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MJLSK's Recent CancerCompass Activity

  • MJLSK has replied to a post on the message board

    I am very sorry for your loss. I hope you will find your inner strength to get through this horrible time. My husband passed away 6 months and 5 days ago.. In many ways it still feels like he was here just yesterday, but in other ways I feel like I haven't seen him for years. All I've got now is our 19 month old daughter and she is my strength. GBM is cruel and we all deserve happiness in our lives after the hell we ...

    September 24 at 9:58 AM view post
    • MJLSK has replied to a post on the message board

      My husband had gliadel during his second surgery. For him they probably didn't do much good. He developed a hydrocephalus right after that surgery and was recovering much worse than after his first surgery without gliadel.. But on the other hand I know that they help some people.. What you need to keep in mind is that if you are looking at any clinical trial, gliadel will exclude you from most if not all of them. I...

      July 09 at 9:46 AM view post
      • MJLSK has replied to a post on the message board

        Hello, I just wanted you to know that the way you feel is perfectly normal and you shouldn't be angry with yourself at any point.. It is extremely hard to be going through what you are going through at the moment.. And I understand it perfectly well. My husband was diagnosed when I was pregnant with our first baby.. I was looking after him and the baby all the time and I know exactly what you mean and how you fee...

        May 06 at 8:59 PM view post
        • MJLSK has created a new message board discussion

          My wonderful and loving husband passed away on the 19th March 2013 about 18 months from the moment his first symptoms appeared and 15 months from the date of his first surgery. He was fighting really hard for us and in some ways he managed to beat this cancer.. It was not the GBM that killed him but an unexpected and severe pneumonia which his weakened immune system could not fight off. We went for hi...

          April 10, 2013 view discussion
          • MJLSK has replied to a post on the message board

            I'm glad that I've helped a bit. I know that whatever I or whoever else says it doesn't change your situation but at least you know that there are more of us who kow exactly how it feels.. In terms of dexamethasone, yes it is a mood changer. And as much as it is a wonder drug in terms of relieving many symptoms (brain swelling, weakness, speech, general wellbeing etc) it has a lot of side effects. This is why it i...

            March 06, 2013 view post
            • MJLSK has replied to a post on the message board

              Hello, So sorry that you had to join this "club"... I hardly ever write on here but after reading your post I feel obliged to respond. I know exactly how you feel and in fact everyone on here does. Maybe the only difference is that most of the people affected by the disease are older than us. I am now almost 28 but I was 26 when my husband was diagnosed. And to make things worse I was 5 months pregnant at t...

              March 05, 2013 view post
              • MJLSK has replied to a post on the message board

                I can relate to your post so much.. I have recently opened a new thread, please look it up dexamethasone = nightmare.. I have been my husbands caregiver for a little over a year now. It all started when I was pregnant with our first baby. She is now nearly 10 months and I am a nerve wreck at the age of 27. My fascinating life with the best husband on this planet got ruined in a blink of an eye. Everyone always adm...

                December 16, 2012 view post
                • MJLSK has replied to a post on the message board

                  I can relate to your post so much.. I have recently opened a new thread, please look it up dexamethasone = nightmare.. I have been my husbands caregiver for a little over a year now. It all started when I was pregnant with our first baby. She is now nearly 10 months and I am a nerve wreck at the age of 27. My fascinating life with the best husband on this planet got ruined in a blink of an eye. Everyone always adm...

                  December 16, 2012 view post
                  • MJLSK has created a new message board discussion

                    My husband has been on a high dose of steroids for 3 months now.. (anywhere between 24 and 12mg per day!) At the moment he is on 15mg and his speech is again much worse. He is having extreme difficulty putting a logical sentence together and is confusing words. Basically we cant have a normal conversation anymore. Putting the dose up a little would probably seem reasonable as when he was on 17mg the problem was much ...

                    December 12, 2012 view discussion
                    • MJLSK has replied to a post on the message board

                      Hi all, I have posted on here a while ago asking about salvestrols and my husband has been taking them for 3 months now. (6000 points per day as per Dr Potter's advice). Unfortunately his tumour has regrown while on salvestrols and he had another surgery on Monday, 9th of July. Therefore salvestrols are ineffective for us.. I had a lot of hope in them :(

                      July 12, 2012 view post
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                      About MJLSK

                      Caregiver
                      Brain Cancer

                      July 2011 - Me and my husband got the best news ever! Expecting our first baby! Due to be born in February 2012.

                      September 2011 - My husband is suffering from what seems like a never ending headache

                      October 2011 - Headaches getting unbearable, brain bleeding found at the end of the month

                      December 2011 - repeat MRI and angiogram reveal a big left frontal lobe GBM tumour, our world just fell apart in a second :(

                      December 2011 - 1st surgery

                      January - February 2012 - daily radiotherapy and temozolomide

                      February 2012 - our daughter is born.. such a bitter sweet moment :(

                      January - May 2012 -clinical trial IMA950 (vaccine)

                      July 2012 - tumour progression, 2nd surgery

                      August 2012 - hydrocephalus, shunts put in (2 surgeries day by day as the first one didn't work)

                      September 2012 - first ever grand mal seizure, husband's cognition declining, losing his speech, almost unable to read or write anymore

                      October - November 2012 - SPMF treatment in India

                      November - December 2012 - tumour stable, husband seems a little better however there are many behavioural changes and extreme difficulty speaking

                      December 2012 - husband is declining, decision is made to start Avastin and CCNU

                      January - March 2013 - Avastin and CCNU, husband is deteriorating but still fully mobile

                      March 2013 - breathing difficulties, husband admitted to hospital on the 18th March, severe pneumonia diagnosed.

                      19th March 2013 - my husband passed away. I was holding him in my arms till the end.

                      <3 Love you forever honey <3

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