New symptoms need attention ??

[CLL07072022]

Hi greetings to everyone.

I was Dx two years ago per the only one test of Flow Cytometry, still in W&W, seeing GP and hematologist/oncologist every three months. In my last visit to the clinic on July 3, the NP found two more larger lymph nodes about 1/2 inch in diameter under my chins. Since then I sweat a lot RIGHT AFTER every mid-night wake up (not during sleeping though) and while taking a walk even in the well air-conditioned mall. Other than that no any other CLL symptoms. I am still living an active normal retirement life over CLL, travel a few times every year.

The two years summary of my 3-month interval CMP readings: WBC up linearly from 13.3 to 20.3; ALC up from 7.9 to 15.9; RBC down from 5.28 to 4.50; Platelets down from 218 to 161; LDH about the same in the neighborhood of 180.

AT THIS POINT do I need any other tests such as FISH , ultrasonic, CT or MRI ? Do I need to see a CLL specialist to get a second opinion? BTW I have just jointed a local CLL Society in southern California and expect to attend a support group meeting in mid-August. Your comments are very much welcome. Thx in advance.

[Richard_TX]

In my second year of W&W my WBC went from 13.6 to 21.4. If I understand you correctly that's about what your WBC did. Everyone is different but I was on W&W for 7 years and never had any symptons (like night sweats) except for swollen lymp nodes. Started treatment on Brukinsa last May and my Dr's tell me they wouldn't know I had CLL by looking at my now normal blood counts.

When my WBC got over 200 I knew treatment was coming, so I went for a second opinion (MD Anderson), and they gave me some treatment options with Brukinsa at the top of the list. I felt way more comfortable with my Dr's at MD Anderson than with my local Hematologist/Oncologist who had been seeing me from the beginning. So a second opinion was a good choice for me.

My treatment on Brukinsa (zanabrutinib) entails taking 4 capsules (4x80mg) every morning without any side affects at all and my lymp nodes shrunk significantly in the first 2 weeks on Brukinsa and my blood counts are all in the normal range. It's a game changer for CLL.

[CLL07072022 in reply to Richard_TX]

Thx Richard and CajunJeff for your quick responses. Since both of you suggested a CLL specialist, I'll keep that in mind and try to look for one in my system. Hopefully I can stay much more and as longer as possible in W&W. I also learnt from this site some newer and better treatments options are available. It's good news for all of us. Keep the positive spirit going...........

[cajunjeff]

Hello Cll07, I think it’s kind of hard to say that you are on any trajectory towards treatment based solely on your lab numbers. The drop in platelets and RBC are not insignificant, but there are lab testing irregularities and there’s not enough there to establish a clear trend (in my non medical opinion).

I suppose reasonable minds can differ if you need a FISH test now or CT or MRI. I think all these tests are done at diagnosis in most major cancer centers, at a minimum to establish a baseline and to see if there are any signs of a more aggressive type cll that might need closer monitoring.

I personally think everyone who has the resources to do so should consult with a true Cll specialist. Our treating landscape changes so rapidly it’s hard for someone in general oncology or general hematology to keep up. I think a standard workup at most places like MD Anderson or the Mayo Clinic would include not only a FISH test and a ct scan, but also a bone marrow biopsy and IGHV testing (my typewriter had somehow autocorrected “bone” marrow biopsy to “boner” marrow biopsy, glad I caught that, lol).

There are many doctors in many countries who might consider such testing too prognostic and too expensive to do on a routine basis. I am with the other school of thought that all such information can inform true cll specialists in the many decisions they have to make with our care, including when to treat and in choosing for us what meds to start treatment.

[lankisterguy Volunteer]

Hi CLL07072022,

You mentioned joining the CLL Society, and since you don't have an expert yet, you can get a free video 2nd opinion from a CLL expert here:

cllsociety.org/programs-and...

You may also want to use these CLL Society suggestions:

cllsociety.org/newly-diagno...

cllsociety.org/newly-diagno...

and depending on which CLL support group you attend, you may see this guy at the meeting:

youtu.be/WC9NdCtF62M(Not working as expected?)

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These pinned posts may help also:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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Len

[CLL07072022 in reply to lankisterguy]

Your information comes just in time for me to add it to my list of questions before the support group meeting. Thank you so very much.

[Spark_Plug]

Hi CLL07072022, I agree with cajunjeff tests as a baseline make a lot of sense. The only difference, and it is only a difference, is I would wait until all tests are done and then, before treatment time seek the free CLL specialist visit.

The thinking on this is, is such, my oncologist / hematologist is experienced and I'm a slow moving stable patient with fairly good markers. If I use my free visit now, I only get a confirmation of my CLL. However, when it comes time to treat having a specialist's input on correct treatment would be more valuable.

Now it is the factors that make me comfortable with this are that I'm at a cancer treatment center already, that will funnel me to the experts for CLL at the right time. And, I am not very special in the type, progression, or other abnormalities.

So, just as no one's CLL is exactly the same, no one has the perfect way to make these choices. The circumstances must fit the path you choose.

🙂

[CLL07072022 in reply to Spark_Plug]

Thank you for your input 🙏

[Silvafoxe]

I was diagnosed with CLL in Dec 2022 from biopsy of enlarged lymph node. Prior to that cbc showed a page of red marks. WBC was treated. They explained how they diagnosed the CLL. I had a bone marrow biopsy and PET scan. I decided to go to the local MD Anderson and they advised that I wasn’t bad enough for treatment since all treatments have side effects. I went back and told the oncologist. I stayed on w&w about 7 months. Because my anemia was getting worse the oncologist prescribed Brukinsa. After about 3 months blood tests showed improvement and lymph nodes were almost normal. At this point I’ve been on the med about 7 or 8 months. Recent Pet scan showed nodes to be normal but incidentally upset me by saying what was initially said to be mild emphysema had changed. Oncologist told me to stay on the brukinsa. He was pleased with the CLL results. He wasn’t concerned about the emphysema. I will address that with primary doctor and see if she thinks I should see a pulmonary doctor. Sadly inhabits and Gerd which may have contributed the emphesema but like the CLL it’s chronic and no cure. As you can see my oncologist sent me for various tests but we are all different. Immediately he had biopsies done. Guess if you’re feeling concern you might express to your doctor or get a second opinion. Blessings to you