Unexpected death

[chimini]

Unfortunately, my father passed away.Under Imbruvica ,after using it for 8 months, his CLL turned into B CELL diffuse lymphoma (richter)which is very agressive. Doctors recommended R-CHOP but it didn't work and he died in the first chemo. I wonder if there is anyone who have the same diagnosis under IMBRUVİCA

[Newdawn Administrator]

I can't answer the question on incidence level I'm afraid chimini but wanted to send my sincere condolences to you on the loss of your father.

Regards,

Newdawn

[Majer in reply to Newdawn]

condolences for loss of your father from MAJER1

[Loves2walk]

I'm so sorry to hear about your Dad's passing. My sincerest condolences.

[Hidden]

Dear Chimini-

So sorry to hear of your fathers passing.

Please know your friends here on the forum feel your loss.

bill

[Name-1]

My sincerest condolenscens,Chimini.

[prosecco1]

So sorry to hear about your Father, sending my condolences

Elle

[albie58]

So sorry to hear about your dad. My thoughts are with you and your family.

[wroxham-gb]

Just so sorry to hear your sad news.

Sue

[Foggymind]

I am deeply sorry to hear about the loss of your dad Chimini. My heart and condolences go out to you and your family in your time of sorrow. God Bless.

Kevin - Essex, UK

[ygtgo]

Sorry to hear of your loss chimini.

Thank you for taking time to let us know.

I hope someone will be able to answer your question on Imbruvica.

ygtgo

[Peggy4]

Just want to add my condolences chimini. This must be a very difficult time for you all.

Peggy

[cllady01 Former Volunteer]

Chimini, thank you letting us know of your father's death— your great loss. While such information is very difficult to relate and to hear, the obvious love and care you provided your father in his valiant fight is so sweet to hear.

[ap64]

Condolences to you and yours at this difficult time.

[Bubnojay]

Hi Chimini

So very sorry to hear your sad news, little comfort to be found only that there is no more suffering for your father who had been through so much, in his 20 year battle with cll.

Sending sympathy at this very sad time.

Bubnjay1 .

[sumok]

so sorry to hear of your father's CLL progression and

your loss. my husband's CLL developed further

mutations while on ibrutinib for 5 months, though

his blood counts improved quickly and stayed pretty

good (some neutropenia). stem cell transplant was

recommended in part because of those changes,

and risk of his CLL developing ibrutinib resistance

sending you warmest thoughts.

[David73]

chimini, it was good of you to let us know of what happened to your father. I am very sorry to hear of this. Within our CLL community we travel in hope that we die with CLL from some other problem but for some of us this transformation occurs. It is so sad that your father went this way. My thoughts are with you. David.

[Wchdale]

Im so sorry to hear this. My CLL transformed into Richters 4 years after chemo treatment and two years into Ibrunitib.... Have had 4 sessions of R-CHOP and two sessions of R-ICE with lastfridays pet scan coming back worst. I feel like I day to day sometimes. We are now trying to get into the CAR-T therapy ASAP and hope for the best. Has anyone out there with Richters had the CAR-T if so how are you doing with it?? Thank you and wish you and you family the best. Sincerely

[PE1234]

So very sorry to hear of the passing of your dad Chimini .My thoughts and prayers are with you and your family l🌹🌹

[Tanta44]

So very sorry, Chimini.

[jan1780]

So sorry to hear of your loss

JJan

[Bethan49]

Thinking of you at this time of loss x

[Hidden]

Just want to echo the thoughts already expressed above.

[Kathp]

So very sorry for your loss Chimini. Just to let you know I am thinking of you at this time xxx

[horselvr]

Very sorry for the loss of your father. May his memory be a blessing.

[maggiesgrandmom]

I'm so sorry about your Dad.

[BeckyLUSA]

My sincerest condolences to you and your family. It appears your dad put up a good fight. Thoughts and prayers are with you.

BeckyL

[Hidden]

Chimini,

I lost my father last July and I know how you feel. God bless.

[mgh348]

I'm so sorry to hear your sad news. May happy memories comfort you.

[CLLCalifornia-USA]

My heart felt sympathy during this time of loss. Wishing you comfort in knowing you were always there for him. Kindest regards, Sally (USA)

[pkpayne]

I'm so sorry to learn of your father's passing. I've wondered myself about how often CLL transforms into Richter's. Do the doctors say it was because of the Imbruvica? Again, so sorry for your loss.

[chimini]

İt is not so often.His physcial performance was not good, he got so many therapies during 20 years. He was 75 , and could not get on with the therapy. Doctors said under imbruvica this transformation can occur, but no for sure. He was so good while taking his pills.

[Jacksc06]

So sorry for your loss. Sincere condolences.

[Ausrine]

I had Richters transformation after 6 cycles of FCR. Then I was put on ibrutinib for 5 months and had mini allo transplant.

I'm very sorry for your loss 😔

[Jilltap]

My father had a mutation while on imbruvica and is growing weaker each day. It is very difficult to watch as there is nothing left for him to try. I am so sorry for your loss. Please take good care of yourself during this difficult time. Sending loving thoughts to you and your family.

[queencalabrese]

To my understanding patients with CLL can transform/Richters into DLBCL or other lymphomas at anytime as well as during FCR or Ibrutinib/Imbruvica.

[ThreeWs]

My condolences Chimini for your loss.

Although Ibrutinib (Imbruvica) works very well for the vast number of patients no drug has been found that does not fail some patients.

Patients who transform to Richter's are most likely to fail early in the use of Ibrutinib (under 2 yrs) and have poor prognosis markers such as Unmutated IGHV, Complex Karyotype, 17p del. with tp53 dysfunction implied or aggressive 11q del. Patients with these markers who have had prior chemotherapy or chemo/immuno therapy are more likely to fair poorly than patients who have received Ibrutinib as a frontline treatment.

In one study done at MD Anderson looking at 127 patients treated with Ibrutinib where 26% failed and of them 7 patients transformed. These patients were generally high risk patients who had been heavily pretreated. bloodjournal.org/content/ea...

WWW

[terryI_uk]

Very sorry to hear about your dad chimini, Terry

[virdieblue]

My sympathy on your great loss.

Virginia

[MsLockYourPosts Passed Volunteer]

My condolences to you and your family. Losing a parent is unlike any other loss.

[jchays1]

So very sorry to read of your loss.

[naddude]

Sorry for your loss. Must be hard. It's a terrible disease. Best wishes.

[MilliePerth]

Condolences, so tough.

[Hariommd]

Very sorry for your loss.

To answer your question, my mom was diagnosed with CLL about 11 years ago...had been slowly progressing...and in February we started her on ibruvica.

In about 5 weeks she needed to be hospitalized and we stopped treatment.

Upon doing a biopsy they found her CLL had transformed into Richter's.

She is in very frail health so starting R-CHOP would be difficult.

She was doing so well before ibruvica. My gut told me not to start her on it and now I regret not following my sixth sense.

[chimini in reply to Hariommd]

Sorry to hear about your mother please let me know about the further developments that your mother will have.Your situation is exactly the same with us. Pray for her

[Ruhi9]

I have just learned of your father’s passing and am so sorry for your loss. Please accept my sincere condolences.

[chimini in reply to Ruhi9]

Thank you so much