Richter’s Transformation - 1st week of R CHOP

Hi Ethel 

my hubby has just finished his 5th round, doesn’t need the 6th, his legs and feet, for weeks, have been swollen  to an unbearable extent and he’s now on water tablets, for whatever reason they wasn’t prescribed earlier , he’s now in unimaginable pain and can’t get comfortable, it’s 4am and I’ve had to give him paracetamol, hopefully they’ll kick in soon, he said the pain is akin to a red hot poker being pushed through one of his feet

ive read on here that the muscle pain can last for months after the R-CHOP, try a painkiller that helps you but do discuss with your team first, my hubby was told he could have paracetamol but did ask in the first instance 

hoping you feel pain-free soon 

Thank you for replying. How horrible for your husband to have that - I hope he manages to get it under control. It’s definitely not an easy ride for any of us! Wishing him a speedy recovery.

Hi Ethel and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well.

You have been unlucky that your CLL transformed but transformation is not that unusual. The positive thing is that R-CHOP although it’s a full on treatment, is very effective but dose come with its own challenges. There are many folks on the group who have had R-CHOP so you will get some good lived experience from them.

As has been said by Punchbag muscle pain is one of the treatment challenges. The chemo is designed to ‘attack’ the cancer growth areas, breaking the areas down and killing the cancer cells but like any extreme event there is collateral damage. So your localised muscles and nerves will also be effected resulting in muscle wastage and nerve damage…… and this results in pain.

You unfortunately are going to have to push though this and do your best to ‘try’ and keep some regular activity going. My great Specialist Cancer Nurse (SCN) just kept saying “Mike the less you do the longer your recovery will be but you will have to bare with the pain but this will improve ether through activity of once treatment us completed and following a period of recovery.

Obviously you talk with your clinical team about pain control meds…… I had various strengths of pain meds as I went through my various treatments from normal Paracetamol up to full on Morphine and Tramadol (hit my community name for my story).

The group is here to answer questions at any time ((hugs))

Thank you so much for such a helpful and kind reply. I know I am going to find this forum incredibly helpful.

Hi again Ethel, navigating the journey takes some time to get into a rhythm but you will get there. 

I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information and and support routes. They also run month Regional Lymphoma Online Support Groups whwre you can actually talk with others who are in treatment of have come out the other end.

They also have a Lymphoma Buddy Service where you can be linked up with someone who has walked a similar treatment journey. 

Just adding to what Mike said.  R-CHOP is an extremely effective form of treatment, despite being quite brutal.

It bothers me how often I read on here that people are having pain which isn't being addressed by their treatment teams.  This is something your chemotherapy team should be asking about each cycle and you should also have a number to contact if you're having any issues between scheduled appointments with your consultants.  

Please don't just endure the pain hoping it will go away.  You have enough on your plates without adding pain which can be managed to the mix.

Just updating …the water tablets are working, hubby’s swelling is going down ,be it slow, 4am and he gets cramp …dear god, I know it’s early days but why on earth does it have to be 4am …again 

offered him paracetamol…NO 

rub his calf muscle…NO

i need coffee…lots of coffee and a huge kettle full of patience 

his heart scan came back showing a bit of damage, nothing to worry about, apparently it will heal itself …nothing to worry about? Ok …I won’t worry then

he has his pet scan a week on Friday, 6 weeks after his last R-CHOP, hopefully it will be ok , he’s been very tired, very quiet and sitting in his “den” without  the TV on, dozing on and off all day, I feel he needs something to lift his low mood but all he says “ it will pass” he doesn’t want to do anything,, not that he can, other than walk about the house

We have long journey in front of us , Mike has great advice, I’m hoping he can tell me that all this is normal 

It's all absolutely normal.  I remember my haematologist telling me at my post PET appointment that it would take at least a year for my body to recover from the dual insults of cancer and chemo.  The fatigue can persist for a very long time.  Exercise helps to counteract it, but it's extremely predictable.

It takes time to discover your new normal once treatment ends.  It's a life-changing experience, physically, mentally, and emotionally and it takes a while to find the new you.  Friends and family often expect that once cancer has been defeated we go back to our old, familiar, selves - but that's not how it works.  We get to who we're becoming in our own time, and there's nothing which can be done to hurry it up.

For now, try to enjoy the peace of being off the roundabout.

Hi Punchbag, sorry for being late but we went to see Top Gun - Maverick last night…….. life does get back to a semblance of normality - honestly but fir some it takes time, determination and a good measure willingness.

Unlike women….. who are more open to share their fillings and look for support……. men can find it hard to navigate themselves out of a dark hole…… there is a male pride thing or could it be downright stubbornness and self-centredness?

Believe does need to set some achievable goals…… in all my years of treatment and recovery the words that my SCN (Specialist Cancer Nurse) said to us both always ring true…. “Mike your recovery will only come based on what you put into it……the less you do the longer it’s going to take….. Fiona (my wife) there is no room for pity me parties - show him tough love and don’t join his party”

Early on as a family we all agreed that yes, everyone had an off day so give them space but tomorrow was anew day and the party was over.

If you have read my profile you will see that my journey was very hard and at times traumatic but the determination to get through it and out the other end was very high on my mind most of the time……. during my Stem Cell Transplants, especially my second I was struggling so Fiona had to implement some “tough love”….. new photos of the granddaughters would appear with the words “you are doing this for them”….. I would get regular paintings and drawings sent by my two daughters that the granddaughters had done sent to me…… this was not during covid times but we were in Glasgow away from home for 4 weeks then 7 weeks and only my wife was allowed into see me. I was not allowed out if my small room…… then the recovery and recuperation started…… but the greater good was never far away from our minds, we set goals, we set dreams to be achieved….. this can be done.

((hugs))

Morning Mike, thank you for your advice …it’s a long hard path to walk , hubby has numerous appointments during late July and august, heart scan showed some damage caused by the chemo, another consultant at another hospital to see, rheumatologist appointment at a different hospital, due to his weakness not improving, the weakness was how it all started 12 months ago, he’s still very low and tired and doesn’t comprehend how his illness effects me too ,scoffs at any advice I offer …blimey this post is taking over Ethel’s initial post …Ethel, we had cramps again this morning 5.30 …I hope you’re feeling better and apologise for gatecrashing your post  about my normally lovely hubby xxx