Detected with CLL

[Kkkaaarrr]

Hi , i was detected with cll in march 2021 at that time my wbc was 30k but with no symptoms so i was on wait and watch,after few months i got brain hamerroage and i was in hospital for 1 month after that i recovered but still my left side is weak , my wbc increased gradually and after 3 years it has reached to 100000 and my doctor is sayin to start alcabrutinub. But i am confused should i start or should i wait as i have no other symtoms and also because of my other health conditions.

[lankisterguy Volunteer]

Hi Kkkaaarrr

-

There was another discussion on this point - just a few hours ago- see

healthunlocked.com/cllsuppo...?

and this pinned post from 6 years ago that has been confirmed repeatedly by more recent trials :

healthunlocked.com/cllsuppo...

-

In 2010 I had an inexperienced doctor start my treatment at 100,000 WBC, and it was 2 years later I learned that she was using criteria for different blood cancers and not appropriate for CLL

_

Len

[Kkkaaarrr in reply to lankisterguy]

Thanks for the guidance len

[MisfitK]

It's hard for us to comment without seeing your other results and trends. Normally, 100K and asymptomatic is not a signal to start, but you may have other blood factors indicating that it is time.

[Kkkaaarrr]

Actually rest all parameters are fine still doc is telling to start

[Sushibruno in reply to Kkkaaarrr]

You need to know your other test results like your hemoglobin, platelets, red bloods cells, neutrophils ect. If some of these numbers keep trending down it’s an indication of needing treatment. In my case it was my hemoglobin trending down and my 97% infiltrated bone marrow.

[Kkkaaarrr]

Thanks jammin

[Kkkaaarrr]

Also does alcabrutinib cause heart issues ??

[Sushibruno in reply to Kkkaaarrr]

Acalabrutinib can cause some heart issues but it’s rare.

[Kkkaaarrr]

Present case revealed heterozygous 13q deletion as well as homozygous 13q deletion.

The heterozygous as wel as homozygous 13q deletion are recurrent abnormalities in CLL.

Freq is 44 percent for both

This is my fish report

[Kkkaaarrr]

Flow cytometric Immunophenotyping shows 70% B Lymphoid cells ( CD19 Positive, CD45 Bright / Low SSC ). These cells also express CD5 (Partial / Dim), CD23(Partial / Dim), CD 200 (Bright), IgM (Partial Dim ) and shows Lambda light chain restriction (Heterogenous). Other markers tested including CD11c, CD20, CD25, CD38, CD49d, FMC7, IgD, Kappa light chain and all other T Lymphoid markers are absent in these cells.

This is flow cytometric report

[Kkkaaarrr]

what does this two reports suggest ?

[scryer99]

If your only CLL-related symptom is 100k count, that's not enough of a reason to start treatment. Some of the threads linked by others here will get you to a more definitive list, but in general some signs to look for:

low platelet counts

anemia

swelling in spleen > 6 cm below rib cage

significant lymph node swelling

But if you feel OK and are not seeing obvious signs of blood degradation or accumulation in places that are going to cause other health problems... then you should not start treatment. Early treatment doesn't improve survival rates and just hastens the day when you run out of treatment options.

If your doctor is insisting that 100k is a treatment marker, that's a bad sign about his knowledge of CLL. You need a second opinion at a minimum. cllsociety.org has some good resources on how to go about lining up a CLL specialist to get that opinion from.

[Kkkaaarrr]

Real time ultrasound examination of whole abdomen shows normal size liver with normal echotexture. Liver span measures 11.2 cm. No localised area of increased or decreased echogenecity. The intra as well as extra hepatic biliary radicles are normal. Hepatic veins appear to be normal.

CBD and Portal vein is normal in dimension.

Gall bladder is physiologically distended and normal in size, shape and position. It shows normal wall thickness. No evidence of calculus or cholecystitis.

Pancreas is normal in size and shows normal echotexture. Pancreatic duct is normal in dimension. No abnormal area of calcification or mass impression.

Spleen is normal in size and shows normal echotexture. Splenic vein is normal in dimension. Spleen span measures 9.9 cm.

Both kidneys are normal in shape, position, axis and outline. There is no evidence of calculus or hydronephrosis.

Right kidney appears small in size and measures - 7.8 x 3.8 cm.

Left kidney measures - 9.5 x 4.8 cm. A 4.1 x 3.5 cm simple exophytic cyst is seen arising from inter pole of left kidney.

Both kidneys show normal cortico-medullary ratio and differentiation. No evidence of free fluid in the abdomen.

Multiple reactive lymph nodes are seen in the retroperitoneal region, largest measuring 1.8 x1.1 cm in left para-aortic region.

Urinary bladder is empty.

Prostate is normal in size with normal echotexture. Prostate measures 4.0 x 3.9 x 2.9 cm (Weight- 24 gms.)

lPRESSION: Ultrasound findings are suggestive of:-

1. Retroperitonealreactivelymphadenopathyasdescribed.

2.

Left renal simple exophytic cyst.

3.

Normal Liver, Gall bladder, Pancreas and Spleen. 4.

Normal Prostate.

This is ny recebt USG of abdomen and pelvis

[SofiaDeo in reply to Kkkaaarrr]

I don't know how many (i.e. the range of numbers) your healthcare system radiologists use when stating "multiple" on a scan, but I note you have "multiple retroperitoneal reactive lymph nodes" with the largest being 1.8 x 1.1 cm in the left para-aortic region. While this isn't a huge lymph node, it *is* near one of the main parts of one of the the largest blood vessels, the abdominal part of the aorta as it descends down into the abdomen past the kidneys before the blood vessels starts branching out more. So a group of swelling lymph nodes around this vessel may be a concern. As lymph nodes grow, ones here may affect blood flow much more than a lymph node under our jaw or in an armpit.

Do ask "why" you need to start treatment. Without knowing your entire chart, as your doctor does, it's difficult to say "why" they want to start now. If it's only because your lymphocyte count is growing, that may not be enough. Do you have palpable external lymph nodes, or scan of other regions showing lymph ode involvement? Some presentations of CLL are classified as SLL, because they manifest more as enlarging lymph nodes than rising lymphocyte numbers in blood. Were there enlarged lymph nodes in the brain, causing or aggravating the hemorrhage? No one here has the entire picture. Please speak with your doctor, ask for the reason(s).

[Kkkaaarrr in reply to SofiaDeo]

But i had UTI 25 days back and i took the medicine for that and got recovered.. does lymph node is swollen because of that ? This usg report is just after i completed my course of antibiotics of 10 days…do i need to do usg after another 15-20 days ??

[SofiaDeo in reply to Kkkaaarrr]

I don't know why your doctor order the ultrasound, or if a repeat will be wanted. You have mentioned you have some other health problems, and there can be a number of reasons your doctor wants one depending on your symptoms.

You mentioned an infection. Have you been having a series of infections lately, or recurring ones? Do you know what your immune globulin levels are?

If you are taking meds for other conditions, that can complicate treatment decisions.

AussieNeil gave you a link to the international consensus for treatment recommendations. Since medicine is an art as well as a science, there is some flex in deciding when & why to treat. You really need to read that best as you can, try to learn the recommended reasons to start treatment, and if your doctor had been given incorrect information (for example, in thinking CLL is treated like other lymphomas as AussieNeil noted) please discuss the guidelines with them. There may be a reason or reasons, based on the sum of your health past and current issues, for your doctor to think you need to start treatment.

If the only "reason" is because your lymphocyte count has reached 100,000, then your doc has the incorrect treatment guidelines because that alone is not a generally recommended reason by people who specialize in CLL to start treatment. Please make sure you bring a printout of the guidelines to discuss. If you can email a link to the guidelines well ahead of time of your next visit, in addition to you bringing your copy, that may be optimal. Your doctor will have some time to research and discuss the data with others.

[Kkkaaarrr]

platelet hemoglobin level all in normal range only wbc is 109k and lymphocytes is 97k

[Sushibruno in reply to Kkkaaarrr]

If all your numbers are in normal range including liver and spleen, then this is not an indication for needing treatment. If you have access to cll specialist I highly recommend that you see one or get a second opinion.

[Adlucy in reply to Kkkaaarrr]

I was told at the outset by my consultant that the indication for when I would need to start treatment was if my lymphocytes had doubled in six months. This was the case when I started plus my haemoglobin and platelets were dropping.

[Kkkaaarrr in reply to Adlucy]

My wbc was 70k in nov and today its 109k so in 6 months its not doubled and hb is 12 and platlet is 150K still my doc is sayung lets start 🤷🏻‍♂️

[AussieNeil Partner Administrator in reply to Kkkaaarrr]

Even if your WBC or more accurately, your Absolute Lymphocyte Count doubled in 6 months, a CLL specialist would not recommend treatment unless there were other indicators supporting doing so. See:

healthunlocked.com/cllsuppo...

[AussieNeil Partner Administrator]

Further to the many replies you have had searching for why your current specialist is recommending treatment, from what you've shared, it does seem to be out of concern for your WBC reaching a threshold of 100,000. Unfortunately, that threshold is one that oncologists generally apply for lymphomas. It's not relevant for CLL, because CLL cells are small and don't tend to cause problems in blood circulation. That is why the official recommendations as covered in this post, don't have such a threshold! healthunlocked.com/cllsuppo...

We have some members with WBC/lymphocyte counts over 500,000, who are still in watch and wait.

The guideline recommendations for starting treatment with respect to lymph node size specifies greater than 10cm (100mm) in the largest dimension, but as SofiaDeo notes, sometimes swelling nodes may cause circulatory problems, prompting the initiation of treatment earlier than the iwCLL guidelines recommend. If your current specialist can't give you a reason for starting treatment along these lines or for the reasons covered in the iwCLL guidelines, get a second opinion from a specialist who has more CLL patients. From previous Indian members, that's not always easy, as there is a lower incidence of CLL in Asian countries. You might like to post again, sharing where you are located in a locked post to protect your privacy healthunlocked.com/cllsuppo... and asking our Indian members for recommendations.

Neil

[MacCrimmon in reply to AussieNeil]

Kkkaaarrr,

I tend toward following what AussieNeil said. I was first diagnosed with CLL by an Indian doctor in mid-2015 when I had no option for medical coverage other than ObamaCare. I ignored the results for a myriad of reasons. I then gained 'real' medical coverage (BCBS) with a new job which afforded me the opportunity to get world class medical treatments, etc.

The elevated WBC came up again, and I was referred to a group of Oncologists in the NW suburbs of Chicago. This group of doctors are world class and one of them had treated my wife's breast cancer some 18 years earlier (praise God, she's still in remission !!! ).

Initially, my WBC tested about 60 by them. I forget all the other specific markers because I didn't have a clue what they meant at the time. At first I saw my Hematologist every 3-4 months, and then every 6 months to track the blood testing.

My WBC has been as high as 185 about 3 years ago but they still left me on W&W. Since then my WBC counts have went down to as low as 80 (it had mostly hovered around 120 to 145 after the 185 reading).

I'll see my lead Hematologist in Chicago again in May (twice last year), but we had moved to coastal Georgia in 2022, and I went to see a Hematologist down here and without even requesting my past history or consulting with my Illinois Hematologist he wanted to start me immediately on Brukinsa because my platelets were down to about 75 from the usual 95 to 110 over the last few years (RBC are also hovering around 4.2 during this 6-7 year period). Call me a cynic but I investigated him and 'money grab' lit up my brain waves.

My Chicagoland Hematologist, and his APRN both shook their heads. My SIL who's also an APRN told me that she knows of patients who did not get advanced treatment(s) for their CLL until their platelets were in the 35-40 range (of course, there are many, many other factors involved).

[Kkkaaarrr]

thank you for the guidance 🙏🏻

[MovingForward4423]

ask for a second opinion form a CLL specialist. Whats your other blood counts?

[Kkkaaarrr]

hemoglobin is at 12 and platelet is at 150k-160k

Today i took second opinion he said wait and watch and start alcabrutinib only when u see some symptoms

[MovingForward4423 in reply to Kkkaaarrr]

Well they are good numbers, and glad you got a second view. Once you become symptomatic there are many good treatments available.

[Rico49]

Neil and many others covered this very well. I was in watch and wait for 7 years. I saw Dr Pinilla , a recognized expert globally in CLL and Moffitt Cancer center in Tampa, Fl usa. Definitely see a CLL specialist before starting

In my case they didn't start treatment until my platelets were 70, my hemoglobin was below 10, and my bone marrow was infiltrated to 85-90% . My WBC was only 28k but I remember him telling me he had patients with wbc of 300,000 who were not in treatment. I had an enlarged spleen , liver and swollen lymph nodes all over . The PET lit up like a Christmas tree.

They never mentioned the fish results and when I asked they said don't worry about those right now. After 6 months of treatment with O+V my blood has gone back to normal. lymph nodes went away in a couple weeks. I now have 3 months left of the Venclexta. I suggest you ask about this treatment . Instead of taking pills for years this treatment can result in reaching remission in one year that can last for 2 yrs plus before another treatment may be needed. I will be tested for remission in May. Good luck.

[Kkkaaarrr in reply to Rico49]

Thanks for the reply..i had ny second opinion today and this specialist told to still wait till any symptoms show up and regarding o+v therapy my doc is sayin i am not fit for that treatment …so he suggested to go for alcabrutinib

[Stamphappy]

Excellent discussion everyone. Thank you for this post, Kkkaaarrr. I'm sure it has helped many, in this community, feel better informed and empowered to seek better care and to understand the importance of seeing (or at least talking to) a cll specialist. Best wishes.

[Kkkaaarrr in reply to Stamphappy]

Yes i got too much info regarding cll in this post..thanks you everyone

[Silvafoxe]

my oncologist started me on brukinsa and my wbc was 50k . I had enlarged lymph nodes and anemia wasn’t improving. After I was diagnosed I was on watch and wait about 8 months. I was reluctant to start the med but he convinced me. It’s been 6 months and at last report my blood work showed improvement. Think about it and if you’re doubtful you can get another opinion.

[patagozon]

I really can't offer advice, but I can tell you what my oncologist advised. He told me not to worry about the numbers, but instead hold off on treatment until my quality of life was impacted. Based on that, when my treatment started my ALC was 325K and my WBC was 365K.