To start treatment or not? Please.

[bayside64]

Just returned from a 3 month checkup with my oncologist. My labs are all stable, but not normal. WBC is 140. Not anemic. I have 11q deletion which presents itself with enlarged lymph nodes. I’ve been on W and W for 4 years. Based on an extremely large spleen (he cannot even feel the spleen) he said it is time to start Acalabrutinib. Your thoughts, please. My enlarged spleen (was at 19 a year ago) and my neck lymph nodes do not bother me.

[Hidden]

i'd do as doctor suggests.

[PlanetaryKim]

Hi Bayside. What do you mean when you say your spleen is extremely large but your doctor cannot even feel it? Usually the reverse is true - the larger the spleen becomes, the easier it is for the doctor to palpate (feel) it.

Enlarged spleen can be a concern, But if that is your only reason for starting treatment, and if your doctor is not a CLL specialist, but just a general oncologist who mainly treats solid-tumor cancers... I would get a second opinion from a CLL specialist before starting treatment.

However, acalabrutinib would be a very good treatment to start with. I would just want to confirm whether a CLL speicalist thinks it's time to start treatment. CLL specialist sees nothing but CLL patients all day long.

Good luck!

kim

[bayside64 in reply to PlanetaryKim]

Spleen measured 19 last year. Now he said it is below my belly. It is huge but doesn’t bother me at all. The lymph nodes in my neck are also bulky and very very big. They don’t cause me any pain. Overall, I am doing well. I interviewed and consulted with 6 physicians in different locations in the U. S. before deciding on the one I see.

[PlanetaryKim in reply to bayside64]

Sounds like you have consulted with a lot of physicians, Bayside! Good for you for being pro-active. Is one of them actually a CLL specialist though? That is a doctor whose entire patient base is CLL patients and no other disorders, and who is usually also involved in clinical research and attached to a cancer centre? Because a general hematologist treating all blood disorders, or a general oncologist treating all cancers will not have the necessary insight about when to start treatment.

I ask because a surprising number of people automatically assume that their "specialist" is actually a specialist working exclusively in their disorder. I was having lunch a few months ago with a CLL woman who swore repeatedly she was seeing a CLL specialist. But when she told me his name, it turned out to be one of the GP-oncologists at the local cancer clinic we both go to for our periodic check-ups. So the person she had assumed was a CLL specialist was in fact not actually even a full-fledged oncologist but rather a family physician who had added an oncology specialty so he could have a salaried GP position on staff with the hospital instead of the rat race of family practice which requires doctors here in BC to also be small business people. (This is why we have a GP shortage in BC right now and tens of thousands of patients in BC including me have no family doctor at all. But that' another story altogether!)

I myself didn't really understand the difference between a CLL specialist and the local hematologist I was initially seeing... until people on this group kept urging me to get a bonafide CLL specialist. And now I see the difference, and the importance of that.

It certainly sounds like you're heading toward treatment with the spleen enlargement and bulky neck nodes. You're lucky that acalabrutinib is being offered to you! A lot of people wouldn't have that option for first-line treatment.

Good luck Bayside!

kim

[Newdawn Administrator]

You’ve done well having 4 yrs on W&W with 11q because it’s usually quite a lumpy presentation as you’re finding.

I can understand your difficulty because it sounds like you feel reasonably well and the enlarged nodes and spleen have become your ‘new norm’. I was in the same position and probably could have waited longer. However, 11q does ‘up the ante’ somewhat and you need reserves going into treatment. There’s a lot to clear out and in simple terms we need some wiggle room. It also helps to feel well and not depleted.

You don’t say how much outside of the norm your labs are or how big your spleen has become but I wouldn’t be waiting until the spleen starts to gobble up the platelets and haemoglobin before acting.

Give it some thought and discuss options. It doesn’t sound imminent but your doctor will be taking into account a whole host of blood tests and issues in making the recommendation. As Kim says, hopefully this is a specialist in whom you have faith.

Best wishes,

Newdawn

[WinJ3]

I agree, you need to get a second opinion from a CLL specialist, if possible.

Win

[bayside64 in reply to WinJ3]

I appreciate your suggestion. Thanks so much.

[Notmuchenergy]

Can you ask him to explain exactly why he thinks treatment is the best way forward at this point. Just thinking it would help if you had all the fact

[bayside64]

He said if i didn’t start treatment now, my spleen would just continue to grow.