My 52 years old husband has just being diagnosed with leptomeningeal carcinomatosis and a L5 metastasis. Symptoms were head, eye socket, lumbar and leg pain, double vision, loss of sensibility along one leg, seizure-like attacks in which he lost control of his right arm and leg for some minutes and, recently, trouble walking. Cognitive function is still intact.
Previously he fought his way through 2 cancer treatments. In 2009, when he underwent surgery and radio for a sinonasal carcinoma in situ. In november 2014, when he had a craniotomy, followed by head radiation and chemo (cisplatin + 5FU) for a stage 4 poorly differentiated sinonasal small cell carcinoma, neuroendocrine type.
Just 2 months after finishing his chemo for the SCCNET, symptoms started. That led to being diagnosed with LC.
He was discharged from the hospital yesterday, after being inserted a PICC and receiving his first cycle of Topotecan as paliative therapy. Radio was discarded as he had already received too much of it.
My questions are:
- Despite being aware of the situation, I have to ask: is there any treatment, clinical trial, anything that would improve his prognosis in any way?
- What can we expect from the Topotecan? Does it cross the BBB so it's able to slow the LC progression?
- I would like us both to spend some quality time together now that he can still enjoy it, maybe even go on a short vacation if it's possible. Is there any chance the Topotocan will reduce his symptoms at least for a while, or the best we can hope for is his current situation so we shouldn't lose any time?
- Finally, he seems to think a cure is still in the cards. Partly because he didn't ask (or dared to) the right questions to his doctors, partly because they didn't tell him. I'm torn between letting him know, risking to throw him into a depression, or wait for him to realize it on his own. As doctors that face this situation often, what do you think is the best for him?
Thank you so much for your support.
Reply # - August 21, 2015, 03:29 AM
Welcome to GRACE. I'm sorry to hear of your husband's diagnosis, and from first hand experience I know how difficult it is to see the one you love suffer the effects of LMC. Unfortunately there are not great treatment options as yet. For some patients who have an EGFR mutation, pulsed Tarceva has been effective. Chemotherapy placed directly into the cerebrospinal fluid can be effective for some types of cancer, but it doesn't tend to work well for lung cancer patients. Most chemotherapy agents, including topotecan, do cross the blood brain barrier to a certain extent, but where there is active disease there, it doesn't tend to be sufficient.
Although topotecan might reduce his symptoms a bit, LMC does tend to progress quickly, so I would recommend that you take your vacation sooner rather than later. When my wife was in a similar position, that's exactly what we did, and I'm grateful that we did.
Unfortunately, stage IV lung cancer is not curable, but given your description of your husband's thinking, I'm not sure how much you need to dwell on that with him. Some patients do better using denial as their way of coping. Perhaps you can suggest a vacation soon, telling him that it would be wise to do so before the full effects of his chemo make it more difficult to do so.
My thoughts are with you at this very tough time.
Reply # - August 21, 2015, 08:17 AM
Hi Star 5
I concur with Jim. LMC tends to progress rather quickly, unless your name is Valeria Harper, and the sooner you take that vacation the better. My wife also had balance issues, double vision, and cognitive decline followed fairly soon along with incontinence. I would recommend a bed rail because my wife fell several times trying to get out of bed on her own due to balance problems. You will soon need help in the house because taking care of someone with LMC is just plain difficult. It's also not too early to look into hospice. Sorry to be rather blunt but you need to be prepared. While I say all of this to you there is nothing wrong with helping to keep his hopes alive. Take advantage of every good day he has and encourage him to see as many friends and relatives he can handle while his cognitive skills are in tact. My heart really goes out to you and your husband and I wish you both the very best. Bob4Beth
Reply # - August 22, 2015, 03:24 AM
Thank you both, Jim and Bob for your kind words. I'm very sorry for both of your losses.
I get the message that hoping for chemo to make his symptoms temporary better, though not out of the realm of possibilty, is unlikely, so we should better not wait. If only I could convince him to take that vacation! He refuses to go anywhere while he can't walk properly.
Jim, I'll ask hist oncologist next wednesday about pulsed tarceva, if only to know what she thinks about it. However, my husband's primary cancer was not lung cancer, but a sinonasal carcinoma that's being coming back, each time meaner and more aggresive.
Bob, I've been considering the posibility of an hospice too. However I know he strongly prefers to be at home, so I've also been thinking about hiring help, maybe a nurse, when things get rough. It's only the two of us in our home (though family is willing to help), and I'm afraid it would be too much for me to handle alone. Besides, we live in a 4th floor of a block of flats, with no elevator, so any worsening of his mobility will complicate things.
By the way, I didn't know about Valeria Harper's story. I know it's one case among many and that one swallow doesn't make a summer, but still it's a glimmer of hope.
Other than that, he's been ok these 3 last days: no pain, lucid, no remarkable chemo side effects, stable symptoms... if anything, angry he feels clumsy and his body doesn't respond the way he's used to.
He's been asking questions. Questions about his treatment, it's goal, what should he expect. The kind of questions that he didn't ask his doctors at the hospital and that I'm too afraid to answer frankly.
This wednesday he has another appointment with his onco and the next Topotecan treatment. I think he'll ask those questions then. I'll be there for him.
Reply # - August 22, 2015, 08:32 AM
Although I'm sure the meeting with his oncologist will be difficult, especially if your husband asks the questions you haven't been answering, I think that you're probably right to let his oncologist carry that load. Perhaps after the meeting, if it becomes clear that his symptoms are not likely to improve dramatically, he will agree to travel.
Sending good thoughts for strength during this challenging time,
Reply # - August 22, 2015, 08:49 AM
I think you are on the correct path and are the angel your husband needs right now. Hospice is often done in a home setting. You can discuss this with his oncologist. It's good that you have family to assist you because caring for a loved one with LMD is challenging. I do not believe his walking ability will improve, but my frame of reference is from a primary lung cancer and maybe it is different for sinonasal small cell carcinoma. I think your greatest challenge is being on a 4th floor with no elevator. It is already, I imagine, difficult to navigate the stairs, and I see it getting no easier as time passes.
I think leaving the details of LMD for your oncologist to discuss with your husband is wise. I hope that day goes as well as possible. My thoughts and prayers remain with you and your husband.
As an aside - it is an especially sad day for me. A good friend passed away this morning from Lung cancer after just being diagnosed 2 months ago. She was a picture of health just this past April as she walked a 5K with me honoring my wife on a Lung Cancer Connection charity walk. Just another reminder of how devastating this disease can be. bob4beth