Ocrevus, Hope, and a Suicide Postponed
Several months ago, I wrote a column about Andrew Barclay.
Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years.
Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled to end his own life, with help, on June 15 at a suicide clinic in Switzerland. But he changed his mind.
Campbell has been writing about his MS for the Sunday Herald in Glasgow since late April. (He’s also the paper’s “Beer of the Week” writer.) He describes himself as “a man on death row,” and on May 20, his MS article began, “Well, unfortunately I am still alive.”
Campbell has mobility problems, and living in a second-floor flat has been tough for him. He says he’s had no support in getting ground-floor accommodations. He complains that he was recently discharged from a hospital without the possibility of receiving home care. He has no caregivers and exists on microwave dinners.
Campbell had hoped that a stem cell transplant would allow him to live a life that was worth living, but then his neurologist told him that he thought HSCT would be too risky. So, at age 56, Campbell made plans to die.
But, then came a glimmer of hope. In a column he wrote two days after he had been planning to die, Campbell explained that a former police sergeant named Rona Tynan gave him a reason to live, at least a little while longer.
“Rona, who also has multiple sclerosis, was of the opinion that I should not commit suicide until having tried every other possible avenue – including soon-to-be-available multiple sclerosis treatments for folk like me with primary progressive MS. Rona persuaded me, and I agreed,” Campbell wrote.
That treatment is the disease-modifying drug ocrelizumab, sold in the U.S. under the brand name Ocrevus. The U.S. Food and Drug Administration approved it a few months ago, and it’s the only drug approved to treat progressive MS. Some neurologists refer to it as “stem-cell lite” because of the way it attacks the rogue B-cells that are believed to cause MS. Ocrelizumab is expected to be available in Scotland later this year.
“For the first time since multiple sclerosis was identified during a post-mortem 149 years ago, there now seems to be a real hope of lasting risk-free treatment for multiple sclerosis sufferers within the next few years,” Campbell writes. “The timing could not have been more perfect — although there was a fear, of course, that the developments had just come too late for me. But I wanted to remain as optimistic as possible.”
Colin Campbell’s hope, now, is that Ocrevus will halt the progression of his MS and avoid a future that he pictures as becoming bedridden, needing help to eat and bathe, and using a catheter. He’s not sure how much hope he realistically should have, but he ends his June 17 column with: “Wish me well.”
That, we certainly do.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Chantal Vezeau
Hi I'm 46years old, I've had MS since I was 25 years old my baby was 2 years old and my twins were 7 years old, I have been having difficulty accepting my desease, sometime I wish I was gone that way I wouldn't bother anyone. I'm having more and more problem with walking, I fall every day, my back won't hold me up. I hate my life. My husband tries so hard.
Ed Tobias
Dear Chantal,
I'm so sorry to hear how hard things have been for you. I really don't think that you're a bother to your husband and children, no matter how much help that you need from them. That's what love is all about.
Have you looked for an MS support group near where you live in order to get some additional help? Have you looked at some of the Facebook MS groups, such as "We're Not Drunk, We Have MS"? There's lots of support there, too.
I won't assume to know how you feel, but I can say that there are a lot of people who will try to help, if that's what you want.
Ed
Chantal Vezeau
Thank you for replying and yes we do have a group for ms here, but I get more depressed to be there and yes I do have people on Facebook who have ms. I have been in my cacoon, I will start talking to people on Facebook thanks again.
Roland Matthews
I am totally disillusioned with neurologists. After 25 years with MS and countless trips to neurologists internationally I ended being bed
ridden up with no solution's. In March I got AHSC in Moscow. I am now back walking slowly and looking forward to stand-up paddle boarding this summer. What is even worst is that my highly regarded neurologist did not believe in stem cells as a solution and even after her other patients had successful treatments she still did not recommend it. Whats more is 14 years ago she said the likely solution is to wipe out the faulty immune system and replace it with a new one, i.e. AHSC. Neurologists are paid for by drug companies and patents that never retire from the drugs. A great business model. I am now off the drugs. It is a very risky procedure and only patent can make the final decision. I will report more in the next few months. Visit my www.givealittle.co.nz page for my full treatment story and now well underway recovery story.
AK
I have had PPMS for 15 years. My neurologist has done NOTHING except an MRI every year. What a waste of time and money.
Wont advocate ocrevus, just ges me to pay his wife (a physio) to do useless physio. For me it is fatigue and depression that are killing me emotionally. Just wish I could not wake up one day (But that would mean I had actually gone to sleep, wouldn't it
Ed Tobias
Hi AK,
I'm sorry to hear that. There are so many disease-modifying treatments available that it seems to me your neuro should be able to find one that's right for you.
Ed
Amanda Harman
Chantal, please do not ever feel like you are a burden to your family. As the daughter of a Mother with MS,I can tell you that you most certainly are not a bother to your loved ones. They probably feel helpless just like I do, and would do absolutely anything to make things easier for you. Sincerely, Amanda
James
I’m 55 single father with my mother n friends help. I have serious physical problems, can’t walk,etc. other issues. I have a 10year old son n 5 year old daughter. I struggle with not being able to physically do anything.God has a plan for us. I try to stay focused on what I can do. Just started Ocrevus two weeks ago and I’m not improving. I’m worse but hopefully I’ll get better or stay the same. Patiently waiting ?
Meredith
Just had my first infusion for ocrevus. Please hold on,there is hope the way.
Katherine
Meredith, I just got diagnosed and am in disbelief! I am suppose to start Ocrevus too but am terrified as I take no medications currently- not even vitamins. How are you feeling after your first dose if I may ask? Share only if you want to. I am just trying to come to terms with all of this. Very surreal.
Ed Tobias
Hi Katherine,
Let me suggest, as I just suggested to someone else who left a comment, that you check out the Ocrevus group on Facebook. A lot of Ocrevus patients post their experiences there: https://www.facebook.com/groups/653313891487070/
Good luck,
Ed
Tanya-Marie
My first infusion for ocrevus is scheduled for August 8th. I'm on the washout from Gileyna now. That's for 2 months I am really optimistic about ocrevus. This is getting harder daily.
Ed Tobias
Good luck, Tanya-Marie.
Ed
Karen Scarano
I stopped Gilenya one year ago. With no DMD during the year. (and fortunately no changes on my MRI). Walking continues to slowly get more difficult though. I'll be starting ocrevus in September. I am mildly hopeful. ?
Amy Rogers
I start my first infusion of Ocrevus tomorrow and am excited. Have had the wash-out of Tysabri. So glad to be done with that, didn't do well on it at all. Looking forward to some good results. Hope everyone does well on this new amazing drug....Amy
William
I usually don't make comments but I have too here. My wife was diagnosed with MS in 2000. like you she has huge struggles, and like you she feels she is a bother. LET ME TELL ALL OF YOU THAT YOU ARE A BLESSING TO SOMEONE!!! You may not know how many people you touch in this world but I guarantee "YOU MAKE A DIFFERENCE" for others. I will pray for you!
Kara
Thank you for writing these kind words. I often feel like a bother and a burden. My husband and children are my best support system. They always say, "Don't worry about it, Mom. We don't care if you walk slow." They have never acted embarrassed of me and they are the reason I keep going. This disease does NOT define who we are! Keep on fighting. The number of treatments have multiplied since I was diagnosed 24 years ago. Prayers for all who have MS and their families.
Diana Kirschman
Beautifully written! Thank you!
Ken
As a PPMS victim, there is no doubt that this disease sucks. Please look at the positive that exists in your life versus what you've lost. I know it's hard, but it's there. I'm not sure who said that it is better to have loved and lost than never to have loved at all was wrong. However, it is what it is, so we have to adjust no matter how unfair or hard.
Keri Zwerner
I am, at this moment, receiving my 8th infusion of Ocrevus. I was in the clinical trial.
PLEASE DONT GIVE IN YET CHANTAL. Try Ocrevus. IT IS A MIRACLE and is an infusion every 5 to 6 months, so it will not interfere with your life...and you can have a life.
Keri
Lisa
Hi Keri
Do you have nausea from Ocrevus? I had my first 2 infusions 5/16 and 5/31. Still have nausea on and off. Next full infusion is in November. Has helped my walking very much
Lisa
Jennifer
Ocrevus has made a difference for me! We had company coming last month...the same day as the 2nd of the first 2 1/2 dose infusions. I thought my husband was going to come out of his skin! "You just chased her around the whole kitchen tickling her!" Our fiends 2yr old daughter. I have PPMS and have not driven in over a year and have been using a cane for that long as well. My neurologist was excited when I saw him a couple days ago. He told me that when seeing someone progress as quickly with symptoms as bad as mine you rarely if ever see improvementI, now carry the cane and only use it when I am tired...shopping! I am very hopeful! Its been a long time since I could say that.
Ed Tobias
Hi Jennifer,
I'm glad that Ocrevus has done so well for you. Maybe you'll get back into that "bumper boat" one of these days!
Ed
Eric Woodard
I believe that their is a cure for MS but the drug companies are trying to treat the illness and not cure it how long have we heard they are close to a cure and then you don't hear anything else about it are the drug companies stopping the development of these drugs
Pamela Frost
Just had my first Ocrevus infusion. Feel great. My second one is July 4. Feeling good and looking forward to it. Ocrevus is a game changer. Also, i take 3000 mg of fish oil daily. Helps me a lot. Don't give up. Stay strong. It will get better. HUGS!
Marissa
My heart goes out to Mr. Campbell. My wish is that his follow up story is "Ocrevus, Hope, and a Suicide Prevented"!
I hope the Ocrevus works for Mr. Campbell, but even more importantly I hope that Mr.Campbell remains determined to keep giving things a go even if the Ocrevus doesn't work.
I understand and don't discount his dispair. It's horrible battling the symptoms of this disease, and believe me, I certainly have thought about ending it all myself.
This article made me think of something that happened to me last week. I was in the waiting room at my prosthetist, feeling pretty bad about the downward path to immobility that I have been following, when a patient came to the door to leave the office. She was in a wheelchair and had no legs from the upper thighs down. I got up to hold the door for her, which she appreciated. I'm always the one that everyone jumps up to hold the door for. It sure made me feel better to know I still could help other people in this world too!
I want Mr. Campbell to know he is really needed here in this world, no matter what the outcome of his Ocrevus trial may be. He should know that by not giving up, he is giving me some hope too, as did you, Ed, for writing this article.
Ed Tobias
Thanks for your comments, Marissa.
I hope that Mr. Campbell reads what you and others have written and carries the hope of your words with him. In all honesty, however, I don't know if he's even aware that I've written about him or knows about this website.
We should all try to hold doors open for each other. Wouldn't that make it a better world?
Ed
Shannon
We all have challenges i myself have ppms im not a quiter never have been and i refuse to start now i like to think its the polish in me. I just take the blows day by. Day i am not giving in to this i just isnt me i will fight to the end plus0 i have a great sense of humor. Thank god for that i have alot to live for 4 dogs and my new hobby raising 12 polish chickens.yes life can be unfair and a struggle i have a great support in my soon to be husband
Yes im stuck in a wheelchair but you can look at this disease like this you always have up fr8nt parking!
Shannon
Ed Tobias
I like your attitude, Shannon. Thanks for taking the time to comment.
Ed
Gary W.
I also am a PPMSER I had my first ocrevus infusion on 6-7-17 and my second on 6-22-17 nothing to report yet wondering how long it takes for the other people with the good results before they started to notice changes for the good? I was diagnosed in 2007 and have been slowly going the wrong way[foot drop, balance issues, fatigue, numbness in the right hand]after spending 44000 on the first two infusions I am hoping for some relief, one good thing I have had no side effects to report any input would be greatly appreciated thanks everyone Gary W.
Ed Tobias
Hi Gary,
You might be interested in joining the Ocrevus group on Facebook. There are a lot of Ocrevus patients there who share their experiences with the drug: https://www.facebook.com/groups/653313891487070/
Good luck,
Ed
Kevin
Hey Keri Zwerner, coincidently, I just got home from my 7th Infusion today. I love it & can't even tell I got it. My symptoms have NOT increased since Ocrevus entered my life! I'm a walking example of it's success. I hope everyone else like me (60 y/o Male with PPMS) is having a positive experience with it.