Meninges

[Izzygirl1]

My husbands cancer has spread to his meninges (layers between the brain and skull).

He already has completed radiation to the head for a tumor in his sinus cavity.

He just got out of the hospital yesterday on blood thinners for blood clots in his brain.

He has had one Pluvicto treatment so far on 12/26. Next one is 2/6.

MO mentioned whole brain radiation and continuing to see if Pluvicto would work on the meninges.

They are prescribing a Fentanyl patch for him because the dilaudid doesn’t always work and he takes it every six hours. When he’s in pain, it’s horrible.

Anyone else ever have whole brain radiation?

😢

[Margoto]

Oh no... so sorry for this news. I know you want to do everything you can to help your husband. Good luck.

[Izzygirl1 in reply to Margoto]

Thank you 🩷

[SeosamhM]

Old post, but is likely still relevant: healthunlocked.com/advanced...

[Izzygirl1 in reply to SeosamhM]

Thank you my friend!

[Izzygirl1]

I am hoping Tall Allen will reply…. Even if it’s bad news. Always appreciate his wisdom. 🩷

[dmt1121]

Sounds like you both have been through more than your fair share of pain and worry. I have no answers about this because have not heard of this particular condition. If you do your research and know you have good oncologists, you should be able to decide what's the right direction.

I hope you find what you need.

[Izzygirl1 in reply to dmt1121]

Thank you 🩷

[Cateydid]

Gosh, I’m sorry to hear this. The road just keeps getting bumpier and bumpier for you two. I have no insight regarding brain radiation, but want to say I’m sending you thoughts of peace and comfort on your journey; wishing you both the very best

[Izzygirl1 in reply to Cateydid]

Thank you 🩷

[NecessarilySo]

Sorry about his problem. I have had some skull and lymph node metastases on my head which I eliminated on my own with hot hot showers. I don't know if this would work with meninges. Read my bio.

[Hidden]

Izzygirl1, besides the pain, may I ask what his symptoms are? My husband has extensive Mets to bones throughout his body including spine. With no other treatment options available to him and is now in home hospice. He’s recently started becoming very confused, has memory loss and is getting quite volatile. His hospice nurse has suggested that the cancer may have progressed to his brain but I’ve read that that is actually quite rare.

[Izzygirl1 in reply to Hidden]

He developed double vision and was vomiting. That’s when we found the tumor in his sinus cavity. He had 10 rounds of radiation to his head. At a consultation at MSK I brought up his confusion and they suggested a brain MRI. We also wanted to see if the sinus tumor was gone. That’s when we found everything. (Results are below in a different response.) It seems that everything that has happened to my husband along the way is very rare. 😞

Did your husband try Pluvicto?

[Hidden in reply to Izzygirl1]

No, he was unable to. It would’ve been the next treatment option but due to a compression fracture of his T7 his legs are partially paralyzed and needs help with all things. He’s unable to isolate himself so that was eliminated as an option.

Thank you for your reply. Wishing you and your husband luck with all possible treatments

[Izzygirl1 in reply to Hidden]

Praying for you and your husband right now.

[Bo1948]

I can't say anything about the brain cancer but I can talk about the Fentanyl patches. If you work it out with them it takes a day for them to be working fully in your system and than they start breaking down a day after that so really they are only working fully one day and they get changed every three days what I did was my husband was on 75 mcg so on day I put on the 50mcg than the next day I put on the 25 mcg every three days I changed out whatever patch needed to be changed. He was on it for a broken hip. When it came time to get.off.the fentanyl I used a 25 and 25, than 12 and 25, than 12 and 12 tell just 12 every the days till none. Kept him pain free all through healing and PT without worrying about withdrawal. I know some of you will not be worried about the withdrawal but sometimes it's just convincing the Dr you have a.plan if he needs to come.off of it..

[Izzygirl1 in reply to Bo1948]

Thank you for those tips! That patch scares us a little!

[Radtech40]

My father was diagnosed July 8 with leptomeningeal enhancement. He did whole brain radiation 10 rounds. He has a tumor between skull and brain (dural mass) the whole brain radiation kicked his butt (he's 90) but he has recovered. Whole brain radiation is the best option for this diagnoses. If your husband gets it make sure they give him dexamethasone for the swelling that happens with the whole brain radiation and mementine which will preserve his cognitive function from the damage. My dad lost his hair, was extremely fatigued and nauseous (zofran for that) and lost about 40 lbs from not wanting to eat. He couldnt walk for a few weeks after radiation but that got better.

It has stopped the growth of the tumor but had more enhancement on last scan which they said could be progression or could be post radiation inflammation. They will repeat the head MRI in March. He's doing well now, a little confusion at times but maybe 2 headaches a month. Is your husband in pain from his head?

[Izzygirl1 in reply to Radtech40]

Thank you for replying and i pray your dad is in good spirits and feeling well now.

My husband has no headache pains other then a few visual migraines. He gets his pain in his legs and neck mostly…. But it travels. He is on dexamethasone 2x a day for the swelling around his brain.

[Radtech40]

I'm curious since this is rare and we are dealing with a similar issue with my father. Did his brain MRI show scattered lepto enhancement or only enhancement around the tumor he had removed?

[Izzygirl1 in reply to Radtech40]

It’s like a different language but here goes—

- There is new extensive dural carcinomatosis with multiple enhancing extra-axial masses along the right greater than left supratentorial convexities. There is also enhancing nodularity along the high left greater then right parasagittal convexities at the vertex. There is mild parenchymal edema adjacent to the left parietal convexity lesion and adjacent to the left parasylvian extra-axial lesion.

- There is extensive osseous metastatic disease throughout the bony calvarium, skull base, image maxillofacial bones, and the imaged upper cervical spine.

- Near-complete opacification of the right sphenoid sinus. There is extensive metastatic disease involving the central skull base and the previously seen right cavernous sinus/sphenoid sinus mass is decreased in size when compared to the 10/26/2023 brain MRI. Similar partial effacement of the upper right pterygopalatine fossa.

- Large right mastoid effusion.

- There is new cerebral venous thrombosis within the right sigmoid sinus, right transverse sinus, torcula, and throughout portions of the superior sagittal sinus.

[Radtech40 in reply to Izzygirl1]

Thanks so much for sharing that. I know...the reports are so intense with the wording. My father started out with some skull mets but when he started xgeva and lupron, they were gone and never returned. Cancer is sneaky, its awful and unforgiveable, I get so angry sometimes when we think things are going well and then "bang" a jump in psa or now the brain tumor, its frustrating and heart breaking.

I think the whole brain radiation can help, but it does come with some nasty side effects, it did help with the headaches for dad after the swelling from radiation went down.

If he gets whole brain radiation, see if they are doing the hippocampal sparing, it makes a big difference on cognitive decline, they did not with my dad because the tumor was compressing that area.

[Izzygirl1 in reply to Radtech40]

Thank you so much! I will ask the radiologist that tomorrow.

My sisters asked me to also ask how this will help his outcome? I am worried about his QOL. Right now he is in good spirits and we are cherishing every single minute together.

[Radtech40 in reply to Izzygirl1]

Its hard to say, dads QOL for 2. 5 months was absolutely awful, but the last 4 months have turned good again, its a gamble and rad onc does NOT tell you all of the side effects, I was shocked that he was so sick from it, the alternative was a painful death for him because his headaches were debilitating and his prostate cancer was under control so he felt like he had no choice, suffer or get the treatment and hope for the best. He doesnt have those horrible headaches anymore and is able to move about and watch tv and visit with family. Good luck, keep us posted!

[Cateydid in reply to Radtech40]

“Hope for the best…”

I’m reading a book called Hope for the Best; Plan for the Rest”.

It giving me great insight about what to do next….when the beast raises its ugly head again and there are no more options.

We DO hope for the best, AND I’m going to start planning for the rest. I’ll invite my Joe to join me, but he may rather just hope, and that’s okay, too 💕

God bless us every one!

[j-o-h-n]

Oh, if I only had a magic button.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/17/2024 7:46 PM EST

[Izzygirl1 in reply to j-o-h-n]

Thank you,,, you have always tried to help me!