Brain Mets Sisters

@divinemrsm Sending my best good vibes out to you and hoping for comfort and peace moving forward.

Thank you for sharing Camille's inner most thoughts. Both of you were so kind, welcoming and calming influence for not only myself, but so many others, here on the forum. Camille, may you and your family find peace in this difficult journey. I so wish you had healing this past year. You are in my thoughts and prayers.

Laurel

Does anyone have any advice regarding what provides you relief from the consistent headaches? I finished 10 rounds of brain radiation in September and went on a steroid for a few weeks that helped a bit. I've always suffered from regular headaches and occasional migraines, so I am used to headaches, but this is clearly a new level. I am waking up daily at 3:00 - 4:00 am and I find just getting up often helps. Exercise and massage sometimes will provide relief. I don't go back for a f/u MRI until late Feb. so looking for other suggestions to get me through the day.

We are all saddened by this. I have not heard from her since ( But no pressure , Camille!) but will let everyone know if I do.

It’s been quiet on this thread, which I hope is a really good thing! I’m writing today looking for advice, tips, positive stories, questions to ask the neurosurgeon, anything you want to share about prepping for, and undergoing, a craniotomy.

My last gamma knife treatment on one small spot was July 2024. The post-treatment MRI showed what they initially thought to be inflammation. It’s been on watch since then and they’ve recently decided I need surgery to remove it as they now say it’s unlikely to be inflammation since it’s continuing to increase in size. As of my MRI on August 2, it’s 3.4cm x 1.7 cm. It’s on the left cerebellum and is “superficial” or “more easily accessible because it’s not deep”. I meet with the neurosurgeon tomorrow. I have had no additional new mets in over a year and my body has had no evidence of disease for almost 2 years.

I flip flop between feeling like this is the beginning of the end and I’m not going to live much longer, to feeling a bit of a sense of calm that they’re going to cut it out and then any others that should pop up can be treated with gamma knife. I am currently asymptomatic although sometimes I think I feel something, whether it be a headache or weakness, but it could be just my anxiety taking over.

I am scared. I am scared I won’t make it through the surgery. I’m scared of deficits this could cause. I’m scared of the surgery causing seeding. I’m scared if this increases the risk of developing LM. I’m scared of having to tell my kids. 

I need to stop googling. Thank you for listening.

@illimae I always appreciate your insight and advice - thank you for responding again. I did read that you had a similar situation when I went back in the threads. I’m glad it went well overall, and that you have no permanent issues. Sorry that you had to go through the paralyzed vocal cord though. That sounds rough. I wish you many 5 more years!

May I ask how big yours was and where in the left cerebellum? Was it “superficial” as well? I tried googling a superficial cerebellum tumor… bad idea. I’ve been trying to talk myself off the ledge all day. I hope my hair will cover my incision if I don’t pull my hair back.

Was there much concern with “seeding” from your team’s perspective? I don’t even know if that’s a real risk or not. I also read that having a craniotomy to remove a met also increases the risk of LM significantly. Again, don’t know if that’s true. I want to say when I went back a few years in the threads, there was a post about how in the one member’s case, that did radiation first then surgery to reduce the chances of it spreading. But that doesn’t seem to be the norm.

Any tips for dealing with the worry and anxiety that’s about to come my way? I am expecting it to happen quite soon given how quickly I got in to see him. I hope meeting with him will help me not feel so terrified.

…scans. I did notice that it became crazy itchy once when my husband was messing around with amateur radio and antenna stuff but I made him turn it off and I was fine, weird.

Here’s a pic (looks worse than it was).

@fox3 Brain Mets usually start with headaches but what your wife is dealing with sounds fairly standard wor someone with a like changing diagnosis and hormone suppression on top of that. I was always accommodating and easy going but stage IV and sudden chemo induced menopause changed me. My health and happiness is my priority and that can be difficult for family and friends who get less of my time and effort now. I am also absolutely fed up with BS. I can only suggest giving her kindness and being helpful around the house. I do not recommend suggesting that something might be wrong in her brain causing personality changes unless there are specific concerning or potentially dangerous situations.

@illimae thank you for the additional information! The photo looks like it hurt. I’m glad it wasn’t too bad. I wish I was a naturally optimistic person. I think it would help me through things better.

Strange turn of events from the meeting today. It was a meeting to discuss options, which was never told to me. I got a call on Friday to go over my recent scan results and they said they weren’t sure of next steps, so they would discuss at rounds on Monday and call me back. Monday morning rolls around and I was just given an appointment with the neurosurgeon. I assumed a decision had been made and no one told me otherwise.

Anyways, it turns out I can either re-gamma knife it or have surgery. Neither was presented as the better way to go or the recommended option. He said they’re both somewhat equal. The spot that was treated a year ago is in the middle of two round shapes. The MRI isn’t clear enough to show if it’s all one long tumor or if it’s actually 2 smaller ones joined along the very edge. One of the complicating factors is that it butts up against a large vein and, again, they can’t tell if it’s attached to the vein or if it’s just pushing on it. If I had surgery, and it’s attached, he said he would likely have to leave some cells behind to be treated with radiation ~1 month later. I would also have to come off H&P for about 6 weeks. Which I’m not sure how comfortable I am with either of those risks. However, if I choose to do gamma knife again, they will likely fit me in next week and if it doesn’t behave, then surgery is on the table in a few months. I think I am leaning to trying gamma knife again as it has worked really well for me on the previous ones, knowing that I can do surgery if needed, but I would be interested in your thoughts.

Thank you for listening.

Thanks @illimae , I appreciate the input. I am leaning that way. Because there isn’t a definitive best next step, the neurosurgeon is going to chat with the head RO tomorrow to just see if he has other thoughts. Unless they decide that surgery is truly the better way to go, I will be going ahead with the gamma knife and cross my fingers that it’s going to work for me again. And like you said, I would still have surgery in my back pocket. He did mention that the incision would be on the back of my head and extend down onto my neck. He would need to move the neck muscles out of the way in order to access it, which would cause discomfort for several months.

what an amazing conversation and so many ideas with good, helpful comments. I just received news that the recommendation for my brain Mets is Whole Brain Radiaton (WBR) over 10 days in an outpatient setting. I’m supposed to move to a new medication Capivasertib too. I’ve blown through Kisqali and Verzenio. I’m really scared of what the WBR will do to me. Anyone have thoughts or experiences to share?