Daughter of Newly Diagnosed CLL Patient - 3 Weeks Until Chemotherapy - Any information greatly appreciated!

Brand new to this forum, not a patient myself. My father was diagnosed this month and is already scheduled for treatment to begin in 4 weeks. Seems that many of you had lengthy W&W periods, but 5 years passed during which my father went without even visiting his GP. This was discovered this month, with the arrival of an enlarged neck lymph node. The suspect node was surgically removed 1 week before Christmas. Cat scan showed several other neck nodes are enlarged.

My father is scheduled for bone marrow biopsy and genetic testing on January 5th. He is 58 and in overall good health (no co-morbidities that I am aware of except past bouts of diverticulitis - not sure if that counts has any affect on CLL). My grandmother has had low grade NHL for more than 10 years and has done no treatment. Hers also has progressed in the last year, but she refused treatment and is hanging in there much longer than expected. I'm unsure if hers is classified as CLL, but I'd assume so with the news of my father's diagnosis??

As far as symptoms go, I have believed him to be noticeably more fatigued than usual over the last several years. At times he seemed "out of it" but he never outwardly expressed that he felt this way until earlier this year in passing. Otherwise, no night sweats, no shortness of breath or trouble urinating, no fever, no issues with frequent infection, anemia, or anything else that I'm aware of. Just the nodes and blood test confirming presence of CLL. Of course the next round of tests will be telling.

Doctor said however that his blood work shows no "advanced systems" of any kind. This sounds to me like a good sign, but perhaps that's wishful thinking. I've yet to review any of the paperwork that my father received (just due to typical holiday madness, but plan to sit down with him this week to have a look).

My dad is NOT proactive with his healthcare (case in point 5 years without so much as a checkup). He's more the type to tough something out until it's unbearable, and not the type to conduct his own research (just trusts his doctors almost blindly). Conversely, I am proactive to a fault, and have educated myself perhaps to an unhealthy degree over the last 5 days. Thankfully, we are in Cleveland, Ohio (USA) and he's being treated at UH-Seidman Cancer Center (nationally ranked in cancer treatment) by an specialist of hematologic malignancies (we do not have CLL specialists as a designation here in the US, at least not that I'm aware of?).

I'm learning so much from the personal stories here, and am so grateful that this community exists at all.

My questions are as follows:

1) Does lack of B symptoms suggest indication of either mutated or non mutated status?

2) Does such prompt suggestion for treatment so soon after initial diagnosis seem typical given his lymphadenopathy?

3) If FCR is advised following confirmation of stage, is hair loss a side effect of treatment? (he is actually quite concerned with this side effect).

4) He is self employed, only gets paid if he's actually working. Have any of you had success working, at least part time, during the weeks between treatments?

5) Should he be concerned with heightened risk of infection over the next 4 weeks before treatment? Or is this risk more specific to during/post chemo?

6) If he is non-mutated, should I be advocating strongly for treatment other than FCR (if that is what his doctor recommends) despite his age and generally good physical fitness?

7) Does the genetic factor of my grandmother also having indolent/low-grade NHL play any role in this that would affect treatment, prognosis, or otherwise?

Any and every insight would be tremendously appreciated. I do apologize for the lengthy note here. Trying to research on someone else's behalf without all of the information has me quite stumped and feeling helpless. All I want is to provide him with some comforting information and be sure that I'm equipped to advocate for him as needed.

THANK YOU FRIENDS!!

7 Replies

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  • Best advice I can give...get referred to the CLL team at OSU for a second opinion... Dr. Jones or Dr. Byrd... both are world leading CLL specialist...

    The family connection will be of great interest to them... quite rare...

    ~chris

  • Terrific, I will look into this. Thank you!!

  • You could get a second opinion at Ohio State. One of the top CLL center in the country. Should try if they are recommending FCR.

    john

  • Much appreciated!!

  • Here is a good overview of CLL ...take it in small bites it is a very complex topic...

    nccn.org/patients/guideline...

  • Your dad needs predictive testings before therapy. Dr. Byrd and his team at OSU are top notch. I see him and I fly in from Los Angeles. Get a second opinion ASAP and certainly before starting. Take a look at this from our website: cllsociety.org/toolbox/buil... A CLL expert on your team is critical. Stay strong. We are all in this together. Brian Koffman- volunteer medical director, CLL Society

  • I'm in the Cleveland area too and go to both the Cleveland Clinic AND Ohio State. He might want to look at a clinic trial at Ohio State first...don't start anything until he looks at ALL of his options!

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