Brain MRI uncertainty

[Lisam81]

My dad had a brain MRI today due to recent severe migraines, SEVERE low back pain radiating to his legs to where he can’t even get comfortable in bed anymore and falls to his knees when they give out when he walks, and loss of coordination when he walks. They wanted to rule out NSCLC metastasis to brain but the end results don’t seem to show cancer his radiation oncologist said. However, no one seems to know what they show, only that something is going on in the brain. His radiation oncologist is getting him an appt with a neuro oncologist but we don’t know how soon that will be. His oncologist at Moffitt is on vacation so doesn’t even know about it. His back has been hurting off and on for a few months but this is a sudden, severe onset and he’s a major fall risk. Update - I did take him to the ER last night and it was worthless. They had no answers and discharged him with “see your doctor”. Brain MRI results read:

1. New FLAIR signal abnormalities involving the anterosuperior cerebellum, medially, with contiguous involvement of the lateral and posterior pons, fairly symmetric. Uncertain etiology. Could represent Rhombencephalitis, with possible causes including infectious/inflammatory or paraneoplastic etiologies. No enhancement/leptomeningeal enhancement is seen, though neoplastic etiology is not excluded given history. Appearance not typical for Wernicke encephalitis. No reported radiation in area.

2. Apparent involvement of the 5th cranial nerve root entry zones bilaterally, though non dedicated study.

3. Question faint enhancement involving the right para midline frontal lobe, improved from prior where there was more discrete enhancement seen in this area.

4. No new enhancing intracranial lesion.

5. No acute infarction.

[SusieJo1948]

Got me hope it's not cancer or anything serious. Please let me know what they figure it I. How are you holding up take care of your self. I'm here if you need me anytime. Love susie

[Lisam81 in reply to SusieJo1948]

Thank you. I think something serious is definitely going on and no one knows what is going on with his brain. I feel so helpless with this and he’s in a lot of pain in his low back and falling. Sat at ER 6 hours last night - it was worthless and they were no help. I am more scared seeing this than I was when he was first diagnosed because there’s no way to help him when no one can say what is going on. I’m going to try to get him somewhere today but it’s Friday and I don’t know what’s going to happen. 🧡

[SusieJo1948 in reply to Lisam81]

Oh sweet heart I'm so sorry you and your dad are going thru this I wish I could be there to help hopefully they will figure out what's going on. I'm full of hope for you both know I'm here for you both Love susie jo

[Lisam81 in reply to SusieJo1948]

Thank you so much! 🧡 We are trying to get it figured out quickly! I will update soon hopefully

[GMC1 in reply to Lisam81]

Lisa,

I have been some of those same places. Hospital numerous times to no avail, except to get "me" help for the moment. New doctor told us to go to the hospital for emergency if necessary but they do not know what cancer treatment he is on, so best check with an Oncologist on staff first.

I told you Ed just had radiation to his head for 6 small spots that just disappeared. So, anything in the brain can probably be treated with Steriotactics or whole brain if necessary. Hopefully. Nothing is certain with cancer and I don't know much, but I believe there will be help there if there is something. I also believe the Adrenals can be radiated by Cyberknife or Steriotactics.

Now to his back and legs, you don't want him falling. Lisa, this is where Home Health nurses come in. I urge you to ask your dad to just try them for a week or so. If he needs hospitalization, they will let you and the doctor know. Now, I suspect they will want him with a walker or even wheelchair, probably not on his feet as much, but again leg exercises as tolerated. Maybe doing them in bed. Maybe a urinal and bedside commode. Keep track of his liquid intake and output. Encouraging him to drink. Water, even flavored, Milkshakes, Ensure or Boost would be good. Also, keep track of bowel movements. We use Senokot as it is natural and easy on the body.

Sometimes it is hard to think when you are in the forest. I know, believe me. He just shouldn't fall. I know you know that.

[Lisam81 in reply to GMC1]

Thank you! The question of Rhombencephalitis on the brain mri report has me so scared because I know it is very serious, very dangerous and deadly if not caught early. My first concern is ruling out infection in his brain as mri didn’t deny or confirm that. Second concern is cancer metastasis, though we were told that is probably not the case, however it’s not ruled out. Today I had to push for the earliest neuro oncologist appt and the earliest is next Thursday but they ordered him a blood test today to check for Rhombencephalitis. That won’t come back for a week. She wants him to do a short round of steroids as he has a bit of cerebral edema. And she wants another brain mri in 1 month. We still don’t know what the brain mri indicates but hopefully she will tell us more next thurs at appt. Moffitt oncologist still on vacation so waiting for them to read the brain mri. I don’t have him getting up unless I’m with him or my mom. We are watching him like crazy because I’m so scared of him falling. He said his legs just give out with the back pain. I don’t know what’s happening but it seems very urgent. I will talk to him about home health again. Not sure how it will go. The brain mri is super scary to me as it is so uncertain what it means and no one can answer our questions. Radiation oncologist mentioned it may be from the Pirfenidone that he was taking for the clinical trial with the chemo. He is off that now as he failed chemo but maybe he’s having effects from Pirfenidone.

[GMC1 in reply to Lisam81]

At one time, I was told about the length of time it takes drugs to get out of your body as it is not immediate, probably depending on what the drug is. I remember at one point the specific drug had half life a month or two after. Perhaps you could find out about that on line or call a pharmacist about it. That drug might well be the cause of swelling. Hang in there and try not to worry too much until you know.

[Lisam81 in reply to GMC1]

Thank you! Do you know anything about a PEG tube and when you should make the call for it? He is still throwing up when he tries to eat. My gut tells me this IS related to whatever they found with his brain. But I cannot watch him starve to death. He doesn’t want a PEG tube, understandably so, but when is the right time to make that call? And do you know anything about how dangerous it is, and if it helps someone get stronger and recover from a tough period to where they can go back to eating normally eventually, or is it a dead end once the PEG tube is put in place? I don’t think it’s time just yet but I’m just trying to figure out when it’s time to help him get stronger. Something changed within the last week with him and it was sudden, though cancer has t spread, and it started with severe migraines. I was able to get him to get down a 530 calorie boost PLUS a 330 benecalorie liquid additive added to it, so 860 calories in a drink. So far he has kept it down.

[GMC1 in reply to Lisam81]

I have no idea what a PEG tube is so no help from me. Hopefully someone on here knows. Again Lisa, the Home Health nurse could start an IV for him with a doctors order if she had one. They will watch for dehydration, etc. think you might tell your dad it is for you, that you need the help, and you do.

You have done well in getting something in him. Monday has to be a new day for you and him. You need a doctors help. I am sure there must be a back up for you Oncologist who is out of town. I think he is at a critical point in that he is not eating, is weak and falling. Does he have a general practioner there who knows of the cancer, etc? You could call him and explain him not eating and you wondered if Home Health could come out and give him it fluids until you can get him with his Oncologist.

Wondering if anyone else agrees with me about him probably needing it fluids now.

[Lisam81 in reply to GMC1]

Thank you! He is drinking more than 60 ounces of water a day. I’m keeping track by giving him 16 ounce bottles of water. Oh and a PEG tube is the feeding tube, but I think we’re okay on that now as I have found a combination of high calorie boosts that he can keep down. So he is finally getting a lot of calories in him, though it is liquid calories but that is a huge improvement so we will take it! He’s now getting between 2700 to 4400 calories in shakes a day. I am going to do a separate question post now on something we found out today as I want to see if anyone knows of it. Thank you for all your help!! How is your husband doing?

[GMC1 in reply to Lisam81]

Lisa,

You are doing wonderful!! Great nursing.

After therapy today, his tech came out and said he did so well she planned to up the routine on Friday. Yea!

After seeing the doctor for check up past 3 week whole brain scan, she also said he was doing great. No side effects. MRI next month along with scan on lung tumor which was stable last scan.

He had his monthly Opdivo treatment last week and he got thru it without getting diahrrea this time. We treated him day after treatment for 4-5 days with anti diahrrea and prescription strong fiber stuff. Maintaining regular stools.

He needs to remember to breathe thru his nose and he will be better. So basically, good for the shape he is in as they say. Thanks for thinking of him.

Gloria

[Lisam81 in reply to GMC1]

I’m so sorry for the late response! My dad went into the ER and has now been admitted after having a spontaneous seizure in the parking lot of doctor and banging his face repeatedly into concrete. They are doing a lumbar puncture tomorrow. There is concern that it is a lung cancer metastasized to the lumbar spine and/or infection such as varicella zoster (internal shingles). He has the abnormal brain mri and swelling but his oncologist and radiation oncologist said it doesn’t show brain metastasis, however 3 doctors in hospital aren’t convinced. Not exactly sure what’s going on. I am so happy to hear your husband is doing so much better! It’s been a little bit since you updated so I hope he is still making positive progress!! That’s great!!

[GMC1 in reply to Lisam81]

Oh Lisa

So sorry to hear this. It is really hard and frustrating when you have so many opinions, but thank God you do. With so many new ways of testing now and several groups of doctors looking at the problems, hopefully they will get some answers for you. He is in the best place right now.

I had wondered how his weekend went. I am sure I am not by myself in saying I wish we could be there for you. You are a very loving and brave daughter. Stay in close touch as we will be waiting to hear. Prayers.

Gloria