My Son's Medulloblastoma Tumour

Depending on his eligibility to go abroad, proton therapy has fewer side effects for medulloblastomas. Ask your consultant. I've just had successful treatment of radio and a bit of chemo and felt foggy for months but recovering. All medulloblastomas are grade 4 by their nature, I believe. Mine was inoperable, which gives a worse prognosis than when it's removed but I have had three all clear scans since June and I have just been told I only need annual ones now. I had an 80% multiplication index when it was found which is superhigh but remember that the more rapidly growing the tumour the more sensitive to radio and chemo's effectiveness, which is great. I think children have better prognoses, too, but here I am in total remission with some balance, memory  and peripheral neuropathy issues that are improving monthly.

Good luck!

Hug, L

Also, I had 7 weeks of 45 min radiotherapy sessions per day, the highest level, and am ok now, 10 months on. With children, they will always go for minimum effective amounts. Try googling success stories for children with medulloblastoma too, as I can only speak as an adult (43). 

Good morning Huw,

My heart goes out to you and your family.

I can't comment on your son's situation but I saw your posting time 1.09 am and felt for you as I am awake during most nights worrying about my son. He has a different type, has had four operations and full on aggressive radiotherapy and chemotherapy from Sept 2016-Sept 2017 and he was so ill with it I thought we would never get him back. But little by little, he's getting there, working most days, and sleeping a lot and now eating again, only small meals, but definitely building up muscle and sense of humour. His scans all show 'stable' after all he's been through I wished his glioblastoma grade 3 could have shrunk a bit but stable is better than the other thing. He has a wife and 4 children

What I am trying to say is take the treatment and wait patiently and include everyone in your circle who loves him. Good luck

Braveson

Hi limasierra

Thanks very much for replying to my post.

First of all, I'm so glad that the outcome of your tumour treatment has been good.  I sincerely wish you all the best for the future.

My son Sam is now at the stage where he is recovering well from the operation to remove the lump from his cerebellum.  His appetite is huge and he's enjoying being able to play on the hospital''s x box!

The surgeon was abe to remove 99.9% of the lump, saying that it "went perfectly and couldn't have gone any better" and that "all the subsequent MRI scans carried out while still under the same anaesthetic were completely clear".

Since then, we've received the info from oncology, about it being a "grade 4". That did alarm us, leaving us wondering at what rate that little bit left in Sam''s head would grow.

He's had his lumbar puncture and is due to have his stem cells harvested on Wednesday, in preparation for his eventual chemo.  But he'll start out with 6 weeks of radiotherapy, followed by 42 weeks of the chemo. From what I can understand, the nature of the therapy will depend on the both tumour grading/analysis opinion results.

I'm finding that I'm going over the same things in my mind all the time, worrying myself sick.  Your reply has been a massive help in putting my fears at ease, and I sincerely thank you for that.

Do you mind me asking, the events & procedures I've described here, do they sound "the norm"?  Or do they sound as if they're in preparation for something more serious?

Thanks once again

Huw

Good evening Braveson

Thank you for replying to my post, my wife and I massively appreciate it.

First of all, I'm sorry to hear about your son''s case. The treatment he has received sounds gruelling and a long journey.

I'm so glad to hear that he has been improving step by step, bit by bit and that he is now stable.

My best wishes go out to him and his family, and of course to you.  I sincerely hope his progress continues and he has a healthy future.

As for me, I'm still finding it difficult to come to terms that this is happening.  I'm an emotional wreck and totally unhinged.  What I needed was a bit of empathy and support, a little "hand-holding".

Your reply and limasierra''s reply have gone a long way in doing that.  Please accept my huge & sincere thanks.

Best wishes

Huw.

I'm so glad it helped!

It must be so hard when it's your own child...it will become clearer as the weeks pass.

The treatment protocol looks similar to mine. I was prescribed 7 weeks of radiotherapy and 9 months of chemo, or six cycles of six weeks, but I ended up doing only four cycles or 24 weeks.

Having 99.9% removed is fantastic.  Radio is very effective for some and got rid of most of mine, before chemo eradicated it.

All medulloblastomas are high grade. There aren't any lower grade ones so don't worry too much about that.

All the above is similar to what I went through, except they didn't operate on the tumour, but they inserted a shunt for hydrocephalus.

warmest wishes to you and your family.

It did, massive thanks once again.

Sorry to ask more, but did your oncology team refer to your case as requiring "high-dose treatment/chemotherapy"?

And did you use that hickman line for stem cell harvesting/replacement?

Yes, they gave me the max dose possible of radio as they said my prognosis was not good at all if the treatments didn't work. They said I'd have less than a year from Dec 2015.

But it worked. 

I didn't use a Hickman line and had cannulas inserted at infusion time.

I didn't have stem cell replacement, either.

All the best as ever, LS

That's the thing that's really worrying me.

The oncologist has said our boy is going to need to receive the "high-dose chemotherapy" and that this "always requires stem cell replacement".  He says it's this high-dose treatment that will have major effects on him and his ability to pull through this.

It's left me cold and petrified.

I'm sorry to seem to go over the same thing.

I can imagine it's scary news..

Have you tried asking why stem cells? Maybe it's his age?