My wife Jeanette was treated 2 years ago for breast cancer which metastasized to the brain. It has come back and a tumour was successfully removed from the cerebellum in her brain 6 weeks ago. Assuming she has still some microscopic amounts of cancer left, they have started to radiate the surgical cavity, but the preparation MRIs are showing new spots, confirming she has Leptomeningeal Disease, which seems really scary, as the prognosis is not good at all. We are going for a remote second opinion consultation with Memorial Sloan Kettering in NYC.
We would like to speak with someone who has also been diagnosed with LMD recently.
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Welcome to the forum @jocelyn
I am so sorry to hear what you and your wife are going through at the moment. I hope a forum member will be able to share their experience with you and that you’re able to get more information to make the decision that works best for you.
As it sounds like you may be based in the USA, I just wanted to let you know that any advice from our nurses on the Ask our Nurses your questions board- Breast Cancer Now forum is specific to the UK and our health system. The forum has people from around the world on it, and I hope that you find it a supportive environment.
Sending our warmest,
Lucy
Hi Jocelyn,
I hope this finds you both well. I’m a primary caregiver for my wife, whom has a story so similar to yours!
Her diagnosis was in July 2022, with Her2 Positive, stage three. After a horrible MRSA infection in her chemo port, she went thru treatment (Red Devil), a double mastectomy with some lymph gland removal, radiation and finally immunotherapy, which took us to January of 2024. We thought we had this licked when stroke-like symptoms appeared in September of 2024, which revealed a 31mm right-frontal lobe mass. The mass was successfully removed and a new treatment regiman begun. (BRIDGET study). After first treatment, new symptoms occured which scans revealed the LM. There were also spots on the lower lumbar spine region and cells present in the spinal fluid.
This diagnosis was in late November of 2024, and we’ve finished 30gy of WBRT, started Tukusa and will soon start Capecitabine. (waiting on bowels to stabilize).
We have a scan in two days to see where we stand.
Like you, we know the prognosis is grim, and are doing our best to enjoy the good days together. Those good days are where she’s able to be up and about, social and engaged. The bad days are mostly in bed due to extreme fatigue. Her cognitive ability has suffered, but we’re not sure if it’s the wbrt or the LM. The bowels were nearly uncontrollable for a period, and we believe the radiation treatments to the spine were the culprit there.
Know that you’re not alone in this period. I understand that feeling all too well.
Steve
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