CLL question - constantly feel sick, node and spleen discomfort. What can help? Are any supplements useful?

I don't post much but I felt the need too. I have been on watch and wait for 6 months now and my numbers have been up and down but not enough to trigger treatment. The problem I'm having is I constantly feel sick.. Flu like symptoms almost everyday. It comes and goes. Sometimes its so bad I have to lay down for a few hours to feel better. I have been working from home 🏠 because of this trying to support my family. My nodes in my neck give me some discomfort and pain in my groin area from swollen nodes. I also started feeling some discomfort in my spleen sometimes. Is anyone else having the same symptoms and does it sound like I am getting near treatment. I was hoping to be on W&W for many years but my symptoms are concerning me.

I plan on going to MD ANDERSON in a couple weeks for a second opinion.

Thanks again for listening and I would greatly appreciate any feed back from my fellow CLLrs.

Best Wishes,

BC

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  • Hi BC

    Have you discussed this with your GP? You could have a bug that is difficult for your immune system to shake off, so the roller coaster illness.

    I would get in this week and see what your general doctor says, because your enlarged node could be a response to an illness and not CLL at all...

    Glad you are seeing someone at MDA, they will probably shed some light on your CLL situation... and a second opinion is a good idea...

    Let us know, what they determine...

    ~chris

  • Hi Chris,

    Thank you for your response. I think you are right about checking with my GP doctor. Its really depressing me. I'm a 48 year old male and its hard to believe I have CLL.. I think sometimes I'm still in denial and wonder if this is how my life will be from now on unless I start treatment wich is what I'm trying to avoid for as long as possible.

  • Exercise and be positive, and try a dose of the Bible. Bill Hilburn in Houston.

  • You are not alone. I was 46 when I was diagnosed, now approaching year 6 of this adventure and the 1 thing I have learned is to talk with your GP when you have cold/flu symptoms that do not go away or it seems like the symptoms are lingering.

    Good luck!

    Teb0513

  • I'm going to see my GD soon. I also have to have my levels checked. Not sure if I'm taking the correct Vitamines.

    Best wishes to you

  • I recently had something similar and went to the urgent care. I had swollen lymph nodes and was put on an antibiotic. My allergies are also bothering me a lot lately. Funny thing, my dog, who is twelve, all of a sudden has allergies, and was put on medicine. I concur, go to your GP to see what's going on. You certainly want to be free and clear of any infection that you might have when you go to the specialist for testing.

    Wishing you the best!

  • Hi South Florida lady,

    Good to hear from you. I'm going to check with my GP. I hope you are doing well.

    BC

  • I'm fine thank you. Have the doc also check ur vitamin D, B12, and potassium levels, and whatever he/she can think of. As you know, I live in Florida and I take 50,000 units of vitamin D3 a week and potassium when the doc determines my levels are down. Forgive me if we discussed this b4 "chemo fog!" 😜

    Please update us. Best wishes for good results. 🙏

  • Thank you. I am taking 50,000 D3 a week but not B12. Every day I take 7 Vitamines a day: 250mg Magnesium.. 450mg Turmeric… 28mg Iron.. 10,000 D3… 50mg Zinc.. 1,000mg Coconut oil.. And Echinacea. I also blend veggies and I am drinking green tea. 😀..I will let you know how my second opinion goes in a few weeks at MD ANDERSON. I just want to make sure I'm doing the right thing by waiting. Did you already start treatment? If so how did it go? Were you able to work? Are you in remission?

    Sorry for all the questions.

    Best Wishes

  • You are supplementing but have you had any of your levels check?

    B12 is an important one, and you need a blood test, if you are low and have no IF factor, then you may require injections... it made a tremendous difference in my case... lifted the fatigue and a lengthy depression, also corrected pernacious anemia, which had been masked by my CLL. I think I have been on monthly B12 injections 6 years , what a difference...

    So get your levels checked and work with your GP to bring things into line...

  • I haven't had my levels checked. I will look into this. My energy levels are low.

    Thank you for your reply.

  • BC

    I could be wrong but I would check whether to take echinacea. When I read the details itbsaid not to take with leukemia. Worth a second read.

    Certainly hope you soon feel better soon?

    BW Sue

  • I will stop taking echinacea and see if it helps.

    Thank you

  • BW

    Just check the leaflet that comes in the pack for your peace of mind. It does something to the white cells! Will try and find out for my information as well.

    Sue

    See cancernutrition.com/lymphom...

  • Echinacea helping the common cold is probably a myth...pretty much debunked...

    mayoclinic.org/diseases-con...

    Cochrane review ... maybe a slight positive effect

    cochrane.org/CD000530/ARI_e...

  • Thanks Chris, I personally would'nt take this echinacea supplement for anything because of the CLL.

    Good news that you are doing well. Have followed your progress with interest.

    Best wishes.

    Sue

  • I'm not going to take it anymore. But everyday now I feel like I have the flu.. I started taking antibiotics for an infection. I just don't think I can keep on feeling like this .

    I really appreciate you and how kind everyone has been.

    Hopefully what I am feeling will go away soon.. If not I will have to see the doc sooner than later.

    Best Wishes

  • Hang in there BC. I always try and be pro-active now. So go to the doctors sooner rather than later. So he /she gets to know you well, that's good. Maybe there's something they can give you to help. Plus you've got your specialist visit in a couple of weeks. I'm retired so it's a bit easier for me I can rest when I have too. Not so easy when you have to work. Believe me we all sympathise and still do at times feel like this ourselves but after time find our own coping mechanisms that sometimes help. Even treatment doesn't always make you 100% again but obviously does make you feel better. Maybe you are still struggling with the diagnosis. It does take a while, in fact you never accept it just cope. Really talk to your doctor, they are there to help.

    Please let us know how you get on.

    Just for once huge hugs are sent your way. (And these are very rare)

    Sue

  • Thank you Sue. I will let you know how my follow up appointment goes.

    Big hugs back.

  • Thanks Sue,

    I've corrected your link so it now works. Quoting the relevant section:

    "Lymphomas and Leukemias and Nutrition

    Nutrients are vital to the action of the immune system but the intricacies of how it interacts with various cancers is not yet well understood. Clearly those nutrients that are important in health are also needed when recovering from those disorders that affect the immune system. Some may be required in larger quantities and these would likely be the antioxidants as well as the omega-3 fatty acids. Antioxidants occur naturally in nature to protect plants from sunlight, insect and environmental damage. Fruits are particularly rich in antioxidants and botanical factors that are protective. We recommend consuming at least 8 servings of fruits or fruit juices if you have been diagnosed with one of the cancers that affect the immune system. Supplements are also valuable but should be selected carefully and with expert advice. A key concept to remember with these particular cancers is to avoid immune stimulation while providing immune support: herbs like Echinacea should be avoided.

    (My emphasis)

    My immunity has been severely compromised by my particular version of CLL; investigating the cause of severity level 4 neutropenia led to my diagnosis. So I very early on asked my haematologist what I could do in the way of supplements to boost my immunity and was told 'Nothing'. I've subsequently found that advice to sadly be sound advice, because:

    a) As is stated in the above quote "Nutrients are vital to the action of the immune system but the intricacies of how it interacts with various cancers is not yet well understood."

    and

    (b) Where it is reasonably well understood, I've found that lymphocytes are typically boosted and that's exactly what we already have in over-abundance!

    Neil

  • Neil,

    Thank you . You have been a great help and I am lucky to have found this support group. I learn something new everyday. I know I have much more to learn.

    Best Wishes,

  • Could'nt agree more Neil, and thanks for doing the link.

    Paula did write it out for me but admit I haven't tried it yet. Computers are not really my thing.

    Best wishes.

    Sue

  • You were right about the echinacea. ☺

  • Its nice to follow someone with CLL. Diagnosed July 2015. No treatment now.

    Whiburn45's email address removed for his safety. Anyone wishing to contact this member, please use the site's Private Messaging service which exists for this very reason - Admin

  • You are not alone my friend.

  • You are quite young to have CLL.

    Have you or your doctors considered Bone Marrow Transplant in the future?

    I'm 21 and have CLL, but preparing for a BMT , that's the only chance to be cured ...

    Good luck

  • I haven't thought about it but that seems to be a good option considering my age. I wish you the best.

  • In the 'CLL bubble' it is easy to blame every ailment on CLL.....but do remember there are a load of bugs going about their daily business.....and we are not immune to them!

    Good you are going to GP.....it is possible there is absolutely no link with the CLL

  • I agree. Its easy to blame everything on CLL but also difficult not too sometimes.

    Hope you are doing well.

  • I am amazed at the number of younger people who have this "disease of the elderly"

  • 50% of CLLers are under the age of 71... Don't go by what you see on the internet..it distorts the picture...

    This median in the US has moved one year lower in the past 15 years. What is way up are the number of newly diagnosised... due to the baby boomers aging...

    seer.cancer.gov/statfacts/h...

    ~chris

  • Chris - you are a CLL maven!

  • I agree. I couldn't believe it myself when I was told I had CLL… I'm still in denial.

  • I was diagnosed a 52 years old... 18 years ago... had a financial impact.. but hey... I'm still here... doing well.

    Enjoy your life... CLL focuses your point of view on what is important to you and really fine tunes your bullshit meter... ⏲⏲⏲

    CLL is a long and winding road....Stay on the well trodden path and out of the tall grass on each side... that is where quackers lurk... waiting to lighten your wallet...

    ~chris

  • Will do Chris.

    I hope you are doing well.

  • This cracked me up (made me laugh) so early this morning (5am). That is to say the quackers part....

  • BCTexas,

    You are going to a phenomenal leukemia research center. I think that it may be the largest in the world. It is a surreal experience. The treatment is cutting edge and they have a lot of drug trials for CLL. You will like the doctors and staff. I have talked with many CLL patients who were in your position who went to MD Anderson for second opinions and consider that the smartest decision they have ever made. I bet that six months from now you will be in total agreement and the constant sickness will be a distant memory.

  • Greenblue,

    I know I will be in good hands at MD ANDERSON. I have been putting off going there for a second opinion but I know its necessary.

    I hope you are doing well and I will let you know how it turns out.

  • BC, I hope that you are not taking vitamin D3 without a blood test to determine your levels and the amount you should take. Very Important, because it is toxic if your body gets too much!

  • I haven't had my levels checked. I'm going to stop taking the vitamins until I have the levels checked.

  • I'm going to have to fly to Texas and have a stern talk with you! Don't take anything without discussing it with your doctor first, period, end of it! Got it?

  • Yes 👍 I promise.. I admit it wasn't a good idea ..plus you wouldn't like the beaches here compared to South Florida.

  • I have your promise in writing, with witnesses! 🙃 My husband and I, sad to say, hardly go to the beach, except to the restaurants on the ocean! Take care of yourself and get well before MD Anderson.

    Write all your questions down to bring with you, no matter how trivial you think it is. Don't let the doc hurry you through the appointment, although I doubt that he/she will. Pick their brain apart for what it's worth! If they permit you to record the visit, do so, that way you will be sure to remember everything that is said. Don't rely on yourself, or your wife, for total recall, because that just won't happen. ♡

  • I will.

    I will let you know how it goes.

  • Good advice, though thankfully we have more tolerance to excessive amounts of vitamin D than other vitamins. There does appear to be a 'sweet spot' though, with an increased cardiac risk associated with what was previously regarded as safe levels of vitamin D:

    healthunlocked.com/cllsuppo...

    Even without the above concerns, given the amount we need to take to boost our levels varies considerably between individuals, we'd be wise to work with our doctors to work out what we specifically need to raise our vitamin D levels (if indeed they are low) to mid normal range. We still don't know why CLL patients are often low in vitamin D. Is it because our CLL cells are drawing it down as they multiply for example?

    Neil

  • Thanks Neil looks like a may need to find the sweet spot for my vitamin levels.

  • BC, I've taken the liberty of renaming your post so others can benefit from the responses to your question.

    With regard to changes in lifestyle, don't get discouraged, but try different things where there's good evidence they may work. Just introduce changes gradually for a month or two with each supplement or activity so you can better get an idea of what works and what is a waste of time/money. With CLL we generally do get plenty of time to find what changes work for us.

    I found boosting my low vitamin D made a huge difference to the amount of exercise I could do without suffering from a day or two of subsequent fatigue and that really helped me regain my fitness to a reasonable level, but it took a few years. I also found a vitamin B supplement seemed to help me over bad fatigue days, but that could have been coincidental.

    Neil

  • Thanks Neil

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