You might want to discuss with your oncologist what to be alert to with regard to immunity. I am beginning to track down one item now. I was given a script and sample packs by an ophthalmologist of an eye drop that is an immunosuppressive agent. Thankfully I did not fill the expensive script until I saw if the sample packs of drops help. Now to check with my oncologist if they do help with "dry eye". I had come across a study that the life expectancy if someone with CLL gets an eye infection is measured in months.
Double thanks as I have dry eyes, as well. Since I learned that I’m allergic to dust, no eye infections but more incentive to keep up my nightly eye routine.🙏🏾
You might want to discuss with your oncologist what to be alert to with regard to immunity. I am beginning to track down one item now. I was given a script and sample packs by an ophthalmologist of an eye drop that is an immunosuppressive agent. Thankfully I did not fill the expensive script until I saw if the sample packs of drops help. Now to check with my oncologist if they do help with "dry eye". I had come across a study that the life expectancy if someone with CLL gets an eye infection is measured in months.
You also had this before your diagnosis and went about your business in your normal manner. I would suggest returning to that unless you encounter some new problems. One change is mentioning having CLL when filling out medical questionnaires. My oncologist did stress keeping up my immunity via vaccines.
The difference is that before, I ignored people when they said I pushed myself too hard. I didn’t listen to the fatigue or them. Now, my question to those of you who have been dealing with this for a while, does it make a difference to rest or is there no telling what causes the stages to advance?
I was diagnosed in March. So far, I know that I am Stage 1, but many of my blood numbers are in “normal range.” The Kaiser protocol appears to be “see you in a year” to check again. My wife got the oncologist to agree to checking in six months. Slowly, that punched in the gut feeling is being replaced but it all still feels overwhelming. I remind myself since it’s chronic, I need to find a new balance and that will take time. I want to be angry with someone, but I’m getting used to “sh#@ happens!” So, I’m checking out my holistic approach options in S.F, CA Bay Area to help my body be the best it can be and finding my way back to those activities I can still do, if I rest when there’s a need.
One curious thing. Did anyone else discover that their blood had been routinely being checked for leukemia for several years? Most of my tests said that there were no trends because this was the first test. But one said “Normal” for several years and only this time said “Leukemia.” (I just realized that they could have been checking for anything. Okay, still a mystery, but somehow an easier one to take. They could have been checking to see if hyperparathyroid condition had returned.). Back to waiting for my oncologist to decipher all the blood tests results that came in this week.
You also had this before your diagnosis and went about your business in your normal manner. I would suggest returning to that unless you encounter some new problems. One change is mentioning having CLL when filling out medical questionnaires. My oncologist did stress keeping up my immunity via vaccines.
I was diagnosed in March. So far, I know that I am Stage 1, but many of my blood numbers are in “normal range.” The Kaiser protocol appears to be “see you in a year” to check again. My wife got the oncologist to agree to checking in six months. Slowly, that punched in the gut feeling is being replaced but it all still feels overwhelming. I remind myself since it’s chronic, I need to find a new balance and that will take time. I want to be angry with someone, but I’m getting used to “sh#@ happens!” So, I’m checking out my holistic approach options in S.F, CA Bay Area to help my body be the best it can be and finding my way back to those activities I can still do, if I rest when there’s a need.
One curious thing. Did anyone else discover that their blood had been routinely being checked for leukemia for several years? Most of my tests said that there were no trends because this was the first test. But one said “Normal” for several years and only this time said “Leukemia.” (I just realized that they could have been checking for anything. Okay, still a mystery, but somehow an easier one to take. They could have been checking to see if hyperparathyroid condition had returned.). Back to waiting for my oncologist to decipher all the blood tests results that came in this week.
Yes, l was diagnosed in January of this year with CLL/SLL. Still working with the oncologist on my options. My levels are stable and have been informed l maybe be a trial candidate for the Venclexta and ? study. Don't know alot about this, but heard it's very encouraging, stay positive 👍
Welcome @em1959. The information I posted yesterday for @hikerny (Cliff), who was recently diagnosed with CLL, is also relevant for you. SLL and CLL are virtually identical except name depends on where the cancer cells are concentrated.
Here’s a link to the comment: https://connect.mayoclinic.org/comment/1277732/
Read through the comment and follow the links. I think you’ll find some helpful information to learn more about CLL.
It’s great that your levels have remained stable. Many people go years without treatment and some lucky ducks never require it. Do you have any specific questions about your diagnosis?
I asked my oncologist about trials that I have seen advertised. She advised against them. What would be the qualifications to be a trial candidate for one of the Venclexta (or other) studies?
Yes, l was diagnosed in January of this year with CLL/SLL. Still working with the oncologist on my options. My levels are stable and have been informed l maybe be a trial candidate for the Venclexta and ? study. Don't know alot about this, but heard it's very encouraging, stay positive 👍
I really appreciate all of the information above, especially all of the links from Lori. I was diagnosed with CLL a year ago. It was like a punch in the gut! Even though the oncologist said it was slow growing - all I could think of was people I knew who died of leukemia (she focused on "chronic" while I focused on "leukemia"). I have immersed in research and joined Mayo Clinic Connect, of course. I feel like I am a sponge for information on CLL (and other issues I have, like AFib). My CLL is Stage 0 and hope that will remain for many years. Although my counts fluctuate, I am stable. It is encouraging to read about others who have remained stable for many years.
I do not know what stage you are in or the nature of your CLL so this may or may not apply to you. Mine was diagnosed 2.5 years ago and is stable at stage 0. At my March biannual check-up, I was downgraded to yearly now with blood work biannually.
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Double thanks as I have dry eyes, as well. Since I learned that I’m allergic to dust, no eye infections but more incentive to keep up my nightly eye routine.🙏🏾
You might want to discuss with your oncologist what to be alert to with regard to immunity. I am beginning to track down one item now. I was given a script and sample packs by an ophthalmologist of an eye drop that is an immunosuppressive agent. Thankfully I did not fill the expensive script until I saw if the sample packs of drops help. Now to check with my oncologist if they do help with "dry eye". I had come across a study that the life expectancy if someone with CLL gets an eye infection is measured in months.
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Helpful -
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2 ReactionsThe difference is that before, I ignored people when they said I pushed myself too hard. I didn’t listen to the fatigue or them. Now, my question to those of you who have been dealing with this for a while, does it make a difference to rest or is there no telling what causes the stages to advance?
You also had this before your diagnosis and went about your business in your normal manner. I would suggest returning to that unless you encounter some new problems. One change is mentioning having CLL when filling out medical questionnaires. My oncologist did stress keeping up my immunity via vaccines.
-
Like -
Helpful -
Hug
4 ReactionsI was diagnosed in March. So far, I know that I am Stage 1, but many of my blood numbers are in “normal range.” The Kaiser protocol appears to be “see you in a year” to check again. My wife got the oncologist to agree to checking in six months. Slowly, that punched in the gut feeling is being replaced but it all still feels overwhelming. I remind myself since it’s chronic, I need to find a new balance and that will take time. I want to be angry with someone, but I’m getting used to “sh#@ happens!” So, I’m checking out my holistic approach options in S.F, CA Bay Area to help my body be the best it can be and finding my way back to those activities I can still do, if I rest when there’s a need.
One curious thing. Did anyone else discover that their blood had been routinely being checked for leukemia for several years? Most of my tests said that there were no trends because this was the first test. But one said “Normal” for several years and only this time said “Leukemia.” (I just realized that they could have been checking for anything. Okay, still a mystery, but somehow an easier one to take. They could have been checking to see if hyperparathyroid condition had returned.). Back to waiting for my oncologist to decipher all the blood tests results that came in this week.
-
Like -
Helpful -
Hug
2 ReactionsWelcome @em1959. The information I posted yesterday for @hikerny (Cliff), who was recently diagnosed with CLL, is also relevant for you. SLL and CLL are virtually identical except name depends on where the cancer cells are concentrated.
Here’s a link to the comment: https://connect.mayoclinic.org/comment/1277732/
Read through the comment and follow the links. I think you’ll find some helpful information to learn more about CLL.
It’s great that your levels have remained stable. Many people go years without treatment and some lucky ducks never require it. Do you have any specific questions about your diagnosis?
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Like -
Helpful -
Hug
1 ReactionI asked my oncologist about trials that I have seen advertised. She advised against them. What would be the qualifications to be a trial candidate for one of the Venclexta (or other) studies?
-
Like -
Helpful -
Hug
1 ReactionYes, l was diagnosed in January of this year with CLL/SLL. Still working with the oncologist on my options. My levels are stable and have been informed l maybe be a trial candidate for the Venclexta and ? study. Don't know alot about this, but heard it's very encouraging, stay positive 👍
-
Like -
Helpful -
Hug
3 ReactionsI really appreciate all of the information above, especially all of the links from Lori. I was diagnosed with CLL a year ago. It was like a punch in the gut! Even though the oncologist said it was slow growing - all I could think of was people I knew who died of leukemia (she focused on "chronic" while I focused on "leukemia"). I have immersed in research and joined Mayo Clinic Connect, of course. I feel like I am a sponge for information on CLL (and other issues I have, like AFib). My CLL is Stage 0 and hope that will remain for many years. Although my counts fluctuate, I am stable. It is encouraging to read about others who have remained stable for many years.
-
Like -
Helpful -
Hug
6 ReactionsI do not know what stage you are in or the nature of your CLL so this may or may not apply to you. Mine was diagnosed 2.5 years ago and is stable at stage 0. At my March biannual check-up, I was downgraded to yearly now with blood work biannually.
-
Like -
Helpful -
Hug
5 Reactions