Hi everyone - I’m new to this so not quite sure what I’m doing, so I’ve posted in a few places!
Having finished chemo and RT for TNBC 2 years ago I now have the scary diagnosis of lung metastases. My oncologist is calling me on Wednesday to discuss treatment options but my Macmillan nurse thinks this will be oral chemo so that I don’t have to attend hospital due to Covid 19.
Knowing the poor prognosis for my condition I have done some research online and read about the CT7001 (Carrick) trial and metronomic chemo (MC) which I understand to be a lower dose of chemo combined with immunotherapy.
When I mentioned both of these options to my nurse she implied that neither were an option due to Covid 19 as the important thing is to keep me safe and oral chemo would mean not having to visit hospital.
Obviously I need to discuss the options with my Oncologist but my worry is that oral chemo may not be the best treatment.
We are obviously living in scary times which makes my diagnosis even worse. I would love to hear from anybody who may be going through any treatment for TNBC metastases to find out how you are getting on.
sorry you find yourself here, especially now when it’s difficult to get any Info, let alone make a treatment plan. I posted on here a few days back, in the same situation -see coronavirus -a rock and a hard place.
gov/ NHS guidance england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/Specialty-guide_Cancer-and-coronavirus_17-March.pdf seems to put us at the back of the queue . My onc told me that were I to get the virus and need hospital treatment , I would be unlikely to get a ventilator if I needed one becos of my lung condition. I have numerous small tnbc mets in lung tissue and pleura and would have been looking for a trial/metronomic chemo to start this month. All trials in London and Kent have stopped becos virus would screw the results.
I decided to wait for another 3 month scan and check progression rather than start chemo now and risk getting the virus with a lowered immunity. Capecetabine is an oral chemo which a lot of us have success with but it didn’t work for me so I would have been on a 3 weekly hospital visit for infusion. The best thing for me is isolation to avoid the virus and hope the cancer doesn’t get me first!
So sorry ,I’m not much help except to flag up that you’re not alone! Hope you find some answers - do please post if you do. Hugs and best wishes pam x
Hi Deb, I don’t know if I can give you much advise, but just wanted to let you know that you’re not alone and the lovely people on here will support you.
I was diagnosed in June '17 with TNBC and had a WLE followed by chemo and rads. Unfortunately I was diagnosed with bc again in Jan with a small spread to my sternum. I’m currently on IV chemo-I’ve got my 2nd cycle tomorrow. I’m feeling anxious about that being able to continue with cv, but the chemo nurse was very reassuring last week when I spoke to her about it, but of course in the current climate there are no guarantees.
I can understand your worry about not being offered the best chemo for your lung mets. Could you have the tablets for now so that you.don’t risk having to go to the hospital, but pursue other options once the cv crisis has lessened or maybe ask for a 2nd opinion. I’m going to try and get a 2nd opinion on my treatment options for after I’ve finished chemo x
Hi. i am very similar. Finished treatment for tnbc in June 2018 then I found out yesterday that It has returned in my lungs. I’ve been told that I will be starting weekly iv paclitaxal next week. Seems they tested my lung biopsy for something that might have meant I could try an immunotherapy but it didn’t fit the profile needed. Another blow.
I’m 47 with an 11yr old daughter and 15yr old son. Can’t believe I won’t see them grow up.
Sending you good vibes and good luck.