newly diagnosed with stage 2 CLL

Aged 70 yrs, male, diagnosed with CLL in Feb 2013,while I had a routine

blood work when I had infected chronic tonsilittis.. WBC was 31,700 and rest all OK.

As advised by my oncologist, I had undergone several tests including Flow cytometry. No lymph node enlargement, no fever. Negative for Zap 70 and CD 38 markers. I was told Zero stage. Non diabetic and had received vaccinations for Pneumonia, HIB and meningococal. I was under watch and wait , no treatment was started yet. No doubling of WBC in less than 6 months.

Undergone multiple investigations since 2013frequently and my stage is being monitored closely.

Now in 2016 August, lymph nodes enlarged in stomach, neck enlarged besides spleen also enlarged from 111 mm to 140 mm with multiple lymph nodes in both sides of neck largest being 24x12 mm on right and 21x8 mm on left side , afew peri pancreatic nodes largest being 40x16 mm.

Again Flow cytometry done : NEGATIVE for Zap 70 and CD 38 .

Fish test all NEGATIVE for del 17p, del 11q, del 6q 21, C- MYC:( 8;14)

Ig Vh mutation positive with 4.7 % mutation frequency

LDH : 249 ( ref range up to 330)

B2 micro globulin : 1905( ref 0-2000)

Blood work ( sep 2016) : wbc : 1,29,300, Hb 12.1, Rbc 4.61. Platelets: 1,50,000

Currently no fever, not much weight loss( lost 4.5 kg in 3 years, present weight 57.5 Kg), No night sweat, no discomfort, No fatigue, no feeling of tired, appetite OK

Considering the enlargement of lymph nodes in neck and stomach and enlargement of spleen, progressing WBC of more than 1,30 lakhs which is alarmingly high and platelets being just at the minimum level , I was advised now by my oncologist to start treatment by taking Bendamustin with Rituxanib of 6 cycles at the earliest so that I can tolerate the toxicity now and may get good results..

My worry is "Am I ready for treatment and whether this B &R chemo pose any problems for me during treatment as some advise to wait as the condition and stage is not bad warranting treatment immediately ? If my condition become worse and my worry is whether can I tolerate the chemo therapy drugs posing threat with many adverse side effects,? "

Considering I am negative for del P and negative for Zap 70 and CD 38 markers and Ig Vh mutated, what is the ideal treatment suitable for me?

I am scared now after going thro various experience of some CLL patients

in this forum and after going thro the experiences reportedhere.

Will the experts help and guide me what I should do and what treatment

suits me.

Am I fit for clinical trials in any hospital of repute ? Are they safe for me.

Can I safely take B R chemo?

PLEASE HELP

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  • You don't appear to meet any of the internationally accepted guidelines for starting treatment. See section 4 of this document: bloodjournal.org/content/11...

    We have members still untreated with WBC of over 2,00,000, so don't let your (not really) 'alarmingly high' count alarm you, particularly given you feel well. See: healthunlocked.com/cllsuppo...

    The statements of particular relevance to you are:

    1. Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia (Your platelets at 1,50,000 are still acceptable, given this is the lower limit of normal and CLL specialists only consider starting treatment when the platelet count drops below 1,00,000)

    2. Massive (ie, at least 6 cm below the left costal margin) or progressive or symptomatic splenomegaly (You've only reported an increase of 111 mm to 140 mm or 29mm (2.9cm))

    3. Massive nodes (ie, at least 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy (You say your largest nodes are 40x16 mm (4.0 x 1.6cm)

    :

    6. Constitutional symptoms, defined as any one or more of the following disease-related symptoms or signs:

    1. Unintentional weight loss of 10% or more within the previous 6 months (You've mentioned losing about 8% of your weight over 3 years)

    I'm not medically trained, so I'd strongly suggest you find a local specialist that has more CLL patients than your current oncologist, because from what you've divulged in your fairly thorough report, I would suggest that CLL specialists would continue to monitor you and not want to start you on any treatment now.

    Neil

  • Thanks a lot for your wonderful advice . i felt lot of relieved after reading your

    comments.

    God bless you

  • I am grateful for your insights, Neil. You take the time to thoughtfully respond to posts and I learn so much from them.

  • venk_46 wrote:

    Will the experts help and guide me what I should do and what treatment

    suits me.

    Am I fit for clinical trials in any hospital of repute ? Are they safe for me.

    Can I safely take B R chemo?

    Hi venk:

    Now would be a perfect time for you to get a 2nd opinion from a CLL expert.

    Those three questions are exactly what you should ask an expert, we should not give that kind of specific medical advice here.

    If you prefer, your current oncologists can continue the routine monitoring and provide the treatment you choose, after hearing the expert opinion.

    If you let us know where you live, we can suggest some good doctors from our experience.

    Len

  • I live in Hyderbad ( India).

    Please suggest me some good doctors for consultation and decide further course of action.

  • CLL is quite rare in India, and there are no noted CLL specialists that I'm aware off.

    You might start making inquires at these two institutions, doing some CLL research, and perhaps they can find a knowledgable doctor for you...

    HCG Curie Centre of Oncology , Bangalore , India ;

    Kidwai Memorial Hospital , Bangalore , Karnataka , India ;

    All the best...

    There are Indian made versions of Rituxan and Bendamustine, and they are a fraction of the cost of the same medicine in other parts of the world... Rituxan is called Reditux and Bendamustine is Bendit.

    ~chris

  • There is one recent article about CLL on PubMed.gov -- where 5 of the 12 authors are based in Hyderabad, India:

    ncbi.nlm.nih.gov/pubmed/265...

    ncbi.nlm.nih.gov/pmc/articl...

    So, since email addresses are given in the article, you might want to contact several of these authors and see whom they might suggest that you consult with in Hyderabad, India.

    I've used this trick before. Go to PubMed.gov and in the search box enter the name of the illness plus the name of a large city -- and you MIGHT at least find out about someone who has published about that illness.

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