Glioblastoma multiforme (GBM4) Brain Cancer 1

  • August 2020 part 1

    So a year since my initial symptoms and so far things had been going as well as they could. A good result in both the Feb and May scans only showed a small residual sign of the tumour, unfortunately that was not the case in the August scan. After finishing 6 rounds of TMZ I felt pretty well, I had been exercising daily got my weight under control, my co-ordination and balance had improved and generally things were going…

    • 15 Aug 2020
  • July 2020

    After having the twitch in my foot my steroids were put back up to 1mg a day which prevented any more issues. Once the final round of chemotherapy was out of the way the consultant wanted to see if we start lowering it back down. The dosage went to 0.5mg for a week without any issues and then down to 0.5mg every other day. Unfortunately, within a couple of days I experienced another twitching episode in my foot, so the…

    • 4 Aug 2020
  • June 2020

    So finished 5th round of chemo fine, only one more round to go! Went to a local hospital for my bloods this time which was much easier than travelling all the way into the city. My potassium was still low so will have to work on that this month.

    I’d managed to drop my steroids down to 0.5mg a day and after finishing the 5th round of chemo went down to a tablet every other day and then a week later I came off them…

    • 1 Jul 2020
  • May 2020

    4th month of chemo and managed to get through it mostly ok. No sickness or even nausea this time and still managed to eat fine but it did wipe me out and the last few days and good couple days afterwards felt like I hadn’t slept! I suppose it could be a lot worse though so I should grateful for that at least. One other thing that I’ve noticed is that get terrible constipation while taking the tablets, not sure if that…

    • 29 May 2020
  • April 2020

    This is now my 9th entry and when reading through other people’s stories, I have to reflect and count myself as lucky to have made it this far. Though it also highlights to me on a 12-14 month prognosis that I’m now someway into that timeframe and that brings a whole new level of scary with it.

    So, at the start of April and a trip to the hospital for 3rd round of chemo and 4th and last round of immunotherapy…

    • 3 May 2020
  • March 2020

    Second round of chemotherapy and up to the 100% dose of 400mg temozolomide alongside the 3rd round of immunotherapy at the start of the month. Bloods came back all good and rash and itching have cleared up so treatment went ahead as planned. Annoyingly the cannula caused issues on this round of immunotherapy, first one went in and couldn’t get any blood and the 2nd one had to be wriggled in. On top of that when…

    • 4 Apr 2020
  • February 2020

    2nd immunotherapy infusion and 1st round of 6 months 5/28 temolozomide chemotherapy postponed a week due to a cold. Little children are walking viral incubators!

    Got through the 1st round of chemotherapy ok, all I can say is that it was like being on a weeklong clubbing bender, where each day you feel worse but still go again, I had no sickness at least and was able to keep on eating.

    Unfortunately, this time I’ve suffered…

    • 3 Apr 2020
  • January 2020

    Radiotherapy finished New Years Eve as planned, in the first few weeks of January other than an increase in swelling (which felt like my head was rather full, similar to suffering with a bad bout of hay fever) generally coped ok with the end of the treatment. Did also require an afternoon nap most days to get through to the evening though.

    Signed up to and was accepted onto an Immunotherapy trial and had my first dose…

    • 1 Apr 2020
  • December 2019

    In the 3rd week of radiotherapy I come down with a cold which made it a tough week to endure and then in the 4th week most of my hair fell out literally in one wash. I expected it to slowly come out and thin but wasn’t quite expecting how rapidly I went from a full head of hair to friar tuck look! Shaved the rest of my head (which apparently, I wasn’t meant to do as it can affect the fitting of the radiotherapy mask …

    • 26 Mar 2020
  • November 2019

    Start of November I had a follow up scan and it showed very little growth since the surgery. My scar had healed well and I was fine to begin a 5 days a week, 6-week course of intensive radio/chemotherapy. 1st week was scheduled in the middle of November which would take me up to New Years Eve. Due to my age and health I would be getting the highest and longest course available.

    Went into Guy’s Hospital to have my Radiotherapy…

    • 26 Mar 2020
  • October 2019

    The MRI scan revealed that the tumour had increased 4-fold since the previous scan in August and that it was highly likely to be a GBM4 malignant cancer and that the prognosis for this type of cancer was an average 12-14 months. We were absolutely devastated and shocked, neither I or my partner were ready in any way to hear that news and it caught us completely off-guard.

    At this point we went into panic mode, we had…

    • 25 Mar 2020
  • September 2019

    We were still in shock having left the hospital with very little information to go on but after googling the various brain tumour types and treatments, a low-grade glioma didn’t seem like the worst possible diagnosis, the average survival duration seemed to be in the 10+ years, which while not great wasn’t terrible, all things considered. It was likely to require surgery to treat which seemed quite daunting, but the location…

    • 25 Mar 2020
  • August 2019

    36yr old male, partner and 2 young daughters, working in the City as a Finance Director.

    Symptoms began in the middle of August, I was at work and experienced a twitch in my right hand while using a mouse that lasted for about 60 seconds. I had previously suffered a shoulder injury several years ago and put it down to that it was playing up and it must be a pinched nerve.

    A week later while walking home I had another…

    • 25 Mar 2020