I’m in Ontario Canada and I’ll be starting cycle 12 of V in February. Wondering what I should expect in the way of tests, measures etc. Bloodwork has been in the normal ranges for three months. I’ve been seeing a Nurse Practitioner for last four months who takes vitals, shows me results and sends me on my way. O went well and had immediate effect V was up and down to start as 400 mg drove everything down - played around with dosage before settling on 200 - again four months ago. When I was diagnosed 2021 ( about a year after I started to notice swollen node under my chin but thought it would go away- no other symptoms) it was IGHV unmutated and no TP 53 depletion - that’s all I was told. When bloodwork indicated need for treatment - April 24- I was told that because of my Afib the better choice was V+O - which I was fine with given it had shown good results. Then I find this site where people seem to have so many tests, treatments etc and I feel ignorant - why didn’t my oncologist talk to me about them - what would they have changed? And back to first question - what should I expect /ask for at the end of the treatment and what difference will it make?
coming to end of V+O treatment: I’m in Ontario... - CLL Support
coming to end of V+O treatment
Hello Swanseacity. I am not exactly sure what you are asking, but I will take a layperson’s stab at questions you might ask your doctor.
As I suppose you know, V+0 is typically a time limited therapy. Once you finish the protocol you get off meds, presumably until your cll returns.
In your shoes, I would want to know how successful the treatment was for you and what length remission you might get. No one can answer that with certainty, but your doctor should be able to at least give you an educated guess based upon his experience and any data from trials.
Probably the best predictor of how you will do, the Golden Fleece for time limited therapy, is mrd statute after you complete therapy. MRD stands for measurable residual disease and is a measurement of how much or little Cll one has left Many people on V+O reach mrd undetectable status (no Cll found in a sample). MRD undetectable is probably the most reliable marker for predicting length of remission. So I would certainly ask your doctor if you and mrd undetectable and when did that happen.
The most typical test for mrd status is called flow cytometry. See if he will explain your results to you. If they are nit checking mrd status, I would personally push for it.
Mrd status is sometimes double checked with a bone marrow biopsy. Someone mrd negative in the blood might still have Cll cells in their marrow. I dont think I would push for a BMB as it is an invasive test and the results probably do not inform any treatment decision. They will probably take you off therapy when completed regardless of your bmb results.
Finally, you might ask what will you be treated on is you progress. That might be hard to say as that may change, but if you are curious your doc probably what they are currently doing for folks who relapse from V+O. Good luck.
Thanks
The iwCLL guidelines are here.
ashpublications.org/blood/a...
Print off the response criteria and get each one checked off by the doctor. A CT scan is preferred for nodes, spleen and liver. A bone marrow biopsy is required for the marrow at bottom of table. They will do microscopic examination of the bone marrow. I believe the field of view allows 200 cells to be checked and they move around on the slide(s).
For a detailed description of the response parameters, see section 5.
*Sum of the products of 6 or fewer lymph nodes (as evaluated by CT scans and physical examination in clinical trials or by physical examination in general practice).
†Spleen size is considered normal if <13 cm. There is not firmly established international consensus of the size of a normal liver; therefore, liver size should be evaluated by imaging and manual palpation in clinical trials and be recorded according to the definition used in a study protocol.
CR, complete remission (all of the criteria have to be met); PD, progressive disease (at least 1 of the criteria of group A or group B has to be met); PR, partial remission (for a PR, at least 2 of the parameters of group A and 1 parameter of group B need to improve if previously abnormal; if only 1 parameter of both groups A and B is abnormal before therapy, only 1 needs to improve); SD, stable disease (all of the criteria have to be met; constitutional symptoms alone do not define PD).
It is becoming common to test for measurable residual disease. This may be on bone marrow aspirate or peripheral blood. Common flow cytology tests 10,000 cells, less common can test 100,000 cells. If you didn't have an initial "training" test using clonoSEQ then that test can't be done, it can test 1,000,000 cells.
Thanks for the chart! Other than marrow I meet all requirements for CR!
Bodes well. I had a CT scan at the end of cycle 6, that along with the blood test was judged to be "unconfirmed" CR. Unconfirmed due to not having a BMB.
In addition to the excellent replies on tests as you end treatment from cajunjeff and Skyshark , there's the longer term assessment of how well your immune system is recovering. While V+O is an excellent treatment, as with all treatments, it takes a while for your lymphocyte counts to recover. Anti-CD20 monoclonal antibody treatments (commonly obinutuzumab and rituximab with CLL), have an unfortunate long term legacy of significantly delaying the recovery of healthy B cells, so you are unlikely to make antibodies (immunoglobulins) in response to infections or vaccinations, for up to a year or so after your last infusion. Also, there's a risk of what's termed Late Onset Neutropenia, which some specialists consider is what happens when competition for bone marrow capacity results in the temporary reduction in neutrophil production, as B cell production recommences. That's more likely if you've needed G-CSF neutrophil boosters (Figrastim, Neulasta, Zarzio, etc.) to get your neutrophil count up high enough for your obinutuzumab infusions. So it's important to remain on a higher alert about avoiding the risk of infections for at least another 6 months.
Your specialist should also be working out when to stop or reduce any prophylactic support against viral and bacterial infections you've been prescribed during treatment, by checking your lymphocyte, neutrophil and immunoglobulin count recovery. I'd personally recommend staying on prophylactic medication to prevent an outbreak of shingles (usually acyclovir or valaciclovir) until at least you've had the Shingrix shingles vaccinations See: healthunlocked.com/cllsuppo...
Neil
Would revaccination with Shingrix be necessary if you had received it prior to commencing V + O?
Ask your specialist about what they recommend, as there isn't yet a concensus regarding whether repeat vaccinations should be done after V+O. I expect that in Canada, you may have to pay for revaccination. Personally, I'd still be tempted to try to boost protection against shingles, given I've had to pay way more for appointments with a pain specialist and pain management medications, which don't provide full management from postherpetic neuralgia. Any additional protection against experiencing the impact of permanent nerve damage for the rest of your life is a good investment.
Neil
Thanks Neil. “An ounce of prevention…”
No, I had it prior and my specialist told me it was OK.
Just adding to what Neil said, my specialist (also in Canada, Swansea) kept me on prophylactic meds for a year after treatment. He didn’t offer MRD testing, I am under the impression that it still isn’t common in my province (Ontario).
Yes Bobby - i’m in Ontario also- Stronach Centre in Newmarket
I hear good things about them! I go to Princess Margaret. A good drive, but worth it.
I had the same conversation with my CLL specialist this past Thursday that you plan to have with your doctor. V + O is my second line treatment and as such my protocol as a relapsed patient was V for 24 months. I’ll take my last 400 mg of V on 12/31/24. The medicine has not caused me any notable side effects so in some ways I am nervous about discontinuing.
I didn’t have uMRD testing (1,000,000 cell sample size) as we used a blood sample I had given for research as the pretreatment sample and unfortunately this sample didn’t have a dominant clone population. This is unusual but not unheard of. Early last week I had the standard 1/10,000 test of my blood which showed no CLL cells. Certainly positive news but I would have been disappointed if this test showed CLL cells as it is only n4th power and the sample wasn’t from my bone marrow where it is more likely minimal residual disease can be detected.
My doctor is at the forefront of research at Dana Farber and Harvard Medical School. He told me I could have a BMB biopsy and a CT scan in January to determine if the CR criteria Skyhawk outlined above was achieved but he didn’t recommend it as while additional information would be useful to understand the depth of my response it wouldn’t change the way he would treat me moving forward (The message CajunJeff conveyed to you above). I opted not to do the testing. He kept me on ninety day appointments to watch my blood results carefully. If these reveal changes a CT scan and BMB will likely be ordered. I assume if I had the scans and BMB test now and they showed a low level of disease he would have increased the intervals between my visits? Perhaps that would be the only immediate benefit of more testing?
We talked about future treatments. The doctor said he just returned from ASH and he was encouraged by research results. He felt by the time I relapse again there would be more information available to help us select my next treatment which could potentially be V + a BTK inhibitor or perhaps V + O, depending upon the length of my current remission.
I think you are getting best in class treatment and care. Perhaps communication could improve between you and your medical team but there is a lot to communicate in this complex disease and I’m guessing your caregivers are pushed for time and they will cover your questions about testing at the conclusion of your treatment protocol. Stay positive. You are in a very good place.
Best,
Mark
I’m in Montreal, Canada and I can tell you that the protocols for after treatment exams are different. Unless you’re in a trial, MRD won’t be offered to you automatically. It’s a case by case approach, so you should ask your doctor.
Same here in Sweden. I expected some tests after finishing treatment but my dr just looked at me like I had asked him yet another stupid question. My liver is still huge while spleen has returned to normal size and internal nodes and free fluid in abdomen are gone, but I still have an elongated swollen node under one armpit. He can't explain the node and no interest to check up further. For some strange reason the size of my liver which stretches below my hip bone still, has been decided to be an anatomic anomaly so no interest in that either.
I know those participating in trials get tested at the end of their treatment, but not so for the common patient.
Hello there Swanseacity.I have found a just afew of us have normal range blood results at start and that continues through.
So unless the lymph nodes became enlarged diagnosis was negligible.
A biopsy of same confined my diagnosis and treatment only carried out because of one lymph node being 4cm.
Looking back I can now see I had been having symptoms of fatigue and sweats breathlessness for a long while .pernicious anaemia was mentioned but bloods were always normal so One carries on blaming age and telling one self to pull you socks and carry on with life
You were concerned about treatment. To date I have had three cycles of obinutuzumab and now up to 400mg of venatoclax.
and all the while bloods taken the day after treatment have been in normal range .
Everyone experiences different side effects. So it can only be a basic guide
.
. The Consultant insisted I had non live vac of 2 Pnuemonia 2 shingles injection covid and flu before I started treatment . even though I had previously had shingles and puemonia vaccine in the past and I will take antiviral and antibiotic / antibacterial tablets throughout treatment.
I have been pleasantly suprized. Lethargy is still there but becoming lighter ? difficult to explain some days better than others.
There has been a continual cough, some headaches, an uncomfortable feeling on the two days you are asked to take the antibiotic/antibacterial
Which adds to the antiviral and eventually venetoclax but when you see that pattern you accept it will only last a day . I was offered omeprazole if it became more uncomfortable.
Many visits to the loo but a must to keep up drinking the 2litres of water a day basically the end product of breaking down the Cancer cells is excreted by your kidneys so to prevent
Tumour lysis syndrome keep up the daily water requirement.
One of our group became very poorly developing that.
The specialist nurses are always there to listen and guide you.I have been fortunate to have excellent ones.
I hope this helps, you do not state your age . Which must make a difference to treatment and side effects.
I am 80.
I have been told at the end of my treatment ones auto immune system will remain low and it may take a while for B cells to regain its numbers .Lethargy make continue.
but one is called back and monitored by the team you are not just discharged CLL or SLL at the moment cannot be cured but can be managed .Scientific research has come a long way to longer remission.
Myvi
Glad to hear that some NHS consultants are knowledgable about vaccinations for CLL.
My muppets couldn't be bothered to go and find out, even when asked by my GP.
I know that Oxford recommend revaccination with PCV13 and PPV23 after treatment with chemo or V+O, when lymphs >1x10^9/L or 6 months whichever is sooner. Just to annoy my lymphs remained above 1 through treatment and then dropped to 0.5 6 months after (hoping that's a response to COVID vaccine). PPV23 shouldn't be given closer than 2 years after previous due to possibility of a reaction.
Hi Swanseacity
I’m just coming to the end of my treatment.
Been on V&O for the last year and have 4 days on Venetoclax left 😁
At my last appointment 2 days ago, they booked me in for a CT scan and a bone marrow biopsy, both of them for early in the New Year.
Hope your treatment goes as easily as mine did.
Andy 🏴
Are you in UK?
Yes he is. Every name on a post is a link to the Biog. Some may not chose to show location but it can often be divined by looking though their posts and replies.
Hi Swanseacity
yes I’m in the UK, bit of a clue in the flag, and the NHS have been great.
Though your bio says Canada, so I don’t know if you’re currently in the UK yourself.
Given your name/tag you probably have some sort of link with this area.
Forgive me if I’m wrong, but Swansea, Ontario, Canada seems to be part of a city, rather than an actual city
Andy 🏴
Yes Andy - born in Swansea move to Canada in ‘81- what part of Wales you from? Ontario is a Province - I live about an hour North of Toronto. Each province has different rules
hi Swanseacity 🇨🇦
A nice move,
Hope it’s all going ok for you out there
I live near Cardiff
Andy🏴
V and O treatment
V + O , TP53 and p13
First appointment since ending V+O treatment 
O & V Treatment - ALC Doubling 
