Glands making me crazy

Hello everyone. I am 42 and was diagnosed with CLL about 18 months ago. I have a very high wbc(120,000) but all of my other numbers and organ functions are totally fine. I have been lucky, a few bad colds but no serious infection my only symptoms that really affect me is extreme fatigue that hits me out of nowhere and glands in my neck that swell really large. I flew to LA to escape the NYC cold and shaved my winter beard off and got a skin irritation from shaving and it seems like that alone is a bad enough infection to make my lymph nodes respond. It's very frustrating but I'm grateful I know many others are suffering with much worse symptoms and complications.

Even with my numbers so high I am blessed that my doc (and kanji Rai who provided a second opinion at no cost) see no reason to "treat the numbers" and are in no rush to treat me yet. On days when the fatigue is beating me up and my glands make me feel like a freak show I wish there was treatment but my doc said unless it was preventing me from modeling jobs it's just too soon to start. Watch & wait is a double edged sword and I'm stil trying to wrap my head around it all but I still know I'm blessed to be in good health other than a touch of cancer. Working hard to eat well and get exercise and stay positive. Stress and aggravation really seem to affect me much more since I was diagnosed so I'm trying my hardest to avoid drama. Im Sending my prayers and well wishes to everyone dealing with this disease. anyone new who is struggling with the emotional strain just remember that the new treatments and medications are amazing. there is so much hope, keep fighting the good fight sunny days are ahead!!!!!

8 Replies

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  • Hi Petey and what a lovely, balanced, unselfish post! It's clear that your sore, swollen glands and fatigue are challenging you in your attempt to hold steady and avoid going down the treatment route yet despite high numbers. But you obviously have excellent medical advice (I'm envious!) and it clearly isn't just a numbers game. So glad you're feeling so well despite this and you sound positive and upbeat in your resolve.

    It must be miserable for you when the lymph glands are so swollen and sore and I wouldn't attempt to minimise the impact on you. You're a relatively young guy and sometimes we underestimate the embarrassment these can cause. There must be days when you think, 'let's just get this treatment started' because as you say, W&W is 'a double edged sword'.

    Your post resonates with me because this latest infection has caused my glands to swell in my neck for the first time and it's a pivotal moment. It becomes real and painful though I appreciate not on the scale you're suffering the problem.

    Stay strong Petey because we have to believe there are 'sunny days ahead'. And I hope other members can suggest ways of dealing or easing the pain from your swollen neck glands. I'm hoping mine disappear with the infection!

    Warm Best Wishes,

    Newdawn

  • I know we are all different but I was badly suffering from fatigue and had huge swollen neck lymph nodes but my wbc was only 42. This was Feb last year. Then had 6 months FCR which fortunately I tolerated well and got a partial remission and generally have felt better than I have done for years. So much so that I think I should have started treatment earlier! Just getting over lingering cold etc that hit me quite hard but otherwise I have been fine. Just trying to pass on some positive thoughts and attitude for when your time for treatment arrives. Worrying about the treatment was much worse than the actual treatment in my case! Anyway best wishes and good luck to you.

  • Petey, stay tough and God bless you, keep the Lord close. Your doing all the right things, and we are all in this together. I wish that I could take the pain away, I'm sure we all do.

  • Hi sorry that you feel the way you do.I think that so many of us this is the reality of living with cancer. Best wishes.

  • I am still on w&w and suffer with enlarged nodes too, particularly in my neck. I started drinking Red Clover Tea and a combination Tumeric Tea from an organic/health food store (okay'd by my heme/onc docs too) and noticed a difference quickly. Perhaps this will help you some too. Feel better...

  • The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for unusual childhood diseases, so here it is again.

    "Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue."

    We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on fatigue: mutated-unmuated.blogspot.c...

    Both times my CLL progressed I got severe fatigue and a reactivation of a childhood disease that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

    I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically but the cough took months for the symptoms to slowly subside and the coughing disturbed my sleep some nights adding back some fatigue.

    In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed me entirely.

    So is it CLL and an opportunistic infection?

    Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

    Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.

    And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

    If you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.

    Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

  • Dear Lenkeck,

    Great answer. Can you tell me what are the symptoms of fungal infections? Would unexplained skin rash be one symptom? When you say childhood diseases are you talking about Scarlet Tina as well? I almost never get sick but skin problems and fatique are a recurring issue. I appreciate any insight you may have for me.

    Many thanks,

    Kathy

  • Hello there,

    I was diagnosed 6 months ago (also too young) according to statistics! Watch and Worry is a reality but my doctor was contemplating putting me on a trail with chemo and the new drugs, but it was Christmas time so he said to wait .Incredibly, the lumps went down and I wasn't feeling like I had flu all the time. I have a cold now again, for the last 2 weeks, but the lumps are hardly noticeable. If possible, and with your good doctor's advice I would avoid chemo and drugs, I have been reading medical journals, oncologists reports etc from all over the world and yes, you will feel better but there are effects to the body which are last for a very long time.Namely, your immune system can be comprimised for more that 6 months, side effects and if you are unlucky some things can go wrong ( read the manufacurer's labels) Also each time you have chemo the body is likely to respond less.

    I am totally with you on everything you say - it is like you are describing my life and attitude all the way. I have night sweats ( when I have colds/ coughs) the fatigue is dreadful and nobody understands. My friend told me to sleep more but you wake up "washed out" all the time. I am going to take the advice of "lenkeck" who replied to your post and have the various tests done as he might be right about underlying childhood diseases/virus / bacteria Vit D deficiency causing the fatigue. Will try and see if it helps. Please read my posts - I have the exact attitude as you and plan to deal with this in your way too!

    Strengh and hope,

    Markella

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