Hi,
Sadly, progression is difficult to predict. There are cases in which the damage is only limited to some memory loss and learning difficulties- these are seen in kids who had lymphoma and leukemia and so the disease is fairly stable.
For others, the condition is progressive, he may refuse feeding and control of his limbs entirely, and then if enough pathways are disturbed - it could kill him.
This difficulty estimating progression rate makes the doctor's job of estimating pretty hard, so I'm not surprised that you can't get a straight answer. You can get a feel about the progression in about a month's time - you could be able to check if he is declining or not. In this way, the neurologist's evaluation can help check what things he can and can't do and a subsequent examination will note how much the deterioration is.
Keep your spirits up. I agree you may need some help from hospice.
Thank you for your response.
Yes there have been symptoms…….. He has all of the ones you mentioned memory loss, inability to use/recognize some words, and problems with movement/coordination.
He has days that he is really bad…….can not get his legs to work, has memory problems and is really out of it! Then he will be kind of normal for a few days. He has small cell lung cancer and we have been told at this point there are no more treatment options. I am calling in hospice tomorrow for help.
Can you help me with a picture of how this will progress? Will the Leukoencephalopathy kill him? He is only 55 years old. He was a heavy smoker and a firefighter for 30 years.
It will be two years next month sense we first found out about his cancer. He was in remission for a year of that time before it recurred this past July. How much longer to you see him being here? I can’t get a straight answer from any of his doctors so I know how to prepare my family.
Thanks you again for your help!!!!
Hi,
oops, I cut my post....
COntinuing... is it possible that the MRI was performed as part of monitoring and currently there are no specific symptoms?
If this is the case, it is possible that the MRI picture may reveal damage - but that doesn't automatically mean that there should be mental decline. It is possible that the damage is present, but there is enough surviving pathways to compensate. In this case, we could only watch and wait, as it is possible that the problem has stabilized, and hence no neurologic deterioration will occur.
Discuss your issues with your doctor, and I hope there is a neurologist taking part in treatment. Stay positive
Hi,
At the current time, the role of radiation in producing leukoencephalopathy is uncertain, some chemotherapy agents have a stronger impact, and it is hard to thresh out how large would be attributed to radiation.
Another thing to consider here is the setting of brain radiation. Was this done as prophylaxis? (this means there were no brain metastasis and hence was given to avoid this complication). If it was prophylactic - this means the dose of radiation is smaller and fewer side-effects from it could be expected.
The practical issue is what are we going to do now? the leukoencephalopathy is treated in different ways depending on the underlying cause. It is not sure whether it is the feeding blood vessels that are damaged and hence produce the complication, or if the supporting cells of the brain are the ones damaged. Unfortunately, there is no specific therapy, I think that in the absence of contraindications - medications to avoid blood clots may help maintain decline of brain function (if we consider the disease as a function of blood vessel damage). Of course, he may need other medications like anti-seizure medications should such symptoms also arise.
The symptoms vary over which pathways of the brain are affected. Some of the more common would include memory loss, inability to use/recognize some words, and problems with movement/coordination. Pay attention to the last one, as he may sustain a fall which would compound problems.
On the other hand, are there any symptoms at all? Was the MRi performed