ive never used one of these before so bare with me. ill start off by telling you guys about myself. im debbie age 28 from north east england and mammy to Darcyana age 3. My daughter has been battling a brain tumour since being 20 months old she was misdiagnosed for 5 months and almost died this left me with ptsd. i was diagnosed with SBC with bone mets and lymph nodes in april 2016 after being misdiagnosed. I as any normal human get scared when bad news comes or is on the horizon and my anxiety levels are through the roof im currently taking mitrazipine to try manage it. Anyway i had 6 docetaxel alongside herceptin and pertuzumab and had a scan in september once treatment finished to be told lymph nodes are almost clear and primary tumour has shrunk by around half bones were healing. I feel much better than i did on diagnosis and have been having 3 weekly h & p to manage it. i seen my onc last thursday and she told me that my tumour markers are starting to raise slowly they were 77 and are now 100 and something. All other bloods are fine so she wants me to have my CT as it was due. This has put me into a complete panic im terrified this means the end of the road for me and im dying. I have good days where my anxiety is fine then others where i literally shake with fear of dying and seeing news stories of people loosing their SBC battles really set me off. Currently on tamoxifen too.
So hello from me i always read the threads on here but never joined until now xxxx
Hello, I have just read your message and couldn’t leave without saying hello. So sorry that you are here and that you are going through such a hard time. Hopefully later some of the more experienced ladies will be along to offer you advice and it is always good advice and sometimes very calming.
I have read on here that some oncologists do not use Tumour Markers as they are not always reliable and that other things ie medication etc can change the results of these. Also whilst scans are a stressful time and waiting for results is never nice try seeing it as a good thing in that it will keep your medical team on top of your condition and treatments.
I totally understand how you feel, but please try to relax a little bit, do things that you enjoy doing and don’t think that its the end of the road. You are being treated which is the most important thing.
If you don’t get any more replies try posting on the bone threads section, there are some wonderful ladies who post on there daily and will offer you lots of support.
Welcome Mammydebxx, You sure have a plate full! No, wonder you are stressed and depressed, rightfully so! I’m sorry, I don’t know much about bone mets, doxcetaxol, herceptin or tumor markers. I only have one bone met and they aren’t really worried about it. I have lung mets. I hope doxcetaxol was easy on you. I heard it can be rough one. My onc hasn’t pulled that one out of the medicine cabinet yet! No, herceptin for me either, I’m HER2-. My oncologist doesn’t do tumor markers. She feels they aren’t reliable. She goes by how I feel and scans. I do think that as you go along this journey you are more tuned into your body and sensitive to changes. That doesn’t sound like a huge rise in a tumor marker, but hopefully someone with tumor marker experience will be along to chat. More importantly is how do you feel physically? Stay on top if this! Always call your oncologist if you’re concerned. Hugs to you and your sweet baby girl!! FF
Hi guys its lovely to meet you thank you for replying back to me. I’m trying not to worry about what could be and have read so much about tumour markers being unhelpful too I feel great much better than I did anyway I try my best to just deal with things but my little lady needs me I can’t let cancer win. The docetaxel was a doddle aside tiredness and leg pains I get now still every Now and again too. Hope you are okay also and feeling well xxx