Larotrectinib/Vitrakvi

Hi PearlJamNo1Fan 

I haven't had this treatment so hope you don't mind me suggesting that you might connect with others who have had this if you also post in the head and neck cancer group, which I can see you've joined.

There is also information from Macmillan if you click here about the likely side effects.

Wishing you and your son all the best.

Hi … Hope your son is responding well to his treatment … it’s the new frontier of Cancer treatment and the initial findings I’ve researched look promising.

My wife (71 years young!) was diagnosed with her second bout of Cancer in 5 years. BC treated successfully in 2021 no signs it’s come back so far.  
She has just started taking Vitrakvi (Larotractinib) for an unrelated new cancer diagnosis. Her initial diagnosis was lung cancer (she has never so much as puffed a cigarette) in December ‘25 and it had spread to her bones resulting in chronic and acute pain resulting in a broken femur (agonising pain) due to bone weakness. She has a similar rare genetic fusion to your son (type 3 in her case) hence the targeted treatment. Be keen to swap notes on side effects and hopefully benefits with other patients/families.

Quite hard to work out drug effects as opposed to general effects of the disease so extreme fatigue, loss of appetite and diminished taste buds so far. Blood tests are within range so far but it’s three months before you can assume it’s tolerated because of the effect on the Liver. 

It’s said to be tolerated well but regular blood tests establish underlying effects. 

According to the Oncology team at St James Hospital in Leeds (Bexley Cancer institute covers a huge area) which we attend there aren’t many candidates for this therapy so having a forum would be hugely helpful. 

Thanks for taking the time to reply and I'm sorry to hear about your wife.  My son is 22 next month and this is his 2nd time to have cancer.  Hodgkins Lymphoma when he was 10 and secretory carcinoma of the parotid gland 2nd time (unrelated).  

He's on larotrectinib  100mg twice a day for 1.5 years now.  For him the side effects  are a decrease in appetite and his stomach feeling off.  The main one though is terrible pains in his legs and he has to use a walking stick.  That is the major side effect and he told oncologist he can live with it.  But as the time has gone on he's suffering from extreme exhaustion.  He's almost 22 and unfortunately can't live the life of most 22 year olds.  He's too tired.  But fair play to him, he has done the 3 years of university and his work placement while having cancer (it took a while for them to decide the course of treatment) and on treatment.  He finishes University in 6 weeks but has been granted a 2 month extension to finish his assignments due to his fatigue.  Otherwise the only other side effect he got was fluid on his lungs.  Thankfully it didn't require a hospital stay but he had to come off the medication for 6 weeks.  The side effects of the medication went after a week and it was then we noticed the effects the medication was having - my son looked healthy, pains in the legs went, he had energy, his appetitie was back.  He didn't want to go back on the medication again but he knew he had to.  

All blood results have been perfect which is good.  They are storing a sample of his blood every 3 months to track it as they are hoping in time they will be able to identify the mutate gene more.  His oncologist knows what she wants to do but technology hasn't caught up with her thinking yet!  

As my son is really patient zero they are learning from him.  We are in Ireland and I've only heard of 1 other person who is on larotrectinib and that person is a baby (under 2 years old, very sad).  We have no idea of any long term side effects as they've never treated anyone his age with larotrectinib.  

My son is hoping to finish treatment this year sometime.  He has responded really well to the treatment, better than they hoped.  We thought he was going to be on it for years but if his next MRI is stable (last 3 showed the tumour was gone) they will discuss end of treatment then.  My son just wants treatment finished as he's been a cancer survivor longer than anything else and it was very hard to hear your 21 year old say that.  

I hope this has been of some help to you and your wife.  It's so good to talk to someone else who is on the medication.  

Thanks for sharing more details…much appreciated. It would be good to occasionally stay in touch given as families were in a very small group. Your son sounds a very determined and courageous young man so please give him our best wishes for his studies and beyond. We can pop a note on this thread with any helpful or supportive messages. On a lighter note we’re told it’s a very, very expensive treatment so we have a bit of humour about it when I sort out my wife’s medication (she’s not fully mobile yet) about bringing the tablet in on a velvet cushion etc. Just so long as it helps as we’ve had a few desperate days worrying about the diagnosis which was not good. Best

Thank you so much for the lovely words about my son.  I am so.proud if him.  The medication here is €10,000 a month but thankfully our prescriptions are capped at €100 so we never pay more than that.  In America its $17,000 and you would have to pay it yourself.  Laughing at you giving it to your wife on a cushion! 

I hope the treatment works as best as it can for your wife.

Any other questions let me know.