Constant tiredness, low mood

Hi   and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here.

I am Mike Thehighlander and help out on the Community. I had Non Hodgkins Lymphoma so can understand the issues your son is facing but this will pass.

His body is going through a lot at the moment both physically and mentally so sometimes he will just need to chill out and let the body recover.

Keep a close eye on him and if things are concerning you we would always recommend you call these issues into his team using the contact number you should have for his team.

I did not have the same treatment so let’s look for those who have experience with this to get back to you.

This is truly the worst rollercoaster ride ever and it is important to remember that your son is on a different tack from you - hold on tight as this will pass and let’s look for positive progress to be made all the time.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways.

When you have the time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you.

Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page.

We are always around to help out.

Hi HL mum,

We are in virtually the same position with our son who has just turned 15. He has stage 3b HL which is very similar to 4. 

He has just had 2 lots of OEPA and is due his interim PET scan next week before a further 4 Copdac, and quite likely radiotherapy.

My son handled the first regime of OEPA well but after his 2nd one he looked extremely pale and tired and has a cough and cold, and as his neutrophils are just so low, he is now in hospital for 48 hours as a precaution, as they cannot fight infection. He is sat up in bed, he's fine, just playing games on his phone etc.

Typically the chemo hits him 7-10 days after the chemo. But everyone is different. He will be tired but if you are unsure you should ring the nurse assigned to him just for advice. But I'd say its very normal for the effect of chemo to hit him like a brick several days after or immediately after.

Very best wishes

Thanks mike for your reply and for taking the time to point me in the right direction for more support and advice. 

I will definitely try and update my profile as you suggested.

thanks

Hi Nick 

Thank you for taking the time to reply, sorry to hear your son is in hospital and hopefully he’ll be feeling better soon.

my son’s first Oepa wasn’t too bad but he got a cough and ended up in hospital for 48 hours too, but it really is the best place for them and abit more reassuring as parents to know there’s doctors and nurses to help.

hoping the pet scan goes well, all the best for the copdac, I’ve been told the OEPA is a heavier chemo than COPDAC so hopefully it will be easier.

best wishes.

Yeah I am sure he is in the best place, as you say its just a precaution,

Yeah the  rounds of OEPA were for 5 days a week, the 4 x Copdac is apparently going to be 3 days per week, but I think he is going to need radiation too as a new enlarged node has appeared, whilst his original ones have either gone or nearly gone.

hi Reanswolf

hoping all goes well for him.

we had 7 days of oepa treatments over a 28day cycle (days 1,2,3,4,5,8&15) and copdac will be days 1,2,3& 8 with 15 days of prednisolone for each one.

my sons feeling much better, temp has normalised and I think really all he needed was some good bed rest, over the lst day he slept loads but thankfully he seems back to his normal self today.

hoping everyone’s well 

Yes that's exactly the same pattern for my son.

He is feeling better and his itching symptom went after first round.

I guess they just need time to really sleep as its part of normal recovery.

Very best wishes.

Hi to you both,

don't they reckon teenagers need about twice the amount of sleep as the rest of us anyway? So yes, extra sleep is beneficial when recovering from chemo!

hope it all works.....

hugs xxx

Hi everyone,

ive had the same treatment previously, and no exactly how they feel. I can say though that for me this got better with time and no over doing what my capabilities were and doing things slowly  . I hope everything goes well for you 

Hi 

thank you to everyone for their advice and reassurances, I’ve found that he’s having quite a long afternoon nap these last few days but it’s doing him a lot of good.

he’s becoming quite moody and this could be due to the fact he’s a new teenager or the drugs or tiredness but the naps are helping and we’re getting into kind of a better routine with what to expect and how to get on.

thanks again.

x