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.
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?
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 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.
in 2010 my husband had an oncologist that said. no symptoms stage 0 we will watch and wait too, I happened to come across a team of Oncologist specializing in thyroid cancer on line, one Physician said never watch and wait, so I did more research, left Virginia and flew to Houston Texas Anderson MD Cancer Center, they could not believe I was not referred as my husband was really healthy looking and still working, but they seen us anyway, Miracle number 1, took lots of blood, we spent the night there and next day, they said bad news, good news , your husband has less than one year to live, his markers indicate he is asymptomatic and cancer chronic lymphatic leukemia is aggressive marker 17 and 53, that same day the target chemo had just been approved by the FDA, my husband was one of the first patients outside the trial to start on it, he was able to stay on it 6 years before his body rejected it, but they started a new target chemo and after 3 years he was cancer free over 3 years, then in January this year CLL showed up again, he just started back on new treatment, his platelets really low at 69,000 , and many many enlarged lymph nodes, bottom line, never wait and see, wishing you the best, Oh and ask for a more in depth blood panel that detects any abnormal markers. Best Wishes to you.
in 2010 my husband had an oncologist that said. no symptoms stage 0 we will watch and wait too, I happened to come across a team of Oncologist specializing in thyroid cancer on line, one Physician said never watch and wait, so I did more research, left Virginia and flew to Houston Texas Anderson MD Cancer Center, they could not believe I was not referred as my husband was really healthy looking and still working, but they seen us anyway, Miracle number 1, took lots of blood, we spent the night there and next day, they said bad news, good news , your husband has less than one year to live, his markers indicate he is asymptomatic and cancer chronic lymphatic leukemia is aggressive marker 17 and 53, that same day the target chemo had just been approved by the FDA, my husband was one of the first patients outside the trial to start on it, he was able to stay on it 6 years before his body rejected it, but they started a new target chemo and after 3 years he was cancer free over 3 years, then in January this year CLL showed up again, he just started back on new treatment, his platelets really low at 69,000 , and many many enlarged lymph nodes, bottom line, never wait and see, wishing you the best, Oh and ask for a more in depth blood panel that detects any abnormal markers. Best Wishes to you.
That's quite shocking, l have been told that since l really don't have any symptoms, the watch and wait is the way to go. I have looked at other comments from other people and it seems that watch and wait is a good option. I hope others will agree.
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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.
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3 ReactionsI was diagnosed with CLL in January so far just tire easily!
Has anyone with CLL tried Vitamin D3 supplements? Thoughts/ reactions/ recommendations?
Thanks
Just 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.
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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.
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1 ReactionI 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?
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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 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.
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Like -
Helpful -
Hug
2 Reactionsin 2010 my husband had an oncologist that said. no symptoms stage 0 we will watch and wait too, I happened to come across a team of Oncologist specializing in thyroid cancer on line, one Physician said never watch and wait, so I did more research, left Virginia and flew to Houston Texas Anderson MD Cancer Center, they could not believe I was not referred as my husband was really healthy looking and still working, but they seen us anyway, Miracle number 1, took lots of blood, we spent the night there and next day, they said bad news, good news , your husband has less than one year to live, his markers indicate he is asymptomatic and cancer chronic lymphatic leukemia is aggressive marker 17 and 53, that same day the target chemo had just been approved by the FDA, my husband was one of the first patients outside the trial to start on it, he was able to stay on it 6 years before his body rejected it, but they started a new target chemo and after 3 years he was cancer free over 3 years, then in January this year CLL showed up again, he just started back on new treatment, his platelets really low at 69,000 , and many many enlarged lymph nodes, bottom line, never wait and see, wishing you the best, Oh and ask for a more in depth blood panel that detects any abnormal markers. Best Wishes to you.
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Helpful -
Hug
2 ReactionsThat's quite shocking, l have been told that since l really don't have any symptoms, the watch and wait is the way to go. I have looked at other comments from other people and it seems that watch and wait is a good option. I hope others will agree.
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Helpful -
Hug
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