Recently Diagnosed

I was feeling really tired and like I had the flu. Kept going the doctors to be told I had a virus. When I showed them a lump on my neck they gave me a blood test. My WBC was 23. I was sent to a blood doc who said it could be lots of things. Done test, went back 2 weeks later for results. I had CLL at early stage. Said me being tired and feeling crap was nothing to do with CLL and more to do with water infections that wouldn't go away. I've had 7 in 6 months plus 2 chest infections and a couple of viruses. Been off work for 4 months but told I'm not ill by blood consultant.

Having a hard time dealing with it and on waiting list for counselling. Apart from my GP who is supportive, had no other help from hospital. When I tell them how tired and feeling crap, they tell me it's not CLL. Feel like I'm going mad. I went the hospital with a life and came out without one and left to it.

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  • Hi Softgirl1,

    While I'm sorry you've had occasion to join this community, I'm certain that you'll find much here that will greatly help you, both from the collected wisdom of others that have been through your experience and the mutual support we provide.

    I'm concerned that you aren't getting appropriate care. You don't say where you are, but if you're prepared to divulge what country and region you live in, then other members may be able to direct you to some specialists that will treat your diagnosis seriously and help you regain your life.

    For starters, there's a list of recognised CLL specialists (far from complete) referenced in the pinned post:

    Developing a reliable and current international list of CLL Information & Resources:

    healthunlocked.com/cllsuppo...

    There's much else in that post that will assist you as you make adjustments to living with your diagnosis.

    You've raised some points that are unfortunately commonly an issue for us in your introductory post that I'll briefly answer:

    1) Fatigue is a common problem with CLL that is sadly not treated seriously by medical staff unfamiliar with CLL, particularly for early stage patients, where blood counts normally associated with fatigue are in the normal range. Check out Fatigue and how to overcome it:

    healthunlocked.com/cllsuppo...

    You'll find plenty more on fatigue if you type 'CLL fatigue' into site search at the top right of this page.

    2) Ditto more frequent infections. Check out CLL - a Cancer of the Immune System:

    healthunlocked.com/cllsuppo...

    Again, there's much more that you can find on this site on how to reduce your risk of infection.

    3) It is tough enough being given a diagnosis for a blood cancer without being provided with the appropriate support. Here's another member's poignant record of what that's like and how they started to get their life back together:

    Irredeemably Altered...A story of Diagnosis:

    healthunlocked.com/cllsuppo...

    Finally, you have the great advantage of having a supportive GP. You should be able to bring some of the relevant information from referenced international experts on CLL to your GP's attention to get the assistance you require (including a referral to an experienced CLL haematologist) to get your life back.

    Neil

    PS I've taken the liberty of editing your post for improved readability.

  • Hi Softgirl1,

    Welcome to the group, whilst I'm sorry you have the need to be here you will find it very supportive and informative. There isa wealth of experience here. Personally I do not suffer unduely from fatigue however it is a common thread with many others here.

    Neil has responded with a very comprehensive answer which I can add little to, however the statement 'fatigue is not related to your CLL' is highly suspect in my opinion.

    Rob

  • Hi softgirl1

    Welcome to the group. Of course I am very sorry you have CLL but glad that you have found us here.

    You have been given some good links by Neil and there is much to read here about other members' experiences. If you can't find the answers you need, then please just ask and others will try to help. This is also a place where you can talk about anything on your mind.

    Whilst we are all at various stages of CLL, we all remember how we felt at diagnosis, ie., shock, disbelief and much more. It does take time to adjust but being at an early stage, you will very likely find you do have the time to do this and understand this complex cancer.

    Many have had difficulties with Health Professionals, either not listening or not taking symptoms, like fatigue seriously. Incidentally, my CLL Specialist does acknowledge that fatigue is a very common symptom, in early stage CLL and understands that it is notoriously difficult to treat. I wrote a post about it too, which is at the bottom of the 'pinned posts' list on the right when you click on 'Posts'. Whilst it's good that you have an understanding GP, it would also be helpful if you could find a CLL Specialist, in whom you can put your trust.

    As Rob has said above and Neil too,we are a mutually supportive bunch here and there is a wealth of knowledge on which to draw. You are not on your own with this.

    Oh and you are not going mad, even though it might feel like you are and I am sure that some counselling could help - though it's not for everyone, it did help me.

    Warm wishes

    sparkler x

  • Hi No you are not going mad. Felling as you do physcially is very common in CLL and nothing to do with mental health. "talking" to other people in the same boat helps so this site should give you support and if you are in the UK try to get to the next CLL support meeting at Bart's in London if possible where experts can try to explain what is happening to you.Best wishes

  • Hi Soft Girl,

    If it helps any, I was diagnosed at stage four last year and sometimes I don't think they understand. My GP thinks my joint and bone pain is arthritis and put me on medication for it. It hasn't helped. Tiredness? Fatigue? More vitamin D and B12. No, they aren't helping either after three months of taking them. I get frustrated.

    My oncologist is a bit of an optimist perhaps too much so. When I was first sent to him by my GP he didn't think I had cancer even though my lymph nodes were swelling up all over and my abdomen was in pain. He said he didn't know what it was however so we're going to do a biopsy and rule it out. Nope. I have it, CLL.

    Anyway, you aren't alone in your frustration with the medical establishment.

    Remington

  • thankyou all for your help so gld I found you all x

  • I'm repeating a post and message I have sent numerous times in the past.

    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.

    Both times my CLL progressed I got severe fatigue and a reactivation childhood diseases 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. I also had Whooping Cough (Pertussis) I was treated in 2010 with Rituxan monotherapy and the fatigue problems disappeared but the cough took months for the symptoms to slowly subside.

    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.

    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.

    Len

  • Softgirl,

    Sorry about the CLL but thats the cards we have been dealt in life.... fortunately I have a friend here in Texas that has had it for 40 years so I do not have any thoughts about it being terminal.. you must address that the fact most Dr.s try to treat everything as do hospitals .. this is to enhance their reputations... simply put .. if it is a scratch, broken bone or skin cut go to the local hospital ... but anything else go to a hospital where they specialize in

    your type of disorder.... LIFE IS NOT A DRESS REHEARSAL .... it is real..... a retired Md. once told me that if something goes awry with your body the Md. goes home that night to dinner with his family and it is business as usual ... but you are lying in a bed in pain and are the farthest thing from his mind...sorry to be so blunt but it is the truth.... get a 2nd and 3rd opinion , do not worry about what the Md will think .. fish61

  • Hi there Softgirl

    Sorry that you have had to find yourself looking for information on your recent diagnosis of CLL, it's something that the members on here have all experienced and fully understand.

    I see that the response's to your post already have suggested some good links to your problem, plus shared experiences, and lenkeck does keep repeating a message that is important to all of us who are having to deal with CLL.

    You are definitely not going mad, your immune system is compromised leaving you more open to infections, and in my experience to be fatigued when fighting infection.

    I am here in Scotland, I was diagnosed in 2006 aged 47, and as yet have not had any treatment, however in my experience, I do get very fatigued by not pacing myself when doing at times even mild levels of physical activity, or when I am fighting infection.

    In the last 4 weeks I have been weary , ' no life force ' ..not just tired .. or fatigued, on three occasions it last's this bad for a few days at a time, each time family members were complaining of colds, then a stomach bug.

    I am lucky that I have good GP's and hospital haematoligist who do accept that my fatigue is related to my CLL.

    Another thing is that although my family maybe ill with flu/colds etc, I can be ill/fatigued while not always experiencing the same symptoms as them, again my haematoligist suggested that that is probably down to the CLL.

    So ... I do have thankfully no need for treatment as yet ... I do have the lump on my neck ( and a couple in my armpit )

    ... and would therefore maybe be told by the haematoligist that you have seen that my fatigue/illness is not down to my CLL ... I would ask you GP to be referred to another haematoligist or hospital.

    I hope that your hard time dealing with CLL will soon turn into the CLL management that we all have to learn, and I hope that being here will help to smooth a few rough edges ... having a compromised immune system is not your fault, and you are not alone in this forum, so if it is a question to ask ... or just for a rant ... this is as good a place as any.

  • thankyou for your support and links very helpful aussie neil thankyou for making my writeing readable im from the Wirral and have been trying to find people sadly in the same boat thankkfully found this site in which I thank my lucky stars

  • Hi Softgirl1,

    You are a stones throw from Liverpool and the Royal Liverpool where there is an excellent team. We had the March 2013 meeting of the CLLSA. Also not far away from you is Christie in Manchester which only treats cancers to best of my knowledge.

    I'd see if my GP would support me going to one of those (Liverpool I guess) if I were you.

    Rob

  • Good advice above - certainly worth gettng a second opinion from, a cll specalist. Your GP should have no problem about you asking for a referral. Specialist see cll patients all the time so are better placed to say whether the fatigue is from the cll or other issues. Clearly having cll does mess up your immune system so does lead to presistent colds and flu, infections, poor healing wounds etc. I had been having flu like symptoms for months on end before being diagnosed by a health check blood test. So made sense when diagnosis was made.

    Worth having your vit d level checked - simple blood test requested by GP - many with cll are found to have low levels - so getting it back into normal levels may well help your energy as it did for me.

    Watch and Wait is not much fun but treatment should always wait till there is a needed - evidence to date is that early treatment has no advantage unlike a hard cancer - difficult to reconcile but true. So we have to get used to cll like having an annoying friend always there but not defining who we are.

    Hope you manage to get to see a consultant at Liverpool - has an international reputation so you would be in good hands.

    Andy

  • il ask my gp if I can swap hospitals thankyou

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