Just wanted to say that I’m sorry that Paget’s has returned again. It is a difficult disease to deal with and difficult to know what treatment to use. I am still happy with using imiquimod. I have had no recurrence for 20months now since I stopped using it. Thinking back I used it for nearly 10 months but took breaks because it was so uncomfortable at times. And I had a few patches to deal with. I would say that it’s well worth trying if your doctor is supportive.
im 2 years now into using immiquimod for my paget's ...it has spread - maybe doubled in size - still non-invasive thank goodness .....i used flouracil (kind of chemo cream) because the immiquimod seemed liked it had stopped being effective last Fall for about 4 months .....and thats when my paget's spread - for whatever reason - my body di not react in a positive manner to it per the cancer. I'm back on immiquimod. There is a wonderful private support group on facebook. It has really helped me and is a font of information. Good luck to you all - its not fun !
Hi there Okie - so very sorry ...Hang in there! Dr. Grinsfelder has moved on from MD Anderson sadly but this very competent dr is wonderful and has taken on her patients at MD Anderson Houston Texas : KATHLEEN SCHMELER, MD [Gynecologic Oncology Center She has published a lot of info on EMPD and is a believer in alternatives to surgery ....but also does the required surgery. If you could start documenting your paget's progression and history - she may be able to do a tele heath visit ? would probably require lots of photo history if you have ...but thats' just my guess ...also I found the Nyssa mirror with light https://nyssacare.com/products/vievision-between-legs-mirror to be enormously helpful in monitoring and applying creams ....wish I could give you more ! xo Liz
