Favorable prognosis

[Jessielab]

When I was first diagnosed, (2020 summer) I was told that my tests indicated that I have a 'favorable prognosis). Can someone please explain what's the significance of this terminology.

Thank you. Patrick

[MisfitK]

Usually, it relates to your chromosomal changes with your cancer and what those changes mean with regard to likelihood of needing treatment, likely time before that treatment, likely ability to achieve remission itself and then long term remission, etc. It no longer is an indicator of lifespan, so docs have gotten away from explaining it for the most part,

As I tell folks who get terrible markers (like me), it's all a likelihood, but not a certainty. So, put the info in your back pocket and move forward no matter the markers, b/c nothing is a guarantee with this disease. You could have great markers and end up in treatment after 1 year W&W or terrible ones and put off treatment for 10+ years - it's all just statistics, but we are each individuals and our disease will take an individual path.

[Jessielab in reply to MisfitK]

Thank you for your response. I had been up to very recently so terrified about my diagnosis that I haven't been asking too many questions.

But slowly I am getting the courage to take charge. Your answer is very helpful and I will ask about this on Feb 7, my next 4 month appointment.

Regards, Patrick

[lexie]

I was told my prognosis was favorable, meaning that I'd probably have a normal lifespan.

[CoachVera55]

I was diagnosed Aug 2009 & told the same, that its an ‘intermediate version’. I stayed in W&W for 13yrs 8mos. I love MisfitK’s explanation of it all being statics & our disease doesn’t read the book. I literally put my head in the sand for those W&W years because denial was easy. I took better care of myself but really no other protocol. I could not keep it in my head & still function at the high level I did as a Critical Nurse at 2 hospitals; either combo RWJBH, Newark Beth Israel then on to the Brooklyn VAMC.

My CLL got activated when Covid hit the scene 2020 my abdominal lymph nodes started growing & my lab numbers were changing after 10yrs of being stable. I got Covid April 2021 & I was sure I was dying from it. One hellava a Cytokine Storm, 103.8 fever that would not break & so much mucous production that my ribs & diaphragm were sore. I was on fire drowning 🙌🏾 I needed steroids & monoclonal antibodies. I don’t vaccinate & I don’t remove my mask & shield anywhere.

Its serious but manageable. You made a great decision by being here on this chat!

Reasons to start treatment

[Jessielab in reply to CoachVera55]

Thank you so much for your response. It gives me more optimism and helps me get my head out of the sand. I am 3 years since diagnosis and i have no symptoms at all. My oncologist won't let anyone go beyond 4 months between appointments.

I tend to be a hypochondriac and do well driving myself crazy. Edibles help calm me down. And this forum has been a real Godsend.

Thank you. Patrick

[CoachVera55 in reply to Jessielab]

I’m so glad my saga helped you. I use edibles too when I workout. I wasn’t able to workout since cBTKI therapy affected my heart & lungs. I am just back at it after 8 months & going steady. Edibles also decreases my appetite so its all good lol 😂

Edibles cooked by my Chef👨🏾‍🍳

[Agfar]

I was told that I had favourable markers 15 years ago and I am still in W&W. I had a steady rising of lymphocytes for 10 or so years and since then have been stable with similar numbers for about 5 years. Be active and eat well.

[G1llHa1n]

When I was diagnosed around ten years ago, the specialist told me that I might be one of the 30% or so of CLL patients who never need treatment.

I would understand that to be a 'favourable prognosis' - I'm still on active monitoring and yearly consultant checks and review - and was booked up last month for next December.

[Jessielab in reply to G1llHa1n]

I wish i could go year to year. I get really worked up before appointments. Ugh!

[G1llHa1n in reply to Jessielab]

I started on 3-monthly, was changed on to 6-monthly and on to yearly eventually - it all depends on the numbers and managing to stay out of the 'B symptoms'. Once they can see how you and your numbers are trending they can decide how long a leash you can be given at that stage.

I think most people do get concerned when it is coming up to appointments but most gradually manage to get used to them - and, let's face it, it is better to know what is and isn't going on - hopefully no nasty surprises that way. 🤟🤟🤟

[KirbyBH]

I don't know the technical issues however, I was told the same when diagnosed in 2005. Dr. said I could go 20 years or more and not need any treatment. I would probably die from something else not CLL. I am going to be 82 next month and it has been 18 1/2 years since my diagnosis. Only treatment I receive is twice a year visit to an oncologist and blood work. My CLL was a mutation and not something my kids could inherit. So good luck to you and I hope your future is great!

[Jessielab in reply to KirbyBH]

Congratulations on your good news. I am the years out now since diagnosis. 69 years and moving along very well I am. Thank you for your response. Good luck and good health.