14-year old son diagnosed with Hodgkin's Lymphoma - worst feeling in the world

Hi Luna-May

Thank you so much for sharing your thoughts with me, its really good of you.

I know I should remain positive but I'm a born-worrier and I have panic-surges the moment I wake up at about 3am or 4am, then at various points of every day. I'll always find something to worry about, despite the fact that several people on here have been ever so kind and reassuring.

Very best of luck for the rest of your treatment too, all sounds positive !

Nick

x

Hi folks

We have had a weeks delay to having 2nd weeks chemo as his line has split inside, so he has to have that line removed and another one inserted on Friday, then we will start the 2nd chemo regime on the following Monday.

We saw specialist again as part of standard 28-day review, he seemed reasonably pleased but gave little away. I was a bit disappointed to hear him say 'the nodes have gone down a bit', but this just shows you have to trust the experts rather than yourself when measuring them.

The nodes used to be much bigger, the letter I have at diagnosis states the size (6 x 5cm in underarm node, 4 x 3cm in neck). Now you have to press hard to find and feel the underarm one, and its shaped like a bean 1cm x 1cm in my opinion, the end of your index finger covers it perfectly. But he stressed its not necessarily the size of the node, its the activity in it. And here's me thinking size and activity correlate (:-.

He is well in himself still, never had illness, no night sweats, no fever, though he has lost weight. But still goes to school. He is as lively as ever really, its just very strange,

I suspect that it was right on the verge of 4b rather than 3b, with the LDH being so high, increasing from 636 to 1000 in a couple of weeks from diagnosis to PET scan time. I wouldn't be surprised if we get a positive PET scan simply because it was on the border of 3b/4b.

Don't feel as positive as I was previously sadly, after seeing specialist. His node-size assessment has amazed me, unless he just errs on the side of caution, which is sensible. Spleen is no longer palpable, which is probably good. But I just think interim-PET after 2nd chemo will reveal new areas despite the reduction in size of the underarm and neck. Why else would the LDH increase so much?

The regime for children and teenagers is OEPA - Copdac plus radiation if required, similar I guess to ABVD in adults. Steroids are added to the chemo regime to help I believe.

Hi Nick, yes, most consultants will be measured in what they say - it’s just how most of them reply and give feedback. As you say, they will err on the side of caution.

But they would at the same time be very clear if things are not going well, so all in all progress is being made.

My counts were all over the place during treatments, I asked my team about this and was told that the body will continue to react and at times over react as the “educated bleach” does it’s job in the blood stream.

A positive interim PET is possible as it is all about the final result but the chemo will be chasing down areas on his body where the bad cells have escaped and are trying to set up camp.

From what I have seen youngsters deal with blood cancer treatment far better than us grownups as we overthink the whole thing and fight these mind battles that just make us fatuged.

He is doing great as are you.

Hi nick, that is ALL POSITIVE and just to add to Mikes advice rather than repeat, don't over think this and I know that's easy to say and hard to do, but as we have said before, the what if"s and may be's only wear you out, plus try not to keep looking back (like the ldh levels) look forward as what was, cannot be changed, and treatment does change the whole picture. Whether he was stage 3 or 4 real does not make much if any difference. So when the doubts and dark thoughts drift back, fight them off with the positives.

Hang in there you are all doing well, bummer about the split line but these things happen, normally it becomes blocked or stops working.

John 

Thank you for your wonderful reassurance Mike and John, I feel its me who is struggling most with this, it sounds silly but I have no one to turn to as I have to stay strong for him, my wife is just so strong and puts me to shame. It doesnlt help her when I exhibit my fears so I just keep my distance. I lost my mum last year after a brain tumour and nursing her for over a year with it, and my dad has dementia.

Its weird, being an adult male I should be stronger (I know there is no correlation between mental strength and gender), but it seems to be me who can't sleep and who gets really panicky.

Anyway, thank you both once again so much, your emotional support is a wonderful thing to me, no doubt I will be back again when in crisis-mode. You help me proportionalise things, its like having someone to talk to so thank you so much.

Nick, us males do try to do the macho man thing.

Over my many years on this journey I have talked with men who have all done the same and in reality all it did was affect their health in a negative way.

My wife and I actually learned early that sitting with like minded people makes a difference so we have been to many types of support groups both male only, female only and mixed groups and it does help turn the noise down between the ears.

This is a personal choice but you could consider the links below to see if there is anything in your area that you can look at as these types of groups do help unpack the rucksack of stuff you have collected so far and the longer this journey goes on the more stuff you collect, so its good to empty everything on the floor and have a look through what is important and discard what is not.

Macmillan Support Line Services on 0808 808 00 00 where you can talk with a real person and who can give local information

You can search for Local Macmillan Support Groups with this link

Maggie’s Centres are great and intact I go to our local one once a week to meet up with men from an actual cancer back ground or supporting folks on their treatment.

But as always we will always be around at the end of the keyboard.

I don't know if you do them but I do man ((hugs))

Hi Nick,

and to add to the great advice and support you’ve just had, please use this, your own thread, to ‘tell it like it is’ and know we understand! 

Plus also, apart from the Macmillan help stuff, there’s also a much smaller but more specific charity, Lymphoma Action, who have a number of support groups and a ‘Buddy’ scheme where is you wish, you can be linked up to someone with similar experience who can help you through. Phone on 0808 808 5666, they are also really understanding on the phone. It’s a charity based in Aylesbury. 

Hugs cxx

Brilliant advice Mike and Moomy, hope it might help others too.

I suffer from anxiety (not depression) since I was in my 50s, and take Mertazapine for it to help sleep. Bouts of insomnia follow.

So you can imagine what this has done to me. But I don't mean that in a sorrowful, self-pitying way.

I seem to manage a few days, but then it all gets too much and I become negative.

On this thread I have just tried to exhibit my thoughts through the journey.

Thanks both again.

Hi Nick

I wanted to comment on one statement in your post:

“But he stressed its not necessarily the size of the node, its the activity in it. And here's me thinking size and activity correlate (:-.”

When chemo kills cancer cells, the cells don’t just disappear instantaneously. After they die the body will break down the cells and in the process could create scar tissue. This happens more often with large tumors (the article I read mentioned 6cm). Given that your son’s armpit tumor was originally 6cm x 5cm, scar tissue is certainly in the realm of possibility.

What your son’s oncologist is likely saying is that just because there is still a “node” that can be felt, does not mean that it is still cancer, it could be dead cells that haven’t been reclaimed yet, scar tissue, or something else, and that it can’t really be known if it is cancerous without taking a pet scan to measure its metabolic activity or biopsying it.

With larger tumors that grow rapidly, the cancer can grow so fast that the body doesn’t have time to establish proper infrastructure at the center of the tumor, for example it may get less blood flow. Often in these cases, the center of the tumor will die and this will typically be mentioned in the radiologist’s interpretation with the word necrosis. In cases like this but where the center hasn’t completely died yet, it could be the case that the first round of chemo is effective at killing the outside of the tumor, but isn’t as effective at the center of the tumor, but now that the outside has died and been removed, the next round of chemo will be more effective because it has better access to the tumor. 

So there are a number of possible explanations for the remaining “node”. My advice, as hard as this is, is to be patient and avoid worrying, since worrying doesn’t actually accomplish anything useful and will only upset you and your family. 

Take care and think happy thoughts. :)

Hi and thank you Badger's Fan. That is a fascinating insight, I do find understanding things like this really help.

I said to the oncologist I think you will be pleased how much they have gone down, and in response he said "I think they have gone down a bit". So I was really surprised he didn't agree with me. But now its left me thinking what am I missing?  I totally and comprehensively accept you would take his judgement over mine. I have to trust his judgement. But I have it in writing from a different specialist who diagnosed them that at diagnosis point the palpable underarm one was 6 x 5 cms, ones in his neck were 3 x 4cms, and there was also cancer in his spleen on CT (confirmed by PET).

But I have felt them weekly, And they have gone down considerably, I have felt around, pressed hard etc and it is now only the size of the end of my index finger. What is left from the 6 x 5 cm node is like hard bean about 1cm x 1.5cm I would estimate.

That is when he said but its not the size its the activity in it that really matters.

Anyway, I guess he either thinks that we will have a positive interim PET as it was on verge of Stage 4 and spreading quickly, OR he is just trying to keep me grounded. I do understand that there is a danger of wishful-thinking, but even my son himself says dad I can hardly feel it now. So I am a bit confused by his assessment

I know we have only had 1 chemo of 6, and there is a long way to go with radiation possible too. Obviously we cannot see his spleen but that is not palpable.

He is going to school regularly and even begged me today to let him play football tomorrow, I've obviously said NO (:-

Thank you once again Badger's fan, it's great that you have gone to such trouble.

Might I ask? Badger's Fan?? What is that named after? If its not too personal a question (he says changing the subject).

.