Relapse Worries? Help, Please!

[DRM18]

Hi everyone,

I started treatment (V + O) in January 2020; a year later, I was done, and had a flow blood result of "no detectable abnormalities" or whatever. Yay!

Today, however, I got the results of another flow blood test, 20 months after treatment ended, and it says "the immunophenotype of these monoclonal B-cells is consistent [with?] minimal involvement by the patient's previously established ICD10 code/diagnosis of B-CLL/SLL."

The specifics are 3% involvement, consisting of "CD5, CD19, CD20 (dim), CD45, HLA-DR, Kappa (dim); negative for CD10."

Don't know what any of that means, really, but I know it isn't good. Help!

My regular labs are all in good shape, albeit WBC is a bit low at 4.2, and ALC is a bit low at .9. The rest are normal.

My doctor is going to order another flow test in 3 months to look for changes, but otherwise he isn't too worried (or so he said.

My question to you is, what might be next for me? Though I try to be positive, it's a challenge, as I have a tendency to obsessively worry.

So, if you reply, please keep that in mind: try your best not to tip me into full freak-out mode; I need to be pulled back, not pushed over.

Thanks so much for whatever wisdom you might offer, kind CLL geeks!

--Dave!

[DRM18]

No replies? ... Is it because there's--there's no possible reason/way to reassure me?

Help!

--Dave!

[Loveroflife in reply to DRM18]

Hi Dave,

I wish I was a medical professional and could tell you there is really nothing to worry about but I can’t.

What I do know is that there are people who never got to a negative state after V+O and are living just fine. Also you are feeling fine so that is all that really matters at the end of the day because we all know they won’t start treating you again unless necessary.

Your doctor is telling you not to worry because there is no indication that you need treatment.

You and I have almost the same experience except I am 53, and finished my V +O 4 months after you. I don’t know if I ended up completely negative because that test wasn’t available where I live and COVID did not allow me to travel to the states. So I just live not knowing.

But what I do know for sure is that when I was diagnosed many would have felt sorry for me including my brother who died of COVID, my mother who died after she fell and hit her head, and so many more that were “healthy” compared to you and I and yet here we are.

Keep us posted please.

But don’t worry unless someone says worry. Remember just because you have CLL doesn’t mean you are going to need treatment anytime soon.

[DRM18 in reply to Loveroflife]

Thanks, Loveroflife, for those kind, logical, reasonable words.

And yes, I feel quite well, and again, my routine labs are better than they've been in five years.

I guess I need to not forget that.

--Dave!

[Big_Dee in reply to DRM18]

Hello DRM18

I would be happy to replay, my first reaction is great wish I had those numbers. I just made my first attempt at taking obinutuzumab and I crashed had to stop after 5 minutes, so I would say yes you are in great shape. Blessings.

[DRM18 in reply to Big_Dee]

Bless you, Big Dee, restorer of my faith in humanity …

—Dave!

[DRM18 in reply to Big_Dee]

Oh wait, Big Dee—today was your first O infusion! & it was stopped? … But that’s common, no? Will they try again? I’ve heard all around that the first O infusion is the riskiest by far, but then after it’s frequently smooth(er) sailing.

May that be the case for you!

—Dave!

[AussieNeil Partner Administrator in reply to DRM18]

Hi Dave,

I suspect both the technical nature of your post and the fact that you have posted unlocked explains the lack of replies, plus you have posted in the quieter part of the HU CLL Support 'day'.

Basically, CLL is considered incurable, because it (nearly) always returns after treatment*. So then we face again the 'joy' of entering watch and wait. I'm sure that you appreciate all this and are wondering how long this watch and wait will last. This is what your specialist is trying to determine, or more accurately, get a feel for, by repeating your flow cytometry test in 3 months time.

I'm not exactly sure of what's meant by the 3% involvement. Is that 3% of your WBC or ALC? That's a good question for your specialist next appointment, but meanwhile it's a very low number and your ALC is also low. I've very similar results to you - finishing a very similar treatment of AVO - with just the addition of acalabrutinib to your treatment. B cells happen to be 3% of my lymphocytes, but I don't know how many of them are CLL cells.

I'm not worried. I'm expecting a similar period of watch and wait as last time. You mentioned suspecting you had CLL several years before you were diagnosed and I expect that's true. Let your specialist do the worrying - he's being thorough. Meanwhile put a note in your diary for say four years hence, to see what may be shaping up to be your next, possibly curative treatment, if it looks like you'll need treatment again.

* About 55% of IGHV mutated folk treated with FCR experience indefinite remissions, with the early trial participants now passing the 20 year mark. We don't yet know how long remissions can last on time limited combination treatment protocols containing venetoclax. You and I are among the early participants finding out!

Neil

[DRM18 in reply to AussieNeil]

Thanks, Mr. Neil!

Your assurances, grounded in steady logic, are much appreciated.

... Here's a little wrinkle, though: I saw a specialist once, who recommended V+O, but not since. My local hematologist is my go-to oncologist (I live in the middle of nowhere), and I suspect he has little experience with CLL. (I was his first V+O experience.)

Consequently, yesterday, looking at my results, while he said not to worry, he also said to start considering a stem-cell transplant(!). Maybe I'm wrong here, but I'm hoping that, were I to need treatment again, I'd maybe repeat V+O or try Acalabrutinib or something, that a transplant is kind of a hail-Mary pass, a last resort, after all other options have failed?

... Another question: is re-treatment determined more by flow-test findings, or more by regular lab results? I ask because I'm all freaked out by the re-appearance of CLL in my flow test, but, had that test not occurred, I'd have been quite reassured by my regular lab results (WBC, ANC, ALC, platelets, etc.), which are largely normal.

... Oh! One more tiny thing: my doctor said yesterday that I was still in "remission," which I assumed was a slip of the tongue, as the CLL has re-appeared. Am I mistaken, or was he?

I bow down to you, sir!

--Dave!

[AussieNeil Partner Administrator in reply to DRM18]

Please relax! You are still in remission - your lymphocyte count is still below the lower reference limit! V+O is a standard treatment, but we are still learning how long remissions last.

Don't overthink things. Retreatment is determined the same as your first treatment, per healthunlocked.com/cllsuppo...

As I said before your remission will be around the length of your first watch and wait, plus some of the estimated time which you fast thought your CLL began.

It's after midnight here, but if you can find your FISH test results, your diagnostic flow test results and any other prognostic test results you might have, that would really help. Also, putting this and a summary of your CLL history into your bio would really help members give you feedback from our community, rather than the scattered information you are getting from your medical team.

Neil

[DRM18 in reply to AussieNeil]

Thanks so much, Neil!

Now get some sleep; I know I'll sleep better because of helpful posts such as yours.

--Dave!

[AussieNeil Partner Administrator in reply to DRM18]

Here's how to update your bio: healthunlocked.com/profile/...

[DRM18 in reply to AussieNeil]

Thanks again. I've updated my bio slightly with pre-treatment information from three years ago.

--Dave!

[Gardengirl44 in reply to AussieNeil]

Great post! I am almost done as of next week and then it's simply pills of the V. Glad to join the team and hope early participants ROCK IT!

[DRM18 in reply to Gardengirl44]

Rock and roll, baby!

Wild and free ...

--Dave!

[SofiaDeo Administrator]

Posts done in the middle of a workday, shortly after a major holiday, may not get answered as quickly as evening or weekend ones?

I am not sure if there is an exact protocol to follow when one relapses. There's talk of people repeating the same therapy, as well as talk of doing something different. I am hoping to stop my Venclexta after 2 years, and if I get 2 years off the med that would make me happy. I am hoping to just repeat it, since I am not having a lot of side effects from the V. So if I have to cycle "treat 2 years, off 2 years, repeat", that would make me happy.

Perhaps soon there will be a test available to look for common venetoclax resistance mutations, like there is for ibrutinib.

[DRM18 in reply to SofiaDeo]

Thanks, SofiaDeo!

Yes, that would be ideal for me, too, as I had essentially zero side effects from Venetoclax. (I was on it only one year, though.)

That's a major reason why, as I replied to AussieNeil, above, I was confused when my doctor--no expert!, just a regular hematologist--mentioned a stem-cell transplant as something to be considered.

I do believe I'd rather just try to repeat V!

Hoping I'm not too naive,

--Dave!

[Teemed]

I was dx 4 years ago w thyroid cancer and then CLL. I am on Calquence now. I have learned that an emotional ride is part of the journey and I get surprises. I see that we all do have worries or sadness from time to time

It helps me to see that it is unique to me and yet common to so many. I also remind myself that though I am relatively young, everything and everyone gets to go through an aging or decomposition process of the physical body. So I’m not special in this regard.

I try to look for the wisdom and gifts in this CLL and cancer journey in addition to the medical knowledge. I find it helps w the worries

So many people here in this community have adapted such helpful outlooks and reading them has helped me. As difficult as it is we do have hope and opportunities, it’s the cards we are dealt so I look for the Aces as well as the 2’s.

Best to you , we are all in this game together.

[DRM18 in reply to Teemed]

Teemed? You're a usefully philosophic sort, it seems.

Thank you, very much, for the thoughtful, encouraging post.

My best to you too!

--DRM

[ksteinberglewis]

I thought I got the worry wort award of the year. What pulls me back from the edge is remembering that worry makes everything worse. I don’t know what all those things mean either but since you have recently had all these tests done, if you are not seeing a specialist, it might ease your mind to get a second opinion. The specialist that was recommended to me was Dr Richard Furman at Weill Cornell in NY but you want a CLL specialist who will coordinate with your doctor. There are new meds coming out all the time. I also belong to a CLL support group that is very helpful. Keep on truckin’

[DRM18]

Thanks, ksteinberglewis!

Yeah, I'm gonna use the CLL Society's Expert Access for another opinion, as there are no specialists near me, but I suspect I'll wait until after the next flow test in three months?

Don't wanna waste my one shot at an expert's second opinion too early ...

Truckin', indeed! Cruising more smoothly today, thanks to posts like yours!

--Dave!

[Smakwater]

Just my perspective comment - I do not know the interpretive measure or the respective base line for the measures you provided, and I suspect that neither do the specialist understand it completely. Although venetaclax is FDA approved, there is much to be learned about hematological responses and recovery. Even four years out with venetoclax, we are still relatively early in the post treatment observation stage. This drug has altered our bone marrows normal production process as well as a multitude of other hematological signaling outcomes. It could take some time to produce a stable measure "trend". Now then if there is an understood diagnostic spike, that is quite another issue, and that would be addressed by the trained medical professional.

I had a similar issue where a couple of CBC tests at about 2 years post treatment revealed elevated monocytes. I freaked! I was entertained with the idea of secondary cancers maybe myelofibrosis etc... Before a trend could be established over a reasonable time, the monocyte count returned to within range. I still experience low WBC, yet all other counts are in range?

Apparently, for some of us our better measure might be in the physical quality of life that we experience. I am not saying that we should dismiss numeric flags on blood tests, but rather to find a balance in the observation and pursuit of an accurate meaningful interpretation. I do agree with your concern, and I would pursue the answers with a steady objective sense of resolve (calm).

If I find anything credible in reading, I will offer it up here. Please keep us updated.

In the mean time, some of our more hematologically involved members may be looking at your request a bit more in depth so as to respond more accurately.

JM

[DRM18]

Thanks, Smakwater!

I find your reply's third paragraph to be of especial interest, for this reason:

Do you suppose there's sense in regular flow tests (every three months, as I'm doing now)? I'm wondering if it might be better to just continue my regular six-week labs and only repeat a flow test if an alarming trend appears (largely due to my tendency to worry).

But maybe that's just me being hopefully dismissive?

I've said it before, & I'll say it again: I love your username, Smakwater; so much fun to say aloud.

--Dave!

[Smakwater in reply to DRM18]

I know that I am a little out of context here because CBC and flow reveal different specifics, and flow diagnostics unlike blood counts do not move so much vertically in measure, but rather they exist more horizontally. Mostly my point was to encourage you to stay the course, find out what the measure is, and if there is then a need to call for action, go forward with the best choice of action at the time you determine what action is needed, if at all.

I believe that it would be reasonable to discuss with the specialist to have the CBC counts every 2-3 months to re-establish a base line, and watch for a trend." I would also discuss with the specialist what the diagnostic value the flow actually means for you. I do not think that multiple flow tests are going to reveal much more than what is already shown.

It appears that with the numbers that you are showing here, there is a possibly presence for CLL. As Neil stated "Please relax! You are still in remission - your lymphocyte count is still below the lower reference limit! V+O is a standard treatment, but we are still learning how long remissions last".

All those of us having been treated are only in remission Waiting and watching together.

[DRM18 in reply to Smakwater]

Eloquent as always, sir! Thank you!

And yeah, I already get a CBC every six weeks, so that won't change. But my doctor yesterday said he wanted to do another flow test in six months, but I pressed him for three months instead. Maybe I shouldn't have, which I'll discuss with him again in six weeks.

Cheers!

--Dave!

[Smakwater in reply to DRM18]

Are you blood counts climbing, dropping, fluctuating, or showing a reasonable stability?

[DRM18 in reply to Smakwater]

Regular labs are mostly stable, have been for a couple years.

WBC hovers around 4.2, ALC around .9, ANC in the mid 2s, usually. Everything else is normal.

IgC and IgM are a bit low, too (not IgA, which is normal), but I don't get those regularly checked.

--Dave!

[AussieNeil Partner Administrator in reply to DRM18]

Hi Dave,

Looking at your markers, I presume you have a 'normal' karyotype - same as me. You have borderline poor markers of CD38 positive and ZAP-70 positive, so you are probably IGHV unmutated, common with about half of us. With an ATM deletion, you are fortunate to have non-chemo treatments available to you, as chemo treatments wouldn't have worked so well. I agree with your doctor about waiting for 6 months before your next flow cytometry test. That way you are more have a better quantity of CLL cells for a more accurate result.

Monitoring your ALC for the trend will give you a good idea of how long your remission will last. That's done by observing the doubling time, but at the moment your CLL cells are way to low to get a meaningful result. Specialists don't take much notice of the doubling time until your ALC climbs to over 30 and that's probably years away. If your ALC changes relatively smoothly, you might be able get an idea when your ALC is in the 10+ range.

Neil

[DRM18 in reply to AussieNeil]

Hi AussieNeil,

10+ range? Over 30? And I'm only at .9? Now we're talking!

I'm also a big fan of your decision to use the word "borderline" in your reply's first paragraph. It reminds me of a minor mystery: when I was first diagnosed, my thenn-oncologist (since retired) went over my markers with me. I was too stunned to be able to remember much, but I remember her saying "this [forgotten] indicates a poor prognosis, as does this [forgotten]. But this [forgotten] and this [forgotten] are good, and they should balance out the poor prognoses."

Or something like that. I've always wondered what she was talking about at that time. Any notion?

Anyhow, a couple more realistic follow-up questions here, if you don't mind:

1) For the first time since treatment, I got my IgC, IgA, and IgMs analyzed. IgA is normal, but the other two are low (albeit not terribly). Is that normal post-treatment?

2) Since I live in the US, and since my doctor is no specialist, I want to take advantage of the CLL Society's Expert Access. But, because said access is a one-time thing, I don't want to waste it. Do you, maybe, think I should use it now, or wait until (if) things change down the line?

3) Would you accept a virtual hug from me? Your kindly offered knowledge is really stabilizing, sir, & I am quite thankful for it.

Hugs,

--Dave!

[AussieNeil Partner Administrator in reply to DRM18]

Answering your questions, I suspect it was the CD38 positive and ZAP-70 positive results which were the poor prognosis markers your then oncologist was meaning. They correlate with being unmutatated IGHV, but it's not a perfect correlation.

1) Immunoglobulin results vary greatly. Mine were low at diagnosis. I would say yours are well within par.

2) Definitely wait for later before you use your CLL Society Expert Access option.

Of note, there is no ALC threshold that triggers treatment in the CLL guidelines documents. It's a high rate of change (doubling in under 6 months, particularly when the ALC is over 30, which gets specialists reducing the time between appointments. Highest ALC I've heard of is 1,400.

Thanks for the 🤗.

Neil

[DRM18 in reply to AussieNeil]

Thanks again, Neil!

1400! Good heavens. When I started treatment, mine was at 70 (I think). But I had a host of other problems then.

Now go to sleep! (Virtually hugged.)

--Dave!

[rafew]

As Neil has stated, there is no cure for CLL. For some, Venetclox gives longer remission than for others. My CLL started showing back up about 9 months after the end of Venetclox (plus rituxan). At the 1 year mark I started Acalabruitnib and it seems to be going well. I also had the concern for what comes next. It can be very disappointing to see things acting up again, but we seem to have found a new path with my new treatment. Try not to worry it too much. Your labs seem to be pretty good. Best wishes

[DRM18]

Thank you, rafew!

Can I ask what led you to restart treatment? Was your ALC high? WBC? Something else?

Much appreciate your kindness, friend!

--Dave!

[rafew]

So at 9 months we were seeing changes in blood counts and 3 months later they were continuing to increase. I was experiencing rapid weight loss, abdominal lymph nodes had started to enlarge, elevated lymphocytes, leukocytes, monocytes, LDH, and B2M. BMB confirmed need for treatment. My doctor caught me off guard when he started about treatment options - I thought he was talking about something down the road…not quite so immediate. 😀. Best wishes

[DRM18]

Thank for the update, rafew.

Glad the new treatment is working for you; long may it continue!

--Dave!