I managed to catch it on my watch ekg a couple of times. Just curious if this is a medication side effect. I’ve been on the 1.5 for a little over 2 months. It was happening a lot this afternoon but has subsided for the most part. Still getting them every now and then.
My best friend since babies died of brain cancer. Now the love of my life has the most aggressive form of it. Every day I ask why him. With treatment he has less than a year. It’s been 8 months. He has vision loss, diabetes insipidious (affects sodium not blood sugar) , blood clots , and so many other issues with it. His family has a history of cancer and most of them have beaten it. His uncle, awful person, bear stage 4 prostate cancer. I wish so much for you to beat this. I miss your laugh, your smile, our adventures. We were trying for a baby before this. He’s been in and out of the hospital all year. 4 brain surgeries. 2 shunt failures. Almost died from the first one. I want you back so much. We had our whole lives ahead of us he just got out of acute rehab after they tried to stop his steroids and he declined so much he couldn’t walk and for 2 days was awake but unresponsive and unable to talk. Now he needs a walker, depends, abs so much help. He Doesn’t even look the same. His mom hasn’t let me shower him since coming home this time and today she let me observe. My god it hit me like a ton of bricks. Seeing a face I barely recognize anymore. Just looking at him for that long. I’m that lighting. Every now and then I’m not terrible but today fuck. Every time he gets any kind of test done I’m on his my chart looking for results every few minutes. His mom doesn’t let him sleep in our bed anymore because I’m a heavy sleeper. It feels so empty without him there. He used to do this thing where we’d hold hands while we’re slept and when he came to bed he’d kiss my hand thinking I was sleeping. I don’t know what I’ll do when he’s gone. I barely survived losing my best friend I don’t think I’ll survive this. I really don’t. I don’t think his mom and brother will either. His mom thinks I’m emotionless and handling it too well. I’m not. I just don’t like to cry in front of people. I want to take this from him so bad. With my health issues I doubt I’ll see 40. He was healthy. A gym rat and took really good care of himself. He did everything right and still got this. Why couldn’t it at least have been something better treatable where they can actually remove the cancer. There’s only one fda approved medicine for it. One. 20% chance of working. He’s had proton radiation so now we’re wait a month to see if it worked. But his last scan showed active tumor. He’s scared. And I don’t know what to say to ease that fear.
This is my fiancés tumor. A grade 4 diffuse midline glioma. His next scan is next month. He finished proton in May. The report says there’s still some living tumor. What are the chances it’ll die? How do these scans look? I’ll put them in order of when he had them. The dr says they’re stable but idk. The first was where we started in February.
I have stage 3 fatty liver no scarring. Started the wegovy pill 2 months ago to try and help. Most of my weight is in my stomach making me look very pregnant when I’m not. Past 2 days my stomachs been killing me. I thought it was my ibs but it’s just not letting up. Normally my ibs it’ll hurt for a while. I go bathroom and it’s done. And my ibs hasn’t been bad since starting wegovy. My fiance is in the hospital and I’m staying there with him except to go to work. I really don’t want a er visit. I’m exhausted and low on pto would fatty liver do this? I also noticed when I stand my stomach feels really hard
My fiancés been in the hospital 3 weeks. I had to take out a cash advance for gas and food. I’m down to $15 to last through the week. His estimated discharge date is 8/4. When he comes home I also have no food in the house. Ran out of things to sell. I think I have enough gas but definitely not enough food
Hi my fiancé has a shunt. He’s been in the hospital 8 days and no one can figure out what’s wrong will probably go to in patient rehab. He has a programmable shunt and had a mri. They did the xray to see if it moved and it showed it didn’t but he started showing signs of shunt failure really quickly. The bump on his head, confusion, really fatigued. They did a ct which showed no hydrocephalus and then 28 hours after the mri they finally checked it with their machine and sure enough it moved from a 3 to a 4. He stopped talking a little before that and didn’t talk for 2 days. No one could tell us why. Now he’s able to talk in 2-3 word sentences but has about a 5-10 second delay which goes for everything he does. His left side is much weaker. I still think he had a small stroke and we brought it up to the dr who hasn’t done any follow up scans. I’m at a loss. This way a few days ago they reset the shunt. Could it have caused all this? His first shunt failure he was in a coma and was up and walking the halls a few days later. This time he’s not improving. He also has brain cancer. But the mri showed the tumor hasn’t grown much so I just don’t know.
Idk what to do. My fiancé has a grade 4 diffuse midline glioma it’s on his hypothalamus and he finished proton in May. Last eeek he had clots in his lungs and legs. Monday we noticed he was severely fatigued after stopping dex. His oncologist said to being him into the er and that it’s not from that. They of course admitted him again. Once his oncologist seen him he started him back on dex. He was getting better and supposed to go home yesterday. But then after the mri he had while here Tuesday the surgeon took 28 hours to reprogram his shunt. We were on the other side of
The hospital and because xray said it was at a 3 she didn’t bring anything with her. We told her you need the machine to read it that xray was wrong last time. She didn’t believe us. Sent us for a stat ct that took 6 hours to read. No hydrocephalus no bleeding. She finally comes back with the machine and it was ay a 4. He’s already had 2 shunt failures and is very sensitive to pressure changes. And started to decline like he was in shunt failure again before she got there. He has quit talking. Now he can’t talk , wont eat or drink , won’t take his pills. And if he’s awake he barely looks at you. We noticed to his left side is weaker. Both arm and leg. Now I’m thinking he might’ve had a minor stoke. No one knows what’s going on. His pupils are reactive. Right now the plan is to do a lumbar puncture to test for infection and see if it relieves some pressure. But he has to be off the eliquis for 2 days so he can’t get it done until Sunday. He hasn’t spoken since Tuesday night and it was very short and not always answering us. Then it stopped yesterday all together. Most of his meds are iv now. I can’t just watch and wait. I need answers. And because we’re not married no one’s telling me anything unless I’m there. And all the drs come while I’m at work. His mom is with him then but they just say I don’t know and he’s on observation. When he lays flat he holds his head. Something is wrong. I know it. I don’t know what and I don’t know what to do. Oncologist says the tumor has grown some but it’s probably from proton. I’ve seen his scans and it almost looks like it’s starting to go to the frontal lobe. I’m so scared we’re going to lose him
I’ve been getting them for 11 years. Been on eliquis most of that time. Now my fiancé has them in both lungs pretty bad too. He’s only 29. Crazy part is he didn’t complain of pain. He has cancer and has home health come out one a week. Didn’t like how tired he was and that his oxygen was borderline low. Not sure I’d its the cancer causing it or one of his meds. Hoping he doesn’t turn out to be a lifer as well
Long story short he’s in the er. Will probably get admitted as he usually does. You can see my post history to see what’s up with him. I’m so worried for him but then there’s the financial stress. If he gets admitted I have no gas and no money. So no money for food either. So basically I won’t be able to see him. I hate this so much
Seeing this makes it so much more real. This is my fiancés tumor. It’s a grade 4 diffuse midline glioma with the h3kz27 mutation. Next ones in August they said that one will really tell us if treatment is working. Does anyone know if these are actually holes in the tumor. The dr said they were but the MRIs report doesn’t mention it.
I just started today and was wondering when should I expect to notice any effects it has on me and any results like hunger suppression. My dr didn’t tell me very much. Also when is the best time to take it. Or does it matter?
Was hoping my doctor would get back to me today about starting on the lowest dose of the pill wegovy. I can’t afford the dosage increase since the price goes up and I’ll poor. I have stage 3 fatty liver. I got to do something. Before i spend part of my car payment on a months worth can I even stay on the lower dose and still have effects even if it’s slow ?
My finance has a grade 4 diffuse midline glioma. Just finished proton last month. Has been on Modeyso since the beginning. His follow up mri is the 18th. He’s had one heck of a go at it. Between 2 shunt failures and all the symptoms from the tumor, treatment, vision changes and the shunts failing. Well now he has diabetes insipidious. Was told it is either from the tumor growing or from proton. So scared it’s from the tumor growing. He’s doing much better with the meds for it and with now being on steroids. Idk the point of the post except to just get it out there
I have capital one. They use Discover network now. It was fine until Sunday it wouldn’t let me use express pay. 2 hours on the phone with Lyft and my bank for them to blame each other and was told that it would be on my weekly earnings today. But it’s not. It’s like stuck in limbo. And no one wants to help. I was on the phone with Lyft for a for today kept getting told call my bank and then was told I’d have to get another debit card which in can’t. Even told me to get one from my bank. It would still be Discover network. I tried to sign up for Lyft direct and I need to download their app. But I can’t because I owe Apple money. Escalated to a manager who is supposed to email me with a resolution. I just want my money. My debit card is maxed out in the negative at-100. My credit card is maxed. I need groceries And gas. I should be at home with my dying fiance but I can’t because I need to do this to get out of the negative and buy food. And now I can’t get it
My fiancés mom is going to take him there for a second opinion but if she likes them she’ll move the 2 of them there and I’ll probably never see him again. Do they even have any other treatment besides modeyso? He just finished proton therapy. And are they promising. I don’t want a phone call that he’s gone. I want to be able to be there to say goodbye. He’s declined a lot. He can barely walk now, has bladder issues at night, very confused at times, hard to wake up. Holds water in his mouth. And vision problems. But he also had 2 shunt failures so it’s hard to tell what is what at this point.
My fiance has been having a lot of pain in his back, hips and groin. He’s almost done with radiation. Last mri a couple months ago his spine will clear. How long will this last. It is very hard to get him up and down because of it
When your shunt failed and you went into a coma and were going brain dead. Sometimes I wish that would’ve been it for you. I love you so much and hearing you may never get back to where you were killed Me. That this will probably be as good as it gets. Plus if you died you would’ve have to go through cancer treatment. Sometimes I wish the cancer would just take over and do it already. You can barely walk, you’re having trouble eating and drinking. You can’t do anything by yourself anymore and you’re only 29. You’re having accidents at nighttime. You don’t smile anymore. You were the most loving life guy I knew. You were so active and we were always doing something. But now this. I hate seeing you like this
Today my fiance met with his surgeon to see how he’s recovering from the most recent shunt failure. One thing he said was he didn’t want to do the first surgery (the biopsy ) that they could’ve treated it sooner. (The tumor board was watching it fit a year) that they knew what it was Is this true or is he just trying to cover his butt from not putting in a programmable shunt when his old vp shunt failed?