I would like to suggest becoming very familiar with your WBC and lymphocyte values. At a trip to the ER last week for another issue, I did not question the values they verbally told me and I should have. Instead of both being elevated over their typical levels, the WBC was up but the lymphocyte count was down. It turns out I do have another infection, a small abscess on one tooth. That fact was lost in my CCL elevated levels.
I was diagnosed with CLL about a year ago - still on watch and wait. I have been taking D3 for years. Some years ago, my nephrologist determined that my Vitamin D level was low and told me to start on it. However, Vitamin D is something you can overdo. She checked my levels last year and told me to half my dosage. It would be good to ask your doctor to check your Vitamin D level. Some months ago I also started taking Tumeric. I asked my oncologist if there are any supplements I should be taking; she said "no". Have any of your oncologists suggested any supplements?
My oncologist has heard there are studies in the works regarding Tumeric and vitamin D, with some promising results. I have to monitor the vitamin D levels and keep that in check. Hopefully l can benefit from this. Any new information on this would be greatly appreciated.
I was diagnosed with CLL about a year ago - still on watch and wait. I have been taking D3 for years. Some years ago, my nephrologist determined that my Vitamin D level was low and told me to start on it. However, Vitamin D is something you can overdo. She checked my levels last year and told me to half my dosage. It would be good to ask your doctor to check your Vitamin D level. Some months ago I also started taking Tumeric. I asked my oncologist if there are any supplements I should be taking; she said "no". Have any of your oncologists suggested any supplements?
Good morning, Pat. Your doctor sounds like a ‘keeper’! It makes such a difference when you have a doctor who takes the time to explain the situation, answers questions and gives reassurance that you’re on their radar should something pop up. My oncologists/hematologists are like that too. I think their understanding and concern gives us the sense that we’re free to move forward, to enjoy our lives and to not focus on the diagnosis. We’ll be taken care of ‘if’ anything needs tending in the future.
Are you still feeling experiencing the chills you were having?
Yes I get chills and am very tired…fell asleep during Mass on Zoom just can’t keep my eyes open sometimes .
What I worry about the most is they say I can’t fight infections or a cold etc..so far I’m staying well.
I do have fluid build up and hard to breathe and I’m on oxygen…day and night. So I do struggle.
@hikerny, I hope you've been following all the responses to your call for finding others who have been diagnosed with chronic lymphocytic leukemia (CLL).
I look forward to hearing more about your journey. When were you diagnosed with CLL? Is this a new diagnosis? Will you be having treatment? How are you doing?
My diagnosis came as a result from my doctors suggestion for a blood test to determine the cause of my “water” like blood. Test showed platelets were OK. But that I had CLL this was August 2024.
He told me not to worry that of the few who received the diagnosis even fewer have it develop into a symptomatic condition.
To help us understand this disease better could other's share the level of their WBC and the range of their lymphocytes were when CLL symptom's like fatigue showed up. I understand for many of us fatigue coincides with aging and confuses the fatigue issue.
After a routine CBC and being symptom free my white count was only at 11,500 and but my lymphocytes were above normal, evidently enough to justify a bone marrow biopsy. I "smoldered" for about 10 years, with my white count topping at 20,000 along with lymphocytes increasing also. But still symptom free.
My oncologist's did not recommend treatment until the white count reached around 80,000, base on the fact that at that time, perhaps treatment's have changed, but I was told the treatment became less effective each time it was administered and to put it off as long as possible.
At what levels did you begin to notice symptom's?
Connect
Connect
Like
Helpful
Hug
I would like to suggest becoming very familiar with your WBC and lymphocyte values. At a trip to the ER last week for another issue, I did not question the values they verbally told me and I should have. Instead of both being elevated over their typical levels, the WBC was up but the lymphocyte count was down. It turns out I do have another infection, a small abscess on one tooth. That fact was lost in my CCL elevated levels.
-
Like -
Helpful -
Hug
2 ReactionsMy oncologist has heard there are studies in the works regarding Tumeric and vitamin D, with some promising results. I have to monitor the vitamin D levels and keep that in check. Hopefully l can benefit from this. Any new information on this would be greatly appreciated.
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed with CLL about a year ago - still on watch and wait. I have been taking D3 for years. Some years ago, my nephrologist determined that my Vitamin D level was low and told me to start on it. However, Vitamin D is something you can overdo. She checked my levels last year and told me to half my dosage. It would be good to ask your doctor to check your Vitamin D level. Some months ago I also started taking Tumeric. I asked my oncologist if there are any supplements I should be taking; she said "no". Have any of your oncologists suggested any supplements?
-
Like -
Helpful -
Hug
2 ReactionsI am going to try the same. THANKS! I will post on any developments or insights. Hope you’ll do the same. Good luck and God Bless.
-
Like -
Helpful -
Hug
1 ReactionJust started D3 and Turmeric, diagnosed with Cll and Sll in January, stage 0. Giving this a try, since no treatment currently. On the watch and wait.
-
Like -
Helpful -
Hug
2 ReactionsHas anyone with CLL tried Vitamin D3 supplements? Thoughts/ reactions/ recommendations?
Thanks
I was diagnosed with CLL in January so far just tire easily!
Yes I get chills and am very tired…fell asleep during Mass on Zoom just can’t keep my eyes open sometimes .
What I worry about the most is they say I can’t fight infections or a cold etc..so far I’m staying well.
I do have fluid build up and hard to breathe and I’m on oxygen…day and night. So I do struggle.
-
Like -
Helpful -
Hug
3 ReactionsMy diagnosis came as a result from my doctors suggestion for a blood test to determine the cause of my “water” like blood. Test showed platelets were OK. But that I had CLL this was August 2024.
He told me not to worry that of the few who received the diagnosis even fewer have it develop into a symptomatic condition.
-
Like -
Helpful -
Hug
3 ReactionsTo help us understand this disease better could other's share the level of their WBC and the range of their lymphocytes were when CLL symptom's like fatigue showed up. I understand for many of us fatigue coincides with aging and confuses the fatigue issue.
After a routine CBC and being symptom free my white count was only at 11,500 and but my lymphocytes were above normal, evidently enough to justify a bone marrow biopsy. I "smoldered" for about 10 years, with my white count topping at 20,000 along with lymphocytes increasing also. But still symptom free.
My oncologist's did not recommend treatment until the white count reached around 80,000, base on the fact that at that time, perhaps treatment's have changed, but I was told the treatment became less effective each time it was administered and to put it off as long as possible.
At what levels did you begin to notice symptom's?
-
Like -
Helpful -
Hug
1 Reaction