Possible Richter’s Transformation?

[hsouter]

My husband had tonsilitis In late December early January and seems to have recover from that. Then, unfortunately, he was in contact with someone positive for Covid and contracted It.

He had a difficult time of it he wasn’t hospitalized but came close. During his quarantine, when he was almost finished it, he developed tonsilitis again. He wasn’t able to go back to work because of this. Obvisously, the tonsils are in the respiratory passages, that’s the reason why.

However he’s had two different, actually three different types of antibiotics, and still his tonsils are swollen—not really inflamed but swollen. We live in a rural area so access to testing and face to face visits with docs is difficult. Right now most of the contact with his personal care physician is through telephone. Still, he does go into see a Cancer care adjunct physician at the local hospital every couple of months. And, will be calling the rural cancer centre. However, I am very concerned that this might be a case of Richters Transformation.

In addition to his swollen tonsils, he is having night sweats now. It could possibly be a been a reaction to the medication, but it is a concern.

His counts for most of the markers that would concern us or our decent (late Jan. 2021) His CLL specialist seem good with them. He is not on any treatment nor has he been treated before.

What are your thoughts? What should be look for? What questions should we ask?

Thanks.

Heather

[lankisterguy Administrator]

Hi hsouter,

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We understand your concern about your husband's tonsil infection, but I am not seeing anything you mention that would raise a concern for Richters Transformation.

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Since any transformation would need an expert to diagnose and urgent / immediate treatment, you should contact his CLL specialist immediately and arrange for that doctor to diagnose his issues, possibly arranging for prophylactic outpatient treatment for the COVID-19 infection.

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See

healthunlocked.com/cllsuppo...

SNIP I asked Dr. Furman what could be done if I were to be infected with COVID-19 and what would he and Weill Cornell do to treat me.

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His response was Prophylactic treatment: It only takes two days and is indicated for patients with symptoms that do not require hospitalization. We are currently using bamlanivimab for outpatients and remdesivir, dexamethasone, and convalescent plasma for inpatients.

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The CLL Society has provided this letter for CLL patients to give to ER or local physiscians

cllsociety.org/wp-content/u...

The salient points are CLL Society recognizes the present COVID-19 pandemic can strain limited healthcare resources and may demand thoughtful and ethical triage of the

healthcare team’s time and resources.

Data show that chronic lymphocytic leukemia (CLL) patients who have

symptomatic SARS-CoV-2 infections carry a markedly increased risk of mortality

and morbidity.1,2 The risk of hospitalization for CLL patients who have

symptomatic infection is 90%, and more than 1 in 3 who are hospitalized do not

survive. Therefore, please consider their immunocompromised status and

prioritize their assessment and management when they are asking for your help

with a potential or established COVID-19 infection or access to an mRNA SARSCoV-2 vaccine.

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Len

[hsouter in reply to lankisterguy]

Thank you!

[SofiaDeo Administrator]

Recurring infection and increased night sweats can indicate a need to treat, not necessarily Richter's. The Covid doesn't help, any post-viral syndrome can cause some symptoms in addition to the CLL. But the night sweats is a classic symptom of cancer growth, so please call the doc. He may need blood tests monthly instead of every few months, to check/clear any infection in addition to CLL monitoring. If you are in the US (no profile so unsure) with the American Cancer Society or the Leukemia & Lymphoma Society, there sometimes are grants for travel expenses like gas, hotels & meals since you have to travel for testing.

[hsouter in reply to SofiaDeo]

Yes. We are on it! Thanks! 🙂

[Tommays56]

Hi Hs

Sorry to see you in such distress

I am still recovering from a bad bout with Covid and just came off 14 days of oxygen support due to Covid pneumonia/hypoxia

I haven’t had a fever in 18 days even in Peak pneumonia BUT my night sweats have returned with absolutely no fevers and while starting to diminish a bit it’s strange and upsetting

[hsouter in reply to Tommays56]

Yes.... It is concerning, right? We’ll see what the docs say about the Covid virus having a part if any in all this....

[cartwheels]

Sounds to me he is possibly nearing treatment for cll , I know my tonsils gave me hell before I had treatment and terrible sleep through loud snoring I even got a assessment from ENTand as he had night sweats as well I won't say this is the case and I would not worry about it being Richter's but of course check it out .

The good news is when he starts treatment within a few months all will be normal god willing .

[Jm954 Administrator]

Enlarged tonsils is not unusual in CLL even if all the other nodes are not causing problems. The concern is that they can get so big that they can eventually occlude the airway so he needs a face to face assessment of the tonsils either by your CLL doctor or even an ENT doctor.

The night sweats are a B symptom that may indicate treatment might be needed sooner rather than later and please make sure you mention these to the doctor.

Let us know how he gets on

Jackie

[hsouter in reply to Jm954]

Thanks. Yes. He is going to see the Cancer doc tomorrow. And has been referred to an ENT as well. His blood counts were really good as of the end of January, so it is all strange. They were actually done in the middle of his bout with Covid. Just had new ones done yesterday... So, a B symptom (sweats) are a surprise coming on so quickly. Anyhow, we have to wait and see what the physical (not phone!) exam and other tests reveal.

[SofiaDeo Administrator in reply to hsouter]

Blood counts as in ALC generally aren't the driver for treatment. Symptoms like night sweats and fatigue, and bloodwork affecting platelets and RBC's are more often involved in treatment decisions. ALC is used in determining the "doubling time", or how long it takes for the ALC to double in value. A doubling time of less than 6 months indicates an active, possibly aggressive, disease regardless of the actual number.

[hsouter in reply to SofiaDeo]

Yes. And, he had been creaping towards doubling time but had a pronounced drop in his count (from 59k to 29k!) in January.... Very confusing! Still we have an in-person appointment with the cancer doc tomorrow, a battery of tests done yesterday and a referral to an ENT as well. Should know some more tomorrow.... Likely either tonsils need to come out or it is treatment time....

[SofiaDeo Administrator in reply to hsouter]

Make sure you are looking at Absolute Lymphocyte Count and not White Blood Cell Count. Monocytes can and do rise in viral infections, and will drop back to normal once acute infection passes. So a WBC can rise & drop in response to viral infection like Covid. And CLL lymphocytes do die, they just don't die like normal lymphocytes. I personally had a confusing significant decrease in lymphocytes last year, likely due to a die-off of older CLL cells. It does happen, but not often (never saw it in my bloodwork before, this past decade since my diagnosis).

[mrsjsmith]

Good morning,

I do think your husband needs to get an ENT consultation. My tonsils became very enlarged, so much so they were eventually removed. As Jackie said it was affecting my breathing. I rather innocently thought they would go back to their normal size.

If they do need removing message me and I will give some advice. I got several scare stories when I posted here, but luckily my experience was far better than I expected.

Colette

[hsouter in reply to mrsjsmith]

Thank you so much, Colette! Referred to an ENT and will have a physical exam by a cancer doc tomorrow. A new batch of tests done yesterday, too. I’ll keep you informed!

[mrsjsmith in reply to hsouter]

Thanks,Wishing you both well for tomorrow and with ENT

Colette x