10 yr old with Hodkins Lymphoma stage 4

Hi again tara123 and well done navigating across to this corner of the community.

Let’s look for any group members to get back to you with any helpful first hand experiences.

Having no spleen will indeed make him more open to infection but my spleen just stopped working early on in my main chemo but on the whole I did ok infection wise.

Depending on where his HL is presenting may be affecting his appetite but once treatment starts this can often help especially if he gets steroids.

I am not aware of any post recently around someone your son’s age going through treatment.

You may want to check out the Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms for caregivers and family…….. I highly recommend you check this out as I do know there are a few caregivers and family of children your son’s age in these groups.

They also have a great Lymphoma Action Buddy Service where you may be linked up with someone who has walked the same support journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Always around to chat ((hugs))

Thank you so much i will definately look into those groups. his HL is in his chest and stomach and slightly present in his neck but not very prevellent there. Would you happen to know how long into the treatment do people normally start to lose their hair?

It will depend on the actual treatment he has as there are a few treatments used for HL……. but not sure about for a 10 year old.

I lost my hair about 2 weeks after my first cycle….. my treatment had me in hospital 6 days/5 nights so I lost my hair 8 days after my last bag of chemo.

By the time I went for my first chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and were coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale. I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner ((hugs))

Hi Tara,  I just wonder how your wee son is doing?  I just wanted you to know that I lost a LOT of weight while waiting to be diagnosed.  I was very very weak before the chemo.  BUT during chemo as the cancer died my appetite came back and I actually began to put on weight.  The lymphoma meant I physically couldn’t eat and my tumours were in the chest and abdomen.  I’m now fully back at my pre-cancer weight.  Rooting for your wee son.  Our bodies have amazing capacity to heal.