Stage IV NSCLC with Leptomeningeal Metastases - 1264284

newhopefordad
Posts:3

My 67 yr old father had a stroke in his sleep on 2/15/14 which left him with left sided weakness. While in the ER, they identified stage IV NSCLC that had metastasized to his stomach, thyroid, adrenal glands, and spine. He went to a nursing home for therapy on 3/11/14. On 3/26/14, he went back to the hospital with fluid in his lungs and extreme pain in his lower back. He was dx with CHF. MRI confirmed a 2.4 cm tumor at L4 consistent with leptomeningeal metastases (LM). While in the ER, they also discovered he had urinary retention, so a Foley catheter was inserted. Once the CHF stabilized, he underwent 10 rounds of radiation to his lumbar, and started showing positive response on day 3. He went back to the nursing facility with the Foley and continued rehab for the stroke. He finally started chemo (carbo/Alimta) on 4/22/14, over two months after being diagnosed. On 5/1/14, his bladder was bleeding so badly that the blood clots were clogging the catheter, and he had developed a fever. He went back to the hospital, and was dx with sepsis and a UTI. They started him on IV antibiotics and flushed his bladder to stop the bleeding. His platelets and WBC were dangerously low, most likely from the chemo treatment. They gave him platelets and meds to increase his white blood count, and he went back to the nursing home on 5/4/14. The therapy team at the nursing home decided that he wasn’t progressing and they could no longer bill Medicare for their services, which meant we would have to pay it ourselves. He developed another UTI and had to go to the ER on 6/4/14, so they kept him until 6/7/14. We moved him into my dining room and engaged hospice right away. I wanted to share this, because LM not only causes pain (in the back, neck and head), but it can cause other symptoms, such as paralysis/weakness of legs, urinary incontinence/retention, bowel incontinence, hearing loss, vision changes/loss, and problems swallowing. All of these things have affected my dad.

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JimC
Posts: 2753

Hello,

I am sorry to hear of all of your father's difficulties, his NSCLC diagnosis as well as the indication of leptomeningeal metastases. Having dealt with that during my wife's illness, I know just how terrible it can be and my heart goes out to him and you and your family.

I hope that hospice can keep him as comfortable as possible, and I wish all of you peace in these difficult days.

JimC
Forum moderator

catdander
Posts:

I just wanted to say hello and how sorry I am for what your dad is going through. I hope hospice is able to make him comfortable. I'm glad you've found Grace to be of help I know it's been a lifeline for me as well.
Janine

newhopefordad
Posts: 3

Thanks catdander. I've found this site to be very beneficial, especially in learning what to expect with LM. However, it took me about two months to find the new forums. Every time I searched Google for info and landed on cancergrace.org, it was taking me to the old forum, which I didn't realize was old until I tried to register and post something today. I now have access to even more information and resources than before!!

Dr West
Posts: 4735

Sadly, leptomeningeal carcinomatosis, while quite variable, is an extremely difficult complication to treat.

I hope he experience more comfort and support with your care, paired with hospice services.

-Dr. West