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Sad update

Forums General Melanoma Community Sad update

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      Hey everyone, not looking for advice, just documenting my husband’s story here since it’s been a while since I’ve checked in with updates.

      After doing really well on prednisone, about a week after he was done with that (end of May) he developed severe fatigue, increasingly bad headaches, severe nausea, double vision, and increasing confusion and memory loss. It was very reminiscent of dementia. There were a couple false starts and uncertainty about what to do but he finally ended up in the hospital this week after an MRI showed ventriculitis, or inflammation in one of the ventricles in his brain.

      The doctors aren’t sure of the cause yet. It could be an infection (bacterial or viral or fungal), or it could be disease progression. He’s been at the hospital most of this week while the docs do tests on his cerebral spinal fluid to figure out what’s happening. He’s on antibiotics in case it’s an infection. If it’s disease progression, I don’t think there are any more systemic treatments for him since he has tried taf/mek, ipi/nivo, pembro, and ipi/pembro at this point. He’s also very weak and confused so I don’t think he’d be up for another strong drug. But right now we’re still hopeful (!) for a brain infection, which we can at least treat with antibiotics or antivirals.

      As the days pass he’s become less coherent and harder to rouse. He just had another CT scan of his brain to see if something might have changed again.

      I miss him very much. The past month has been very hard while he’s been so confused and unlike himself. I’m scared this is the beginning of the end.

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          Oh cjm22! Im so sorry for him! Just when ya think things are stable BLAM! i hate this about our disease its always something ya know? Prayers and good vibes your way..
            My husband also has metastatic melanoma and we are just starting opdivo treatments. He had 3B initially which was addressed with surgery , but is now stage 4 with mets to lungs and a small lesion in his liver. I hope things improve for your husband and I hope you can find the strength to continue to support him. Prayers up for both of you.
              Unfortunately we found out today that his mental decline is due to cancer spreading in his brain. There aren’t any more treatment options, so we’re focusing on symptom relief for his headaches and nausea. He’s still mostly unresponsive and very confused. The oncologist said she thinks he has weeks rather than months left to live. I’m so sad and I already miss him so much. I know you guys never met him (with the exception of GeoTony, but my husband wasn’t at his best that day), but before he got sick my husband really was the funniest, smartest, kindest guy. He was just the best. He could talk your ear off about anything and make you laugh, too. I’m really sorry none of you got to meet him because he was just fucking fantastic.
                  No words make the pain less.. but I believe, we in this community ,DO understand what you are going through. Prayers to you and your family to get through this .
                    He sounds wonderful and I’m glad the two of you have had such love. This process has got to be excruciating. Wishing you all the best…
                    adriana cooper
                      I am so sorry that you are going through this. Hold him tight. Make some recordings (I wish I had more video). You will have some precious moments that you didn’t even expect. Even though it seems he is not there, he is. He knows you are there.

                      Best wishes

                        I am so sorry to hear your sad news. I am glad he has you and that you have had him! Prayers to you and your husband as you move forward.
                          I’m so very sorry to learn of your husband’s decline, and the sadness of trying to find peace in the midst of your many losses. It must seem that you’ve only ever had this horrible disease in your lives together, but your love has sustained him. Sending you thoughts and prayers and wishes for pleasant memories to bubble forth and keep you company as you keep him company. There are so many supporting you as you walk this path.
                          Summer S.
                            Bless both of your beautiful hearts, I hoe this very difficult time passes in the easiest and most meaningful way, sending my love to you and your wonderful husband
                            Oh cjm
                            I’m so, so sorry to hear your devastating news, I was just thinking we hadn’t heard from you in a while, actually dreading it in fact.
                            The brief time we met and worked out who was who, I remember a big warm west coast dude and you both are so young,.
                            This beast just devastates all that it touches, a lucky few get away, for those that don’t make it out the other end it is so painfully sad for those they leave behind.
                            I’m actually in Vancouver for my next round of treatment on Tuesday, maybe our paths will cross

                            My thoughts are with you both


                                Hey Tony, thanks for the kind words. He really is a big warm west coast dude! He’s still so strong, too! He gets agitated sometimes and like three nurses have to rush in to make sure he doesn’t start ripping out IV cords, etc. It’s horrible but also makes me weirdly laugh because he was always VERY mischievous before he got sick, too. It’s just like him to keep everybody on their toes.
                                We’re still at VGH right now but I think he’ll probably move to hospice soon, just not yet because of the long weekend. Not sure yet if he’s going to stay at the Palliative Care Unit at VGH or go to an actual hospice. I don’t really feel like seeing anybody and am just hiding out in his hospital room or alone at our apartment. Unfortunately we just don’t have space in our tiny apartment and I’m too small and weak to safely manage him at home considering how confused and unstable he is. He is a really big and strong guy!
                                He was a little more lucid yesterday night and this morning because of all the steroids so we’ve gotten to talk a tiny bit. Not a lot, but it was still really nice.
                                He’s not in any pain right now so that’s the most important thing. Most of the time he is peacefully asleep. If he has to go this is probably the most peaceful way to do it.
                                I’m so so sorry to hear about your husband’s progression. This disease is awful. Sending love and prayers to you, your husband, and your family.


                                  I am so sorry to hear your news. No one deserves such an experience. Melanoma sucks great big green stinky hairy wizard balls on a good day – and this – this is devastating. However, I am glad the two of you have had each other. I know your husband is ever so grateful to have had his time with you, even today, when he may not be able to show it. I will be holding you both in my heart today and always. yours, celeste
                                    I am so sorry to hear this. Please know we are send prayers and love your way.
                                      I’m so sorry for all that you and your husband and families are going through. As Celeste said, I am positive that he knows how lucky he is to have you and how lucky you were to have eachother. It’s a ridiculous disease and even more ridiculous to lose someone so young and vibrant. Having read your posts for the last year and some, your advocacy and caregiving on behalf of your husband has been amazing. Thank you from the bottom of my heart for opening up on this board and sharing the good and the bad of what you all dealt with, it helps people more than you know. Your honesty is very brave. I’m just so sorry. His disease and treatment has caused the confusion and such, but I know he is in there and loves you very much.
                                        Thinking of you today.
                                          Breaks my heart to read your post tonight. So sorry for you and your family. Praying for you during this difficult time.
                                            This breaks my heart. You are so amazing in all you have done from back when you were girlfriend to fiancé to Wife. I’m sure your husband feels super lucky to have you battling for him every step. I wish you both the very best and want so much for him to make another comeback. We all feel a little of your pain and want the best for you both. Xo
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