MRD Negative with significantly enlarged lymph nodes

[profrich]

ALthough venetoclax made me MRD negative, I still have significantly enlarged lymph nodes. Has anyone taken prednisone for this?

[Hidden]

how is that possible?

[Jemorgen]

That certainly doesn’t fit within my meager understanding. Were you given an explanation?

[profrich in reply to Jemorgen]

My doctor suggested it. Prednisone is the P in CHOP. Prednisone is an old treatment for CLL. I found an old article (1961) indicating it clears lymph nodes and the spleen and kills some CLL, but has no affect on the marrow. So, it is a short-term solution. However, my marrow is okay. So, it might do what I need. I was wondering if anyone else had success with it. Here is a link to the article:

ashpublications.org/blood/a...

[Jemorgen in reply to profrich]

Sorry I wasn’t clear. I was trying to understand how you could be MRD with enlarged nodes. That’s the bit that doesn’t make sense to my meager understanding. The prednisone makes sense

[AussieNeil Partner Administrator in reply to Jemorgen]

You are confusing Minimal Residual Disease (MRD), the measurement of cancer cells in the peripheral blood or bone marrow with another measure, the degree of response to treatment; Complete Response (CR), Complete Response with incomplete marrow recovery (CRi) and Partial Response.

Section 5.9 of the iWCLL Guidelines explains the former and Sections 5.1 and Table 4 the latter. It is indeed possible to be MRD negative (now termed U-MRD), yet only have a partial response, due to CLL remaining in the nodes. Don't forget that with the SLL variant of CLL/SLL, it is possible to have very swollen nodes and yet not have CLL detected in the blood stream. In such cases the diagnosis is done on a flow cytometry of a node biopsy, because a peripheral blood test may fail to detect the CLL/SLL.

See ashpublications.org/blood/a...

Neil

[profrich in reply to AussieNeil]

I know that. I am such a person. I am trying to figure out how to handle it.

[Jemorgen in reply to AussieNeil]

Thanks for clarifying Neil. I had not full appreciated the definition of MRD.

[Antaine in reply to profrich]

I'm about to start treatment and have grossly enlarged lymph glands throughout my body, and a swollen spleen.

The only one that causes any inconvenience is the spleen - I have to be mindful of bending forward to take into the account the swollen spleen.

My other glands only occasionally cause pain, which is irksome rather than insufferable.

My lymphoma nurse reassures me that treatment will bring some reduction in the swollen glands, which will be welcome Otherwise I don't tend to think of them.

[cllady01 Former Volunteer]

MRD-negative does not mean undectable, so you still have cancer cells. It may be that the lowered dosage will not get you any further in the minimal residual detection tests.

If you Dr. is interested in changing to or adding Acalabrutinib, has he/she said why? It would be a good idea to ask about both the nodes and the suggestion to add or change you treatment. It is impossible to know without the knowledge the Dr. has and can relate to you.

Hoping for a good discussion between you and your Dr. and a sorting so you can rest easy knowing you are in good hands with whichever is the decision you two come to.

Please let us know how things go.

Best wishes for a good conversation with your Dr.

[avzuclav in reply to cllady01]

MRD-negative means undetectable.

[cllady01 Former Volunteer in reply to avzuclav]

Yes, MRD negative means undetectable, but, the tests are not as sensitive as the disease is slippery---here is a video (transcript is on the page below the video that explains the situation:

patientpower.info/video/wha...

" A couple things about it. So, it’s Minimal Residual Disease and you wanna be MRD negative, meaning there’s no detectible leukemia, but that doesn’t actually mean that there’s no leukemia left in the body, it just means we can’t…

Jeff Folloder:

…that’s a mean fact.

Dr. Rogers:

Yes, exactly. It just means that when we looked with whatever test we used, we couldn’t find it in the blood; or couldn’t find it in the bone marrow; or couldn’t find it in the blood, or the bone marrow. But that doesn’t mean that it’s not in some of the tissues of the body. You know CLL is a blood cancer and can go anywhere the blood goes, which is everywhere. It also means that there could be leukemia still in the blood but our tests just aren’t sensitive enough to detect it. I have people that come back that are in clinical trials and ask if they’re cured, is the CLL gone forever? Because they’re MRD-negative, and the answer to that is no, actually we don’t think so it just means that it’s below the detection limit of our testing. Does that make sense?"

[avzuclav in reply to cllady01]

I agree 100%. 👍🏼

[Hidden]

it could be just a matter of time until those lymph nodes go away. if your marrow is not producing bad stuff-the enlarged lymph nodes should gradually empty

[GMa27]

Definitely would get clarification. Prednisone is not a remedy for nodes. Get a second opinion. 💕

[profrich in reply to GMa27]

Why do you say it is not a remedy for nodes? This old article indicates it might. Prednisone is the P in CHOP.

ashpublications.org/blood/a...

[AussieNeil Partner Administrator in reply to profrich]

Prednisolone is a rather old maintenance treatment for CLL, which is rarely used nowadays, showing how much treatments have improved.

"Your doctor might suggest high dose steroid treatment if your leukaemia has stopped responding to chemotherapy (refractory CLL). Doctors often refer to this high dose steroid treatment as HDMP (high dose methylprednisolone).

Doctors often suggest this treatment if you have uncomfortable bulky lymph nodes. Or if tests on your leukaemia cells show they have particular gene mutations.

Most people in these situations find that steroid treatment can control the CLL for some months, more than a year in some people. When your leukaemia starts to develop again, you might get another response if you have steroids again."

cancerresearchuk.org/about-...

Note that article was last reviewed in December 2017

[GMa27 in reply to profrich]

It is part of a whole package (combo) each drug has a job by itself or in combination. If all we had to do was take Prednisone for nodes, that would be amazing. Unfortunately it doesn't work that way. 💕

[profrich in reply to GMa27]

Actually, it does flush out the nodes. However, the remission with prednisone alone is brief. My hope though is that it flushes out the nodes so venetoclax can kill the tumors. See this article:

ashpublications.org/blood/a...

[GMa27 in reply to profrich]

Sorry...that article made no sense to me. Says nothing about nodes. Mentions more reasons not to use it. It was not suggested by my CLL experts for my nodes. Probably depends on a lot of variables...markers, past treatments, remission or not etc. 💕

[profrich in reply to GMa27]

See Table 2 for information about nodes. My physician is trying to flush out the nodes so other meds can kill them. I am not a standard case in that I am MRD U, but have a pretty big problem with nodes. I posted this to see if there was anyone else in this situation.

[GMa27 in reply to profrich]

Good luck! 💕

[profrich in reply to GMa27]

Thanks

[t2aa in reply to profrich]

I took a short course of Prednisone last May when I had a respiratory infection and it did make my nodes go down substantially. But as soon as I stopped taking it they came back. If you are still on Venetoclax, maybe flushing out the nodes will send the CLL cells to a place the meds can reach. I am on Venetoclax as well, however, I started with a month of Rituximab which decreased the nodes and allowed the Venetoclax to attack the cancer cells. Has your doc mentioned Rituximab or O?

[42828]

Hi there, I took prednisone and it worked beautifully. Before this I looked like a baboon with huge, enlarged lymph nodes in my neck. I was in hospital( North Tees in England). From the first day, I'd lay down and try and sleep but never really slept much at all and the lymph nodes hadn't moved a mm. On the 4th night I went to bed not expecting to sleep much again however, the strangest thing happened and I believe it was a miracle. The next thing I'm aware of is waking up around 8:00am having slept like a lamb and, my God, the huge lymph nodes had completely vanished OVERNIGHT. To top it all, I forgot to mention, my nodes were so big I couldn't speak at all. Things were pretty crazy. Anyway, I felt great inside. I felt more healthy than I'd actually felt in some years. It was then I knew I was better. It was a revelation.

I Jumped out of bed and showed and told all the nurses what had happened. They were so happy and we all celebrated. Doctors quickly came too and were chuffed I'd had such a good response.

I tell you what, it was a very tearful time for everyone including the doctors.

Concluding, I'd say, try not to worry, you'll be well looked after so just ride the wave.

[profrich in reply to 42828]

Thank you for the only real answer to my question. How much did you take per day?

[profrich in reply to profrich]

Also, what do you take for CLL?

[42828 in reply to profrich]

Now, having been put on ibrutinib after relapsing five years on from my first intervention of CLL with prednisone, after which I had a bone marrow transplant in 2016/ that didn't work. So next was the new wonder drug Venetoclax. I was on that for 2.5 years however, we discovered early this year the Venetoclax wasn't working any more.

Now I've been placed back on the Ibrutinib and its working great at holding back the CLL.

I hope all that makes sense to you

I must add though, options for me are starting to be few and far between so, although it can be difficult sometimes, I keep on laughing and smiling.

[profrich in reply to 42828]

A final option is car-t but you'd have to get in a trial or go to Quebec.

[42828 in reply to profrich]

Yeah, I've been asked if I would be willing to go on a trial and to travel. I've said yes to both ha.

[42828 in reply to profrich]

If I remember right, your consultant Doctor will prescribed an amount in accordance with your body mass. So every patient differs.

[profrich in reply to 42828]

Yes, I was prescribed 80 mg per day for 5 days with a body weight of 73 kg. Just wondering if you had something comparable. How long ago did you take it?

[profrich in reply to 42828]

Also, how long ago did you take prednisone?

[42828 in reply to profrich]

I think it was spread out over six months.

[42828 in reply to 42828]

One dose/month

[profrich in reply to 42828]

When did the event in the hospital occur after starting? I was under the impression you started prednisone daily in the hospital and it worked on the 4th day.

[42828 in reply to profrich]

Yeah, take it for for that length once a month for 6months

[profrich in reply to 42828]

so it took 6 months to be effective?

[42828 in reply to profrich]

Yeah, it complimented the chemotherapy

[profrich in reply to 42828]

What chemo did you have?

[42828 in reply to profrich]

Treated with 6xFCR (floudarabin, Retuximab and cyclophosphamide). After that I had a 4 month remission which was quick. It was found to have come back with a P53 deletion so I went on Ibrutinib in 2015. From there I had a sibling allogenic bone marrow transplant in September 2016.

In August 2017 I had another relapse and so commenced Venetoclax.

Now I'm back on Ibrutinib and keeping my fingers crossed ha .

[profrich in reply to 42828]

you might want to try acalabrutinib. Best of luck to both of us. Send me a private note to update me on your situation.

[Cassie2019]

I took 5 day vial of prednisone in March of this year, and it did help with enlarged lymph nodes in lower belly. But, a couple months later started having swelling in my legs from my lymphatic system not working properly. I wish there was an easier answer to all this as I am so frustrated. I was having back trouble and I have gotten prednisone shots in back and it probably was keeping my lymph nodes working better. I am willing to do anything right now to feel better.

[profrich in reply to Cassie2019]

Sorry to hear of your plight. Do you recall how much prednisone you had each of the 5 days?

Thanks

[bayside64]

I was given Prednisone while in the hospital being treated for pneumonia. My very enlarged spleen and very enlarged lymph nodes improved dramatically. However they did return later.

[mnmnewtons]

Venetoclax brought me to uMRD in less than a year. 4 additional monthly Rituxan infusions with the Venetoclax took me out about a year testing uMRD. But my lymph nodes still felt "bulky". My oncologist stopped V + R and started Acalabrutinib (I am allergic to Ibrutinib). In about 6 months a CT scan showed normal lymph nodes, spleen and liver. Actually, in about 2 months I could feel the lymph nodes in my neck significantly decreasing. I am still on Acalabrutinib and still uMRD.

[profrich in reply to mnmnewtons]

Did your ALC (lymphocyte count) ever increase. I am now doing the same thing, but noticed no increase in ALC.

Thanks,

Rich

[mnmnewtons in reply to profrich]

Sorry so late to reply. ALC has been about 1.1 for a long time. Close to low normal. It got to 1.5 (thou/uL) once when on Venetoclax.

[HikerBiker in reply to mnmnewtons]

Hi,

I just read your post from 7 months ago. I am considering starting V +R, the alternative being acalabruntinib as a monotherapy. How was your time on V + R? Obviously it did not achieve what you had hoped, but did you have any difficulties taking the V? In hindsight, do you think the Acalabrutinib by itself would have been a better way to go, or since you achieved mMRD, are you glad you took the V?

Thanks for your feedback,

Rick

[Canuck901 in reply to HikerBiker]

Rick. That would be a good question for your oncologist if you can start the V + R and then add acalabrutnib down the road once your Rituximab infusions are done.

[mnmnewtons]

Acalabrutinib was not available when I started Venetoclax, which worked well. The later addition of Rituxan improved that and I felt good. But, I still felt my lymph nodes were bulky. We moved to Acalabrutinib and voila, less than 1 in 40,000, uMRD. If you could get a combo, that would be best, I think, but it would take a clinical trial. If I were you, I would start with Acalabrutinib and maybe if you can add some Obinutuzumab. Save Venetoclax for later.

[Canuck901 in reply to mnmnewtons]

Yeah apparently Acalabrutnib does a Fantastic job at cleaning the blood , nodes , etc , but not the marrow.

So when you combine it with Venetoclax/Rituximab or obinituzimab the synergies of the combinations seem to miraculously give CLL a knockout Punch