Interested in people's thoughts on this. Let me make it clear, I'm not holding out much hope for my lad at his interim-PET scan results next week, but I am perplexed,
Firstly, as I said on another thread, his 6cm underarm node has disappeared, and I can feel just one of the 3 clavicular nodes above his collarbone that were each 3 x 4 cms, I would say one is still about 1.5cm x 1cm, but can't feel the others at all there. I cannot see the reaction to the chemo in his spleen, obviously, which was his other affected area at diagnosis.
After the 2nd round of chemo all his hair fell out, and for a few weeks he developed many sore red spots on his head. The consultant did not have any explanation, but anti-biotics largely cleared these up several weeks ago, but he still has several which he describes as sore. Not as bad as originally though.
Now though, he has developed 2 x hardish nodes on either side of his neck in exactly the same location, exactly symmetrical, but these 2 are the only ones enlarged that I can feel in his entire neck. As these are both directly beneath his ear and behind his jaw bone I believe these to be the tonsilor lymph nodes (also called the jugulodigastric lymph node). I think they probably developed after the scalp issue as I noted then that his neck looked a little broader.
So make no mistake, it is obviously very concerning that these are new growths having had 2 x OEPA-Copdac chemo, and that will undoubtedly return a poor prognosis, a very poor one in fact as it is indicative of progressive disease.
The question I have is really about 'symmetrical lymph node' involvement in HL, why would these exist on opposite sides of his neck in exactly the same location and feel exactly the same? Any other possible reason? I'm not going to jump onto any hope and I DO realise no one knows, but wondered if people had any understanding of a situation with isolated symmetrical node involvement in opposite sides of the neck.
I have always been told that as far as lymph nodes are concerned, symmetry is a good thing, most likely a sign that those nodes are simply doing their job. Are these in addition to the occipital node? I know you mention a reaction on your sons head, so is it possible the occipital node is also related? What did his consultant say?
I know you are very afraid for his scan and what it might show, but it is a good sign that so many of the major sites of disease have disappeared. Even if there was some slight progression, it shows he is chemo sensitive and that is fundamental. Remember that you do not know anything yet and the overwhelming likelihood is that he is going to have a negative PET.
My husband's cousin had primary progressive HL many years ago when she was 12 years old (she would have been on the same chemo as your son). They switched it up to the next level and she is now 100% cured and expecting her first child!! I just wanted to tell you that, not because I'm expecting anything other than a good result for your son, but just that there is always hope. They are excellent at treating relapsed/refractory lymphoma and there is ALWAYS a plan b.
I fully understand your anxiety and cannot imagine the stress you are under, but we will all be thinking of you and keeping our fingers crossed for his results.
Many thanks for your thoughts, really appreciated. I thought I had heard somewhere that symmetrical nodes were not 'usually' how it transpires. We'll see. Any new growth gets Deauville score 5.
I think he has a few bumps on his head by these spots, but not aware of his occipital nodes being swollen but these two symmetrical nodes are quite hard, which is also a worry. Probably about 2cm x 2cm each.
He was hospitalised for 48 hours two weeks ago as a precaution, after a recent cold and cough infection with very low neuts etc. But he is generally fine health wise, not that that means anything really. Whilst in hospital we saw the consultant who originally said his underarm was 6 x 5cms, she said "it had disappeared but she can still feel a few" (probably the one in the neck and these 2). It was her who highlighted the new one in the neck to me, but she did say it could be down to the infection.
So yes I don't understand how chemo works, in the sense that it has seemingly destroyed the main original site but possibly allowed these 2 to grow.
I am resigned to these new growths being HL.
I know I've asked things no one can answer, but again, I do appreciate your lovely words and the thoughts about symmetrical nodes.
Good morning Nick and a great answer from Helen.
As you say, we can’t actually give any clear answers and time will tell and what ever the results you take it on from there.
The one thing I am left with after all my chemo is a very reactive Lymphatic System.
Over the past few winters my wife or granddaughters gets say a viral infection but non of her/their lymph nodes react..... a few days later I pick up the same infection but my lymph nodes blow up like grapes and I end up in hospital with Pneumonia and Sepsis for a week.
Your lads immune system is having to work overtime trying to fight his cancer and keep him clear of other stuff that wants to attack him.
It is what it is and I have said this on a few occasions and I don’t apologise for saying it yet again - All the worry and research in the world will make no difference to what his consultants say and as to how this journey will progress.
Conserve your strength and emotional energy as this journey is not near finished.
I know my mate, I wish I could be like that and I do understand.
Just wondered about the symmetrical nodes point, but am not looking for any sort of denial of the issue.
Cheers Mike, Nick
There is nothing like scanxiety on this earth! Remember sometimes things aren't always what they seem. It took ages for my lymph nodes to reduce, although they shrank so so quickly, there were residual lumps for ages which turned out to be PET negative and have stayed that way. For me it's just this one stubborn lymph node but my new chemo is shrinking it already and I no longer need painkillers to sleep. There is always another option, but until you get that scan result, it's hard to focus on anything else.
I read so much as it gives me a feeling of control, but ultimately I know that I cannot synthesise the info as an amateur haemotologist. It's so important to trust your team, although because you can't have them on call it's so easy to fill in the gaps. I know it feels like forever but soon you will have the result and there is every hope it's going to be a great response. Remember the plan b!! All the best for next week, Nick and keep us posted. We all know the fear, but try not to let it completely overwhelm you. I wish I could take my own advice!! You can do it.
I really appreciate your kindness Helen, I ought to share your positivity but because these 2 symmetrical nodes have only developed since the treatment started, I can't feel the same way I'm afraid. There is just no sense to them developing.
I agree what you say totally - reading about the illness is simply a way of controlling my anxiety, I am almost more scared of the results than the disease itself. Its everyone's nightmare to have a child with cancer of course.
Bless you though!
i know, and totally ‘get it’ with your last sentence! I read and researched so widely and have scared myself rigid at times. There were nowhere near the number of available treatments in our daughters time, too, so yes, I found it pretty traumatic and vow that our kids (they’ve both had their moments!) have directly caused my now silver hair!
Just please don’t try ‘second guessing’ it all, wait for those results and then know you can say ‘ok, what next?’
Sending big hugs xxx
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