Is there any new evidence emerging to indicate that it’s better to start immediate treatment for unmutated IgHV and normal FISH even if it’s CLL stage 0??
I ask this because an oncologist acquaintance of mine said it’s better to start treatment immediately instead of wait and watch. I would rather wait and watch and listen to my haematologist.
Oncologists specialise in solid tumours, where in general, commencing treatment earlier results in a better outcome. There are however, some solid cancers where "watch and wait" is an appropriate management protocol. It's all about weighing up potential reward vs increased risk from early treatment. With the arrival of the newer targeted CLL therapies, there was renewed interest in investigating whether starting treatment early was advantageous, but that was limited to clinical trials for higher risk (e.g. complex karyotype) CLL.
All current CLL treatments come with an increased risk of infection, at least in the initial stages of treatment, plus the side effect and adverse event risks of the newer drugs still make early treatment more risky than continuing on watch and wait. When you also consider that you could stay in stage 0 for many years and perhaps never need treatment, plus have better treatment options available to you if you do eventually need treatment, not treating earlier than necessary still makes sense. Also, when you start treatment, you put yourself at risk of developing resistance to the treatment drug. That starts you on the treadmill of looking for the next drug to switch to when your CLL again needs treatment. Why do that earlier than needed?
Keep listening to your haematologist 
.
Neil
Thanx Neil. Will follow your advice and that of my haematologist
Hi nooji I agree with Neil. I would always follow my haemotologists advice.Ann
Nooji - As someone who has been on W&W for 14+ years now ( I am mutated with confirmed13q double deletion), I can verify what Neil has just stated. In particular, the part about better treatments becoming available over time.
At the time I was diagnosed (back in 2006) the standard frontline treatment for CLL in the US was the multi-drug CHOP infusion. Rituximab was then introduced and R-CHOP provided significant improvement in outcomes for most patients needing immediate treatment. But it has been with the introduction of BTK inhibitors that the treatment options have really been revolutionized - and the improvements in that class of oral drugs just keep on coming.
As we all come to know, unmutated status does put one in a higher group than us "mutants", but with normal FISH, it seems patience is the prudent path to follow.
As always, just my n=1 observations. Everyone's mileage may vary.
Get vaccinated, Continue to Be Safe & to Stay Well - K9
Hi Nooji, Did you ever see the movie "Big" with Tom Hanks? There is a great scene where Hanks, suddenly in a grownup body, is terrified to live alone in the city where he hears constant sirens and angry yelling. Fast forward to his becoming inured to all of it. Those scenes always remind me of the CLL stages of acceptance.
I too am unmutated. And I still have quite a few full bottles of EGCG that I stopped bothering to take years ago.
None of us can really tell you to skip the process of going through what you're going through. It's your process. But we sure wish you could fast forward to the part where you don't have to worry about this so much, as counter-intuitive as that seems.
Hang in there!
😀 - thanx for the analogy. I’m quickly beginning to accept the fact. Thanx
Currently the advice of CLL experts is to W&W as in the past the treatments have generally done more harm than the disease. However, my consultant says they are looking at whether there are benefits to starting treatment earlier than has been traditionally the norm given new drugs are less invasive and achieving such significant results. If caught early, the theory being examined is it may slow down the progress of CLL indefinitely especially for those who are unmutated. There is also the move to the W&W decision being based on the individual make up of the disease as treatments become more ‘bespoke’ in cancer generally. So, it may change in time but for now W&W is still the recommendation of most experts as far as I know.
Noonji,
The people above have very well articulated the viewpoints of a watch and wait candidate- which your own description seems to match.
So, assuming you have no other serious issue or you have somehow mis-described your situation; No CLL specialist or even typical Hematologist in USA would start treating a zero stage CLL patient at stage zero. You did not share your white blood cell count - if it is in the hundreds of thousands this could be a reason to start treatment. So not all of your facts are known to us and we cannot say for certain.
A second opinion from a CLL specialist is ALWAYS recommended before treatment. There are a few
foundations that can offer guidance- CLLsociety.org being one. There are others too.
My doctors told me the #1 symptom of CLL is anxiety. Try to be patient, and slow down - acceptance is the first medication we all must take.
It’s going to be OK!
Hi Billhere, thanx for reaching out.
I've had about 12 CBC tests over the last 4 years (4 in the last 3 months), my total WBC counts are in the normal range 5700-9500. Across these tests, my neutrophils are low 35%-40% and lymphocytes are high 47%-60% . Flow cytometry confirmed CD 19+, CD20+++, CD23+, CD200+, FMC 7 trace, CD 38 trace, CD 79b ++, CD3 negative, Surface kappa light chain - trace, surface lambda light chaine - negative. Based on this, the haematologist classified me as CLL Stage 0. FISH test came out negative for CLL, but IgHV results showed that I was unmated.
Haematologist suggested wait and watch. But on a second opinion an oncologist recommended starting with Ibrutinib 140 mg twice daily.
I'm going with wait and watch and not starting any treatment.
I've started taking EGCG 1000 mg and Turmeric 1000 gm on alternate days. Along with this I'm doing 17-7 intermittent fasting on a low carb diet.
If your WBC is is the normal range and you are in stage 0, you are doing very well, but please monitor absolute counts rather than percentages per these two posts:
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
Neil
Thanx Neil. This is great info. Learnt something new today.
Hye. Does Egcg and Turmeric help you ?
Hello!
The situation is different for everyone. It’s too early to say if it’s helping. I’ve been alternating the two for a little over a year. I’m still on W&W, and my ALC numbers are below 6000 in the last year since DX. My discovery is as accidental because my lymphocyte % was above the normal range for a few readings. And lymphocyte % is not what matters, it’s the ALC and doubling time while on W& W.
I’ve been lucky and blessed so far. Wish, hope, pray that I will be on eternal W&W. if I can cross 75, I will count my blessings. I’m sure I will cross 75 (another 16 years) given the current options available
Wait & Watch question
Watching and waiting?
unmutated cll patient treatment with fcr 
CLL watch and wait 3yrs, then spike after vaccine.
