CLL leukemia: Just diagnosed, what can be done?

Posted by kegraves @kegraves, Jun 6, 2022

Husband 84 just diagnosed with CLL,
Is this common in older people and what things are done to stop from progressing?? We are new to this site and this diagnosis..

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Hi @kegraves, let’s talk a little bit about CLL. To answer you question, it is common in older people but it can happen at any age. Our neighbor has it and he’s only in his early 30s. The good news, though it is a form of Leukemia which always puts fear in our hearts, it is a very slowly developing disease.
There are a number of treatment options but frequently, in the early stages there isn’t a need for any treatment. It’s often a watch and wait approach.

I found you a link to our Mayo Clinic website with information about CLL, how it develops, diagnosing the disease and treatments.
There are also several discussions in our forum from other members who have CLL
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428

CLL: Newly diagnosed https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/

Has your husband’s hematologist discussed treatments with him or the stage of his disease?

REPLY
@loribmt

Hi @kegraves, let’s talk a little bit about CLL. To answer you question, it is common in older people but it can happen at any age. Our neighbor has it and he’s only in his early 30s. The good news, though it is a form of Leukemia which always puts fear in our hearts, it is a very slowly developing disease.
There are a number of treatment options but frequently, in the early stages there isn’t a need for any treatment. It’s often a watch and wait approach.

I found you a link to our Mayo Clinic website with information about CLL, how it develops, diagnosing the disease and treatments.
There are also several discussions in our forum from other members who have CLL
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428

CLL: Newly diagnosed https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/

Has your husband’s hematologist discussed treatments with him or the stage of his disease?

Jump to this post

Thank you so much for replying too our message. We have been to our Hematologist the first time 2 weeks ago, and got the diagnosis . He said it is common in older adults, and doesn't appear that he will need any treatments at this time. Doing another blood test this week, and
see the Dr. on June 17th, regarding the results of this last blood test. He seemed positive that this is a chronic diagnosis , and no treat is necessary at this time but will have to do blood work
every 3 months and then 6months, to keep on top of this condition.
All post what he says after this June 17th meeting...

REPLY
@kegraves

Thank you so much for replying too our message. We have been to our Hematologist the first time 2 weeks ago, and got the diagnosis . He said it is common in older adults, and doesn't appear that he will need any treatments at this time. Doing another blood test this week, and
see the Dr. on June 17th, regarding the results of this last blood test. He seemed positive that this is a chronic diagnosis , and no treat is necessary at this time but will have to do blood work
every 3 months and then 6months, to keep on top of this condition.
All post what he says after this June 17th meeting...

Jump to this post

Hi @kegraves, I'd like to add my welcome. I've moved your discussion to the
Blood Cancers & Disorders support group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/

Along with @loribmt, I'd like to tag other members like @rip @sirbob @franchronic77 @eam32 @pike70 who have experience with chronic lymphocytic leukemia (CLL).

When CLL doesn't cause symptoms and doesn't show signs of getting worse, it is common to not need treatment right away. But I'm sure you and your husband have lots of questions as you prepare for the next appointment. This page on Mayo Clinic offers a great list to get you started: https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/diagnosis-treatment/drc-20352433
What do my test results mean?
Do I need treatment right away?
If I don't begin treatment right now, will that limit my treatment options in the future?
Should I undergo additional tests?
What are my treatment options?
What are the side effects associated with each treatment?
Is there one treatment that's strongly recommended for someone with my diagnosis?
How will treatment affect my daily life?
I have other health conditions. How can I best manage them together?

What questions might you have?

REPLY
@kegraves

Thank you so much for replying too our message. We have been to our Hematologist the first time 2 weeks ago, and got the diagnosis . He said it is common in older adults, and doesn't appear that he will need any treatments at this time. Doing another blood test this week, and
see the Dr. on June 17th, regarding the results of this last blood test. He seemed positive that this is a chronic diagnosis , and no treat is necessary at this time but will have to do blood work
every 3 months and then 6months, to keep on top of this condition.
All post what he says after this June 17th meeting...

Jump to this post

That’s very encouraging news from the hematologist.
I know ‘watch and wait’ can feel like something is always looming but truly, CLL generally progresses slowly. So try not to let this diagnosis hinder the normalcy of your lifestyles. ☺️
@colleenyoung, in her reply to you, posted some great questions you and your husband might want to ask the hematologist at the next appointment. Don’t hesitate to ask or share any concerns with the doctor about your husband’s diagnosis. Knowledge is power…and peace of mind.

Was your husband having any symptoms or was this just found through a routine checkup?

REPLY

just in a routine exam, he has only had an enlarged prostate that he takes a pill for, other than that he doesn't take
any medications.... always been healthy and active.. He does seem a little more tired than usual, but we live in Arizona, and the heat drains your energy....

REPLY

Hi my partner has been diagnosed with CLL the unmuted strain on the 22nd of April. His white blood d cell count is 175. I have heard about intravenous ozone therapy? Does anyone have any information regarding this and would it help if he gets the prosefure? Will it stimulate the growth of red blood cells and is it safe at all. There is so much misinformation on the Internet? Any information on to help build him immune system would also be appreciated. We have seen the doctor twice and he has postponed treatment to the 29 th of July.I did get the feeling that he will start treatment then?

REPLY

Let us know what treatment
he will be getting?? My husband recently diagnosed
with CLL leukemia, Dr said no treatments as yet, but going next Friday for our 2nd visit
To Dr. Did another set of blood tests, will find out the results of these tests..he was diagnosed a month ago 🙏🙏

REPLY

Hi @kegraves

Will do please do the same from your side. It would help to know what treatments are recommended. Maybe it's a new prosedure not yet introduced in South Africa.

Kind Regards and best of luck in your proses. 🙏
Pieter

REPLY
@pieter1961

Hi @kegraves

Will do please do the same from your side. It would help to know what treatments are recommended. Maybe it's a new prosedure not yet introduced in South Africa.

Kind Regards and best of luck in your proses. 🙏
Pieter

Jump to this post

I will definitely let you know when and if he starts receiving any treatments. Right now he doesn't seem to need any treatments. They are going to do monthly blood work for a baseline
basis, to see when any blood work changes and how fast. W have only seen the Dr. twice
so far, will see him again next month.

REPLY
@kegraves

Let us know what treatment
he will be getting?? My husband recently diagnosed
with CLL leukemia, Dr said no treatments as yet, but going next Friday for our 2nd visit
To Dr. Did another set of blood tests, will find out the results of these tests..he was diagnosed a month ago 🙏🙏

Jump to this post

Hi so my partner saw the oncologist on Friday. He is going to start treatment in 2 weeks. It will consist of a intravenous drip of Gazava and a daily tablet of Venetoclax. We don't know the details yet we will be informed as soon as the oncology Centre is ready to start.

REPLY
Please sign in or register to post a reply.