I'm diagnosed stage 4 triple negative br ca from the start in Jan 2015 - given 1 yr to live without treatment and 3-5 with treatment.I've burned through a lot of treatments - 3 trials and recently I've not had any luck with the last few chemos - did many weeks of radiation - and had to stop working sept 2017 when I realized I hadr mets to brain - had 2 gamma knife surgeries - but brain mets are back and thr recommendation is for whole brain radiation - at this time ivwas on Keytruda ( got through compassionate use as insurance wouldn't approve) as the dr only gave he a few months with treatment and maybe a few more with whole brain radiation I opted for a wait and see and let's try another treatment. I have considered hospice but I am only 50 and have 2 boys who just turned 14 and 16 and I'm so scared to die. I am just in slot of pain from this lymphedema in my right arm which makes me take dependent on other people now
And o gave family and friends with me 24/7 as it has been just me and my 2 boys until a few weeks ago when my breathing became worse and I had to go to ER to be admitted and get my lung drained ( very new ) then a week later I was admitted with severe pain from lymphedema ( which I had been told nothing can be done ) during the second admission they found a blood clot and I was treated for this and to get my pain in better control.
After this I went to see a lymphedema ( vascular ) specialist at NYU to see if anything else could be done. I also started Navilbene and affinitor and was supposed to be three weeks on and two weeks off -2nd week platelets were low but we gave anyway and platelets came back but I have WBC count of 0.5 so we will try again next week - I still have such pain from severe lymphedema and my arm just seems to be getting worse - I feel if I could get this lymphedema under control my life would be so much better - it's a catch 22 -
Does anyone have any suggestions re: lymphedema , pain, treatment , fear, anxiety, brain mets, trials - my energy to research anything is almost non-existent and I'm losing hopeW