My consultant told me that I am in complete remission because of my very good blood results.
But he also said that the treatment with chemotherapy (Obinutuzumab plus V.) had to carry on, otherwise the remission will not last.
I thought remission means no treatment at all.
He is talking everything positive so I really question it, if I am really in remission.
I rather prefer more honesty, not sugar coating.
So my question is : what does it mean to be in remission?
"Remission" is a description of the cancer being not readily found upon testing. But we are not/can not test every single cell on the body. For solid tumors, removal/no cancer found on testing generally means all the highly localized cancer has been removed, and further treatment may not be needed. This is determined by previous experience with whatever the tumor is. Whether there is data saying X number of people have relapsed or not, what results were found when treatment Y was done. Large numbers of people if possible.
Blood cancers are not solid tumors, since the cells are often spread throughout the bloodstream. The lymph nodes and spleen are major organs these cells may accumulate in, and there are instances in the literature (as well as reported by people here) of these cells accumulating in or infiltrating other tissues. Plus, the bone marrow is also involved and it can take longer for drugs to penetrate deep into the marrow. So it's not so easy to remove every last bit when all our CLL cells are so disseminated. The targeted drug agents, designed to prefer cancer cells but may also affect other cells somewhat, take a varying amount of time to kill off the cancers. They are relatively new, and there isn't yet a huge amount of data on them. Some CLL variants are more sensitive to the drugs than other variants, which complicated things. Plus cells can hide in various parts of the body, the drug may not yet be in the places a few random cells are, especially with short treatments.
So blood cancers are often treated similar to infections; give drug until you can demonstrate nothing is there, then give a little more to make sure you have gotten everything down to the microscopic level. Exactly how long this *ideally* is, for CLL, is an unknown.
With us having a rare cancer, there isn't a huge amount of data to define what exactly is the perfect amount of time to stay on the drugs. There *are* studies going on trying to determine this, as well as individual doctors modifying "standard regimens" somewhat to individualize treatment for each patient.
Here's an example I personally have gone through. I went through one treatment, extremely immune suppressing, it was 16 weeks and I got an almost 5 year remission from it. After another treatment giving me horrible side effects, I talked this doc into letting me repeat the earlier treatment. The attempt at a repeat didn't work well; the drug wasn't given correctly (I know I did not receive it into my body like the protocol said) and it was done for only 8 weeks. There was data saying "the bone marrow gets cleared out in 8 weeks" and I tested negative for cancer. I was in "remission" but it started growing again/giving me symptoms shortly after a year of remission. Obviously, I had not cleared out all the cancer even though I tested "in remission".
So there's a fine line between "stopping too soon" and not. The optimal time for large numbers of us is not yet known, and doctors nowadays generally don't stop the med immediately after uMRD is obtained. The technology is more sensitive nowadays also, had it been available when I tried the repeat I may not have tested uMRD/remission, and had treatment extended.
Early studies using V&O were for 2 year treatments. There is a known percentage of people who stay in prolonged remission with 2 years. Unless one is in a trial, or there are reasons (tested for early remission, patient has extremely responsive variant, patient is now having unacceptable side effects of treatment, etc) not a lot of docs will want to modify the protocol.
Thank you Sofia for explaining it so good. Everything is new to me and I have still so many questions.....
An excellent answer by SofiaDeo as usual. After reading her answer you may say to yourself maybe I should take V continuously for the rest of my life to keep these pesky CLL cells in check. While this is a logical line of reasoning researchers have discovered that for most people the CLL cells will find their way around the drug eventually if it is used continuously leading to a loss of effectiveness. Thus, doctors are trying to determine what the optimal length of time is for continuous V usage. Too little time and too many CLL cells survive and come back in force quickly. On the other hand, if the drug is used for too long the CLL often becomes resistant to the drug. That being said, I have read of patients that have been on V for years and years often a reduced dosage. So maybe dosage is the key? Then there is the variability of CLL markers in individual patients which impacts how the drug performs. On top of these variables are factors like age and additional health conditions. As you can see it gets quite complicated quickly. So the protocol that you and I are on is based upon the researchers’ best knowledge at this point. Typically that means continuous V for 12-24 months. I hope this helps you with your understanding.
Best,
Mark
I had V+O stopped at 11 months after months of excellent blood results and am still MRD- after two years. I developed an autoimmune disorder following treatment which is quite rare apparently and according to the researchers who’ve looked at my case, a sign that my immune system is now extremely good for a CLLer. The second time I got COVID I was mostly symptomless and positive for just three days.
All that is to say V+O is incredible and can work quickly but I’d want to keep going well beyond 2 months. I do suspect that two years can be overdoing it for some of us though.
I was told I would be on imbruvica the rest of my life, then it failed. I did V plus R and was told I'd be on venentoclax the rest of my life, but felt over-medicated. Based on my results the V was reduced to 200mg because more was too much, then I had a bone marrow biopsy and the results supported trying a bit of life without the V. I got 8 months off so far and if I need to start again in the future, then so be it. See if you can have a BMB or other test to support trying to be off of medication if you feel over-medicated or too much fatigue from medication. You can always go back on V from what I hear. It will depend on your current status and testing results, congratulations on the good blood tests.
Edit to add I was on V plus R 2 -1/2 years, I also did the full R infusions, I just noticed you had great results in 2 months - maybe that's why they want to keep going as other posters say its up to 24 months protocol usually
Also on V+O, 12 cycles. R/R VenR is 24 cycles.
Going on just my blood tests then I was in remission on day 4. My doctors are ecstatic.
But there is more to "compete remission" than just blood tests.
End of week 3, before first dose of V I had a CT scan and some internal lymph nodes were still enlarged putting me at high risk of TLS. The doctors were a bit disappointed.
Cycle 2 end of week 3 with V at 200mg I was unable to locate the lymph nodes. The doctors were so pleased and confident in my progress that they told me I could ramp up to 400mg without more blood tests. So I cancelled them before leaving the hospital. Got home and got an email from the CNS telling me that Abbvie had told them as I had started on V as high risk TLS I had to have the blood tests, they had rebooked the blood tests.
At start of cycle 5 I'm fairly sure I could be classified as being at "Partial Remission".
Last two cycles I've been promised a CT scan in the near future to check size of internal lymph nodes and spleen. As it didn't happen in cycle 5, maybe sometime in cycle 6? The CT scan still won't allow claiming "Complete Remission" as that requires results of a bone marrow biopsy. I'm not expecting and won't welcome the next BMB until 2 months after cycle 12 is complete.
As SofiaDeo says it's possible to be uMRD in the blood but not the bone marrow. I don't think any tests for MRD have been done on my blood yet. Remission criteria do not include MRD, they look for cells and nodules in the bone marrow. uMRD is a good prognosis for long treatment free remission.
As the saying goes, "Keep taking the tablets!". (and the remaining IV(s) of O)
Thank you everyone for replying. Yes....I have to take the V. until next year summer...this is the plan at the moment. My last monthly O. infusion will be in October. As I said the consultant seems to be overly positive, not realistic.
Your treatment is not traditional chemotherapy but a targeted therapy, similar to drugs like Ibrutinib, which is a BTK inhibitor. Typically, these kinds of drugs are prescribed continuously until there's disease progression. However, recent evidence suggests that intermittent treatment might also be beneficial.
I was personally treated with Ibrutinib, but after 18 months, I experienced serious side effects. Consequently, my treatment was halted, and given the low level of CLL in my blood, my consultant opted to keep me off treatment. They anticipate that I might not need treatment for another 2 to 4 years. At that point, I may be prescribed drugs like Zanabrutinib or Acalabrutinib.
If you're considering stopping treatment, it's essential to consult with your consultant. They will need to check the CLL count in your blood. If it's sufficiently low, they might consider pausing your treatment. However, keep in mind that the idea of intermittent treatment is still under discussion. Many believe that staying on treatment continuously is the best approach."
There is some evidence about to be discussed at one of the haematology conferences in the USA. This is all talk about combination treatments and the outcomes based on continuous treatment and treatment after period of time, I think those results are going to be very interesting.
I am not thinking of stopping my treatment with Obinutuzumab and Venetoclax
and all the other medication.
I only question the fact that the consultant is talking about me being already in remission.
I am not feeling that good. The consultant gave me even the SR1 form (terminal illness).
My husband has an unusual pattern of CLL he was only on V & O for about five months and never took over 200 mg of Venclexta and had to stop it several times due to extreme neutropenia. He never had high white cell counts like most others. He had been treated successfully twice before with just Gazyva and had gotten 1 year and then 2 years without treatment. This last time he tested as UMRD as well as a completely clear BMB. His last treatment was September of 2021 so he again is approaching a 2 year mark. He is now 84. First diagnosed in 2015. Still on his medical record it says CLL not having reached remission. His bloodwork remains excellent. In his case since he had more side effects from the treatment he stopped at the 5 month point. I think each point of view has merit but in his case and age and with much discussion with his doctor we chose not to continue with the regimen.
Well CLL is not curable, but it’s certainly not a terminal diagnosis or illness unless it’s become untreatable, which is not your case? An SR1 is for people with 6 months or less to live, I believe. As you are UK based I would suggest asking for a second opinion from a CLL specialist. If you can afford the consultation, then you can see someone privately. There are some good people at Leeds Teaching hospital, or just search for Nova Health Care in Leeds. The will be others across the UK… and sometimes those specialist can help you understand your disease, your mutations and prognosis so you can make you own informed decisions.
I would just clarify with your Dr. I was on Inbrutinib 2017 and moved to Acalbrutinib 2018 - June 2023. I was told that I was in remission, when I pushed for clarification, it was medical remission, meaning the disease was not progressing because of course of treatment.
We added the Venclexta protocol Jan 2022 and was supposed to be 2 years since I have already been in treatment. I asked for the Clonsq test to be performed in June to see what I was and because the side effects were wearing me down and all good.
I am off all medication now and feel like me again. Now my Dr was speaking with the head of Onc/Hematology at MD Anderson when we ran this program and most people are doing it with Oz or Ibru + Venclexta. My results were best case scenario and he said it may actually be permanently gone. We shall see. Good luck to you!!
I started on Venetoclax and Rituximab in February. My numbers were all pretty much back to normal in June. I had to stop Rituximab because of serious side effects. My doctor decided to do an uMRD/Clonoseq to see where I was. Want to point out I had also been on acalabrutinib for most of 2022. Test came back with still a lot of circulating CLL cells in my blood even though my cbc looks good. Continuing with Venetoclax and now obinutuzimab.
My husband has been in remission for 3 years in November with no treatment.
Hi pinhead , what treatment did he have to reach remission ? hope it continues for the rest of his life ..😊 blessings , james
He was on Ibrutinib, Venetoclax and Obinutuzumab. His doctor recently told us that they were not happy with Obinutuzumab. They had many problems with that part of the clinical trial.
thanks
Maybe they should go slower on the first infusion. I had a IRR almost as soon as the infusion was started. It was restarted at 12.5ml/hr and took 8 hours.
Genentech/Roche have set a flat rate for GAZYVA of 25mg(ml)/hr for 4 hours for first 100mg infusion.
CancerCare Manitoba start at 6ml/hr for first 60 min, then 12ml/hr for 2nd hour finally 24ml/hr. Total infusion time is 5 hours 25 min.
cancercare.mb.ca/export/sit...
I'm sure I've seen another that started at a similar rate but progressed in 30 min steps to 36ml/hr to complete in 4 hours.
And then there's this guy. 16 step infusion, rate changed every 15 min, started at 0.1ml/hr. Total time 3 hours 58 minutes. The rate accelerates to 160ml/hr, all the last hour is at rates in excess of GAZYVA 25ml/hr flat rate. These settings really need to use rate and time but needs 3rd decimal place if rate and vol to be infused (VTI) is used. UK NHS chemo nurses aren't allowed to set decimal fractional rates (nurse in jail, missed a decimal point). Also they don't seem to able set a rate and time but only use rate and VTI, some 30 minute steps become 33.6 min with settings they have to use (rounded volume up, instead of down). I think my 12.5ml/h rate was set either by a doctor or a charge nurse, not a RN.
healthunlocked.com/cllsuppo...
The risk with these initial low rate settings is that an IRR may still occur, then the rate is halved and then the patient gets stuck at a very low rate for days.
It had nothing to do with the flow rate. It had to do with the mortality rate.
My husband had opposite experience Gazyva was a great help in his case with very little if any down side.
UK hasn't seen that mortality rate.
15 deaths where Obinutuzumab was being used. This will include FL where Obin is used in maintenance doses.
info.mhra.gov.uk/drug-analy...
(Doesn't render in Firefox, works in Chrome.)
While Ven has racked up 121 (800% more) reports of deaths from about 50% more reported reactions.
Great question and great explanation by SOFIADEO !!
I am currently in treatment (clinical trial with Obinutuzumab + oral investigational drug BGB-11417- next generation Venetoclax). My lab tests (namely WBC and ALC) have been range since I received the very first dose of Obinutuzumab back in May!! I have 2 more Obinutuzumab infusions and 11 more months of daily oral BGB 11417 (will also be having a repeat CT scan in a few months and then a BMB somewhere towards the end of the trial - my pre-treatment BMB reflected 85% infiltration with CLL).
My amazing CLL team is thrilled with results thus far and, of course, so am I!! Am I in "remission"? Personally, I am waiting for the BMB to make that call.
Keep fighting back every day, MalcT- I am right there with you.
Thank you Chi-town_Girl......yes I am not giving up. I ignore the SR1 form anyway.
At the moment I have a lot of pain in my left ankle and swollen feet but otherwise
I am fine.
There is always something...😆
My Oncologist says that CLL doesn’t go into “remission “ like other cancers. It only “goes to sleep “. His experience is of one stops treatment, the cancer comes back much worse than before.
While it's true that for some of us, stopping maintenance treatment - in particular BTKi therapy, can result in tumour flare (which is countered by resuming treatment), this only happens to some of us - usually with more aggressive markers. Tumour Flare can be particularly scary, because it can appear to be Richter's Transformation, but we need to keep in mind that many members have reported going off BTKi therapy and resuming watch and wait extending from months to years.
Neil
remission = no treatment ,cancer not (significantly ) detectable.
or Treatment = detectable cancer requiring treatment
I’ve responded to you before and I’m based in the USA. I’m not sure your results of testing go deep enough to determine if you are truly in remission. I have had 6 bone marrow draws during my 2 treatments for CLL.
The most current one found I still have some disease present. It was a very deep and thorough test.
Previous test required in the study I participated in 2018-19 had me uMRD. I took Ibrutinib and Venetoclax in that study, fixed duration. I excitedly was decease free in 2019 and stayed that way without medication for 2 1/2 years. Then the CLL started to show back up. Most of the 289 study participants are still doing well, no signs of the disease. I however, am in the 2% that have relapsed and need to have other treatment. My Dr thinks the present testing, that is more thorough if available previously may have shown I had not been entirely cancer free. Presently, I’m on Venetoclax and received Rutuximab
Yes thank you...that's why I don't jump with joy and why I also question it.
In September I will have a face to face appoinment with the consultant and then I will
ask him. I definitely don't feel that I am as fit as a fiddle. Still much better when I
started the treatment.
I wish you improving health in your CLL battle.
I wanted to suggest you look into the CLL Society. It is an on line website that has great up to date medical articles about CLL. They have many other resources that have been very valuable. It’s free! They do ask for donations very low key.
I’ve belonged to a support group that is sponsored through the society. It has been extremely helpful in my battle with this disease.
You could take in a print out of Table 4 from this and ask him to tick the boxes. The pdf has a colour rendering of the table.
ashpublications.org/blood/a...
CR requires all boxes in CR column to be ticked.
PR column 2 parameters of group A and 1 parameter of group B need to improve.
ACP-196 (Acalabrutinib) TRIAL - 31st monthly cycle achieved with full remission
FCR-6plus years in remission - am I cured.
People's lived experience of complete remission after long illness?
Remission after Venetoclax?
