Start IMBRUVICA or not

[Turbinator]

I’m 69 yr old male with 82,000 wbc. The remaining blood tests fall in the normal range. I do not have any symptoms, but I’ve been diagnosed having CLL. I’ve had many many blood tests over the past 2-3 years with wbc escalating from 14k to 92k and then back to 82, 000. I feel okay. My Hemotologist recommends I start IMBRUVICA. I cannot decide to start or wait.

[Jonquiljo]

While I have yet to start treatment, it seems that your doctor is being a bit premature IMO. You have no symptoms - not even fatigue? I certainly would wait.

[Turbinator in reply to Jonquiljo]

Jonquiljo..thank you for your response. Let me be more specific. I do tire easily and get short of breath when I climb stairs. However I’m very overweight.

Secondly, a CAT revealed a tiny tumor and my spleen is enlarged, but within the “ normal “ range.

So, I have CLL, but I’m doing okay. Why take a med that might make me sick?

[Jonquiljo in reply to Turbinator]

I agree. It doesn't make much sense to treat you for CLL now.

[PlanetaryKim]

My understanding is that high lymphocytes alone (and that's the relevant number to be following rather than WBC) are not in themselves reason for initiating treatment. There need to be other symptoms - fatigue, fever, night sweats, unexplained weight loss, low neutrophils, anemia, frequent infections - any of those are possible reasons for initiating treatment. Are you seeing an actual CLL specialist? I.e., a hematologist who treats nothing but CLL patients? That's really who you want to see before you start treatment. other doctors are not quite dialed in enough.

I've been on Imbruvica for nearly 2 years and am very happy with it. But I was quite sick from CLL before starting.

Good luck!

kim

[Turbinator in reply to PlanetaryKim]

Kim, thank you so much. I do not know if my Hemtologist/Oncologist is CLL only. I’ll check to see my Doctor’s cancer specialty.

Appreciate your help.

Turbinator

[DisneyMom]

I would be concerned that your hematologist wants to treat on WBC alone. If you're not symptomatic, it definitely seems premature to treat. Just my opinion.

Carol 🇨🇦

[Turbinator in reply to DisneyMom]

DisneyMom, my Lymphocytes Absolute Count were: 77.1 x 10E 3/UL.

And my WBC was 82,900 at my last CBC Test.

Thank you

Turbinator

[MsLockYourPosts Passed Volunteer]

I agree with others that you need a second opinion. If you give your general vicinity other members may be able to recommend someone near you. cllsociety.org also has a list of patient recommended doctors.

[Turbinator in reply to MsLockYourPosts]

MsLock, I’m in central Maryland, near Baltimore City. Thank you for your help.

Turbinator

[Newdawn Administrator]

Starting Ibrutinib for a high lymphocyte level alone isn’t without possible implications Turbinator so I agree with the others. It’s a marvellous, wonder drug when absolutely needed but it can have side effects. My joints have been very badly affected and I’m covered in petechiae a lot of the time. Not everyone suffers side effects but many do.

Seek a second opinion and get yourself as fit as you can for when treatment is absolutely needed. Make sure you check out other issues however.

Best wishes,

Newdawn

[Turbinator in reply to Newdawn]

Newdawn, at one time I was an athlete who participated in Triathlons for many years. In addition to CLL I have had shoulder, knee, and now slated for major foot surgery. Arthritis is painful too, yet I continue to maintain our acreage as well as work in my garage and metal shop. I move slow, but I move in productive ways.

Thank you

[Newdawn Administrator in reply to Turbinator]

Your fitness will serve you well Turbinator.

Best wishes,

Newdawn

[Bill1288]

Turbinator: My advice is to look for a Cll Specialist if possible and get a second opinion.

Wishing you the best.

Bill1288

[Turbinator in reply to Bill1288]

Bill, Frankly, I believe you are 100% correct. Thank you for your input.

Turbinator

[Turbinator]

cllady01- My blood test out of normal acceptable ranges were:

77.1 x 10E 3/ul

82,900 Lymphocytes absolute count

Those are the only two that are out “ range” given on my last CBC test.

Thank you

Turbinator