Hi Su-Bee & others,
Saw onc. today, tumour markers have risen from 600 to 894, been at 600 since a month after my 'chemo holiday started at Easter - 16 weeks ago!! He said we will wait until next appt before going back to Cape to see what the trend upwards is like, fast or slow. There is only a small amount of Ascites but there is a growing amount of fibrous tissue surrounding the lobular tumour. Kidneys are working ok but they are keeping a close eye as the ureters may become squashed. Next appt is booked for 7 weeks time. More times to visit friends, off from South Coast to Lake District for holiday soon.
I had CMF chemo for primary back in 1999, masectomy and 5 years of Tamoxifen.
In 2009 they discovered I had spread to bones and peritoneal lining, this was all through my bones, and a thickening of lining. Started on Arimadex, 2 years, then something was interfering with one of my kidneys.
FEC chemo, followed by examestane, this lasted just over 2 years. Applied for funding for Faslodex last Christmas ( I live in Wales ) this was turned down. Started on weekly Taxol which worked at first but failed after 15 lots. Have now applied again for funding for Faslodex, onc thinks this is the best one to try as thicking of everything in my abdomen/ stomach means tablets won't get absorbed so well. I am on Letrozole in the mean time until we get an answer. I think I will pay for Faslodex myself if I get turned down again.
I have lobular cancer.
I have had Ascites since last Christmas, had 7 litres drained, then 7 weeks later had 6 and a half litres drained, I chose to have a permenant drain put in, have had this 2 weeks, seems ok.
Mostly I have been symptom free, problem is there is no way of measuring how the disease is progressing,this means I can't take part in any trials.
I also have desusanab injections monthly.
Hi Su-bee, I was diagnosed with a triple neg. lobular tumour in the abdomen last September. Also two blocked glands under left arm. Had primary triple neg. in right breast in 2000. I agree not much about 'us' on this site. The 'Alien' as I call it is pressing on the ureter just below right kidney. I started on Capecitabine last October, which gave me sore hands & feet. Tumour markers started at 1,800 & by April down to 600. Had a break for a holiday and after a month markers had not risen!! So the 'chemo - holiday' has been extended twice, by the time I see the Onc. next Monday it will be 16th week. Just had CT & blood test. I have been feeling quite well & enjoying myself but the abdomen has expanded, so I will find out if I will be drained. Gone from size 16 skirts to size 20 since Easter. Today not done a lot but popped out to shops for an hour & returned exhausted & slept in armchair for 4hrs!! It is the sort of fatigued i experienced last Summer when GP was trying to find what I had. I do not have it in the bones, but do have an odd condition in them either born with or as a result of a massive Strep A infection 3 years ago when I nearly lost a leg at the hip.
I look forward to 'getting together with you', Monica