It is a busy time of year, and by nature, I like a good bit of alone time to recharge. I've put that on hold until the New Year. Every week, a lot is going on. I've had trouble with energy for a couple of years now, I don't think it's worse, but with all the activities, I often feel exhausted.
My platelets are still lower but not in a zone where they want to treat them. They keep telling me that I'm doing well (working, seeing family and friends, walking the dog), but since I don't bleed due to low platelets, they would rather not do anything yet. I'm going to try to get blood work this week, so all of the above may change depending on what the tests say.
@SSJS I'm not taking anything right now, and I don't know anything about my copper. How did you find that out? Would that show up in regular blood work?
This can be a busy time of year with family, gatherings and commitments. How does CCUS affect how you prepare for the holidays? Have you found activities that allow you to pace yourself?
Thank you for reaching out, and checking on those of us that have CCUS.
I for one am doing fine. My last BMB didn't show the mutations that showed up in the 2023 BMB. My numbers are still low but continue to remain stable. My hematologist at the Mayo
clinic in Phoenix mentioned to me that "If the past portends the future that this is something I've probably always had." I go to my regular hematologist for monthly labs, and will be going for another BMB at the Mayo Clinic sometime in June or July. Just as precautionary measure to see
if things are still stable. I continue to wear a mask in overly crowded areas.and will definitely
wear one on our cruise In March/April. I find myself not worrying to much about something I
have no control over.
I wish others in this group a very Merry Christmas and a Healthy and Happy New Year.
Just dropping in to offer some empathy. Annual exam showed my blood counts dropped in 2019 and 2020. Scans and bone marrow biopsies showed nothing definitive but continuous pancytopenia (low WBC, platelets, Neu & LY) eventually diagnosed as CCUS. Like others I'm just on regular CBCs (quarterly in my case) and observation.
FWIW, discovered my WBC almost doubles post intensive workout so gym membership pays off! Bad news is that the effect is temporary.
Discussed with my oncologist/hematologist getting NGS done but not sure it's worth the (high) cost given the lack of treatment options. Any advice on value of getting NGS done?
I have CCUS with only the TET2 mutation, but with a VAF of 86%. Low white blood cells. No anemia. My blasts are only at 2%. Started in 2020 just after a bad bout with COVID. I wear masks a lot, wash hands a lot and follow a neutropenic diet. I have found YouTube recordings from the Healthtree and MDS Foundations to be very helpful to understand the situation. Vanderbilt has a biorepository for CCUS and CHIP folks (CHIVE) I am starting to feel tired and have night sweats. Have seen one clinical trial for CCUS, but the medicine has a side effect of lowering white blood cells. Wish there was something to do for it.
BTW, For the past several years I have used Google to search for CCUS information. It was only when I started using AI to research that I was able to find so much more information. I do not rely on the information that AI produces, but I go to the underlying research that it utilized. There is actually a lot of information out there. Just not a solution yet.
Just dropping in to offer some empathy. Annual exam showed my blood counts dropped in 2019 and 2020. Scans and bone marrow biopsies showed nothing definitive but continuous pancytopenia (low WBC, platelets, Neu & LY) eventually diagnosed as CCUS. Like others I'm just on regular CBCs (quarterly in my case) and observation.
FWIW, discovered my WBC almost doubles post intensive workout so gym membership pays off! Bad news is that the effect is temporary.
Discussed with my oncologist/hematologist getting NGS done but not sure it's worth the (high) cost given the lack of treatment options. Any advice on value of getting NGS done?
Hi @nigel7 and welcome to Connect! So glad you dropped into the conversation to share your experience with CCUS.
I can sure appreciate your desire to learn as much as you can about the condition. So it’s a good question about whether or not it’s worth the cost of having next generation sequencing panels run. It’s difficult to know if the results would give any valuable information vs the cost. It often helps to have a sounding board, so hopefully other members will share their opinions on NGS.
Doc said honestly, it's hard for him to recommend NGS because although results will probably give interesting insight he doubts that it will lead to any specific treatment right now. I guess that's why my insurance doesn't pay for it.
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It is a busy time of year, and by nature, I like a good bit of alone time to recharge. I've put that on hold until the New Year. Every week, a lot is going on. I've had trouble with energy for a couple of years now, I don't think it's worse, but with all the activities, I often feel exhausted.
My platelets are still lower but not in a zone where they want to treat them. They keep telling me that I'm doing well (working, seeing family and friends, walking the dog), but since I don't bleed due to low platelets, they would rather not do anything yet. I'm going to try to get blood work this week, so all of the above may change depending on what the tests say.
@SSJS I'm not taking anything right now, and I don't know anything about my copper. How did you find that out? Would that show up in regular blood work?
At any rate, happy, healthy holidays to everyone!
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Helpful -
Hug
2 ReactionsThank you for reaching out, and checking on those of us that have CCUS.
I for one am doing fine. My last BMB didn't show the mutations that showed up in the 2023 BMB. My numbers are still low but continue to remain stable. My hematologist at the Mayo
clinic in Phoenix mentioned to me that "If the past portends the future that this is something I've probably always had." I go to my regular hematologist for monthly labs, and will be going for another BMB at the Mayo Clinic sometime in June or July. Just as precautionary measure to see
if things are still stable. I continue to wear a mask in overly crowded areas.and will definitely
wear one on our cruise In March/April. I find myself not worrying to much about something I
have no control over.
I wish others in this group a very Merry Christmas and a Healthy and Happy New Year.
-
Like -
Helpful -
Hug
2 ReactionsJust dropping in to offer some empathy. Annual exam showed my blood counts dropped in 2019 and 2020. Scans and bone marrow biopsies showed nothing definitive but continuous pancytopenia (low WBC, platelets, Neu & LY) eventually diagnosed as CCUS. Like others I'm just on regular CBCs (quarterly in my case) and observation.
FWIW, discovered my WBC almost doubles post intensive workout so gym membership pays off! Bad news is that the effect is temporary.
Discussed with my oncologist/hematologist getting NGS done but not sure it's worth the (high) cost given the lack of treatment options. Any advice on value of getting NGS done?
-
Like -
Helpful -
Hug
1 ReactionI have CCUS with only the TET2 mutation, but with a VAF of 86%. Low white blood cells. No anemia. My blasts are only at 2%. Started in 2020 just after a bad bout with COVID. I wear masks a lot, wash hands a lot and follow a neutropenic diet. I have found YouTube recordings from the Healthtree and MDS Foundations to be very helpful to understand the situation. Vanderbilt has a biorepository for CCUS and CHIP folks (CHIVE) I am starting to feel tired and have night sweats. Have seen one clinical trial for CCUS, but the medicine has a side effect of lowering white blood cells. Wish there was something to do for it.
BTW, For the past several years I have used Google to search for CCUS information. It was only when I started using AI to research that I was able to find so much more information. I do not rely on the information that AI produces, but I go to the underlying research that it utilized. There is actually a lot of information out there. Just not a solution yet.
-
Like -
Helpful -
Hug
1 ReactionHi @nigel7 and welcome to Connect! So glad you dropped into the conversation to share your experience with CCUS.
I can sure appreciate your desire to learn as much as you can about the condition. So it’s a good question about whether or not it’s worth the cost of having next generation sequencing panels run. It’s difficult to know if the results would give any valuable information vs the cost. It often helps to have a sounding board, so hopefully other members will share their opinions on NGS.
I recently read an article on CCUS that I bookmarked. You might be interested in read it too. Here’s the link to AHS Publications article on CCUS: To treat or not to treat. https://ashpublications.org/ashclinicalnews/news/6306/clonal-cytopenia-of-unknown-significance-to-treat
Have you discussed the usefulness of having an NGS done at this time with your hematologist?
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1 ReactionThanks @loribmt
Doc said honestly, it's hard for him to recommend NGS because although results will probably give interesting insight he doubts that it will lead to any specific treatment right now. I guess that's why my insurance doesn't pay for it.
I'll read the article though!