Watch and wait but feeling rubbish :(

Watch and wait but feeling rubbish :(

I was diagnosed with cll stage 3 in August15. After getting over the shock I feel that I have been leading a relatively normal etc . I have lower energy levels a sore tender neck and groin.

However last week felt awful and had a very sore tongue and throat. Alongside this feel very sore around my rib cage. Treated for oral thrush...which I've never had before...but still feel rubbish. Very emotional, no energy, aching all over.

I usually try to power through but just can't. ..

Any advice? What should I do? X

19 Replies

  • Hi Bethan,

    Aww sorry to hear you're feeling grotty especially having had oral thrush which is horrid! :-(

    I recall you were due to see your specialist but hadn't been over-impressed with his response to these problems which you seem to have had consistently for some months. As you know from your scans that you have swollen nodes, it would account for the neck and groin pain but do they feel bigger or more sore and tender? When is your next appointment?

    Are you managing to sleep well at night Bethan and how are you coping emotionally because this can have a big impact on energy levels and general coping capacity.

    I know because my sleeping pattern is shot at the moment due to severe heat and temperature dysregulation.

    Did the haemo tell you your spleen was swollen because that could be causing the pain on the left side under your rib cage. I suffer with that too but my haemo didn't palpate the area to check last time.

    Have you had your general vitamin levels checked and have you any idea how your immunoglobulin levels are looking?

    Unfortunately poor energy levels can be part of the CLL landscape but a myriad of little health niggles can drag us down and impact on our usual ability to cope. Don't let the specialist suggest they're not real. Problem is so many of us suffer these symptoms but the medics can't identify the cause and don't know what to suggest.

    But if you're worried, ask to see him and put your concerns out there.

    I can only send understanding support...the people on here understand x

    Love the little knitted nativity figures incidentally! :-)


  • So sorry to hear you are feeling so awful Bethan. As usual Newdawn's response is full of helpful suggestions. Hope you get it sorted very soon.

    Love the knitted nativity scene.

    Take care - sending hugs


  • Hi Bethan, I am so sorry and I understand as I am your age and newly diagnosed myself. I can relate to the feelings more than well and my compassion is with you. I dont have much to offer other than I have been coming to this forum and made some wonderful friends and confidontes who have gotten me through the very same despair. I am sure the holiday season doesnt make it any easier as it is a touch and go for me. On a lighter note, I am absolutely in love with your little figures in the pic, they bring a smile to my face and remind me of my grandmother who made things by hand :). I too am trying to push through all the mental and physical discomfort by forcing a grin when I want to cry, moving myself when I want to lay flat, looking at something beautiful out my window, in a video, music, just breathing fresh air and staying in the moment knowing it will pass, eventually, making a cup of tea to ease the physical pain of my swollen lymph gland. I am grasping any tool I can to make it by the second, minute, hour or a day until it is just a fleeting thought. Those are a sample of what I am doing currently to ease my pains. It for sure is a work in progress and nothing about it is easy.

    Again this forum has given me hope since I joined a few days into my diagnosis, which is a few weeks ago and provided me with all the suggestions that I am putting to work for me during this challenging time.

    You have a friend in me, hope I helped some.




  • Thank you si much. I will br thunking of you too. A good night's sleep always helps me...I can feel awful in the evening ..sleep all night and then feel so much better!

    Really I just want it to go away!!!!

    Keep your chin up! X

  • Hi Bethan. Have you pinched our nativity scene? The one in our classroom is nearly the same!😀 Our job, at this time of year, is particularly busy with all the christmas preparations, concerts, Carol services, christmas fayres etc.... and this is probably draining your energy levels. I always feel I've 'done' christmas by the time we break up and I start in my own christmas things! I think also the way we are feeling impacts a lot on out ability to cope with day to day life. Sometimes things get too much to deal with and it's hard to carry on,especially at this time of year when everybody MUST be happy. I feel exactly like you at the moment so am trying to concentrate on the really important things and not 'sweat the small stuff'. As mums and daughters we are programmed to try to keep everyone happy so they won't worry about us but it's ok sometimes to have a meltdown. We can't be all things to all people all of the time. Stay positive. Peggy.

  • I could make a fortune if I could knit these nativity sets!!!

    Thanks for your support and advice!xxx

  • Dear Bethan,

    I was finding myself alergic to toothpaste for the first time in my life with CLL. So with mouth sore issues I switched to a milder toothpaste. In the US Sensodyne is the name of the toothpaste. It has worked like a charm. No more issues for now and this brand works fine. I also had skin alergies and started using a milder soap and that has worked as well. Try to eliminate chemicals from your products and go as natural as possible. I am not a doctor but this has really helped me. I hope you feel better soon.


  • Hello Bethan

    Just wanted to say I am thinking of you and understand how you are feeling at the moment .

    It is such a busy time of year remember and that doesn't help us with our cll

    Let alone having a sore throat and tongue which has got to make you feel low in its self .Most of the time we seem to be rushing around meeting ourselves coming back and wondering how we are going to get through the holiday season with our cll in the background .

    Try if you can to take some time for yourself ,relax and do as much as you can do .That can I know be difficult as we want to please everybody but remember it's not always possible .

    Take care

    Brenda .

    I love the little knitted nativity .

  • Thanks so much for being real! X

  • Hi there,

    Sorry you are feeling so rotten, don't think I can add anything to the,as usual,great advice already given.

    I sympathise with trying to lead a "normal" life while not feeling all that great, but we do it.

    Hope you feel better soon

    Take care

    Elle xx

  • Xxx thank you!

  • The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for re-activation of usual 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 immunodeficiency


    and his comments on fatigue:


    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.

    Since 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

  • This has given me a lot of food for thought candca lot of helpful info. Thank you so much!

  • Bethan,

    You need to see a CLL/SLL specialist. I and many others have been in your position. I went to a CLL/SLL specialist and got into a drug trial. The other people in the drug trial that I have met were in the similar position and left their first oncologist for the specialist. I really liked my first oncologist but he didn't have the tools, access to drug trials and staff that the specialized cancer centers have. He called and got me one of the top researchers. We all agree that this was the smartest decision that we have made. There are too many exciting drugs being tested with great success to wait and watch at stage 3. The drug trial has been a life changer - no more lymph-nodes the size of tennis balls, no more anemia, no more night sweats, no more low immunity, and no more despair! And so far I have not had side-effects.

  • My Gp is really keen for a 2nd opinion and has got the ball rolling. Its just waiting and worrying that's so debilitating!

    Thanks for your encouragement!

  • One more note of care to the many helpful messages you've already received. So sorry you're feeling rough.

    Just a thought about that sweet nativity scene. The first Christmas in the stable was really simple. A thought to ponder and strive for.

  • Sorry you feel so rough Bethan. You have already been given lots of good advice so I'll just hope that you soon feel a lot better especially with Christmas just around the corner.

    Take care.


  • Be strong for you Bethan49, meds have advanced so much now if you need any, hopefully not.

  • Hi Bethan, I wish I had some advice for you,but all I can offer is my good wishes and support.I hope that you will be feeling better soon.Pumpkin

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