Please can you tell me your symptoms and the levels of your WBC when you were started on Ibrutinib...

[RitaBa]

I am new here and live in London,UK.

I was first diagnosed with CLL ten years ago at the age of 50. Then my WBC was 25. Today it is 183 and my consultant wants to start me on Ibrutinib - I am VERY nervous because it is still a fairly new treatment.

Please can you tell me your symptoms and the levels of your WBC when you were started on Ibrutinib.

Also I wonder how long one can take Ibrutinib for - has anyone taken it for more than 5 years?

Are my days numbered after I start the treatment?

[lfm73]

I started ibrutinib after a bout of pneumonia in April 2017. My WBC was 399 and had increased from 272 within two weeks. My last WBC in November was 35. All other numbers are now normal and am getting close to remission. I am stage 3, with high risk prognosis, but am hopeful that my progress will continue and I will continue on this path for a long time.

[RitaBa in reply to lfm73]

Thank you - I was told I am stage 3.

Wishing you continued good progress.

[lfm73 in reply to RitaBa]

I wish you the same. Stay in touch.

[Hidden in reply to RitaBa]

How did they determine your stage, bone marrow biopsy?

[RitaBa in reply to Hidden]

No bone marrow biopsy. Rai scaling - i think. It was years ago and I didn't ask again.

But I am thinking I do not have too many symptoms so I will hold off treatment for now. This forum has been very helpful.

[PlanetaryKim]

Hi Rita. Speaking as someone who is having very good success on Ibrutinib right now (and I just started 3 months ago), I think you should go for it if it is being offered to you, and if you need to start treatment. No one has been on it longer than 5-6 years. That's when the first trials started. So it's true there is no long-term data. But it will correct your immediate problem. And you will not be locked into it forever. Newer and even better drugs are coming. Some will enable us to stop the Ibrutinib and get a remission that holds.

My WBC and lymphocytes were never high, so I can't help you on that part of your question.

Good luck!

kim

[PlanetaryKim in reply to PlanetaryKim]

Also... Do you have any other symptoms besides high WBC? What is your Lymphocyte count? That's the number you need to look at rather than WBC. If you don't have other symptoms or cytopenias, that WBC count may not on its own really be enough reason to start treatment. Are you seeing a CLL specialist? That's who you really want to get hooked up with at this point before starting treatment.

kim

[AussieNeil Administrator in reply to PlanetaryKim]

Further to PlanetaryKim's replies, CLL specialists don't treat simply on the basis of a high lymphocyte count - there need to be other considerations behind the recommendation to start treatment, such as the lymphocyte doubling time being under 6 months, nodes getting larger than 100mm/4 inches in the longest dimension, platelets dropping below 100, haemoglobin dropping below 10 or other factors. Some of our members have lymphocyte counts higher than yours and are still in watch and wait:

healthunlocked.com/cllsuppo...

Many members have shared their treatment experiences with Ibrutinib, it's generally well tolerated and if you do have side effects, they do tend to lessen over time.

Neil

[Zoey123 in reply to AussieNeil]

Hi my dad is having a bone marrow today im so worried will he have to start treatment his immune system is low hes anemic and lost loads of weight.theyve also done a ct scan thanku

[AussieNeil Administrator in reply to Zoey123]

Many of us have been through treatment - some of us many times. There's an increasing range of treatments available, depending on where your father lives. What's important is that he has a FISH test to check what genetic damage (deletions) his CLL has, as this determines which treatment type will work best.

I suggest that you post the particulars about your father's results in a new post if he is willing to share them and ask how others have gone on the various treatments offered to your father - if he does need to start treatment. Being sufficiently anaemic (haemoglobin under 10) or significant, unplanned weight loss are some of the triggers for starting treatment.

Neil

[MsLockYourPosts Passed Volunteer in reply to Zoey123]

Zoey - Getting treatment, if needed, will probably make your father feel much better. Many don't realize how much their CLL has affected them until they start treatment and feel much better.

[Zoey123 in reply to MsLockYourPosts]

Thanku for yourreply i really hope so

[RitaBa]

Thank you Kim.

My Lymphocyte count is 158. Platelets 117 and Neutrophils 5.5

So were you started on treatment without your WBC or Lymphocytes being high ?

I have tiredness/ lethargy - around 50 per cent of the time, no infections but feel weak. Is that enough to warrant starting treatment, my CLL Consultant in London seems to think so.

[PlanetaryKim in reply to RitaBa]

Hi Rita. There are various criteria for determining when it's time to start treatment. At least one of them needs to be met. high lymphocytes alone is not sufficient, I don't think. But if lymphocytes are high and have doubled in last 6 months, then that does meet one of the criteria for starting treatment.

Other criteria for starting treatment, as AussieNeil mentions in the comment right above yours, are: "nodes getting larger than 100mm/4 inches in the longest dimension, platelets dropping below 100, haemoglobin dropping below 10, or other factors."

You don't need all of those things. Even one can be enough to trigger treatment.

Fatigue (with no other cause apart from CLL) can also be a reason for starting treatment.

The reason it is so complicated is because CLL/SLL can present in many different ways. So in my case my nodes were never enlarged and my lymphocytes and WBCs were never high, but I was very anemic and neutropenic. I also had low Platelets but they weren't seriously low like my hemoglobin and neutrophiles were.

It really takes a CLL specialist, not simply a general hematologist or an oncologist, to sort this all out and make the best call about when to start treatment and which treatment it should be. Hope you are seeing a CLL specialist.

Good luck!

kim

[Sallyurnotal]

RitaBa

My symptoms or coughing, pain in chest, bloated stomach, pain in upper right my liver.

Rita my WBC has been in normal range for over a year or close

My advise is live every day to the fullest try to believe that you are being given hopefully more time to enjoy this wonderful and beautiful world.

Sleeping 20 hours a Day is not what I want to do. Have a wonderful Christmas.

[RitaBa in reply to Sallyurnotal]

Thank you Sally. Wishing you a lovely Christmas too.

[vinnet]

Hello Rita

I was dx CLL one year ago, now on wait and watch.

I cannot answer your querry but I am keen to know if your quality of life was affected during 10yrs of wait? Did u do anything special to get 10yrs wait and watch?

I am very keen to have 10 yr wait and watch with good QOL...

As such ibutrinib in India is very expensive and most of us cannot afford.

best wishes

vinnet

[RitaBa in reply to vinnet]

Hi Vinnet,

the quality of my life was affected initially and that is how I came to be diagnosed. I was getting constant infections (having to be treated with antibiotics) / very low energy/ borderline anaemic and some swollen lymph nodules.

I was on wait and watch and wasted a year or two worrying then i decided to try alternative / naturopathic remedies while i could. Under the guidance of a qualified practitioner I changed to a super healthy diet of minimal carbohydrates and sugars / no dairy / plenty of green vegetables and of course the green smoothies and juices.My lymph nodes are no longer enlarged and I do not get infections (had to overdose on garlic to achieve that!). I do get tired but still manage to do my Body Pump class most days.

I will put off treatment as long as I can but my Consultant tells me i should start. However after the feedback from this wonderful forum I am going to check whether he is a CLL specialist or a Haematologist.

Wishing you the best.

Rita

[pkpayne]

Hi Rita, By no means am I an expert like many on here but I can tell you that I have been on IB since late September. So far I've had zero side effects - unless you count a little heartburn but it's nothing that can be dealt with. I think my symptoms were my wbc rising and at the time of starting they were around 70. Now they are up to 220 at last draw but that is lower than the previous reading which was 228. This week I will also start the ramp up on Venetoclax and will be monitored closely for TLS. I think IB has been around long enough that you shouldn't fear starting treatment. If you are concerned maybe you could get a second opinion.

[RitaBa]

Thank you pk.