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.
I would agree. I have CCUS and I’m in a holding pattern until the end of January when I see my Doctor again. My neutrophils are generally .4 or so, I’ve had ITP for the last 20 years and I’ve got some abnormal cells in my bone marrow. (Nothing more specific than that) I never would have know I have this except I was having issues with my platelets and had a blood draw. My wbc was horribly low and that was in August. It has stayed low since.
Have no idea what is happening except to see my blood counts every week. My Doctor said at our next appointment I’ll meet with him and possibly the blood marrow failure Doctor. What? It’s very hard to deal with so much uncertainty. And also wearing a mask or skipping events, church or anything with a medium to large crowd.
I would agree. I have CCUS and I’m in a holding pattern until the end of January when I see my Doctor again. My neutrophils are generally .4 or so, I’ve had ITP for the last 20 years and I’ve got some abnormal cells in my bone marrow. (Nothing more specific than that) I never would have know I have this except I was having issues with my platelets and had a blood draw. My wbc was horribly low and that was in August. It has stayed low since.
Have no idea what is happening except to see my blood counts every week. My Doctor said at our next appointment I’ll meet with him and possibly the blood marrow failure Doctor. What? It’s very hard to deal with so much uncertainty. And also wearing a mask or skipping events, church or anything with a medium to large crowd.
Hi @mlameson,
I can certainly understand your frustration about having to wear masks. I use the KN95
masks . Sometimes I'll wear one which is easier to breath through, depending on the size of the crowd. I still attend my church meetings, take the sacrament. ( I have asked to have it passed to me first prior to other hands going in.) not really sure if it really makes a difference.
my neutrophil count has been as low as .1 and up to .5 . my paltelets fell to 13,000 and they gave me 1 unit of platelets last weekend. my white count is at 1.9 so its held its own for 4 days now.
My hope is that the Mayo Clinic will have answers soon, and simple solutions to correct the issue . Hopeing for better results next week on my CBC tests.
feel free to chat.
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
Thank you for your message, Patty. My bone marrow biopsy, that resulted in a CCUS diagnosis, was a result of having a low white blood cell count for almost a year. You mentioned anxiety can increase it. Perhaps I should become more anxious? Haha 😉
I’m trying to eat healthier, and I definitely need more sleep and exercise. I do wonder if there is anything that I can do to slow down the clonal aspect of the mutating gene. I will ask my hematologist, but I have a feeling it’s a big unknown.
There is so much that I want to get accomplished, but I become fatigued very easily. I can only take one day at a time and try to stay positive. I wish that I could take my family and travel the world. But alas, there is work and school that my family contends with, and we only have short windows of opportunity to take trips. I know that we should do what we can before my condition escalates.
Patty, what brought you to a MGUS diagnosis?
I would agree. I have CCUS and I’m in a holding pattern until the end of January when I see my Doctor again. My neutrophils are generally .4 or so, I’ve had ITP for the last 20 years and I’ve got some abnormal cells in my bone marrow. (Nothing more specific than that) I never would have know I have this except I was having issues with my platelets and had a blood draw. My wbc was horribly low and that was in August. It has stayed low since.
Have no idea what is happening except to see my blood counts every week. My Doctor said at our next appointment I’ll meet with him and possibly the blood marrow failure Doctor. What? It’s very hard to deal with so much uncertainty. And also wearing a mask or skipping events, church or anything with a medium to large crowd.
Thank you for your response. Just to confirm, you have your blood drawn every week? I think you’re extremely fortunate to not have any symptoms such as fatigue. I know that I’m definitely more susceptible to getting sick, and it’s lame considering I have a little one in Cub Scouts/grade school. I’m always asking him to wash his hands.
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.
How much time was there between your bone marrow biopsies? Is there a routine bone marrow biopsy schedule that doctors abide by (e.g. every two years, etc.)? I don’t look forward to the next, and my hematologist has not mentioned that I’d need another one….yet.
How much time was there between your bone marrow biopsies? Is there a routine bone marrow biopsy schedule that doctors abide by (e.g. every two years, etc.)? I don’t look forward to the next, and my hematologist has not mentioned that I’d need another one….yet.
I had a BMB in 1999, one in 2017, and 1 in 2022. I have a zoom meeting with
my Mayo Dr. on Jan. 17th to go over blood results from the Next Generation
Sequencing study.
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. I got my results back from the next generation sequencing that was done back
in September. Just showed a low level KM2TC at 2.5 which is less than it was with the
bone marrow biopsy. The ASXL1 didn't show up on the blood panel at all. I don't know what it all
means. Hopefully the remedy for my low counts is an easy fix. I'll find out this week.
Hello. I got my results back from the next generation sequencing that was done back
in September. Just showed a low level KM2TC at 2.5 which is less than it was with the
bone marrow biopsy. The ASXL1 didn't show up on the blood panel at all. I don't know what it all
means. Hopefully the remedy for my low counts is an easy fix. I'll find out this week.
I've had a diagnosis of Clonal Cytopenia of undetermined significance since 2018. (Biopsy and genetic sequencing panel proven genetic mutations). My WBC, ANC and platelets have been below normal since 2012. CCUS males one highly susceptible to myelodysplastic syndrome and AML. Does anyone else on this site have CCUS?
I've had a diagnosis of Clonal Cytopenia of undetermined significance since 2018. (Biopsy and genetic sequencing panel proven genetic mutations). My WBC, ANC and platelets have been below normal since 2012. CCUS males one highly susceptible to myelodysplastic syndrome and AML. Does anyone else on this site have CCUS?
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I would agree. I have CCUS and I’m in a holding pattern until the end of January when I see my Doctor again. My neutrophils are generally .4 or so, I’ve had ITP for the last 20 years and I’ve got some abnormal cells in my bone marrow. (Nothing more specific than that) I never would have know I have this except I was having issues with my platelets and had a blood draw. My wbc was horribly low and that was in August. It has stayed low since.
Have no idea what is happening except to see my blood counts every week. My Doctor said at our next appointment I’ll meet with him and possibly the blood marrow failure Doctor. What? It’s very hard to deal with so much uncertainty. And also wearing a mask or skipping events, church or anything with a medium to large crowd.
Hi @mlameson,
I can certainly understand your frustration about having to wear masks. I use the KN95
masks . Sometimes I'll wear one which is easier to breath through, depending on the size of the crowd. I still attend my church meetings, take the sacrament. ( I have asked to have it passed to me first prior to other hands going in.) not really sure if it really makes a difference.
my neutrophil count has been as low as .1 and up to .5 . my paltelets fell to 13,000 and they gave me 1 unit of platelets last weekend. my white count is at 1.9 so its held its own for 4 days now.
My hope is that the Mayo Clinic will have answers soon, and simple solutions to correct the issue . Hopeing for better results next week on my CBC tests.
feel free to chat.
Thank you for your message, Patty. My bone marrow biopsy, that resulted in a CCUS diagnosis, was a result of having a low white blood cell count for almost a year. You mentioned anxiety can increase it. Perhaps I should become more anxious? Haha 😉
I’m trying to eat healthier, and I definitely need more sleep and exercise. I do wonder if there is anything that I can do to slow down the clonal aspect of the mutating gene. I will ask my hematologist, but I have a feeling it’s a big unknown.
There is so much that I want to get accomplished, but I become fatigued very easily. I can only take one day at a time and try to stay positive. I wish that I could take my family and travel the world. But alas, there is work and school that my family contends with, and we only have short windows of opportunity to take trips. I know that we should do what we can before my condition escalates.
Patty, what brought you to a MGUS diagnosis?
Thank you for your response. Just to confirm, you have your blood drawn every week? I think you’re extremely fortunate to not have any symptoms such as fatigue. I know that I’m definitely more susceptible to getting sick, and it’s lame considering I have a little one in Cub Scouts/grade school. I’m always asking him to wash his hands.
How much time was there between your bone marrow biopsies? Is there a routine bone marrow biopsy schedule that doctors abide by (e.g. every two years, etc.)? I don’t look forward to the next, and my hematologist has not mentioned that I’d need another one….yet.
I had a BMB in 1999, one in 2017, and 1 in 2022. I have a zoom meeting with
my Mayo Dr. on Jan. 17th to go over blood results from the Next Generation
Sequencing study.
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Helpful -
Hug
2 ReactionsHello. I got my results back from the next generation sequencing that was done back
in September. Just showed a low level KM2TC at 2.5 which is less than it was with the
bone marrow biopsy. The ASXL1 didn't show up on the blood panel at all. I don't know what it all
means. Hopefully the remedy for my low counts is an easy fix. I'll find out this week.
-
Like -
Helpful -
Hug
2 ReactionsPlease keep us posted.
I've had a diagnosis of Clonal Cytopenia of undetermined significance since 2018. (Biopsy and genetic sequencing panel proven genetic mutations). My WBC, ANC and platelets have been below normal since 2012. CCUS males one highly susceptible to myelodysplastic syndrome and AML. Does anyone else on this site have CCUS?
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Helpful -
Hug
1 Reaction@audrey123
Welcome to Connect. There are members who share this diagnosis.
https://connect.mayoclinic.org/discussion/dose-anyone-else-have-ccus/
Some members who have posted CCUS threads are @j68eis and @mlarneson.
Since you were diagnosed in 218, has your CCUS progressed during that time or have you developed other symptoms?
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2 Reactions