My wife (54yo) went to her doctor in mid-January with some speaking and reading issues. A CT Scan showed a tumor on her left side, somewhat behind her left eye. On Feb 4, she had a stereotactic needle biopsy. Unfortunately, the sample taken did not give conclusive results. Unknown cells were there, but not identifiable. Fluid was drained from the tumor and her symptoms were relieved. She was scheduled for a second needle biopsy, but a week before the surgery, symptoms returned despite the fact she was still on dexamethasone. The surgery was switched to a craniotomy and conducted March 9. This time, pathology identified the tumor as a large cell neuroendocrine carcinoma metastasis. Much of the tumor was resected at that time. No primary source was found with subsequent CT and PET scans in the following month. The remainder of the tumor was given 5 sessions of stereotactic radiation therapy. Symptoms were relieved after this surgery and through the radiation, but returned in the first week of May. An MRI on May 10 showed significant thickening of the dura that was not at all evident on a March 22nd MRI. The original tumor site did show good progress in healing and result from radiation therapy. Beginning May 18, she began the first of 14 treatments of whole brain radiation therapy. We discussed intrathecal chemotherapy, but our oncologist does not recommend it, so at this point she is receiving the radiation therapy alone. Her symptoms are more-or-less controlled, but she is extremely weak and new symptoms have popped up including some double-vision, a significant limp, and dizziness. She scored better on her in-office neurological exam this week, so either the dexamethasone, radiation therapy, or combination has kept the inflammation at bay. I would love to know how others have navigated through this diagnosis with a lot of "unknowns" and if there is anything we're missing that we should ask about or check into.
Navigating Leptomeningeal Carcinomatosis - 1274152
mwfischer
![]()
Posts:3
Forums
Reply # - May 25, 2016, 04:13 PM
Hello,
Hello,
Welcome to GRACE. I am very sorry to hear of your wife's diagnosis, especially that of LMC. I don't know that there is much to add to what is already been done and what has been considered. Intrathecal chemotherapy does not seem to be effective in most cases, and it is a difficult treatment to experience. I hope that continued treatment reduces her symptoms. I wish I could provide you with more options.
I will keep you and her in my thoughts.
JimC
Forum moderator
Reply # - May 25, 2016, 09:17 PM
Hi MW
Hi MW
Welcome to Grace. I too am very sorry to learn about your wife's diagnosis of LMC. As you probably already know it is a very difficult complication with very few treatment options. My wife, Beth, experienced the same vision and gait problems. Not so much dizziness but bad headaches. As it progressed her speech, swallowing, balance became problems along with incontinence. There is a good deal of information on Grace if you search the archives. I will keep you both in my thoughts and pray that her doctors are able to arrest it in it's tracks. Stay strong; she will need you. Bob4Beth
Reply # - May 26, 2016, 07:07 AM
JimC & Bob4Beth,
JimC & Bob4Beth,
Thanks for the quick responses. I wrote not-so-much looking for a "miracle treatment" but the peace of knowing we're not missing something we should be doing. When something is so brand new and "foreign", it can be easy to miss what is very obvious to others. A site like this is very helpful for that purpose in seeing others in various places of similar journeys. Thanks again for the feedback and encouragement. One day at a time...
Reply # - May 28, 2016, 11:35 PM
Hi MW,
Hi MW,
I am sorry that your wife has LMC. My husband (52 years old) has the same disease for 4 months now. He has EGFR mutations so is on pulsed-dose Tarceva. He also had 14 treatments of WBRT. In addition, he has received 4 IT chemo, the last treatment will be in two weeks. He received a shunt placement 9 days ago. Now, his brain MRI does not show any lepto although his CSF continues to show cancer cells, but it is getting rare. His left vision has been impaired but his energy is getting better. His headaches, nausea and vomiting are gone. He could walk with a walker for 30-40 minutes twice a day. He needs a walker because of his vision. I understand that his condition could change at any time but I think the aggressive treatment help improve the quality of his life. We have had a lot of bumps in the road. But I think his condition is getting better except for his left vision. Yes, one day at a time. We try to cling on a glimpse of hope. My thoughts are with you.
Best wishes,
Emily
Reply # - May 29, 2016, 09:07 PM
Emily
Emily
It is so hopeful to hear that your husband is improving with your aggressive course of treatment. I hope he continues to improve. My thoughts and prayers are with you and your husband as well. Bob4Beth
Reply # - May 31, 2016, 07:34 AM
Emily,
Emily,
Thanks so much for responding. It sounds as if the timing of your journey is almost identical to ours. What great news that your husband is responding so well to the treatments. I hope you and he are encouraged each day--good or bad!
Mike
Reply # - May 31, 2016, 10:53 PM
Bob and Mike,
Bob and Mike,
Thank you very much for your nice messages. My husband already had symptoms since last September but the brain MRI was negative. Only until January when he had a special MRI that focused on optic nerves did it detected LMC. It has been a hard journey. We have a 10 years old and a 7 years old so each additional day is important.
Emily