Hello I'm new to this group. My mom, age 75, was just diagnosed with CLL with 17p deletion. She has no symptoms whatsoever except that her spleen is enlarged apparently. One oncologist wants to put her on IB immediately and but a second doctor thinks she should wait until she shows more symptoms. WBC at 42.6.
Not sure what to do. Any advice is appreciated.
Thank you.
Hi Tealynda67, and welcome.
I'm sorry that you and your Mom are dealing with this diagnosis. I've found this site really supportive and helpful and hope you do too.
From what I've read it's pretty unusual for someone to start treatment based on a WBC of 42. We usually trac the Absolute Lymphocyte Count (ALC) not the WBC. When watching the blood test results doctors usually watch the trend in the numbers rather than a single test. That requires tests over time. They watch how long it takes for the number to double which is a part of the guidance for treatment. BTW - It's also my experience that 42.6 sounds alarming on diagnoses, but it's not an alarming number in this community.
There are excellent references with the criteria for treatment, but it's an illness that is unique and there may be other health reasons for the first doctor's recommendation. We have really knowledgeable moderators who will probably share more concrete answers with you, but I wanted to reassure you that you've been heard and that we will support you as you figure this out.
Are you able to connect with a CLL specialist? This is the most common blood cancer but it's not at all a common disease and many general oncologists don't see many CLL patients and may not be as in tune as a specialist.
best wishes,
Dmary
Hi and welcome tealynda67. It is my hubby who has the CLL since almost a year but can look at labs going back to 2014. He has no symptoms but labs. He is 17p deleted. It has been thought to wait and watch. The new school of thought it to ‘hit’ it early. So, that is why your docs are giving different advice. We are holding off. My husband is just the type who won’t take a med unless he feels sick. Hope more here will advise.
Linda (Spacee)
Are these doctors general oncologists or hematologist's who specialize in CLL? Don't let any doctor rush her into treatment! Even if she should have it now, she has time to explore the options. And make sure the doctor recommending treatment has a lot of experience with what he is recommending.
There are specialists investigating the "hit it early" idea, but watch and wait is still the norm. Have your mother start collecting copies of her labs, scans, doctors' notes - everything about her medical situation. You don't mention how enlarged her spleen is, but that could make a difference. Also follow the ALC (absolute lymphocyte count, and other absolute counts, not the percents) instead of the WBC.
If you give your general location others here may be able to recommend a specialist near you. Some travel a bit to see a specialist periodically, who works through their local hematologist for routine checks, labs, etc. You might want to restrict your post to community only ( click on the v next to more, then edit, and scroll to the bottom of the post to change the setting. I doubt that your mother wants to read about herself on google.
If the spleen is affecting her ability to eat and/or sleep those are symptoms for treatment. With 17p- she is in the high risk category. Our new novel therapies, unlike the chemo of old days, does not cause the same kind to of harm to our bone marrow. Therefore, I am more inclined to believe that we attack the disease without allowing it to advance.
Dennis, 17p-, Ibrutinib
Thank you for the responses to my question and the warm welcome. Her local oncologist/hematologist suggested watch and wait. The 2nd opinion doctor (who's online profile states his expertise is "acute myelogenous leukemia (AML), myelodysplastic syndrome (MDS), lymphoma, bone marrow and stem cell transplantatione" said take the IB right away. In hindsight, while this 2nd opinion doctor is certainly an expert, I don't think CLL is his literal specialty.
The good news is that today we have a 3rd opinion appointment scheduled with Dr. Brown from Dana Farber in Boston. (yes despite the blizzard!) She was involved in the development of IB so hopefully we'll get some answers.
Question: where on the lab tests can I find the absolute lymphocyte count, not the percentage? I'm probably looking in the wrong place but it doesn't seem to be there. That's indicated in the blood work, correct as opposed to the bone marrow test?
By the way, her WBC count at 42.6 has indeed doubled in the last 6 months. And although her spleen is enlarged, she doesn't have pain from it.
Thank you.
Sounds like you're in good hands. Please keep us posted..
The absolute values are listed separately from the % on my labs. Lymphocytes are abbreviated ALC.
or LYMPH # or LY# or L ABS ... the number will usually have a K for 1000 never a %
They are often clusterd in a section called differentials...
However some labs don't break out the absolute values, because they aren't experienced in CLL, but you can take your white blood cell count [WBC] and the PERCENTAGE of lymphocytes, and plug them into this calculator, which will give you the absolute value... which is always less than the white blood cell count [WBC].
Just be certain your values are correctly scaled, there are a few variations...
mdcalc.com/absolute-lymphoc...
There are about 20 apps that do all kinds of medical calculations as well.
~chris
So here's an update on yesterday's appointment with Dr. Brown in the blizzard at Dana Farber. Bottom line is that NO treatment is needed now. But, she needs to be monitored closely because treatment will likely be needed sometime this year. Most important is that a clearer diagnosis needs to be determined so they did a lot of blood work and need to revisit the slides from her bone marrow biopsy. The nature of her cells is not perfect for CLL but they think she probably has a variation of CLL. Interestingly, the 17p deletion was found on 5-6% of the cells which is considered borderline so its unclear if its actually real. They also need to re-check her CD5, prolymphocytes which are at 9% and test the IGvh mutation status. Won't know the results of all this until we go back in 6 weeks.
Overall we are happy she doesn't need to start treatment yet. On the other hand, we want to know what the true diagnosis is. Glad to be with Dana Farber. They were great, particularly during the blizzard when everyone except those working on my mom were heading home.
Lynda
That's great news. I'm so glad that you've found a trusted doctor and that your getting the most up to date care. You're doing a great job of caring for your Mom and I know it's not always easy to be the person guiding the process for someone else. All the best to you both.
I am 17P deleted. I am on Imbruvica plus Ventoclax. Given the 17P deletion High risk a clinical trial with I plus V might be better in my opion. Or Maybe Imbruvica with Gayzva or Ventoclax with Gayzva.
In my opinions Combos are strong than single agents,
Be well,
Hoffy
Ibrutinib and a rash
Starting Ibrutinib
