Dad recently diagnosed with high grade non hodgkinsons,

Hi  and welcome to our little corner of the community but sorry to hear about your dad.

His experience following his first treatment is unfortunately not that unusual and you need to expect this again. Although scary his team have this covered and they will get him fixed.

Neutropenic Sepsis, being in isolation, on IV antibiotics, low platelets and hb are also rather normal and I have the T shirt as have many others who have been there.

I have had many infections resulting in low blood results and my team often could not find a reason but once the antibiotics do their thing the bonemarrow gets in the job and starts producing what is needed.

What type of NHL does he have as there are a number of types of High Grade ((hugs)) 

Hi.

we were told it’s  high grade lymphoma aggressive that’s all they have told us and he has bone mets.

im put at ease now as you say this can be the cause of everything that is going on and many people go through it.

It’s great to be able to speak to people who have experienced these things. I thank you for that. 

mandy x

Hi Mandy , good that my post helped.

I have been on my journey for over 22 years now with a rare incurable and hard to treat skin Low Grade Non Hodgkin’s Lymphoma (NHL)…… but I am now over 5 1/2 years out from my last treatment, in remission and doing great….. I will add that back in 1999 I was told that I would never be in any long term remission (hit my community name to see my story)

High Grade NHL is very treatable, yes it can be hard work but most of the time the aim of the treatment used is for longer term remission and aiming for cure.

You may find his exact type of NHL on some of his hospital letters but do look at his hospital discharge letter when he gets home as it is normally on there.

How blood cancers like NHL work it can actually be found anywhere in the body at the same time including in the bones so you may find that his bone issue is actually NHL as blood cancer don’t tend to be called mets regardless where it turns up.

Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

I am always around to help as best as I can ((hugs))

Thank you so much x

So glad you are in remission x

Dad not doing too well. His temp has spiked today and he’s a little confused. They have doubled his antibiotics as there’s no response from the Meropenem. Has anyone ever had this please .

Hi again … sorry to hear he is not great. My wife will always say that at times when I was on heavy doses of IV antibiotics I was totally out of it…. no idea she was even in the room….. let’s look for this to change soon ((hugs))

Again thank you so much. You are such an inspiration and I really appreciate the quick response . I’ve had a really bad day today and  when I saw dad I just got so upset and I needed to get some answers.

hugs to you as well x

((Hugs)) I honestly can say I was often well out of it, I would sleep lots and even when I was awake, according to my wife, I was talking rubbish.

That is what dad is like today.
just so frightening ,as it would have been for your wife to see the person you love being confused/delirious.

I just keep thinking this is the end for him I’m heartbroken