Dad's new diagnosis of stage 4 diffuse large b cell lymphoma

, I am so sorry to hear this news do accept my sincere condolences. The world we are living in now has taken families in some challenging journeys, I myself lost my mum back November so do understand the process you are going through ((hugs)) 

  Your news brought me tears.  I cannot imagine the pain you and your family are going through.   Please accept my condolence, and I hope you and your family will find comfort.

Thehighlander Mike, I am so sorry about your mum, too.  I cannot find words to say as you had gone through a lot yourself and yet you continue to offer your time, effort, advice and encouragement in the forum, so generously.  

This is to everyone....

Hi, my Dad has just taken his Cycle 2 RCHOP infusion a couple of days ago.  Cycle 1 was whirlwind in terms of medications, tests and consultants and my sisters and I pitched in to help Mommy remotely.  However, my Dad coped well despite pain from surgical recovery for the first 2 weeks of the cycle.  At the last week of Cycle 1, he could transfer himself back and forth bed and walker, and could manage slow paces around the house.   Hair's starting to fall, and he accounts for lose of concentration and memory.  Otherwise, he is doing so well in doctor's books that they were happy to do the next cycle as an outpatient.

I would like to check though if other RCHOP patients experienced any delirium during infusion?  In Cycle 2, Dad experienced it for about an hour, thrashing around, wanting to scream, practically didn't know what to do with himself. My Mom had to do her best to keep him down and calm him. Did anyone experience the same thing?  I was wondering if slowing the rate of infusion will help next time?  I'm just about to do some research  myself, but thought I'd post to see if I can draw some learnings from others.

Hi again , sorry to hear about the delirium your dad experienced. Reactions are not that unusual.

What did the hospital team think/say?

Some people can have various reactions to treatments and slowing down the infusion can help overcome this.

I never had any real problems with my many chemo treatments but did have a delirium event when I was receiving
Immunoglobulins when I was in hospital with Pneumonia and Sepsis.... very odd experience.

Its important to remember the body is put through a lot during treatment so no surprises when it complains from time to time ((hugs))

The chop drugs are normally pushed in to a vein via a cannula and syringe the R rituximab is given like a drip as an infusion. Was it during the rituximab infusion that this incident occurred? I have never heard of anyone having such an experience during treatment, what did his team say at the time?

Hi, sorry for a very late reply.  Haven't been online for a long time. Dad will now be taking his Cycle 5 on Wednesday, thank God.  I raised the delirium concern with his Oncologist way back April, and suggested reducing the rate of infusion of the drugs.  They were unsure whether it was the steroid or the Rituximab.  Anyway, they did so. It meant that his outpatient stay took longer, but he didn't encounter it again.  From Cycle 3 then on, he managed successfully.  Surprisingly, he looks energetic, happy, switched on and joyful.  He does have a strong fighting spirit as he hobbled around the courtyard in his walker, and forcing himself to bathing and toileting without aid in Cycle 3.  

His recent PET scan came out really good. There were other concerns that we picked up (thyroid, heart), but only needed us to watch out for as they were not malignant.  

It all looks very promising, which I really find very reassuring given the distance between us and the rest of the family.  

Well that’s great news, it’s scary at the time but great his team has turned things round and things are looking good 

Good to read such a positive update, not long now until he is finished treatment.

Hi, I thought I'd do a final post as I promised to keep you posted of Dad's journey.  Dad completed all 6 cycles of RCHOP successfully in July.  He only needed 2 more cycles of Rituximab. However, after the 6th RCHOP, he caught Covid19 and spent 4 weeks in hospital in isolation.  Technically, he recovered from it, but because he was immunocompromised, he caught severe pneumonia and died of sepsis.  No medication or treatment was enough ammunition. His body was battered by medication.  He had the best doctors and hospital services, but it truly was his time to rest.  It was a gut wrenching experience for us, but we are consoled that he is no longer suffering.  We are now trying to support Mom remotely, who is all alone and grieving, and waiting for borders to open to be with her.  

Looking back, although his months of treatment reduced his former quality of life, it was the RCHOP treatment that afforded him those extra months of normality.  

John and Mike, thanks very much for your support.  May you continue to be blessed with health and inspiration to help others.