Secretory carcanoma of parotid gland and targeted gene treatment (Larotrectinib)

Hi. I can’t recall anybody here so I searched for you but all I can find are your posts. Are there any support groups on maybe FB? 

Maybe here? 

https://www.salivaryglandcancer.uk/about-us/

Thanks, I'll check out the salivary gland cancer link.  So hard to find anything on what my son has.  I can't find any FB support groups either.  Our oncologist hasn't come across this in someone my sons age.  

I am so sorry you are both having to deal with this

Do let us know how things go if you’re up to it. 
Hugs

Thank you, I will.  

Hi. I’m sorry to hear of your son’s situation and can’t help on the specifics. But I wondered if you/he had also tried talking to a cancer charity that specifically supports young adults such as Shine Cancer Support? He at least might be able to talk to  other young people. 

kate

We're not based in the UK.  As this is his 2nd time to have cancer we're linked in with all services.  Unfortunately he doesn't want to avail of any services for now as he doesn't know of anyone who has gotten a 2nd unrelated cancer and he's not ready to join these groups again.  We are all trying to encourage him especially his oncologist who runs a 18-24 year old support group. 

Hopefully he will in time. 

Just thought I'd give an update.  The targeted gene therapy has worked really well and the tumour is gone after 4 months.  We are absolutely delighted.  He still needs to stay on the treatment for a further 1-2 years (they're not sure exactly how long yet) as adjunctive treatment because of the mutated cancer gene.  Side effects aren't too bad.  At the start he was absolutely exhausted but that is improving.  The main side effect is muscle pain in his legs but he's able to manage and he said it has improved slightly.  But he's happy staying on the medication.  He's just thrilled that he's beaten cancer for a 2nd time (and he's only 20)

PearlJamNo1Fan said:

Just thought I'd give an update.

Oh thank you for such an uplifting update. I am overjoyed for him and the family. We don’t get many very young people here but when we do it’s heartbreaking so I am truly happy. 

This is brilliant news, and as Dani said, so uplifting. I'm so pleased that everything is heading in the right direction. Thanks for letting us know, and all the best for the future. Take care.

                                  Chris