My sister, Carrie, whose posts you can find here as doxiemom, was diagnosed Stage 4 in early May 2017, three months later she had LMD, and she lived until October 2018. Although that may not seem like a lot of time, it felt like a windfall compared to the pre-immunotherapy timeline, and I’m sure there have been treatment advances in the last two years.
You can read her description of her treatment, up until she started IT IL-2 with Dr Glitza at MDA in July 2018. She might have had a better outcome if she went to MDA sooner, or if she received something other than IL-2. She wasn’t a good candidate for IT IL-2 in the first place, but she had exhausted other options due to their toxicity.
The Ommaya port was the best thing about the IT treatment because it relieved her headaches from hydrocephalus. The induction period at MDA can be 6 weeks+ or more. My sister didn’t have kids, and we were with her, but she regretted going to Houston (from NJ) because she missed home and friends.
I am so sorry for what you and your family are going through. My sister really valued this forum, and was especially grateful for Celeste’s and Rob’s knowledge and encouragement. I think they have given you the best advice. If it would be helpful for you to have more information about Carrie’s experience, I know she would want me to share it.
