PLEASE don’t beat yourself up! You won’t know for sure till you know!
Have to confess I had a terrible time when daughter kept being told to get her affairs in order, really tortured myself. A lovely nurse counsellor saw me and said, never ever lose hope till you’re told it’s the end, while there’s life there is hope!
And that helped me through, when the last trial worked she had had active cancer all over her body, stage 4b but after 4 doses it had completely gone!
So please don’t google either, you’ll have your child dead and buried in your mind, and they aren’t!
Big hugs xxx
Bless you. I apologise for continuing with my worries.
no need to apologise, been there, done that! I know how worrying it is, bless you
Nick the two test you refer to are inflammatory marks and these are going to be higher than normal due to the lymphoma and in basic terms are a confirmation that the body is dealing with or fighting off some form of infection, all normal in this situation.
re LDH levels its not unusual for readings to be towards 1,000 or even over, I know a few who have had fnhl and their results were in the 600's range and they responded well to treatment, try to focus on all the positives everyone has shared and it may just help you get to the next stage on the emotional roller coaster you are now on. I am sure the consultant will be positive when you see them and that's the time as we have said to ask all those questions and allay some of your worries.
Thank you John, appreciated.
Will find out more this morning(:-
Its so difficult to ask with him there though.
LDH can be measured in U/L or IU/L, the second being the International measure. It depends which is used and it doesn’t say. And it’s unclear whether they (U/L and IU/L) will give the same score. It’s realky hard to find out even via a google search. I suspect IU/L gives a score one third higher but others say they are the same unit and give the same score.
The CRP score of 2 is either a level or a group/category but as with the LDH it doesn’t say on the letter. So it could mean two very different things.
His other blood tests seem normal - WBC, Platelet, HB haemoglobin, Neutrophils.
Thinking of you today, Nick, and hoping they have a good plan
Thank you so much, saw specialist at Birmingham Children’s Hospital and had PET scan to stage it later in afternoon at Queen Elizabeth Hospital.
A very long and draining day.
He thinks it is “at least Stage 3” so sounds like Stage 4 to be honest.
We are seeing him again next Thursday but he has more or less told us of a long chemo plan.
Have to go in one day next week for line to be inserted and also on Tuesday sperm banking.
Its overwhelming to be honest, waking at night is the worse feeling as you just can’t escape the nightmare. I’m sure everyone can relate to that.
Thank you again Moomy. He did say 8, to 8 and a half out of 10 chance of beating it, but of course difficult to say.
Good morning Nick, some progress is being made and with a plan in place this will move forward.
Yes, we can all totally relate to the night time mind tornados. Everyone will have used various ways of turning this noise down, for me it was a note book next to the bed for me. In the early days, when I would wake up at silly-o'clock with thoughts and questions I gave up concentrating on them as my brain could not deal with them so put them on paper and parked them as best as I could. Then the following day I would think through the thoughts or talk to someone about the questions.
You can not escape the nightmare but you can manage it as best as you can. Your sons team will look after him, but you need to look after each other. The brain requires 20% of our daily energy requirements to function, add stress that requirement goes up to 40%, then add cancer the percentage can go way up and fatigue will start to take over. So it is very important for the family to look after each other and to look for family and friends to step up to the mark and help out as best as they can.
Percentage figures are never great when they are given..... but from my personal experience 85% is a very good foundation to move this all forward with.
Mike - Thehighlander
Some journeys take us far from home...... but some adventures lead us to our destiny - CS Lewis
Thanks Mike, I know he is in good hands. To give him the best opportunity of beating it.
i think the hardest thing is being unable to show any weakness in emotion as it’s a child who perceives your mood.
Yes Nick, this will be the hard one.
From working with this age group most my working life I found them very switched on, well informed and can see through a lot of the screens that are put up by us grown ups and the people who could see through me the best were my daughters. I was still teaching during the first 14 years of my condition and the students totally understood what was going on and were very supportive.
Once treatment starts your little man is going to be in an environment with others in the same boat so they will talk and share their thoughts and nothing will be hidden - teens will be teens. So a good open, but at times 'need to know' communication will be required to help you all to navigate this.
Most cancer patients are still actually the person they were before the diagnosis and it tends to be the older patients that will have the harder time as they overthink the whole thing. Teens will take it as it comes and some of the most inspirational blood cancer patients I have meet are the kids and teens.
Hence the reason I highlighted the need to ensure that the family are supported as best as can be. I am sure that the hospital can give you information about support groups as they are dealing with this all the time. Again from my experience, sitting with others (parents) on the same journey can help take the mystery and unknown out of this rollercoaster.
You are doing great.
so not the best news but hey, they are obviously going to do all they can for your young man. So sorry it wasn’t better news, though, for you all.
its hard to hide your state of mind from him, especially at the start of all this, but part way through he will be more focussed on himself and how he is coping. There’s always the crying in the shower as a way of helping yourself manage it all though.
as he’s being looked after in such a big hospital, they should hopefully have a parent’s help system set up too, make use of it! Ask about help for the family, they are sure to have something to offer. And for your son, too, there should be psychological help on offer, he might not need it now but the treatment time will inevitably take a toll on a teenagers spirits, chemo for a blood cancer can be likened in some ways to PTSD especially in younger people.
And don’t forget that Lymphoma Action can offer a Buddy scheme for you and the whole family as well as your son, and have support groups too. You can contact them on line and phone as well, on 0808 808 5555.
Sending you love and hugs xxx
Thanks again both, appreciate your words. I think we were prepared for yesterday as he had spleen issues on his CT scan and small nodes in his groin, as well as the one in his armpit, neck and a small one in his chest.
Clearly was Stage 3 or 4.
Hard to believe when he was examined thoroughly just before Xmas he only had one in his armpit. How quickly can it grow! We thought it was just stage one at that point if it was lymphoma.
Yes Nick, blood cancers can at times be very aggressive and move so quickly.
From the years I have lived with my NHL it went all over the place then over 5 years back it went from Stage 3a (where I had been for many years) up to 4a2 in the space of 6-8 weeks...... but as one of my team said "Well Mike, the beast has decided to come out and play dirty...... so we will just have to play harder and dirtier back at it"
sometimes faster growing HL responds fast and well to chemo, (thinking about my friend’s daughter who was I think around 15 when diagnosed, had a chemo regime I’d not heard of) so there really is hope! We just have to wait and see what regime they decide on, it may be rather different to the standard ABVD, due to his age.
Hi Nick I see you have an update, an 80% to 85% chance of success is good and remember the figures they base their judgements on are 5 years out of date, about 8 years ago that figure was probably around 50% to 60%, so whilst not a guarantee it shows they are confident and that's what you have to hang on to for now especially when the doubts creep in. As for whether its fast growing or not only time will tell but once treatment starts it becomes of limited importance, I was stage 4b with my NHL and had 8 cycles and had a mid point scan at which point the consultant said that 70% to 75% of the lymphoma had gone, so after a couple of cycles its likely your son will have a scan to see how treatment is going as thats the norm for HL.
As Mike has mentioned the more aggressive the more likely chemo will kill it off.
Have they told you which type of HL it is ?
hang in there and you will make it through also just so you know if he has abvd people have gone on to successfully have children, so whilst playing safe, just in case by banking sperm, it may be he will not need it, again time will tell.
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