Hi everyone
just read, read all the contributions I can see on this thread Including mine. I have not been active in so many things because my sister-in-law had five months ago and performance. It was the hospital and rehab. The most difficult part is that my brother is disabled, as is their only child with neurofibromatosis.. She was the glue that kept the family together and I live in a part of LA. This closest Santa Monica and they live out in the San Fernando Valley the drive on LA freeways if you’re lucky can be 20 minutes up to more than an hour depending on time of day and accidents, etc.
I have two hematologist one at Cedar Sinai in Los Angeles and the other one at Keck USC also in Los Angeles. I have my labs run every month which I think I said before, but the question has come up if you don’t feel a huge difference after the EPO injection how do you know when you should have it? I worry about say the silent effects And or affects that haven’t been discovered or told to me of a low hemoglobin Other than fatigue. However, what’s going on with my life Could make anyone tired.
At one point we thought if my hemoglobin is in the 10 I should take the injection. Then it was thought if it’s 9.5 or lower for the injection. Maybe it’s a combination of low hemoglobin with another marker that would indicate that you should take the EPO and not rely solely on my hemoglobin level. I do have what I consider semi severe osteoarthritis. Send flareup link to low hemoglobin? If so, what would Won think the number or the combination of levels would be?
The other thing I seem to have a copper level that runs around 200 which is high has anyone else had that? I also have normal iron but I have a high ferritin, not dangerously high.
Again, I want to thank everyone for their support and suggestions. Suzanne
Hello everyone. I'm just here to check in with how everyone is doing. I have more fatigue and I'm short of breath. My recent blood work (not in Boston, locally to see how things are going), showed my platelets are slowly getting lower. So I'm not happy about that but everything else still is in the normal ranges. Hope everyone is doing ok.
Hello everyone. I'm just here to check in with how everyone is doing. I have more fatigue and I'm short of breath. My recent blood work (not in Boston, locally to see how things are going), showed my platelets are slowly getting lower. So I'm not happy about that but everything else still is in the normal ranges. Hope everyone is doing ok.
Thank you @pixiesusan for the update. I'm sorry to hear of these recent developments. The unknown can be very scary and make us all feel alone. I hope you can continue to find support here and possibly among close friends and family. I also hope you may also feel some relief with meditation and breath work. Many apps are available to help with this. I particularly like Insight Timer. For me, it helps release some of the anxiety. Regarding your symptoms... you did say your only blood tests that have changed are your platelets. Wondering if your red blood cells, hemoglobin or hematocrit below normal?
Thank you @pixiesusan for the update. I'm sorry to hear of these recent developments. The unknown can be very scary and make us all feel alone. I hope you can continue to find support here and possibly among close friends and family. I also hope you may also feel some relief with meditation and breath work. Many apps are available to help with this. I particularly like Insight Timer. For me, it helps release some of the anxiety. Regarding your symptoms... you did say your only blood tests that have changed are your platelets. Wondering if your red blood cells, hemoglobin or hematocrit below normal?
Not yet; so far, only my platelets have gone down. The rest are still normal. I was diagnosed with CCUS in 2022, so it's been 2 years, but I read that many CCUS patients change to MDS within 5 years (give or take) of the diagnosis. However, I know that's not true for everyone.
Ah, honestly, I feel (so far) quite alone in this journey. My friends "don't really get it" because I look normal. My brother is supportive but lives 1500 miles away. My daughter, well, I am guessing she can't really face it, so she just ignores it - again, partly because I look normal.
I use the Calm app; I should use it more than I do; that's one of my goals. I walk my dog every day, a walk that is pretty and quiet and, therefore, relaxing.
No question, I have a ton of anxiety; I think about this disease every day. But some days, I can put it out of my mind (to some extent) and enjoy the day I have. On other days, I fail at that.
Just checking in on how everyone is doing. This is essentially my only support. I've tried to join some online support groups, but I never hear back from them. There are no groups around me. I am on some FB groups for MDS and over the past week or so a few people have said "goodbye." It's devastating for me. I just wish there was more support available.
I'm still doing well. My platelets are still lower now. I'm probably going to get bloodwork done this week (I have a standing order for it) to see if they have gone down further. Fingers crossed.
I hope everyone had a nice Thanksgiving and looking forward to the holidays.
Just checking in on how everyone is doing. This is essentially my only support. I've tried to join some online support groups, but I never hear back from them. There are no groups around me. I am on some FB groups for MDS and over the past week or so a few people have said "goodbye." It's devastating for me. I just wish there was more support available.
I'm still doing well. My platelets are still lower now. I'm probably going to get bloodwork done this week (I have a standing order for it) to see if they have gone down further. Fingers crossed.
I hope everyone had a nice Thanksgiving and looking forward to the holidays.
Good morning, @pixiesusan. I hope you had a lovely Thanksgiving. Our daughter flew down from Minneapolis to join us in Florida for a week over TG…that was the perfect way to kick off the holidays early. But I’m going to be in trouble I think…I already had to break out the elastic waisted pants! 😂
It’s interesting to read that your experience with some other support groups online is lackluster. I’ve been finding that lately too. I’m in a couple of groups for bone marrow transplants. We were all fairly active a couple of years ago but now, what used to be the most prolific group, sits idle. There’s one other person besides myself who tries to instigate a good discussion and it just fizzles again. We’re all still alive and kicking but interests are elsewhere? Not sure.
Anyway, I’m sorry you’re feeling abandoned!
You’re not alone here! ☺️ There’s always someone around to chat with. Your CCUS diagnosis isn’t common and members who share that blood condition aren’t numerous. But if you would just like have some good conversations, there are a bunch of other fun support groups in the forum that are always active!
These are just a few of the lighter conversations to pique your interest.
Good morning, @pixiesusan. I hope you had a lovely Thanksgiving. Our daughter flew down from Minneapolis to join us in Florida for a week over TG…that was the perfect way to kick off the holidays early. But I’m going to be in trouble I think…I already had to break out the elastic waisted pants! 😂
It’s interesting to read that your experience with some other support groups online is lackluster. I’ve been finding that lately too. I’m in a couple of groups for bone marrow transplants. We were all fairly active a couple of years ago but now, what used to be the most prolific group, sits idle. There’s one other person besides myself who tries to instigate a good discussion and it just fizzles again. We’re all still alive and kicking but interests are elsewhere? Not sure.
Anyway, I’m sorry you’re feeling abandoned!
You’re not alone here! ☺️ There’s always someone around to chat with. Your CCUS diagnosis isn’t common and members who share that blood condition aren’t numerous. But if you would just like have some good conversations, there are a bunch of other fun support groups in the forum that are always active!
These are just a few of the lighter conversations to pique your interest.
It sounds like you had a great Thanksgiving; I did, too, with family and my dog. Wow, thanks. That's a great list; I'll check some of those groups out, especially the pet group.
I have a standing order at the lab to get blood work whenever I walk in; my doctor wants me to do it about once a month. I often put it off another couple weeks because I don't always want to know (silly - I know). I don't ever know what to expect, but I more or less feel the same as I have for the past 8 months or so. Still tired, and I still have bone pain at night. My platelets have been inching down, but not to the point where they want to do any treatment since I'm doing ok right now.
It sounds like you had a great Thanksgiving; I did, too, with family and my dog. Wow, thanks. That's a great list; I'll check some of those groups out, especially the pet group.
I have a standing order at the lab to get blood work whenever I walk in; my doctor wants me to do it about once a month. I often put it off another couple weeks because I don't always want to know (silly - I know). I don't ever know what to expect, but I more or less feel the same as I have for the past 8 months or so. Still tired, and I still have bone pain at night. My platelets have been inching down, but not to the point where they want to do any treatment since I'm doing ok right now.
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?
Happy Healthy Holidays from Los Angeles to everyone,
As far as my CCUS, I have not changed anything. If my Hemoglobin goes below around 9.5 I have an EPO injection.
I am curious whether anyone else has an elevated copper level. I am also on Premarin and DHEA and have been for decades. My endocrinologist is investigating this; I see him Christmas week.
Then there is the question is it bound or unbound copper? Anyone else on Premarin?
again Happy Healthy holidays to all,
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Hi everyone
just read, read all the contributions I can see on this thread Including mine. I have not been active in so many things because my sister-in-law had five months ago and performance. It was the hospital and rehab. The most difficult part is that my brother is disabled, as is their only child with neurofibromatosis.. She was the glue that kept the family together and I live in a part of LA. This closest Santa Monica and they live out in the San Fernando Valley the drive on LA freeways if you’re lucky can be 20 minutes up to more than an hour depending on time of day and accidents, etc.
I have two hematologist one at Cedar Sinai in Los Angeles and the other one at Keck USC also in Los Angeles. I have my labs run every month which I think I said before, but the question has come up if you don’t feel a huge difference after the EPO injection how do you know when you should have it? I worry about say the silent effects And or affects that haven’t been discovered or told to me of a low hemoglobin Other than fatigue. However, what’s going on with my life Could make anyone tired.
At one point we thought if my hemoglobin is in the 10 I should take the injection. Then it was thought if it’s 9.5 or lower for the injection. Maybe it’s a combination of low hemoglobin with another marker that would indicate that you should take the EPO and not rely solely on my hemoglobin level. I do have what I consider semi severe osteoarthritis. Send flareup link to low hemoglobin? If so, what would Won think the number or the combination of levels would be?
The other thing I seem to have a copper level that runs around 200 which is high has anyone else had that? I also have normal iron but I have a high ferritin, not dangerously high.
Again, I want to thank everyone for their support and suggestions. Suzanne
Hello everyone. I'm just here to check in with how everyone is doing. I have more fatigue and I'm short of breath. My recent blood work (not in Boston, locally to see how things are going), showed my platelets are slowly getting lower. So I'm not happy about that but everything else still is in the normal ranges. Hope everyone is doing ok.
Susan
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1 ReactionThank you @pixiesusan for the update. I'm sorry to hear of these recent developments. The unknown can be very scary and make us all feel alone. I hope you can continue to find support here and possibly among close friends and family. I also hope you may also feel some relief with meditation and breath work. Many apps are available to help with this. I particularly like Insight Timer. For me, it helps release some of the anxiety. Regarding your symptoms... you did say your only blood tests that have changed are your platelets. Wondering if your red blood cells, hemoglobin or hematocrit below normal?
Not yet; so far, only my platelets have gone down. The rest are still normal. I was diagnosed with CCUS in 2022, so it's been 2 years, but I read that many CCUS patients change to MDS within 5 years (give or take) of the diagnosis. However, I know that's not true for everyone.
Ah, honestly, I feel (so far) quite alone in this journey. My friends "don't really get it" because I look normal. My brother is supportive but lives 1500 miles away. My daughter, well, I am guessing she can't really face it, so she just ignores it - again, partly because I look normal.
I use the Calm app; I should use it more than I do; that's one of my goals. I walk my dog every day, a walk that is pretty and quiet and, therefore, relaxing.
No question, I have a ton of anxiety; I think about this disease every day. But some days, I can put it out of my mind (to some extent) and enjoy the day I have. On other days, I fail at that.
Just checking in on how everyone is doing. This is essentially my only support. I've tried to join some online support groups, but I never hear back from them. There are no groups around me. I am on some FB groups for MDS and over the past week or so a few people have said "goodbye." It's devastating for me. I just wish there was more support available.
I'm still doing well. My platelets are still lower now. I'm probably going to get bloodwork done this week (I have a standing order for it) to see if they have gone down further. Fingers crossed.
I hope everyone had a nice Thanksgiving and looking forward to the holidays.
-
Like -
Helpful -
Hug
1 ReactionGood morning, @pixiesusan. I hope you had a lovely Thanksgiving. Our daughter flew down from Minneapolis to join us in Florida for a week over TG…that was the perfect way to kick off the holidays early. But I’m going to be in trouble I think…I already had to break out the elastic waisted pants! 😂
It’s interesting to read that your experience with some other support groups online is lackluster. I’ve been finding that lately too. I’m in a couple of groups for bone marrow transplants. We were all fairly active a couple of years ago but now, what used to be the most prolific group, sits idle. There’s one other person besides myself who tries to instigate a good discussion and it just fizzles again. We’re all still alive and kicking but interests are elsewhere? Not sure.
Anyway, I’m sorry you’re feeling abandoned!
You’re not alone here! ☺️ There’s always someone around to chat with. Your CCUS diagnosis isn’t common and members who share that blood condition aren’t numerous. But if you would just like have some good conversations, there are a bunch of other fun support groups in the forum that are always active!
These are just a few of the lighter conversations to pique your interest.
Have you visited “Just want to talk”? https://connect.mayoclinic.org/group/other/
You’ll find discussions like:
~Journaling, the right stuff for you?
https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
~What’s outside your picture window today https://connect.mayoclinic.org/discussion/whats-outside-of-your-picture-window-today/
~Let’s go walking! Join me for a virtual walking support group
https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/
~Do you have an inspiring or favorite quote to share?
https://connect.mayoclinic.org/discussion/do-you-have-an-inspiring-or-favorite-quote-to-share/
~How about a laugh (hopefully)? https://connect.mayoclinic.org/discussion/how-about-a-laugh-hopefully/
~ Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/
What pets can do: Health and healing
~ https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/
You mentioned having a blood work coming up this week. Are you feeling that there might be a change in the numbers?
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3 ReactionsIt sounds like you had a great Thanksgiving; I did, too, with family and my dog. Wow, thanks. That's a great list; I'll check some of those groups out, especially the pet group.
I have a standing order at the lab to get blood work whenever I walk in; my doctor wants me to do it about once a month. I often put it off another couple weeks because I don't always want to know (silly - I know). I don't ever know what to expect, but I more or less feel the same as I have for the past 8 months or so. Still tired, and I still have bone pain at night. My platelets have been inching down, but not to the point where they want to do any treatment since I'm doing ok right now.
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Helpful -
Hug
1 ReactionHi @pixiesusan. How are you feeling this week? Did you go in for labs since the last time we chatted?
@pixiesusan @audreyl23 @sjjs @1dgrab @j68eis @thipley, just checking in. How are you doing?
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?
Happy Healthy Holidays from Los Angeles to everyone,
As far as my CCUS, I have not changed anything. If my Hemoglobin goes below around 9.5 I have an EPO injection.
I am curious whether anyone else has an elevated copper level. I am also on Premarin and DHEA and have been for decades. My endocrinologist is investigating this; I see him Christmas week.
Then there is the question is it bound or unbound copper? Anyone else on Premarin?
again Happy Healthy holidays to all,