Fighting the fight.

Hello, fellow travelers. I live in NM/USA and have just found my way to this site. I was diagnosed in June, 2012, W&W since June of that year. Have not yet met with a "CLL specialist" but have had what appear to be good hem/oncs along the way. Latest one has been pushing me (gently) towards BR treatment. Not sure that I agree with him, so switching docs. WBC now at 79.7 (highest ever was 100.3) w/ALC at 75.7 presently. Six months ago, ALC was at 44.5... RBC at 4.76 (not bad), Platelets at 95, hovering between 86 and 103 for the last 9 months. ALC now at 75.7. Fatigue? Yes, but not debilitating. No drenching night sweats, no fevers, no weight loss. Also had a secondary cancer that developed a bit over a year ago (vocal cord), successfully treated (or so it appears) w/surgical stripping and six weeks of radiation (which led to severe gout, but that is another story). If anyone has had similar issues (or even if not), replies/suggestions/recommendations most certainly appreciated! 63 y.o. male, mutated, 13q deleted. CD38 and Zap 70 show favorable prognosis. To treat, or not to treat? That - is the question~!!!?

[Newdawn Administrator]

Hi Francois and I can appreciate your dilemma. I think however that you're adressing your own doubts by asking for a second opinion from a CLL specialist. In the circumstances this seems a very sensible way to proceed even though you've got a good haematologist on board.

I was diagnosed about the same time as you and whilst my ALC is not quite as high and my platelets more robust, I've been subject to a number of infections and my immunoglobulins are taking a hit. Whilst you don't seem to have the B symptoms that would automatically propel you towards treatment, I'm wondering if you've been similarly affected? How is your neutrophil level? It sounds to me that the numbers are spooking your haematologist (particularly the platelet level) and that's often the difference between general haematologists and CLL specialists. A specialist may even suggest a different treatment option.

Your prognostic factors look good, you don't have anemia, bulky lymphadenopathy, night sweats, fever, weight loss or organ impingement so I'd definitely be exploring options further. I too have had a secondary cancer so we share some similarities on our journey.

Let us know how you get on and I hope your W&W can continue for some time yet without problems.

Regards,

Newdawn

[Hidden in reply to Newdawn]

Thanks for your reply. My ANC is currently at 3.8, though it had dropped to 1.3 in September. I do have an enlarged spleen and at times have had lymph nodes enlarged, then they shrink, then... Enlarged spleen present since first diagnosed in June of 2012.

[AussieNeil Administrator]

Hi Francois,

Further to Newdawn's reply, I suspect your neutrophils are at health levels, as these are normally responsible for most of the difference between your WBC and your ALC. You haven't mentioned having any problems with infections, which is a big plus. Provided you don't develop any further symptoms, I suspect a CLL specialist would continue to monitor you and falling platelets may be your trigger for beginning treatment. I'm only a couple of years younger than you and like you, my platelets have hovered between 83 and 124 the last 2.5 years, averaging 100 and my specialist hasn't yet started treatment discussions.

I'd definitely recommend that you ask for a second opinion if your platelets remain stable - i.e. no strong downward trend.

Neil

[Hidden in reply to AussieNeil]

ANC currently at 3.8, though it did drop down to 1.3 back in September. That 1.3 ANC is what first got my hem/onc doc talking about treatment. As for infections, I have now had an issue with sinuses though seems to finally be improving. Best described as "pressure" in my sinuses. Have been using more saline and just came across NeilMed's Nasogel - which seems to be helping. I have been on a Z pack this year, then 10 days of Levaquin, week off or so, then another 14 days of Levaquin, and now going through another 5 days. I have NOT had any fever, though - so I'm not sure if it is a bacterial infection or not - and could just be that I picked up a new virus after just starting to kick one. Hard to say. Thanks for your input!

[AussieNeil Administrator in reply to Hidden]

Given 'That 1.3 ANC is what first got my hem/onc doc talking about treatment.', I'd be looking for a second opinion. Neutropenia is NOT a trigger for starting treatment. My ANC dropped to 0.4 nearly 8 years ago, and an investigation into the cause found it was due to CLL bone marrow infiltration (54%). I've been neutropenic ever since, mostly under 1.3 and between 0.26 and 0.9 over the last 3 years. I'm still in watch and wait.

Neil

[Hidden in reply to AussieNeil]

Thanks! In addition to the ANC, though, was my platelet numbers staying under 100 on a fairly consistent basis for quite a few months. No nosedive yet, but trending downwards. And, yes - looking for second opinions. Contacted my GPs office today, explained situation, and they will hopefully help (i.e. pay, at least a portion) for me to see a true "expert". Fingers crossed!

[MsLockYourPosts Passed Volunteer]

Francois - Your numbers strike me as being at a point which would cause a good hematologist to start monitoring a little more closely and begin to consider best treatment options should they change more or should you develop troublesome symptoms. It is a good time for you to have, at least, a consult with a specialist, before you absolutely need treatment. Have you had a FISH test recently? It would give some indication bout which treatments are most likely to give you the longest remission.

[Hidden in reply to MsLockYourPosts]

Thanks for your input. Yes, they are starting to monitor me about every six weeks now instead of 3 (or more) months. Did have a recent FISH test, which shows del 13q14.3, which is a favorable prognostic variable. I wish there was one CLL expert nearby, but as far as I can tell - there are none in the state of NM. I believe the closest one would be at Mayo in Arizona and am considering starting the process of getting an appointment there. I'm pretty sure that my local HMO will not cover any of it so had been somewhat hesitant.

[Cllcanada Top Poster CURE Hero in reply to Hidden]

Might try Darvy Fuller SNMCC... Las Cruces..

~chris

[newyork8]

I am 11q (plus 13q and 6) unmutated, WW for 5 years. 55 y/o. Have fatigue, swollen lymphs, enlarged spleen/liver from the beginning. Some night sweats. No fever. Platelets above and below 100 from time to time My gut says I need treatment. Do I want till I get more debilitated? Could it be that watch and wait prevailed because the treatments in the past were less effective than now? Frankly we are confused because the doctors are confused as to when to start treatment. What is holding me back is 1. the possible side effects which might put me in a worse state than I am now 2. the likely illogical fear that once I start treatment the clock starts running to eventual demise (pessimistic but being honest here). I guess my view is that to the extent my enjoyment of life is now being impacted more than occasionally it is time. Fear of the unknown has held me back but I do of course wish to feel better. Now another tough question...which treatment!! As I am unmutated I will likely choose Ibrutinib (non chemo)-- though I'd like to wait for Acalibrutinib probably don't have the time for FDA approval and no trials near me. I tell myself I am so fortunate to have options. Best wishes on your journey.

[AussieNeil Administrator in reply to newyork8]

I don't think that 'Frankly we are confused because the doctors are confused as to when to start treatment.' is the case. The facts are that

- CLL is still considered incurable

- CLL becomes resistant to each new treatment, though researchers are still trying to work out whether this happens for newer treatments and that requires clinical trial patients to live long enough with new treatments to see whether all patients eventually become refractory. For Ibrutinib, some of the deletions that can lead to resistance are being determined, but there's still much more to be learned

- All new treatments have side effects. Not all patients experience them, but researchers don't know who will or won't develop side effects

- All CLL treatments wipe out good B-lymphocytes as well as CLL cells, permanently impacting the immune system and putting patients under treatment at risk of death from infections

These are the main reasons that I can think of as to why CLL specialists hold back on starting treatment until doing that is absolutely necessary. We just have to be patient for the data from clinical trial patients to be gathered and discussed, so decisions can be made on how the recommended CLL treatment guidelines should be changed to incorporate the latest non-chemo treatments. That unavoidably requires time...

Neil

[newyork8 in reply to AussieNeil]

Thanks for your reply! I've consulted with some of the best in the world. They disagree as to whether to start early or late. There just does not appear to be an absolute answer obviously. My decision will hinge on the fact that my symptoms are now impacting my daily life and I think most all doctors would agree that is a good reason. I believe the reason that some counsel to wait as long as needed is the historical fact that treatments did not achieve much. Fortunately the new drugs have changed that, so perhaps a new standard will arise in which you treat earlier to perhaps halt the natural mutational course of the disease. Does treating create more or less mutational change? Does the incidence of secondary cancers or transformation occur with greater frequency on or off treatment? My FISH results have changed substantially with no treatment. Of course, the verdict is out on these questions. We need to make decisions with imperfect and partial answers at this time.

[AussieNeil Administrator in reply to newyork8]

It is important to appreciate that both natural selection and mutation are always occurring with cancers. When any cell divides, there's a chance of a copy error occurring and in the presence of chemotherapy, this effect is worsened. (Chemotherapy works by disrupting the cell DNA copying process, thereby attempting to trigger cell death (apoptosis). This is why 17p/p53 deletions in CLL are hard to treat - the apoptosis machinery isn't there). The problem with cancerous cells is that they are already imperfect copies of the parent healthy body cell, with those imperfections involving the self-check mechanisms which would normally trigger apoptosis, hence the uncontrolled growth. All the cancer cells are constantly being tested by environmental changes (natural selection) and only cancer cells that can survive will clone.

So as you have noticed with your FISH test results, the predominant CLL clones change over time. Treating with chemotherapy will increase mutational change, but even the DNA of CLL cells in the presence of non-chemo treatments will gradually show a shift in DNA mutations - so called clonal evolution, from which drug resistance arises.

[Hidden]

Thanks for all the great replies - good info. Even found a fellow traveler in my area, now sharing information