As Lori mentioned, CCUS is a condition in which a person has a low blood count—a low level of certain kinds of blood cells—without an apparent cause, and a portion of the blood cells carry an acquired genetic mutation. It appears that gene mutations were found in your case.
Does the discovery of these genetic mutations help your team find better treatments that are most effective for you?
As Lori mentioned, CCUS is a condition in which a person has a low blood count—a low level of certain kinds of blood cells—without an apparent cause, and a portion of the blood cells carry an acquired genetic mutation. It appears that gene mutations were found in your case.
Does the discovery of these genetic mutations help your team find better treatments that are most effective for you?
I haven't got any results back yet. I just need to know, is it possible for the new covid vaccine to
lower my platelet? I would really like to know prior to getting the jab.
I haven't got any results back yet. I just need to know, is it possible for the new covid vaccine to
lower my platelet? I would really like to know prior to getting the jab.
Hello @j68eis I’m not sure you saw this reply that I posted earlier but it addresses your concerns of previous discussions you started for low platelets due to covid vaccinations and Eliquis with informational articles on both.
This is a link to my post: https://connect.mayoclinic.org/comment/938928/
No one would be able to predict what you’ll experience if you get the vaccination or whether it will further decrease your platelet level. Members in the forum aren’t able to diagnose or offer treatment recommendations.
Getting the vaccination is a decision you should make with the help of your hematologist after discussing your concerns. You mentioned that you have a hematologist at Mayo. I know from experience that their doctors work together with patients to make the best informed decision. So if this were me, I’d feel pretty comfortable with what they recommended.
I CCUS and I’m waiting to see how serious it is. While I wait, because of the possibility of infection, I take my blood count every week and never know if I can be part of a group, see people or need to isolate. It’s very frustrating.
I CCUS and I’m waiting to see how serious it is. While I wait, because of the possibility of infection, I take my blood count every week and never know if I can be part of a group, see people or need to isolate. It’s very frustrating.
@mlarneson Welcome to Mayo Clinic Connect. Honestly, I had to go look this condition up!
What are your doctors saying about the situation you are in? There is an article from ASH Clinical News, linked here, for you to look at. It is my thought that you take all precautions those of us with compromised systems need to take: hand sanitizer, social distancing, masking, washing hands frequently, avoiding crowds/those who do not want to take similar precautions. https://ashpublications.org/ashclinicalnews/news/6306/Clonal-Cytopenia-of-Unknown-Significance-To-Treat
When do you see the docto next?
Ginger
I CCUS and I’m waiting to see how serious it is. While I wait, because of the possibility of infection, I take my blood count every week and never know if I can be part of a group, see people or need to isolate. It’s very frustrating.
I see him January 31. He needs to consult with other Doctors and monitor my blood draws. I saw him the beginning of October. This has been going on since mid August. They trying to figure out how and when to do treatment. Which is what CCUS is. They’ve tried all the tests and it’s difficult to pinpoint the right thing to do at the right time. My Doctor gave me guidelines depending on my numbers. I’m struggling with the holidays and knowing I can’t do some of the activities but need to see my kids and grandkids. Most of this issue is me wanting a clear answer to what I should do and this isn’t a clear situation!
The article you recommended is one I saw online and is my guideline for understanding all this. It’s great.
I CCUS and I’m waiting to see how serious it is. While I wait, because of the possibility of infection, I take my blood count every week and never know if I can be part of a group, see people or need to isolate. It’s very frustrating.
Hello. I was diagnosed at age 49 with CCUS back in September after a bone marrow biopsy. I was found to have a low level mutation in my KMT2C gene. I’m supposed to follow-up with my doctor every six months for an exam and bloodwork. It’s a “wait and see” thing for me. There has been no other treatment recommended. I’m going to follow-up with him or his nurse to see if I should be avoiding anything. I have been given no instructions or counseling, and I’m scared. Will I be around for my son to graduate from high school, to see him get married, and to have children? Is dying early inevitable from cancer, a heart attack, MDS or AML? 😔
Hello @thipley, welcome to the forum. I had to look up CCUS. Can’t address risk except to say that at least what I read was promising for you that there is very low risk for advancement to a malignancy. And since I am definitely not an expert, I hope that is solid information. What Dr Google tells you is definitely confusing sometimes.
I have MGUS (Monoclonal gammopathy of undetermined significance) which is similar only in that we “watch and wait” to see what those pesky M proteins in my blood do. Like for you, the fear is that I will develop a malignant condition.
It is scary to get such a diagnoses and I imagine your worry in response is shared by all of us who must be monitored to ensure that we are not progressing to Cancer. It seems like such a passive response to just wait and see. I was diagnosed three years ago and so far so good.
I just want to assure you that you are not alone. There are some things you can control that I would like to share.
Find a good hematologist/oncologist who takes the time to answer all of your questions. There are no dumb questions. Write yours down for your appointments. If your doc doesn’t take sufficient time you are with the wrong doc.
Eat healthy, get sleep and exercise.
Live your life. Once you have the information you are seeking, tuck away worries about what will happen. Plan that birthday, go on that trip, attend all the excruciatingly long band recitals…(maybe that’s just me). Be present in the moment.
If you find you just can’t calm yourself, talk to a good therapist or medical social worker. Anxiety will literally increase your white count and you might even feel sick. It’s not your friend.
Hugs, my new friend. I wish you good health and good fortune.
Patty
Hello. I was diagnosed at age 49 with CCUS back in September after a bone marrow biopsy. I was found to have a low level mutation in my KMT2C gene. I’m supposed to follow-up with my doctor every six months for an exam and bloodwork. It’s a “wait and see” thing for me. There has been no other treatment recommended. I’m going to follow-up with him or his nurse to see if I should be avoiding anything. I have been given no instructions or counseling, and I’m scared. Will I be around for my son to graduate from high school, to see him get married, and to have children? Is dying early inevitable from cancer, a heart attack, MDS or AML? 😔
Hi @thipley
I have 2 mild mutations as well the KMT2C and ASXL1. I am still waiting for for results on
my Next Generation Sequencing. I Hope it comes back soon. I may have had these mutations for years. my history consists of 3 lymph node biopsies, and 3 bone marrow biopsies. the latest of which indicated the low level mutations. I, like you, am concerned and scared. my white count is 1.9, neutrophils are .2 and platelets at 68,000 . Whats really odd to me is that in February of this year all of my blood counts were normal. first time in 28 years.
I pray every day that those counts will increase again, and that the Mayo clinic will receive
answers soon. Until then CBC tests are the norm. I wish there were instructions for people like us. Some kind of guide as to what to do. I get so tired of wearing masks every where I go.
Connect
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Hi @j68eis, I see that @loribmt replied with helpful information about Clonal Cytopenia of Undetermined Significance (CCUS) in this discussion about low blood counts https://connect.mayoclinic.org/comment/934574/.
As Lori mentioned, CCUS is a condition in which a person has a low blood count—a low level of certain kinds of blood cells—without an apparent cause, and a portion of the blood cells carry an acquired genetic mutation. It appears that gene mutations were found in your case.
Does the discovery of these genetic mutations help your team find better treatments that are most effective for you?
I haven't got any results back yet. I just need to know, is it possible for the new covid vaccine to
lower my platelet? I would really like to know prior to getting the jab.
-
Like -
Helpful -
Hug
1 ReactionHello @j68eis I’m not sure you saw this reply that I posted earlier but it addresses your concerns of previous discussions you started for low platelets due to covid vaccinations and Eliquis with informational articles on both.
This is a link to my post: https://connect.mayoclinic.org/comment/938928/
No one would be able to predict what you’ll experience if you get the vaccination or whether it will further decrease your platelet level. Members in the forum aren’t able to diagnose or offer treatment recommendations.
Getting the vaccination is a decision you should make with the help of your hematologist after discussing your concerns. You mentioned that you have a hematologist at Mayo. I know from experience that their doctors work together with patients to make the best informed decision. So if this were me, I’d feel pretty comfortable with what they recommended.
-
Like -
Helpful -
Hug
1 ReactionI CCUS and I’m waiting to see how serious it is. While I wait, because of the possibility of infection, I take my blood count every week and never know if I can be part of a group, see people or need to isolate. It’s very frustrating.
-
Like -
Helpful -
Hug
1 Reaction@mlarneson Welcome to Mayo Clinic Connect. Honestly, I had to go look this condition up!
What are your doctors saying about the situation you are in? There is an article from ASH Clinical News, linked here, for you to look at. It is my thought that you take all precautions those of us with compromised systems need to take: hand sanitizer, social distancing, masking, washing hands frequently, avoiding crowds/those who do not want to take similar precautions.
https://ashpublications.org/ashclinicalnews/news/6306/Clonal-Cytopenia-of-Unknown-Significance-To-Treat
When do you see the docto next?
Ginger
-
Like -
Helpful -
Hug
1 ReactionI see him January 31. He needs to consult with other Doctors and monitor my blood draws. I saw him the beginning of October. This has been going on since mid August. They trying to figure out how and when to do treatment. Which is what CCUS is. They’ve tried all the tests and it’s difficult to pinpoint the right thing to do at the right time. My Doctor gave me guidelines depending on my numbers. I’m struggling with the holidays and knowing I can’t do some of the activities but need to see my kids and grandkids. Most of this issue is me wanting a clear answer to what I should do and this isn’t a clear situation!
The article you recommended is one I saw online and is my guideline for understanding all this. It’s great.
Hi @mlarneson, I add my welcome. I moved your question to this similar discussion:
- Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
https://connect.mayoclinic.org/discussion/dose-anyone-else-have-ccus/
I did this so you can more easily connect with other members living with CCUS like @pamrod02 and @j68eis among others.
-
Like -
Helpful -
Hug
1 ReactionHello. I was diagnosed at age 49 with CCUS back in September after a bone marrow biopsy. I was found to have a low level mutation in my KMT2C gene. I’m supposed to follow-up with my doctor every six months for an exam and bloodwork. It’s a “wait and see” thing for me. There has been no other treatment recommended. I’m going to follow-up with him or his nurse to see if I should be avoiding anything. I have been given no instructions or counseling, and I’m scared. Will I be around for my son to graduate from high school, to see him get married, and to have children? Is dying early inevitable from cancer, a heart attack, MDS or AML? 😔
-
Like -
Helpful -
Hug
2 ReactionsHello @thipley, welcome to the forum. I had to look up CCUS. Can’t address risk except to say that at least what I read was promising for you that there is very low risk for advancement to a malignancy. And since I am definitely not an expert, I hope that is solid information. What Dr Google tells you is definitely confusing sometimes.
I have MGUS (Monoclonal gammopathy of undetermined significance) which is similar only in that we “watch and wait” to see what those pesky M proteins in my blood do. Like for you, the fear is that I will develop a malignant condition.
It is scary to get such a diagnoses and I imagine your worry in response is shared by all of us who must be monitored to ensure that we are not progressing to Cancer. It seems like such a passive response to just wait and see. I was diagnosed three years ago and so far so good.
I just want to assure you that you are not alone. There are some things you can control that I would like to share.
Find a good hematologist/oncologist who takes the time to answer all of your questions. There are no dumb questions. Write yours down for your appointments. If your doc doesn’t take sufficient time you are with the wrong doc.
Eat healthy, get sleep and exercise.
Live your life. Once you have the information you are seeking, tuck away worries about what will happen. Plan that birthday, go on that trip, attend all the excruciatingly long band recitals…(maybe that’s just me). Be present in the moment.
If you find you just can’t calm yourself, talk to a good therapist or medical social worker. Anxiety will literally increase your white count and you might even feel sick. It’s not your friend.
Hugs, my new friend. I wish you good health and good fortune.
Patty
-
Like -
Helpful -
Hug
6 ReactionsHi @thipley
I have 2 mild mutations as well the KMT2C and ASXL1. I am still waiting for for results on
my Next Generation Sequencing. I Hope it comes back soon. I may have had these mutations for years. my history consists of 3 lymph node biopsies, and 3 bone marrow biopsies. the latest of which indicated the low level mutations. I, like you, am concerned and scared. my white count is 1.9, neutrophils are .2 and platelets at 68,000 . Whats really odd to me is that in February of this year all of my blood counts were normal. first time in 28 years.
I pray every day that those counts will increase again, and that the Mayo clinic will receive
answers soon. Until then CBC tests are the norm. I wish there were instructions for people like us. Some kind of guide as to what to do. I get so tired of wearing masks every where I go.
-
Like -
Helpful -
Hug
5 Reactions