Muscular Dystrophy

so sorry you find yourself here.  I am only one voice but i regret having a single chemo treatment.  I was cut off after first infusion.  I have neuropathy in hands, legs and feet and my arthritis has worsened 10 fold.  My friend who had full chemo developed rheumatoid arthritis when she had none amd she is suffering.

Although i have an agressive type of cancer i do not regret chemo being disco tinued.

I hope you get enough input to make a decision that feels right for you.  All the best to you.

pompe is very rare, so there is probably little research to explain how chemo might affect your pompe symptoms.  That said, the DH also has a rare metabolic muscular dystrophy too and physicians are very careful in introducing meds.  I would have your  muscular dystrophy physician advising your oncologists.  In the DH's  situation, we usually start with pediatric or half doses of meds IN HOSPITAL.  Good luck!

melissamae - my mom had a variant of MD, dermatopolymyositis, and was treated with steroids and methotrexate, both used for breast cancer.  Have you been treated with these meds in the past, and if so, how did you do?  I would also seek an oncologist who is familiar with autoimmune issues, or who can work in tandem with your MD physician.  You might also request another genetic test, Mammaprint, as it would give you additional info on the benefit of chemo.  Knowing that chemo may worsen your existing comorbidities, and with clear margins and nodes, a low Ki67 and low-ish Oncotype Dx, chemo may present more cost than benefit.