just diagnosed from a blood test done in 2009

[mush56]

Hi im 58yrs old I was diagnosed at first with Non Hodgkins Lymphoma after a breast screening 10 days later I saw a Haematologist that said from a bood test in 2009 ( no follow up on by my doctors) and the biopsy I had take from nodes in my arm pits 5 weeks ago I have CLL . I was trying to get my head round the fact of Non Hodgkins Lymphoma then my life is upside down again . I had a CT scan on Thursday now another wait for 3 weeks to see the Haematologist again for results , the wait and worry is the worst thing I have ever had to do. what does your lymphacite count have to be before any treatment please.

[Newdawn Administrator]

Hi Mush,

I can tell from your post that you're in turmoil at the moment and struggling to make sense of it all. We've all been there and understand the feelings of fear and confusion. But take a deep breath and feel reassured that CLL can be a long and slow moving condition and the wait to see your Consultant isn't reason for undue worry. If anything it's reassuring because your presentation at present is obviously stable enough not to signal any immediate alarm bells.

I'm a bit confused about what you say in terms of the time scales but you seem to be saying that you were diagnosed with NHL in 2009. Is that right? CLL IS a type of Non-Hodgkins Lymphoma and I hope this explanation taken from a CLLSA article might help to explain better than I can. I'm not posting the whole article because it contains some treatment options and information that are a little outdated now. But this is relevant;

'CLL is really a type of so-called indolent, or slowly growing, B-cell non-Hodgkin’s lymphoma (NHL). It is called a leukaemia because it almost always involves the blood. Problems arise when the malignant cells accumulate to the point at which they stop the immune system or bone marrow from working properly when lymph nodes become so enlarged that they start to press on important structures or when patients get constitutional symptoms such as night sweats, weight loss or loss of appetite. Like other types of indolent B-cell NHL, CLL is not curable except with a bone marrow or stem-cell transplant from another individual. This is a risky proposition that can be difficult to justify in a disease with a natural history that can often be measured in decades. So, for most patients, treatment is aimed at alleviating symptoms and preventing life-threatening complications.'

I'm not entirely sure why your diagnosis in 2009 wasn't followed up to be honest but I can say that my GP was monitoring my lymphocyte levels from as far back as 2008 but didn't act for a definite diagnosis (at my request) until 2012. Sometimes if the levels are holding steady or not showing dramatic change, medics seem to take a conservative attitude towards 'watch & wait' because they know there's no immediate need or treatment available. There's no evidence that treating early improves overall survival rates. But new treatments are making tremdous inroads and we have good reason to feel reassured

You don't say if you are aware of your ALC (absolute lymphocyte count) or to what extent you're experiencing enlarged lymph nodes. But the important thing in CLL is trends and other factors impacting on well being as described above. It really isn't a numbers game or even dictated by number of enlarged nodes if they're not causing obstruction to vital organs. We have members on here with ALC's in the hundreds and many bumps and lumps. So please don't worry that you'll be raced into treatment. How are you feeling generally mush? In CLL it's often a very good indicator.

From what you say, it doesn't sound like your diagnosis is very different from the one you were given in 2009. But I could be wrong because there's limited information and the chronology is a bit confusing.

Feel free to ask specific information and advice on here. It really can help to get things into perspective when we realise that our experiences are shared and understood. But the most important thing I can say to you is that at the moment fear is a greater enemy to you than CLL. You sound like this has been an ongoing condition for some years and a CT scan at diagnosis isn't unusual (I had one).

Keep in touch and let us know how it all goes. And if you need support, just post again and people will try to help. Best wishes,

Newdawn

[Justasheet1 in reply to Newdawn]

NewDawn,

Your response was amazing.

Take care,

Jeff

[Newdawn Administrator in reply to Justasheet1]

Thanks Jeff...I'm just glad that at the most fearful times we can be there to support each other.

Warm regards,

Newdawn

[mush56 in reply to Newdawn]

hi Newdawn a blood test was taken in 2009 unrelated to CLL nothing was said no recall for further tests I didn't no anything was wrong until enlarged nodes came up on my 3 year breast screening in January 2015 a biopsy was sent off and I was told at the clinic on 5/2/2015 I had NHL and an appointment had been made for me to see the Haematologist 16/2/2015 he told me I have CLL and it was picked up in a blood test done in 2009 in 2009 my ALC was 9.0 its now 50 what would it be when I would need treatment .Tired most of the time and have awful pains in my thigh bones my right knee swells up and night sweats (haematologist said hormonal I went through the change at 50 ) ex smoker so very chesty with a cold and had a few chest infections but I put it all down to my age and working a butty van so up at 4.45 in all weathers

[AussieNeil Partner Administrator in reply to mush56]

Hi Mush,

It's not the ALC number that determines when you need treatment, but how fast it is growing among a number of other symptoms. Have a read of How high can you go and what does it matter?:

healthunlocked.com/cllsuppo...

Also have a look through the pinned posts for those that may help you:

healthunlocked.com/cllsuppo...

There's one on fatigue that may help you.

Your experience of having an earlier indication of CLL being ignored is sadly fairly common. In my case I had raised lymph node on my thigh many years before developing SLL, which later progressed to CLL. My GP dismissed it as of no consequence and I now know that it is a swollen lymph node. If it is where the SLL originated, I could have been cured by radiation treatment. Some years later I, like you, had a suspicious reading in a blood test. Nearly 3 years later when I had another blood test, that result was still wrong and the subsequent investigation led to me being diagnosed with stage IV SLL/CLL in 2009.

Research by the Australian Leukaemia Foundation has discovered that GPs see perhaps half a dozen lymphoma cases in their entire career and SLL/CLL is only a (significant) percentage of those. So unfortunately, GPs do miss early indications from lack of familiarity.

When you see your specialist in 3 weeks time, make sure you ask:

1) What stage you are

2) What, if anything, you might need to do to guard your health

3) A copy of your blood test and scan results (and any other tests available)

Explain that your job involves a great deal of contact with people (I presume you serve customers) and specifically ask whether your CLL is impacting your immunity. You can find tips on infection prevention in the pinned posts and by searching the site.

You can then share what you've been told and the results you've been provided with the community for a more leisurely explanation and how that actually translates into what, if anything, you need to do.

Also, make certain that you get all your non-live vaccinations up to date. Vaccinations aren't as effective as CLL progresses, so top up your immunity while you can.

While it is a bit of a shock finding out that you've had an incurable cancer going undiagnosed for several years, the end result is generally the same. You get put on watch and wait, which means no treatment, just monitoring to pick if treatment is ever required. A significant proportion of us never need treatment - we die with CLL not because of it. This community can help you improve your quality of life with CLL - perhaps to better than it would have been without CLL, purely because we get a wake up call to do something about our health which pays significant dividends.

Neil

[mush56 in reply to AussieNeil]

thank you Neil that's a great help

[lankisterguy Volunteer in reply to mush56]

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.

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.

[mush56]

well spoke to haematology nurse yesterday she says the results are nodes in my neck , clavicle and chest an I have an enlarged spleen wont find any thing else out till tomorrow afternoon when I have an appointment with the haematologist how does this sound ???