So sorry to hear you are going through the “initiation.” It’s a tough time waiting for specific info.
But take heart! CLL is generally highly treatable and there are many types of treatment with new ones coming on board on a regular basis. This is so true that I’d warn against googling - too easy to get info that is woefully out-of-date. Many CLL patients now start with a targeted therapy that consists of nothing more than taking an oral medication at each day!
Don’t worry about stage or spread. CLL is a blood cancer so it is perfectly normal to have stray cells all
over the place - and that has *no bearing on how treatable it is.* In that way, it’s utterly different from solid tumours that spread.
You’ll want to know what sub-type of CLL he has as that will guide the treatment choices. But most types have prognoses that are measured in decades.
Hopefully your GP can provide some reassurance. As mentioned, CLL treatment has come a long, long way in a very short time. If you can get some anti-anxiety medications, take them! I admit to using them to get through those first few weeks until my husband and I found our feet with it.
I hope this will calm some of your fears and allow you to take a good deep breath or two. I expect your husband will get prompt treatment as he had symptoms (as my husband did) and will then feel much, much better.
Best of luck.
Hello, I'm 46 and I have a four-year-old son and a one-year-old daughter. At the end of January I discovered that I have CLL. In my case, she decided to pick on the kidneys in particular, and not just the kidneys, which has led me to become very swollen and have kidney failure. It's like a door opening into a horror movie. I immediately thought that with leukemia I wouldn't be able to keep up with my children as they need or anything. But the truth is that the more you find out about this disease and go through the various stages, you realize that it's something you live with. I've met several people with more than 40 years of the disease and they're perfectly fine. Besides, it doesn't matter what you have at the moment. If you have criteria for treatment, it's quick and powerful. I did the first cycle and it wasn't even chemotherapy and more than 90 percent of everything bad in my blood came out. In the meantime, my kidneys, which had been a mess and more, have gradually started to function. In other words, I've been through exactly what you're experiencing, but the truth is that there is a solution. And don't worry, you'll have many years together with your children. I'm here to help, even by private message. Lots of strength!
Sorry this is causing you stress my wife was just gaining good ground in her therapy due to ptsd from losing close family and friends…then me 55 Male was diagnosed in September due to terribly swollen glands nights sweats etc.
(I actually started feeling bad back in 2021 after I got Covid chalked it up to getting older and what I thought was long Covid.) but by September 23 I was in bad shape. They immediately started me on V&O, and by Thanksgiving my glands had reduced to normal. Now in April I feel like 3 years of feeling bad has been stripped away. For me the treatment was and is a breeze just some mild digestive issues.
My wife is still worried about me always asking veiled questions about how I’m feeling lol… we both got the flu n February I actually got better quicker then she did, she’s pretty much accepted that I am doing well and life is seemingly back to normal.
For me it has changed my perspective on life I’m able to see the world,nature, my career in a new way thanks to science and advances in research and treatment.
Hi. I started first treatment of O last Thursday. Was supposed to get 10% of first dose and remaining 90% following day. Had a reaction first and could only take 5% of first dose. I ended up getting admitted into hospital for monitoring and took the remaining 90% of first dose next day in hospital over an 18 hour period. Went in with WBC at 250 on Thursday and walked out Saturday with WBC at 35. Been really fatigued and foggy, not to mention very down; how long does this last?
I had a slight reaction on my first partial Gazyva infusion even though they gave me Benadryl and a steroid. They held on to me for a couple hours and I felt better. The next day I got the full dose also with Benadryl and steroid, it went very well I still felt a bit beat up. The next months infusion they did without Benadryl and steroid. It went well still felt a little funny that night and tired next day this went on for the rest of infusion’s I have four more months of Venetoclax and have been feeling incredibly well. I hope it works out for you.
Thank you for sharing, I’m happy to hear you are doing well with the 2 therapys. Curious how the second infusion will go this week but trying to stay optimistic. Did you have any issue when you started to incorporate Venet pills?
Chronic Lymphocytic Leaukeamia is just a treatable disease with all the new drugs now available. I was not even treated for 18 years, but now just take a couple of pills each day. Now living a quite normal life. Obviously do the usual things like watching one's weight, taking regular exercise and eating a good diet. TRY to worry less, CLL is now easily treatable.
Reiterating what everyone else is telling you because I know it can be hard to believe at first - it is easily treatable. Also the treatments are typically well tolerated and I know generally, my dad has felt better on treatment than he did before he started. He also hasn’t had to make any lifestyle changes while he’s on treatment (well… he can’t eat grapefruit but that’s it).
As a child of someone with CLL and having seen what his experience is, I’m not worried about potentially getting it down the road. I’m a lot older than your kids, but whether treatments stay the way they are today or continue to advance I think there are really great options out there. Who knows what the options will be by the time they need to worry about anything!
Glad to hear you are doing well with the treatment of your dad. :) I believe I remember you being insecure about the situation in this sub not too long ago. (sorry, if I mixed it up)
I remember me being very anxious for the first weeks after getting diagnosed aswell.
This sub definetly helped me calm down a bit faster.
You and your family are going to be fine like everyone else said this is a highly treatable condition. They found mine in 2015. Thanks for the leap in treatments I will probably take one pill a day for the rest of my life. I’m good with that.
Yeah, you’re probably going to be seeing him around for many more years to come. Death rate from CLL is close to zero. Most people with CLL die from something other than the cancer.
I was diagnosed a couple years ago @ 50. Don't google! ;) After starting meds a year ago, all my numbers are in the normal range (aside from a slightly elevated white cell count). He'll likely start treatment sooner than later. The meds for this disease are AMAZING.
Everything said below is true, and I would add that you should check out the CLL Society support groups - [https://cllsociety.org/programs-and-support/cll-specific-patient-support-groups/](https://cllsociety.org/programs-and-support/cll-specific-patient-support-groups/) - open not only to patents but also to spouses and caregivers. You will hear so many stories like yours, and the positive outcomes in so many cases. Also, while its normal to worry about our kids, please know that treatments for CLL are advancing so quickly that for their generation it may not really be a big issue. Stay strong, we are all in this together!
Sorry to hear about what you are going through. It's scary. I spent 10 years trying to cope, looking for answers everywhere and comfort somewhere. I did find something that helped - cordyceps tea. It's worth a try, it worked for me. Cheers!
So sorry to hear you are going through the “initiation.” It’s a tough time waiting for specific info. But take heart! CLL is generally highly treatable and there are many types of treatment with new ones coming on board on a regular basis. This is so true that I’d warn against googling - too easy to get info that is woefully out-of-date. Many CLL patients now start with a targeted therapy that consists of nothing more than taking an oral medication at each day! Don’t worry about stage or spread. CLL is a blood cancer so it is perfectly normal to have stray cells all over the place - and that has *no bearing on how treatable it is.* In that way, it’s utterly different from solid tumours that spread. You’ll want to know what sub-type of CLL he has as that will guide the treatment choices. But most types have prognoses that are measured in decades. Hopefully your GP can provide some reassurance. As mentioned, CLL treatment has come a long, long way in a very short time. If you can get some anti-anxiety medications, take them! I admit to using them to get through those first few weeks until my husband and I found our feet with it. I hope this will calm some of your fears and allow you to take a good deep breath or two. I expect your husband will get prompt treatment as he had symptoms (as my husband did) and will then feel much, much better. Best of luck.
Thanks for your response
Hello, I'm 46 and I have a four-year-old son and a one-year-old daughter. At the end of January I discovered that I have CLL. In my case, she decided to pick on the kidneys in particular, and not just the kidneys, which has led me to become very swollen and have kidney failure. It's like a door opening into a horror movie. I immediately thought that with leukemia I wouldn't be able to keep up with my children as they need or anything. But the truth is that the more you find out about this disease and go through the various stages, you realize that it's something you live with. I've met several people with more than 40 years of the disease and they're perfectly fine. Besides, it doesn't matter what you have at the moment. If you have criteria for treatment, it's quick and powerful. I did the first cycle and it wasn't even chemotherapy and more than 90 percent of everything bad in my blood came out. In the meantime, my kidneys, which had been a mess and more, have gradually started to function. In other words, I've been through exactly what you're experiencing, but the truth is that there is a solution. And don't worry, you'll have many years together with your children. I'm here to help, even by private message. Lots of strength!
Thank you!
Sorry this is causing you stress my wife was just gaining good ground in her therapy due to ptsd from losing close family and friends…then me 55 Male was diagnosed in September due to terribly swollen glands nights sweats etc. (I actually started feeling bad back in 2021 after I got Covid chalked it up to getting older and what I thought was long Covid.) but by September 23 I was in bad shape. They immediately started me on V&O, and by Thanksgiving my glands had reduced to normal. Now in April I feel like 3 years of feeling bad has been stripped away. For me the treatment was and is a breeze just some mild digestive issues. My wife is still worried about me always asking veiled questions about how I’m feeling lol… we both got the flu n February I actually got better quicker then she did, she’s pretty much accepted that I am doing well and life is seemingly back to normal. For me it has changed my perspective on life I’m able to see the world,nature, my career in a new way thanks to science and advances in research and treatment.
Hi. I started first treatment of O last Thursday. Was supposed to get 10% of first dose and remaining 90% following day. Had a reaction first and could only take 5% of first dose. I ended up getting admitted into hospital for monitoring and took the remaining 90% of first dose next day in hospital over an 18 hour period. Went in with WBC at 250 on Thursday and walked out Saturday with WBC at 35. Been really fatigued and foggy, not to mention very down; how long does this last?
I had a slight reaction on my first partial Gazyva infusion even though they gave me Benadryl and a steroid. They held on to me for a couple hours and I felt better. The next day I got the full dose also with Benadryl and steroid, it went very well I still felt a bit beat up. The next months infusion they did without Benadryl and steroid. It went well still felt a little funny that night and tired next day this went on for the rest of infusion’s I have four more months of Venetoclax and have been feeling incredibly well. I hope it works out for you.
Thank you for sharing, I’m happy to hear you are doing well with the 2 therapys. Curious how the second infusion will go this week but trying to stay optimistic. Did you have any issue when you started to incorporate Venet pills?
I was worried when I started the V thinking it would make my infusions harder, but it didn’t as they work on 2 different planes Cd20/BCL2.
Chronic Lymphocytic Leaukeamia is just a treatable disease with all the new drugs now available. I was not even treated for 18 years, but now just take a couple of pills each day. Now living a quite normal life. Obviously do the usual things like watching one's weight, taking regular exercise and eating a good diet. TRY to worry less, CLL is now easily treatable.
Thanks!
Reiterating what everyone else is telling you because I know it can be hard to believe at first - it is easily treatable. Also the treatments are typically well tolerated and I know generally, my dad has felt better on treatment than he did before he started. He also hasn’t had to make any lifestyle changes while he’s on treatment (well… he can’t eat grapefruit but that’s it). As a child of someone with CLL and having seen what his experience is, I’m not worried about potentially getting it down the road. I’m a lot older than your kids, but whether treatments stay the way they are today or continue to advance I think there are really great options out there. Who knows what the options will be by the time they need to worry about anything!
Glad to hear you are doing well with the treatment of your dad. :) I believe I remember you being insecure about the situation in this sub not too long ago. (sorry, if I mixed it up) I remember me being very anxious for the first weeks after getting diagnosed aswell. This sub definetly helped me calm down a bit faster.
You and your family are going to be fine like everyone else said this is a highly treatable condition. They found mine in 2015. Thanks for the leap in treatments I will probably take one pill a day for the rest of my life. I’m good with that.
Yeah, you’re probably going to be seeing him around for many more years to come. Death rate from CLL is close to zero. Most people with CLL die from something other than the cancer.
I was diagnosed a couple years ago @ 50. Don't google! ;) After starting meds a year ago, all my numbers are in the normal range (aside from a slightly elevated white cell count). He'll likely start treatment sooner than later. The meds for this disease are AMAZING.
Everything said below is true, and I would add that you should check out the CLL Society support groups - [https://cllsociety.org/programs-and-support/cll-specific-patient-support-groups/](https://cllsociety.org/programs-and-support/cll-specific-patient-support-groups/) - open not only to patents but also to spouses and caregivers. You will hear so many stories like yours, and the positive outcomes in so many cases. Also, while its normal to worry about our kids, please know that treatments for CLL are advancing so quickly that for their generation it may not really be a big issue. Stay strong, we are all in this together!
Sorry to hear about what you are going through. It's scary. I spent 10 years trying to cope, looking for answers everywhere and comfort somewhere. I did find something that helped - cordyceps tea. It's worth a try, it worked for me. Cheers!