Criteria to treat CLL

[Ange324]

Good morning,

My Haematologist has again recommended I start treatment for CLL. Yet, I know that I've read on here that there are set criteria for doing so.

His reasoning is that the treatment has a immune suppressive effect.

I'm on 4mg prednisolone and the aim is to taper to nothing. I'm on the steroids as I get horrendous pains that suddenly stop me walking without extreme pain.

As regards bloods, white cells 8.6, lymphocytes 4.8. So nothing much. Platelets 222.

The blood issue is my liver. When I was on 6mg prednisolone my ALT was nice at 29, reducing to the 4mg and my ALT is 321.

This is the worse result I've had since diagnosis in 2019.

However the higher dose prednisolone with normal ALT is a pattern. Drop below 6mg and the ALT shoots up.

I've no swollen nodes, normal spleen, no night sweats.

I had a liver biopsy a couple of years ago for the purposes of seeing if I had auto immune hepatitis (my mother has this). There was no evidence of that, but CLL was found in my liver, but I imagine that'd be normal if you have CLL.

I'm being referred for an ultrasound on my liver, and referral with a Gastroenterologist.

I'm thinking to get a private referral to the DR my mum sees for the auto immune hepatitis?

Does anyone have any advice about being treated for the CLL please? Thank you

[AussieNeil Partner Administrator]

This Pinned Post is what you are after

healthunlocked.com/cllsuppo...

Neil

[Sanders9]

Is your consultant a CLL specialist? If not then I would recommend you get an appointment with one before making a decision. I wish you well

[SofiaDeo]

Actually, it's not considered "the usual" for CLL to infiltrate solid tissues like the liver. CLL does infiltrate organs on occasion, but it's not noted in the literature to be a common thing.

However, one doesn't often biopsy organs that aren't malfunctioning, so who knows if CLL actually is found in large numbers!

If the CLL *is* behind the liver problem, then treating the CLL would be reasonable. But with you being on a steroid to handle the liver problem, and with the CLL drugs affecting immunity, the safest thing to do IMO is see a CLL specialist to oversee if not actively do any treatment. So your local hem-onc may do the treatment, but get an opinion of how to start it and manage side effects, from the CLL specialist. A number of us here do this, especially if it's difficult to see the specialist. For example, I once was in New Mexico having a treatment with the CLL specialist being in New Jersey. I saw the specialist before starting the treatment, who gave the protocol to the local doc and that was it. I didn't have huge problems the local hem-onc needed input on.

You didn't say what kind of Dr your Mom saw, so IDK if seeing them would be helpful.

[Ange324]

Thank you for the replies.The Dr I see is a Haematologist with CLL listed as an area of interest.I can't seem to find any specific CLL specialist, only Haematologists that have an interest in CLL?

I did see a list posted once on here I think and seems that my options for a specialist are Birmingham or London?

I live in the South West UK.

Mum used to see a Gastroenterologist for her autoimmune hepatitis.

Personally, my logic thinks to up the steroids so my liver results go back to normal. Frustrating that the CLL Dr wants me off the steroids to start treatment which is a huge step rather than what I see as a little pill that resolves the high liver blood test.

I'm clearly missing something that he knows and I don't?

[SofiaDeo in reply to Ange324]

If the CLL is the cause, treating the CLL is needed, which may be behind your hem-oncs reasoning. However, steroids suppress our immune system, as does the various CLL treatments. So there's the problem, no matter what you do you have even more impaired immunity from drugs. IDK what "numbers" your liver enzymes are that correlate with various unpleasant symptoms, so can't say how much liver impairment you can tolerate from decreasing the steroids while waiting for CLL to clear. Because being on steroids while taking CLL meds is generally contraindicated.

I do know of someone who was considering bowel surgery for tissue that had CLL infiltrated, and instead of surgery chose treating the CLL, which ultimately cleared up the bowel problems. But there were some unpleasant side effects, it's wasn't smooth sailing. They did have to suffer a certain amount of effects while the bowel area was killing CLL/repairing tissue.

Since all our CLL meds are metabolized in the liver to at least some extent, those with liver disease present additional concerns.

Have you had a bone marrow biopsy to see if the CLL is more localized to the liver right now? My thinking is this: perhaps the CLL is mainly in your liver, since some sort of inflammatory/autoimmune process is going on, and the CLL is finding that environment easy to survive in. It may not have infiltrated the marrow a lot. That would be useful information to have. Because it's also possible that you are like me, who unlike many patients, had almost complete infiltration of the bone marrow before lymphocytes started spilling into the blood, and causing symptoms. My other cell lines looked OK, but the unusually high level of marrow infiltration indicated I probably needed to look for treatment sooner. It was probable that at some point I might have a drastic drop in other cells once the CLL took over completely, and in the few months it took to start treatment, they did start to dip just as treatment commenced. Usually, CLL infiltrates marrow slowly, and one sees a slow change in other cells.

[Ange324]

Thank you for that reply.I haven't had a bone marrow biopsy but it has previously been suggested, so I will ask next time. My white cells are just outside the normal range, so perhaps another liver biopsy and bone marrow one would be worth it. Just hope they give me some knock out drops first.

Thank you again, I hadn't considered any of that before.

[AussieNeil Partner Administrator in reply to Ange324]

Hi Ange,

Sorry, I didn't have more time to reply to your post earlier - it was late evening for me.

With CLL/SLL, how the tumour burden is distributed is very heterogeneous. With the Small Lymphocytic Lymphoma presentation, (a few percent of us), there's very little CLL in our blood. Otherwise the distribution spread is much the same with CLL and SLL; nodes and spleen (a specialised node), the bone marrow, where infiltration reduces our capacity to make blood cells and sometimes other organs, particularly the liver and less often the kidneys. (CT scans during my CLL clinical trial showed both my spleen and liver shrinking).

You are aware of the set criteria for commencing treatment for your CLL. Your haematologist's recommendation for starting treatment should align with those recommendations, or they should be able to explain why your circumstances require treatment outside the guideline recommendations. Nothing you've shared meets any of the recognised triggers.

- no swollen nodes, normal spleen, no night sweats.

- lymphocytes 4.8. So nothing much. Platelets 222

I presume your haemoglobin is adequate (above 10/100 depending on your lab reference range)

As you say, "The blood issue is my liver". So it makes sense to get your liver health further evaluated, including checking whether it is swollen and why it is so stressed that your ALT was 321 - presumably from tapering off your prednisolone dose, when it was previously 29. (The normal range for ALT is less than 55 or so, depending on your lab). Your consultant's recommendation to be off prednisolone prior to starting treatment might be appropriate, in that you need a healthy liver to metabolise the treatment drugs, along with drugs that support your body through treatment, such as allopurinol, prophylactic antibiotics and antivirals, anti nausea meds and so on. Of note, prednisolone is sometimes used in the treatment of CLL - more so in the past cllsociety.org/2017/04/ster... but it does have an immune suppressing effect, so can increase your risk of infection when treatment drugs also suppress your immune system. I still don't understand why you need to start treatment, unless your haematologist thinks your liver is particularly impacted by your CLL.

With respect to arranging a second opinion, that's a very good idea considering your unusual circumstances. I would recommend you write a separate post, asking for recommendations of who to see. You mentioned Birmingham and London, so state your preferred city.

Neil

[MovingForward4423 in reply to AussieNeil]

Nova Healthcare in Leeds is very good. Prof Hillman used to work out of there. There is an excellent doctor who specialise in CLL there I can connect you with. It would be a private consultation but probably worth money. You can ask for a referral to him on the NHS but it may take time.

[mdsp7]

When I was first diagnosed I was told that sometimes a CLL tumor like growth could be found in an organ, I was given the example of the intestine. I was asked to have a colonoscopy, if I remember correctly, to rule out that condition. I was told that if the intestine was the home for the CLL, that removing the tumor would be curative. Perhaps the same situation can occur in the liver? I don't know but since your labs don't indicate a need for treatment in terms of your blood cell counts, perhaps your hemotologist is considering something like this?

[Swissnology]

Please don't be afraid of treatment. If your doctor recommends it you probably need it. I was going to MD Anderson for 8 years of watching wait never had treatment. They do not take healthcare.gov so I went to another hospital another doctor started treatment 3 weeks ago and feel clear for the first time in years so don't be afraid

[LeoPa]

I am somewhat confused. Your bio is not filled up. But some of your previous posts mentioned spleen enlargement and white blood cells in the 30 plus range. And you were not yet treated? How come your bloods are almost in the normal range now? Perhaps it would be helpful if you summarized your journey until now in your bio.

[Ange324]

Thank you for the replies.My haemoglobin is 142 (120-150 range).

In November 23 my wbc was 21.8, lymphocytes 10.7, Liver ALT 29

Last week, Feb 23 my wbc was 8.6, lymphocytes 4.8, liver ALT 321

I've had several ultrasounds on abdomen, spleen is sometimes enlarged and sometimes normal. I'm so sorry if my history is a mess, I don't know what I can say except that higher dose steroid reduces my ALT's and spleen size but increases my wbc?

Lower doses increases ALT's and decreases the wbc.

I have ultrasound appointment next week and so even though the Dr feels my spleen and says it feels normal, I'll know if my spleen has increased again. I can only assume its the steroids that impact everything.

Thank you for the Leeds Consultant information, I'm in the South West.