I’ve had it for approximately 3+ years. Had a flare up low hemoglobin (6) 4 infusions of Ribitoux (?) and then things changed for the good. Monthly blood tests went to every three months. My first 2 years I had (2) MRIs checking on lymph node size, except for my flare up, things are looking good at this point in time. My Doctor says I’m doing well BUT she also says it can come back in a not good way. That’s why the word chronic (CLL) is used. So waiting for the next blood test is rather worrisome but all I can do is just deal with it. Having a positive attitude is good for me. No loss of weight, good appetite, not tired but I do have very slight night sweats that my Doctor is not worried about at this point in time.
All I can say is follow your Doctor’s advice. If one isn’t comfortable with the advice then find another doctor or hospital for a second opinion. I am very happy with my doctor. After being diagnosed with CLL it was dormant (for lack of a better word) for 2/3 years then I had a flare up. After treatment and blood tests it is now not an issue. But that doesn’t mean it won’t become an issue in the future. Having a doctor you know/like/believe in is a good start. I’m not recommending any doctor or hospital but one has to find a doctor they can believe/trust. I have that so I just trust her. So, I just keep a positive attitude hope for the best. Having CLL is not a good condition to have but having a positive attitude is a good thing to have and each person who has CLL can control their attitude. BE POSITIVE.
I have an excellent doctor that I trust also which I think keeps me positive. I am in the Wait and Watch period right now. Sounds like you are doing well now I hope that continues for you. Are you in the US? I am in Canada God Bless
@momh, welcome. It can sometimes be distressing when the recommended treatment is "watch and wait". People may equate this with "doing nothing," which is why I personally prefer the term "active surveillance," which implies careful monitoring.
How is your close relative doing? Do you have any questions about living CLL?
All I can say is follow your Doctor’s advice. If one isn’t comfortable with the advice then find another doctor or hospital for a second opinion. I am very happy with my doctor. After being diagnosed with CLL it was dormant (for lack of a better word) for 2/3 years then I had a flare up. After treatment and blood tests it is now not an issue. But that doesn’t mean it won’t become an issue in the future. Having a doctor you know/like/believe in is a good start. I’m not recommending any doctor or hospital but one has to find a doctor they can believe/trust. I have that so I just trust her. So, I just keep a positive attitude hope for the best. Having CLL is not a good condition to have but having a positive attitude is a good thing to have and each person who has CLL can control their attitude. BE POSITIVE.
@loribmt
My blood pressure was very low so my daughter took me to the doctor and after blood test they suggested that I go to the hospital. My white blood cell count was 97000 they called a hemotogist and he told me that I have CLL, my hemotologist at home told me nothing and I saw him two weeks before we went to Germany and my white blood cell count was 87000.
@whatshallido59 Quite frankly, I really think you should be contacting a doctor soon to get some confirming tests to see what might be causing your elevated white blood counts and verify if you have CLL as noted by the doctor in the ER. It’s up to you whether you see your current doctor or seek a 2nd opinion elsewhere. But it’s important to have this checked out.
You mentioned you already have have a hematologist, is this someone you see for another blood condition?
Welcome to Connect, | @whatshallido59 |
Your original post in another group mentioned: “I have been diagnosed with cronic lukemia is there any one that has the same.” I thought I’d bring you right over to this CLL (Chronic lymphocytic leukemia) support group so that you could meet up with some of the members who also have CLL.
If you wouldn’t mind sharing a little more about yourself, when were you diagnosed with the Chronic lymphocytic leukemia? What has your hematologist told you about your disease? CLL tends to be a very slowly developing form of leukemia and often patients can go years without any treatment. Are you in a watch and wait period or are you expected to start some treatments?
@loribmt
My blood pressure was very low so my daughter took me to the doctor and after blood test they suggested that I go to the hospital. My white blood cell count was 97000 they called a hemotogist and he told me that I have CLL, my hemotologist at home told me nothing and I saw him two weeks before we went to Germany and my white blood cell count was 87000.
@whatshallido59 With your recent diagnosis of CLL, you must have a lot of questions. As I mentioned earlier, we have several members in Connect who also have Chronic lymphocytic leukemia. There are many discussions in the group with a great deal of information linked in the conversations.
In this current discussion, where your comment is posted, if you reverse the order of the replies (you can do that easily by clicking the Oldest to Newest button under the opening paragraph) you’ll be back at the beginning of the comments for this discussion. There are several with great links to information about CLL.
Each person’s unique in their CLL journey and it’s important to have a hematologist/oncologist who specializes in blood disorders working with you.
Since your diagnosis was while you were in Germany, now that you’re back home, have you contacted a local hematologist/oncologist?
Welcome to Connect, | @whatshallido59 |
Your original post in another group mentioned: “I have been diagnosed with cronic lukemia is there any one that has the same.” I thought I’d bring you right over to this CLL (Chronic lymphocytic leukemia) support group so that you could meet up with some of the members who also have CLL.
If you wouldn’t mind sharing a little more about yourself, when were you diagnosed with the Chronic lymphocytic leukemia? What has your hematologist told you about your disease? CLL tends to be a very slowly developing form of leukemia and often patients can go years without any treatment. Are you in a watch and wait period or are you expected to start some treatments?
Connect
Connect
Like
Helpful
Hug
I’ve had it for approximately 3+ years. Had a flare up low hemoglobin (6) 4 infusions of Ribitoux (?) and then things changed for the good. Monthly blood tests went to every three months. My first 2 years I had (2) MRIs checking on lymph node size, except for my flare up, things are looking good at this point in time. My Doctor says I’m doing well BUT she also says it can come back in a not good way. That’s why the word chronic (CLL) is used. So waiting for the next blood test is rather worrisome but all I can do is just deal with it. Having a positive attitude is good for me. No loss of weight, good appetite, not tired but I do have very slight night sweats that my Doctor is not worried about at this point in time.
-
Like -
Helpful -
Hug
3 ReactionsJust diagnosed with CLL. Anyone have advice on diet to increase energy?
-
Like -
Helpful -
Hug
1 Reaction@bochos
I have an excellent doctor that I trust also which I think keeps me positive. I am in the Wait and Watch period right now. Sounds like you are doing well now I hope that continues for you. Are you in the US? I am in Canada God Bless
-
Like -
Helpful -
Hug
1 Reaction@momh, welcome. It can sometimes be distressing when the recommended treatment is "watch and wait". People may equate this with "doing nothing," which is why I personally prefer the term "active surveillance," which implies careful monitoring.
How is your close relative doing? Do you have any questions about living CLL?
-
Like -
Helpful -
Hug
2 ReactionsAll I can say is follow your Doctor’s advice. If one isn’t comfortable with the advice then find another doctor or hospital for a second opinion. I am very happy with my doctor. After being diagnosed with CLL it was dormant (for lack of a better word) for 2/3 years then I had a flare up. After treatment and blood tests it is now not an issue. But that doesn’t mean it won’t become an issue in the future. Having a doctor you know/like/believe in is a good start. I’m not recommending any doctor or hospital but one has to find a doctor they can believe/trust. I have that so I just trust her. So, I just keep a positive attitude hope for the best. Having CLL is not a good condition to have but having a positive attitude is a good thing to have and each person who has CLL can control their attitude. BE POSITIVE.
-
Like -
Helpful -
Hug
4 Reactions@whatshallido59 Quite frankly, I really think you should be contacting a doctor soon to get some confirming tests to see what might be causing your elevated white blood counts and verify if you have CLL as noted by the doctor in the ER. It’s up to you whether you see your current doctor or seek a 2nd opinion elsewhere. But it’s important to have this checked out.
You mentioned you already have have a hematologist, is this someone you see for another blood condition?
@loribmt
My blood pressure was very low so my daughter took me to the doctor and after blood test they suggested that I go to the hospital. My white blood cell count was 97000 they called a hemotogist and he told me that I have CLL, my hemotologist at home told me nothing and I saw him two weeks before we went to Germany and my white blood cell count was 87000.
@whatshallido59 With your recent diagnosis of CLL, you must have a lot of questions. As I mentioned earlier, we have several members in Connect who also have Chronic lymphocytic leukemia. There are many discussions in the group with a great deal of information linked in the conversations.
In this current discussion, where your comment is posted, if you reverse the order of the replies (you can do that easily by clicking the Oldest to Newest button under the opening paragraph) you’ll be back at the beginning of the comments for this discussion. There are several with great links to information about CLL.
Each person’s unique in their CLL journey and it’s important to have a hematologist/oncologist who specializes in blood disorders working with you.
Since your diagnosis was while you were in Germany, now that you’re back home, have you contacted a local hematologist/oncologist?
@loribmt my doctor here didn't say anything to me , I found out that I have CLL when I was in Germany.
Thanks for your response. I will follow your suggestions. Very comforting.