My 80 yo mom has secondary cns lymphoma. Other than extreme weakness and loss of control of certain muscles, can anyone tell me what else to expect over the next few months? Please assume no treatment.

I'm sorry to read of your mom. CNSL is a very tough diagnosis. Since it affects the white blood cells in the lymphatic fluid in the brain and spinal cord, then what will happen is that in time the cancer cells will form lesions that will interfere with the functions of the brain and spinal cord, so the symptoms-- what you might expect in the coming months, assuming no treatment-- are especially brutal:

Personality changes
Headaches
Nausea/Vomiting
Seizures
Sensory issues (visual, auditory, tactile)
Problems swallowing

Those are the cited ones, the major ones. Since we're talking about brain and spinal cord, the potential list is much longer.

Thank you. We've now been told it's not scnsl but that the dlbcl is back and the masses are sitting directly on nerves in certain parts of her body. I'm not sure it's a better diagnosis, but it gives me new areas to research.

While not likely as fatal, that diagnosis sounds rather more painful. Best of luck to you both.

By the way, when you say her DLBCL "is back" are you implying that she underwent treatment and the disease returned? If so, did they at least do another biopsy to confirm that it was DLBCL?

It actually never went away. She finished 6 cycles of R-EPOCH in August and had a "good partial response" meaning some areas of cancer were gone completely and others were reduced in size. She'd been having pain, numbness and tingling in her neck and left arm throughout the fall and an MRI was ordered but nothing showed up at the time. By October she had large red skin plaques near the first known site of cancer. Those were recently biopsied and found to be "consistent with the original finding of DLBC." Over the past 2 weeks she's had a neurological exam, spinal tap, and US then MRI of the left arm - which now shows a mass. The mass has not been biopsied. I think the oncologist would like to do a bone marrow biopsy, but Mom would rather not uness it would affect treatment. We were offered more chemo (differnt regimen), rituxin or nothing. She's opted for rituxin b/c the onco. expressed concern that she's so weak chemo may "expedite overall deterioration."
I plan to ask about neurolymphomatosis prior to our visit next week, mainly b/c it seems to fit her experience and the pain caused by this can be relieved by steroids. I know I'm shooting in the dark, but I can still shoot. :-)
Questions: 1. Is it impractical or presumptive at this or any point to ask the dr. for a general timeline, how little to how much time she might have left. 2. Do you think a biopsy of the arm mass would be helpful? (No pressure - I'm only asking for your thoughts, not a second opnion.)

1. Neither. it's an understandable question. Oncologists probably hear it more than any other question. And virtually every time they're asked, they have no idea what the answer is. Which is why they don't like the question. I would be suspect of any doc who gave you a timeline he or she was solid about because there are too many variables. In the past, pathologists have offered answers to that question by looking at a cancer's doubling time- how long it takes for a cancer to double in size, something they can determine through biopsy, kind of. But even that is far, far from perfect.

So ask. Just keep your expectations really, really low.

2. I can't say. Why did they do an MRI of her arm in the first place-- pain, other symptoms? Thing is, if it is producing symptoms, it would be good to know if it was a tumor, only to the extent that they could provide palliative care and reduce those symptoms (that would likely mean radiotherapy). It could be a soft-tissue sarcoma, it could be benign, it could be none of the above.

You might be on to something with neurolymphomatosis. Why do you think they want to do a bone marrow biopsy?

Thanks for the "low expectations" prep.

Originally an US was done on the arm. When it showed abnormal finding but no blood clots, an MRI was ordered to compare to one she'd had in Sept. which was clear. All of these were done b/c of pain, numbness & tingling, off and on swelling and loss of control (no grip, inability to bend fingers, floppy at wrist) which has gotten progressively worse fairly quickly. Onc. said the mass was probably too small to be detected at 1st MRI.

We saw a neurologist who ordered the spinal tap and said he strognly suspected scnsl (which helped me jump the gun as I researched it). He ordered several other blood tests, a heavy metal urine test and we'll see him again in 2 weeks.(MRI came after spinal tap and was ordered by onc.)

The bone marrow would be strictly to determine if it has advanced that far. It won't be done soon- I'm thinking after the 4 weeks of Rit. if we see no results from that. The onc. mentioned testing for sarcoma but it was just said in passing; I'll get more details tomorrow.

The reason I keep looking for something besides her original diagnosis is the speed at which this has progressed. Chemo ends August. Numbness, pain begin in September. October brings weakness on entire left side, hand losing muscle, unable to grip. November sees her unable to walk 50ft, right hand getting weak and 2 weeks of PT and OT which are determined to be more harmful than helpful b/c of extreme fatigue/ weakness. December brings no more walking, staying in room and unable to hold a pen or fork w/o special grippers in right hand, left side shows no improvement. Baffling - but I've learned more about how to research and being an LPN than I'd ever have imagined. :-)

I'll try to comment more later, but this article appeared in my inbox this morning:

Washington Post: How long do I have?

Thanks. This article reaffirms my thoughts about the dr/ patient relationship.
After talking with the dr. yesterday, we feel more confident with the diagnosis and treatment thus far. Asking for clarification and expressing our concerns/ questions has always been helpful.
This morning I was reminded that circumstances do not have to dictate my day or my outlook. Just because our lives are changing doesn't mean our reasons for celebrating have. So, should we not "chat" for a while, I'd like to say Merry Christmas.

Any updates on your mom's condition?

Thought about sharing on Monday, Ross, but got busy with other things.
We did ask the oncologist for a timeline and were told 6 months +/-. The conversation went well and really cofirmed what my mom believed to be the case. She watched my grandfather and father die with cancer and has seen similarities in her own health.
After a 2nd appt w/ the neurologist it seems that the lymphoma is probably in certain nerve cells which will eventually lead to ifiltration of the nerve root.(We did not complete the testing due to pain/ exhaustion so he, knowing our situation and the info he did have, gave us his opinion of her condition.)The only help for this seems to be chemo.
Mom has made it clear to me and the doctors that she will not have any more tests or chemo. She does not want to endure the hardship of travel or tests or treatments that will not do much to relieve her symptoms, even if they did briefly extend her life. She just finished a 4 week cycle of Rituxin with little results; the cancer has visibly spread and the pain is increasing. During a 4 week break, she can decide if she wants another Rituxin cycle, but that is unlikely.
We are getting home health services started this week and my ever thoughtful mother is walking me through her funeral service. We are sharing a few tears and some laughter along the way. She's been given a great deal of grace and is sharing it with me as best she can. I'm being asked by family and others the "Why" questions and am so thankful to live with someone who says, "Tell them, 'Why not me?' It rains on the just and the unjust and I'm just a person, like anyone else."
Thanks for your help and contact. I will keep you posted until there's nothing to post.

Stacy-
For the very sad and difficult circumstances described in your post, it sounds as though you and your mother are dealing with it in the best possible way. It's pretty well established that most of the time, terminal patients enjoy a higher quality of life and live longer (though not by much) when they skip conventional cancer treatments and stick with palliative care.

Best of luck--
Ross