to have to tolerate such savage chemicals.
Well hugs xxx
george
Member

Re: Tumour markers

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. 

george
Member

Re: Tumour markers

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

Giedre
Member

Re: Tumour markers

Hello Carolyn

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.

 

xxxxx

george
Member

Re: Tumour markers

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. 

Carolyn52
Member

Re: Tumour markers

Gietdre
It's horrible isn't it ..you get used to side effects of the treatment and then it stops working and u have to move on.
It's all scary as sometimes when u feel quite
Well ..you can almost think the cancer is gone !
And then boom it progresses when u least expect it !!
How r u getting on with the German clinic? Are u booked for August now ?
Giedre
Member

Re: Tumour markers

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.

Carolyn52
Member

Re: Tumour markers

My oncologist doesn't do tumour markers at all but when I see him in June ..going to ask about them.
I have a ct scan in June so probably the results of that will determine my treatment. I have been on femara/ letrozole for eight months now.
Everyone has different treatments as bc seems to make its own rules !!
george
Member

Re: Tumour markers

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.

Giedre
Member

Re: Tumour markers

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.  

Carolyn52
Member

Re: Tumour markers

George ..I'm hoping that you get some more replies to help you through this but sometimes it is quiet here over weekends and its a bank holiday too.
There is so much experience here.
Xx
george
Member

Re: Tumour markers

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

 

Carolyn52
Member

Re: Tumour markers

Yes its a real wake up call when u get that sort of result but hopefully with a good oncologist you will get the best next treatment.
Tamox is still a very much tried and tested hormone therapy and can work very well rather than the savage chemo you have been through.
Hugs
george
Member

Re: Tumour markers

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. 

Carolyn52
Member

Re: Tumour markers

Hiya welcome to our little family and you have come to the right place for support and kindness.
I'm hoping Nicky will be reading this and reply as she seems to have a huge experience of tumour markers and treatments as she has been under treatment too for a long time like lots of other ladies here.
Xxx
george
Member

Tumour markers

Hi 

 

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