I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax.
Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles of FCR due to profound neutropenia.
I just learned from my oncologist that I can’t get the UMRD6 test because we had no bone marrow biopsy done before treatment.
Questions one
1. Is this true
2. What is the most sensitive MRD Testing I can get at this point and where do I have to go to get it. My local oncologist and pathologist don’t seem to know how sensitive there Testing is here.
Thank you so much
Good luck and God bless
Written by
skipro
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Unfortunately, the best results are from having a pretreatment baseline specimen. The lab needs to know what your specific dominant clone is; remember there can be random abnormal cells that our bodies deal with efficiently. The pretteatment baseline identifies the CLL cells, and certain characteristics (base sequence of specific sites) they have. Post treatment, the test now looks to see if & how many of the "dominant clones" are still present.
It may be attempted with a pretteatment blood specimen, but the results are not considered as reliable. A recent post has a person having problems with an der pretreatment blood specimen.
Flow cytometry was done on my bone marrow pre NGS. While it's not considered "as sensitive", if you get a zero CLL found you are considered in a remission. My flow cytometry report showing "no cell abnormalities found" was followed by an almost 5 year remission.
Please consider doing the full protocol. They are *studying* if stopping as soon as one reaches uMRD is as beneficial as conpleting a full 2 year treatment (longer if not uMRD). If you can't tolerate the side effects, please consider some short term lifestyle modifications. I wasn't attempting skiing & hiking at altitude while under treatment, I did gentler exercise, and I haven't had problems. I got tired doing easier stuff, had to stop or pull back on occasion. If you were being treated for walking pneumonia, would you still be pushing yourself physically? It's great we aren't stuck in hospital 5 days at a time, every month, retching for hours on end. But being ambulatory doesn't mean we should jump back into heavy physical exercise, if our bodies don't like it. If you are getting shortness of breath, and muscle aches/pains, from trying to do your "usual snowshoeing at high altitude" routine, you need to cut back a bit, don't you think?
I finished 3 months of FCR in 2018, which brought 5 horrible days per 28 day cycle, then I felt totally great for the rest of the 28 days. We did no testing after, just stopped due to prolonged neutropenia. I should have started treatment again at the 4 year point, but due to various obstacles it was 5 years.
V + O has been a year long period of semi to full on horrible compared to FCR. I feel like I lost 3 years of vigorous skiing and ski trips due to Covid and was 65 at start of V + O. treatment. Several fellow phsyicians with CLL made the choice to go with Acalabrutinib for "life style " reasons. I ski with one, and he says he has had 0 side-ffects on 4 years of Acala.
I wanted to do something that would not impair function as much to buy a year or 2 of somewhat normal vigorous ski and trips cuz that really helps my overall wellbeing in so many ways. , but eventually was so sick with advanced CLL I just took the V + O by default as I could not convince my team to do otherwise and couldn't face finding and starting over with a new team at that juncture.
I thought I'd hold off on the harsher more time consuming treatment while I was still younger then do the harsher stuff when my age and arthritis were going to limit me anyway.
So I just have been living for a reprieve even if it means starting treatment again sooner.
Acceptance of physical limitations and the need to be driven and succeed has really been hard to achieve. The pushing myself and achieving hard physical things have always been so good for mind, body and soul.
So had going on ski trips and not wasting all the money of airfare and lodging etc. now because I would end up with 2-3 hours max on skis, then holed up in some remote place for the rest of the day.
Anyway, that's my mindset and hope to get off treatment.
Well, you're now post-obinituzumab correct? So your body won't have as much stress while on a single agent. Only needs to metabolize, etc. one drug now, plus the large CLL die offs with the need to break down & eliminate *that* load should be behind you. Now it's the cleaning of any bits here & there trying to hide, and adjusting dose if you get neutropenia or other adverse effect during this final scouring. I hope you feel better soon.
If you read my profile, I have listed my treatments.
I’ve been weighing the Situation of what brings me joy and feeling I’m passing the age and time in life that I can still do them. I feel like I lost 4 precious years of younger age activity due to COVID and then relapse then 1 year delay in treatment due to understaffed CLL clinic the going with a harsher treatment.
There is some depression that comes from the response my wife chose and continues to chose about all of the above which, long story short, has led me to feel stuck between 2 drastic approaches for 4 years. I keep giving up hope and realizing I need to move on but I keep reliving the definition of insanity Which is living in limbo while trying to salvage something only to come up empty handed despite all efforts and constantly hoping for a different outcome.
This may be getting too personal and so I should either stop typing or switch to a private communication about it.
Skipro - Covid was a hammer blow to those of us with CLL. You chose skiing as a respite and we chose cycling sprinkled with hiking on remote trails. I think it kept us both sane and was worthwhile. I am sorry you were also dealing with a lack of support from your wife. I think skiing may have saved your life and soul.
For now, being on V, since you are no longer starting the regimen, I don’t see a problem with strenuous exercise. You could experiment a bit and try different approaches and see how you fare both physically and emotionally. Both are important. By different approaches I mean different workout patterns - a lighter workout more often or a strenuous workout followed by some days off. According to my son-in-law, when you exercise strenuously you make small tears in your muscle. If you want to build muscle, having some rest days allows your muscles to heal.
But it’s a choice we all have to make - how to deal with not only Covid but also the flu, norovirus and colds going around. Being outside is what we do, avoiding indoor spaces with others.
I admit I have some bias - I love your photography and I would like you to finish the drug trial.
Thank you for your kind response. I'm looking into multiple scenarios for pain control.
Unfortunately, some require surgery, like the compressed ulnar nerve across my elbows that cause pain, numbness and weakness in my hands.
I also have a rotator cuff tear and healing tendon to bone takes 6-9 months in normal people. I'm scouring the medical literature to see how folks with CLL on Ven heal.
Plus I could use an epidural steroid or surgical decompression of pinched nerves in my lower back.
I love to do these surgeries on others (ha ha) and can't wait to get mine done.
I also have so many problems with teeth and have been told the only long-term solution in dentures, but the dentist and oral surgeon at my cancer center said it was too dangerous for now.
I can tolerate the nausea and the diarrhea although I have accidents skiing and hiking when it flares and have to wear a men's diaper brief.
I really want to do the aggressive physical things before I get too old and it has been hard to hear other docs with CLL talk about how they chose Acala for life style reasons. One of these is 5 years older and is on year 4 of Acala , has "NO" side effects, had an easy go with Covid and can ski twice as long as I even though he only goes a few times a year and is not used to the elevation.
So that is why I was hoping to get a bone marrow biopsy at the 1 year point and have the clonosequence MRD6 done. In theory, I am more of an under treated case than a RR because I could only complete 1/2 of the FCR cycles. I had normal labs, spleen and nodes within 1 month of first round, but had to stop due to Neutropenia. I figured if I were at uMRD 6 at the year point ( the time at which first time treatment recipients stop ) that I could stop.
But now I can't get the MRD6 test as there is no blood or tissue from pre-treatment. So I am searching for a place that can do the 6, 8 or 10 color flow as the next best test.
NO luck so far in finding a site I could go to for these tests.
But alas, I can keep doing what I am doing and just accept it.
Well, quite a ramble but that's the perspective I'm seeing from. I try to focus on the top one in the pic.
PCR requires patient specific primers (baseline testing before treatment). Flow cytometry can give results to 10^6. Requires >=6, 8 or 10 colour flow test not 4 colour.
Conclusions: Using a modified 10-color LST panel for both diagnosis and MRD measurement of CLL is feasible. The advantages are increased familiarity with the antibodies and potential cost savings, making MRD accessible to more cytometry laboratories. Atypical CLL cases without the usual CD5 positivity and dim CD20 are very difficult to gate using an LST panel. In these cases, the ERIC panel is clearly superior as CD22, CD79b, CD81 and CD43 can still provide separation between the malignant and normal lymphocytes.
I'm going to ask my provider and local pathology lab about what they are capable of doing.
Long story short, FCR was horrible for 4-5 days a month, but back to normal the rest of each 28 d cycle.
V + O 1 year of misery.
I decided if I were uMRD6 I'd stop Ven at 1 year instead of 2 as a balance of life expectancy and quality.
Now I'm told we can't do the Clonoseq uMRD^6 because I had no pre=-treatment Marrow. So now I'm back to shooting from the hip decision about timing of treatment.
But thanks to you, I may still get better info to base future treatment decisions on!
Flow cytometry is still a useful tool. NGS won't tell if other strange things like newer mutations start to happen, flow cytometry can (if expanded panel testing, not just those to erify CLL). My original long remission verification testing was by flow.
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in the pic.
Still uMRD 1 year later after fixed duration A&O combo
FCR Treatment, 4 cycles or 6, follow up
Molecular remission after 6 rounds of FCR
POST 6 CAR-T cell therapy
