Richters...my brother passed away

[nazkaur]

My brother passed away last week ..his CLL transformed to Richters in July 2018. They tried various chemotherapy...we even had a 100% bone marrow match.....and he wasnt eligible for Car t cell for whatever rubbish reason - He was 55yo . So much anger in me...they could have done something

[Newdawn Administrator]

Hi there and I’m so very sorry to hear of the death of your brother who I know from your previous posts was very precious to you.

It’s very natural to feel anger and to question whether all was done that could have been. The outcome for Richters is sadly still quite poor and it’s clear so much more research and work needs to be done in this area. We all fear it.

I’m sending condolences to you and your family on your loss. I’m sure you were a tremendous support to your brother when he needed you.

Newdawn

[nazkaur in reply to Newdawn]

So much anger...he was 55yo...they should have put him on car t cell immediately....

Thank you for your reply xx

[Kokobean]

I’m so sorry!

[Name-1]

So sorry.RIP

[EugeneL2]

I am so sorry for your loss. My deepest condolences to you and your family.

[DisneyMom]

So very sorry for your loss. He was certainly too young. It's a fear for all of us. Sending prayers and condolences.

Carol 🇨🇦

[cartwheels]

That's terrible news and so young as well r chop is usually successful so such a shame your brother did not respond just goes to show how we all react differently to treatment I'm sorry for your loss

[nazkaur in reply to cartwheels]

I think because when they began r chop the lymph nodes were already at 5cm

[Justasheet1]

nazkaur,

Just brutal. May I ask what chemo he received initially for his CLL? My condolences to you and your family. He was my age. May he RIP.

Jeff

[nazkaur in reply to Justasheet1]

He was given chemo to start (8yrs ago) and then ibritunib. Richter was confirmed July last year. R chop was started but he did not get remission. They then tried another chemo...and then nothing. He wasn't eligible for Jack. He was 55yo

[Justasheet1 in reply to nazkaur]

I’m so sorry. Life isn’t fair.

[Billhere]

Very sorry to hear about your brothers passing. That Richters is very aggressive and unpredictable. I wish it were different for you and your family.

[Panz]

I very much was to talk with you and I will later today....we have a very important Confirmation to attend crossed the state...I shall return.

😍☘️💕

[AutumnJ]

So sorry to read your post. I just wanted to offer you my condolences and say how sorry I am for your loss.

[LovecuresCLL]

Dear Nazkaur, Our deepest sympathies at this time. You are in our prayers. Please feel free to come here with any knowledge you can impart on us or just to vent.

-LoveCures

[nazkaur in reply to LovecuresCLL]

The only thing I can comcur is that they KNEW he had the gene mutation a year ago...the CLL then transformed into richters (I think bcos of the ibrutrnib), they then didnt spot the richters until the nodes were 5cm......I'm just as lost

[LovecuresCLL in reply to nazkaur]

So sorry to hear that . Ibrutinib is not supposed to do that. My heart goes out to you and your family. 💐

[J_88]

Sorry to here this. We have had a couple people pass away recently on here. It has not been a good year.

[Spacee]

Oh this is so sad. Yes totally agree that he was just too young to go. My

heart hurts for you

Linda

[Jemorgen]

Cancer sucks. And sometimes the medical system can seem so arbitrary. I’m so sorry for your loss and understand your anger. I hope good memories will ease your pain.

[MFThorses]

How sad please accept my condolences for you and your family.

[Happy-Feet]

So sorry to hear this sad news. Please accept my condolences. May he Rest In Peace.

[Panz]

Nazkaur, I am back...long trip but a very important trip....plus a great family gathering. As I said I very much wanted to talk to you as I lost my Mom to CLL though she never had treatment and was in her 80’s and had heart valve issue, she had CLL for about 5+ years, I have had CLL for 30+ years with 27 of those years on Leukeran off an on for 10 sessions. I was put on Imbruvica 420 in January of this year. Today at the Confirmation gathering my Brother and his wife had many questions as he has had CLL for 4+ years and will be starting Imbruvica 420 in July. I am very happy for him as this is his first line treatment. He is carrying a 225+ WBC and has lymph node involvement I have been worried sick that the treatment wasn’t started before this, however all other labs have been in normal range.

So I am able to understand you anger and I feel very badly for you and your entire family....it is hard to come to terms with how his care was handled. I fully understand that we CLLers are all so very different but this is very tough to accept. My brother is about the age of your brother so story hit pretty close to home for me and my heart aches for you. But please don’t let this anger consume you!!! Please also feel free to come here and vent anytime....we will be here for you. Hang in there, my friend!

😍🙏☘️💕

[nazkaur in reply to Panz]

Thank you....the problem is getting answers..he was treated at the Freeman hospital in Newcastle upon Tyne. R chop didnt work. They found the tumours at 5cm.......its all pointless now. He was begging for the car t cell ...I feel traumered at remembering him being at their mercy.....hes now dead....its too late

[Bubnojay]

Sad for you, the pain of loss is so hard, anger an understandable reaction.

May you find comfort with your family and friends.

Sympathy

Bubnjay1

[JigFettler Volunteer]

Very sad news. I am so sorry.

Jig

[dmtm2005]

RIP , sending my condolences to you and your family.

[Jacksc06]

Very sorry for your loss.

[Garcar]

I am so sorry for the loss of your brother

[pkpayne]

I'm so sorry for your loss and your anger is understandable.

[Fran57]

I’m so very sorry to hear that.

Fran x

[Majer]

Iam very sorry he should not lost his life ,with new medication we have now something should had be done. so sorry from Majer my condoleance to you and your family.

[nazkaur in reply to Majer]

I don't know what went wrong...r chop didn't work...I think they found the richters at 5cm...it was tio late

[marcyh]

So, so sorry for you and your loss. I prayed for you this morning.

marcyh

[nazkaur in reply to marcyh]

Thank you

[virdieblue]

Such an awful story- May God accept his soul.

[leilei]

So sorry for your loss, my condolences for you and your family.

[carol_h]

I’m so sorry. May you and your family find peace.

[MsLockYourPosts Passed Volunteer]

I am so sorry for your loss, Nazkaur! Transformations are unpredictable, and we certainly need more research done about how to deal with Richter’s.

[TinyTattooedToes]

So sorry to hear this. My condolences