GailCat3

[GailCat3]

I’ve had CLL B cell for 16 years. I had a great Oncologist but she moved 11/2 years ago so she used to do bone marrow biopsies to check my CLL. My new oncologist does pet scans but as far as I know that just checks for the Lymphoma part off CLl. If I have no tumors she says my cancer isn’t active. But it just occurred to me that she’s not doing bone marrow biopsies of taking into account my white blood cell count which is 100,000. Doesn’t that say the Leukemia part off my CLL is active? Plus I have awful day sweats, large lymph nodes and an enlarged spleen. Should I change Oncologists?

[AussieNeil Partner Administrator]

Hi Gail,

Looking at your past posts, I see that you were on ibrutinib 5 years ago, so what's been happening with your CLL since? For your WBC to get to 100,000, I presume you are no longer taking ibrutinib?

The triugers for starting a second line of treatment are the same as for the first time and are covered in this pinned post healthunlocked.com/cllsuppo...

I'm concerned to note that neither bone marrow biopsies or PET scans are part of standard care for CLL. CT scans provide better information than PET scans and should be infrequent used. Bone marrow biopsies are reserved for sometimes checking whether uMRD has been reached (though a blood test generally suffices unless you are in a clinical trial).

Given you live in the USA, you are able to arrange for a free video appointment with a CLL specialist cllsociety.org/programs-and...

The CLL Society can also help you find a specialist more experienced at managing CLL cllsociety.org/newly-diagno...

Neil

PS It would help members help you better, if you could update your bio with a bit more of your CLL treatment history. Here's a shortcut link healthunlocked.com/profile/...

[GailCat3 in reply to AussieNeil]

Thank you for your great info on CLL. I didn’t know my old texts were still available! How did you find them? Yes, I was on Imbruvica but stopped when I got a blind eye. They weren’t sure if the Imbruvica or the CLL had caused the blindness. My CLL was stable without the Imbruvica I was told I was stable. For 5 years I’ve had been stable. Also found out my blind eye was caused from another medication I took for interstitial cystitis. ( which I still have) Terrible bladder pain I live with every day but the medical doctors for this disease have come up with other ways to dull the pain but it never goes away completely. But yeah getting back to my CLL. Thank you for the info for me to be able to talk to a CLL doctor online. I will update my bio. Thank you Neil. What country are you in?

Best wishes for you, Gail

[Skyshark in reply to GailCat3]

Your Bio and old posts are on your Profile page. You can see your profile by clicking on the "Profile" icon on the toolbar at the top of the page, to the right of "HealthUnlocked".

All of the icons on the top toolbar are active and can used, even though the grey appearance may suggest they aren't.

Clicking on anyone's name or icon on an answer or question will take you to their profile.

[Spark_Plug]

If this one is missing B symptom signs I'd say move on.

[GailCat3 in reply to Spark_Plug]

Thank you Spark Plug!

[Skyshark]

How many bone marrow biopsies have you had and when in relation to treatments?

Due to invasive nature of a biopsy they are not a regular part of monitoring unless on a clinical trial. I've had two, one prior to treatment with V+O and one a month after end of treatment to confirm complete response. I don't expect to have another until I am approaching my next treatment. The first showed 75% infiltration of my BM by CLL B-cells. Some people have 90-100% infiltration before treatment at this point there are other symptoms as it prevents the production of other blood cells.

As    AussieNeil says CT scans are more usual. I've had four, one prior to treatment, second to restage TLS risk at week 3, third at middle of treatment to confirm lymph nodes and spleen had returned to normal size and I was responding to treatment. Fourth at end of treatment to check the response was sustained. The results from the third one in the middle of treatment were described as unconfirmed complete response.

CLL doesn't produce tumours that are detected as "active" by PET scans. I had one PET scan before treatment when Richter's Transformation was suspected due to massive extent of lymph nodes on first CT scan. My peak SUV was 4, the expected SUV for RT is over 9. They also did a lymph node biopsy, the Hans test was positive but they couldn't find any DLBCL in the material from the lymph node.

PET scan SUV is more to highlight where to look for cancer and check response after treatment for cancers that have higher SUV rather than Dx.

radiologyinplainenglish.com...

Enlarged lymph nodes, spleen and bone marrow are where the CLL B-cells actively proliferate. They are dormant in the blood. They need to be cosied up with stromal cells in LN,S&BM to be active.

I can't say my testing was perfect. The lymph node biopsy for suspected RT should have been done on the node with highest SUV found by the PET scan. Instead they did the biopsy before the PET scan and just sampled the largest lymph node.

[GailCat3 in reply to Skyshark]

Sky shark did you get my text cuz I forgot to press reply. Oh and I’ve had 2 bone biopsies. Lots of CT scans and 2 pet scans

[Skyshark in reply to GailCat3]

This was the first reply I've seen to mine.

Two BMB if bracketing start and end of prior treatment or one for work-up to next treatment is not unreasonable.

"Lots" of CT scans and 2 PET scans would be concern if not on treatment and only one CT scan would be expected during work-up to next treatment. After a PET scan you are a radiation emitter for about 24 hours.

[Smakwater]

GaiCat3,

Something is missing? the bone marrow biopsy practice seems out of standard protocol.

I am in favor of the first three post responses and that you should see a specialist for a re-evaluation.

JM

[GailCat3 in reply to Smakwater]

Thank you Smakwater. I’m going to take the advice.

[SofiaDeo]

You need to be seeing a hematologist-oncologist (hem-onc), at a minimum, if no CLL specialist hem-onc is available to you. Regular oncologists are NOT experts in this blood cancer, which shouldn't be treated like other lymphomas. Numerous bone marrow biopsies and PET scans are NOT routinely used for monitoring our rare blood cancer.

[GailCat3 in reply to SofiaDeo]

Thank you SofiaDeo, I am going to a hematologist Oncologist and the 1st Dr was one also. Thank you for your concern.

[spi3]

My hubby's blood is CLL free but he has a little CLL in his bone marrow- so His CLL expert Dr is keeping him on O&V longer to get a deeper remission- is your Oncologist a CLL Expert Dr too?

[GailCat3 in reply to spi3]

She’s a hematologist oncologist but thanks, I’ll check if she specializes in CLL. Thanks for the info

[spi3 in reply to GailCat3]

She's probably wonderful and I hope that she also is up on all of the latest CLL studies and treatments..however when my hubby 1st got sick with CLL our local hospital expert CLL Dr sent us to New England CLL expert at Daba Farber and he saved my hubby's life with an alternative treatment-- to this day and miracles after miracles- I think this 1st Dr was our Angel. ..

[skipro]

Gail

With your WBC if 100,000, your sweats, lymph nodes and enlarged spleen, treatment would be warranted.

Most community providers do not do marrow biopsies outside of clinical trials.

I suggest you find a CLL specialist.

Good luck and God bless

Skipro

[GailCat3 in reply to skipro]

skipro thank you, I’m gonna do that

[skipro in reply to skipro]

you're most welcome

and before starting treatment they should do the full genetic and marker studies to ensure you get the best treatment

eg

IGHV

TP53

and avoid FCR and BR