Medulloblastoma - not responding to treatment

[C152]

Does anyone have any experience with childhood medulloblastoma (Grade 4, group 3) and outcomes?

My DS has had surgery to remove the tumour (which had already spread throughout his brain and spine when diagnosed), 2 rounds of intensive chemo, 6 weeks of radiotherapy and now another 3 rounds of chemo. Due to the constant strikes, he had no MRI for 6 months. He's just had an MRI and it shows absolutely no change to his cancer. (i.e. it hasn't spread further, but it hasn't shrunk at all either.) Our meeting with the consultant has been cancelled and pushed to a few months from now.

Does this mean he is chemo resistant? He has 1 more round of chemo to go (which I feel is pointless at this stage, as it obviously won't do anything other than cause more toxic damage), but what happens next? Will they force him to keep having more chemo after this 'final' round?

I want to focus on him getting the most out of life, however long it is, but I also want a bit of a guide as to how long that will be, which his consultant has always refused to give.

Hi this was on active and I've just read through. I'm so sorry that your children and families are living through this (and have lost a child for one poster).
I was reading with such familiarity although our experience was mental health at the severe (hospitalised) end and also endocrinology. The lack of information, care, the random gratitude for people who go above and beyond in a system where others seem to clock on/clock off and your kid is just another appointment.
I really have a lot of good wishes for you all, and I hope things improve in 2024.

Thanks @Newyearnamechangehere I'm sorry you've experienced this as well. I really think it's endemic within the NHS. I hope things go well for you and your family this year too.

@ScaredOncologyMum The drug is called Levothyroxine.

I've taken 100mg of levo for as long as I can remember. My hypothyroidism is genetic, but I've never had any side effects.

That is really good to know, @chatenoire . Thank you so much for sharing. I know that everyone's reaction to medication is unique, but it is nonetheless comforting to know that other people take this without any issues.

I don't want to intrude on this discussion as you have such a lot on. But I wanted to say don't worry about the levothyroxine. My son was born with a non functioning thyroid and has been taking this drug since birth. The rules around when to take it are not so strict, moreso it's to be consistent as it's mainly to do with absorption. Wishing you and everyone else much love and luck.

I also take this with no side effects (acquired thyroid issues)

My mum was on Levothyroxine for years. As she had dementia and I was her main carer I gave her the tablet every day. I was never told about potential side effects and she certainly didn't have any. HTH

Thank you all for commenting on the levothyroxine. The Drs have said taking this will reduce DS's risk of thyroid cancer, so if he has to take it, I want to make sure he's getting the most benefit and we don't reduce the effect by eating things that might impact this.

For those of you that have taken it (or who have children who take it), is consistency around timing the really critical point? What have you found around what you can eat/drink? I've been waiting 1 hour after DS takes if before he can have anything at all to eat and 4 hours after taking it to let DS have any dairy. Is this what you all do?

@C152 I just wanted to send you my love and support. My son had GBM in his 20s, his treatment was gruelling and he was determined to have a 'normal' life for as long as possible. I am appalled by your consultant and the team. Our surgeon, oncologist, and nurse were all excellent at replying to our questions, getting back to us within 24 hours on anything we asked, and worked hard to ensure any medication side effects were treated. They also got back to us straight after each MDT team meeting with an update on how the review of his care had gone,which was helpful. Does no one contact you after MDT meetings? I would request a new oncology nurse to be your contact-we had a card with a 24 hour number on and she replied to any messages within hours. They were kind and sympathetic although we all knew the chemo wouldn't hold it off for long. It's a terrible journey to be on. Your oncology team sound almost obstructive rather than supportive. Is there someone you could write to outlining the problems and misery their lack of communication is causing?

I don't think the timing is that important. At least in my case my endocrinologist has told me that it gets stored and eventually used. So for example if I know I'll be drinking coffee or juice first thing in the morning (before I take my pill) I'll take two the next day.

Thank you @RobinStrike I'm so sorry to hear about your son.

No, we've never heard a peep from anyone after MDTs and there's never any feedback from what the wider disciplines who are allegedly involved think about anything. There don't seem to be any meeting notes kept and the consultant never remembers what was said. When I have asked, she says things like, oh I know we discussed that in the MDT...what did we say? Hmm...I'll get back to you. And never does. I've requested all medical records and there are no notes in there either.

I think the only people to write to are PALS, but I don't have the energy and there is part of me that doesn't want to relive all of it because I get furious all over again. One day I will write it down and send it to whichever useless twit is then PM and the Health Minister. And although earlier I made a crack about wishing there was a book to guide people on the crap that you have to go through, I really do think we should all pool in our knowledge in a special guide. Even when you've had a good experience with medical professionals, patients and parents know far more about the reality of medicines, side effects and illnesses.

@C152 I'm sorry to hear what an awful time you are having. I can add to the reassurance that taking levothyroxine is fine. I've been on it for years with no side effects. It's simply a way of replacing hormone that your body is no longer taking, it's not a dangerous drug.

I take mine at night as it was the best way to avoid caffeine, this was the only thing I was told to avoid.

I have looked in the BNF (British National Formulary) see here bnf.nice.org.uk/interactions/levothyroxine/ and it does say dairy and some other things can affect absorption.

As a Doctor I can tell you that most people who take levothyroxine are not modifying their food intake in the way that you suggest.

If you have food after and it affects absorption then nothing dangerous will happen. It just means a higher dose of levothyroxine may be required. His levels should be monitored.

Hope that helps.

Im vegan so don't worry too much tbh. I try to remember first thing with water (kept by bed) but usually end up having tea and soy milk within an hour.

Levothyroxine isn't a drug, it's a replacement hormone, i.e. similar to a diabetic taking insulin (but not as complicated).

Thank you @helpmum2003 . Yes, that is helpful; particularly the link.

I may seem obsessive about the things that effect the drug's usefulness, but they really rammed home the possibility of thyroid cancer which is, frankly, terrifying.

Hi @CC152

Firstly, I just want to say it'd wonderful how well your DS is doing now, though I fully understand the struggles he must still be having.

I'm afraid I don't have a happy ending so hope you don't mind me replying to your post.

My wonderful DS suffered with random sickness and headaches throughout December 2016. GP treated him for overflow diarrhoea on more than one occasion, even sent him to hospital for an enema at one point.

Luckily on one of our many trips to hospital one of the consultants noticed DS was a little wobbly on his feet and so organised a CT scan. DS had his CT scan on 3rd January 2017 and was diagnosed with a brain tumour aged 9.

On 5th January 2017 he had surgery to remove the tumour. We were told they were 99.99% sure it had all been removed.

A couple of weeks later we had the biopsy results. He had Grade 4 medulloblastoma with mets in his spinal fluid.

DS underwent daily high dose radiotherapy for 6 weeks throughout March and April 2017.

June 2017 he started the first of four rounds of high dose chemotherapy. He turned 10 in hospital ill during his last round of chemo in August 2017.

Follow up scans and spinal fluid all clear. He was officially in remission!

DS got to ring the end of treatment bell in September 2017.

8th December 2017 we held a huge end of treatment party for family and friends.

16th December 2017 he had an MRI scan as he had been a bit more wobbly than usual. It was back. Nothing could be done.

17 days later on 2nd January 2018, my beautiful brave boy passed away at home in my bed surrounded by his family.

I really had no idea how serious Grade 4 cancer is and that his sub-type had very low survival rates. I wish the doctors and nurses had been far more open and honest with me as I would have done so many things differently.

Yesterday was his 6 year anniversary of his passing.

Sam - forever 10 💙💔

@MuddlingThroughLife so sorry to hear about your Sam.
That timeline is terrifying. I am on the other active thread in here (terminal) can I PM you please?

Of course you can.

@MuddlingThroughLife I am so sorry to hear about your lovely Sam.

The timeline you describe is the constant fear that never leaves me.

Thank you for sharing a little of what happened. I wish there were more than empty words to offer our support to you. X

DS is back in hospital. I posted a little on another recent thread, but don't want to end up taking it over with my crap. Mentally, I don't think he will take another long hospital stay. After over a week in hospital, he looks worse than when he went in. Dark circles under his eyes, misery etched on his face, new scars and pain from multiple failed cannulas, more surgery (central line), a lumbar puncture which, according to every single Dr, "doesn't hurt" (for any Drs or nurses who may read this, for the love of god, I don't know what they teach you in medical school, but stop fucking saying this horrendous shit doesn't hurt. You do far more harm than good and you lose trust instantly) terror from the total dietician harassing us day and night; unable to sleep because of constant crying that he wants to go home and he says 24/7 how much he hates me for taking him back there. He's physically making himself worse because of how unhappy he is. And medical people are so pro intervention of every tiny thing that they never recognise that they are the ones that cause a viscious spiral of disaster. Sometimes, doing nothing is the best thing.

Hi @C152 I'm so sorry you are back in hospital. It's terrifying and exhausting watching your child so distressed.

I remember a young doctor coming in and telling me how excited he was to get my son's case as it would be good experience for him. I nearly took him by the throat - I took him outside my boys room and told him my son may just be a case to him but he was my son, my flesh and blood, who was desperately desperately poorly and if he ever spoke about my son as a case I would make sure he never got to speak to either one of us again. I reminded him that I was a vulnerable parent in pain watching my son.

I remember speaking to the palliative care nurse and asking would I know when enough was enough. He told me I would know and the Drs would listen to me. No parent should have to watch their child suffer so and have to even think let alone make these decisions. I hope you and your DS are a long long way off those decisions.

Watching a child suffer with a brain tumour is inexplicably cruel. At such a time you and your child should be shown nothing but compassion, kindness and a gentle honesty.

I'm so sorry that your DS is taking his anger out on you. It's understandable but so painful for you. He knows you are trying to do only the best for him. He has nowhere else for the anger to be directed at. He loves you.

I hope you can get your DS home where he would rather be.

If you ever want to speak to another parent who has been through similar I'd be happy to chat with you. It's a lonely terrifying journey for everyone. My thoughts are with you and I'm sending you so much love and hope that your DS gets home soon.

So sorry to read this. Haven’t seen any other posts so apologies if I missed something. What is he in hospital for? Symptoms/ infection?
What is the plan? If you don’t know, can you request a meeting with the consultant and CNS to find out? If it isn’t intended to treat the cancer then can you get the palliative team involved? Ours is called ‘pain team’ but they do other things too.
Have you got supplies/ stuff for hospital? I know it is hard being in long term - do you get fed at GOSH?
keep posting and apologies for radio silence have been less active on here, been a busy period here too.

I can't believe how insensitive that Dr was to you @minmooch That's the trouble with those who are more interested in the science than the people. Effective communication should be a core part of every year of medical study.

I'm so weary and sad. Of course I undestand why he hates me. I know he loves me too. But it's still so awful to see how angry he is at me.

He started waking up crying in pain from headaches at night. It was very different to just before he was diagnosed though. It was only once a night and it was never in the morning; there was no vomiting or any other symptoms. He'd had a cold and still had a runny nose, so at first I thought it was a sinus headache. But when he kept getting them every night for a few nights, and then started to just want to lie on the sofa during the day, I worried it was something worse and brought him to the local hospital.

It turns out he does have bad sinusitis, but on the first day in hospital he developed chicken pox. (Hosp didn't believe me and said lots of viruses cause spots. After a few days they did a swab and what do you know, it confirmed chicken pox.) Because they didn't know whether he also had an infection (for nearly a week he had a temp of 39 degrees or just over - nothing would bring it down) on top of the sinusitis, they put him on 3 different types of antibiotics and started him on antiviral medicine. Then his double vision came back, he started seeing things, had horrific nightmares, diarrhea, vomiting, stomach cramps. He had a CT scan and an MRI, which is how they confirmed the sinusitis. Thank god there doesn't seem to be anything more sinister happening brain-wise at the moment. Although for a week they thought he had viral encephalitis, which was worrying. Also, the anti-viral meds caused stage 3 renal failure, which was even more worrying. Basically, it's been a shitty 2 weeks.

Since none of the cultures or bloods have shown any other type of infection, he's now off the antibiotics, but is still on the IV anti viral medication. He's also hooked up to a saline drip 24/7, to help his kidneys flush out the medication. Fortunately, his kidneys have improved and the readings are back to normal.

I feel bad bitching, as I know things are very bad for you right now. If it helps, feel free to talk on here. Complaining certainly makes me feel better!