The nutcase in me is rearing her ugly head again! I saw my consultant last week, 2 weeks after completing 6 rounds of FCR.
He is delighted with the scan results post round 4 and has said they are as near to normal as they could be. He is repeating the ct scan in Feb after I have recovered from the chrmo in order to have a new baseline.
I asked about bmb but he was adamant it wasn't necessary.
My issue is ... Am I in remission? How good is it? I keep reading about people in complete remission and I want to know how they know? Really I want to know!!!!
Any suggestions to relieve my anxiety?
Beth the nutter!
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Bethan49
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There are a number of remissions in CLL and determining which it is, is complex... part art part science... except for MRD negativity, which is a pure measure of remaining B cells... and considered clinically to be the best.
You can read all about them in the CLL Guidelines below
As a result of the treatment the doctors usually try to answer 2 questions. They first assess the response and depending on the answer to this question they try to find the answer to whether one achieved MRD negative status. The first question is pretty much based on comparing state after treatment to the norm from all obvious angles: ALC in peripheral blood, node size and spleen size. ALC is done through blood test. Node and spleen has to be done through CT scan naturally. If the results come back as all normal, doctor can try to determine if patient achieved MRD negative (minimum residual disease) status which means no detectable signs of CLL in patient's body. This can be done in two ways - via peripheral blood test or through bone marrow biopsy. Peripheral blood test is not 100% indicative of MRD negative status because lots of CLL could be accumulating in BM which is not detectable by this kind of test so usually doctors prescribe BMB. If BMB comes back negative i.e. no CLL detected patient is told to have achieved MRD negative status.
The quality and duration of remission is based on combination of answers to these two questions. The idea is, the better the response, the more durable is patient's response going to be. So if you achieved MRD negative status this is the best news as the response to treatment was as good as it could get and current instruments cannot detect any residual disease is your body. Detectable is the key word. Not detectable does not mean it is completely eradicated it just means instruments and tests cannot find any disease remaining.
How long will the remission last? It depends from one person to another. The hope is, the deeper the response the longer the remission. If you did not achieve MRD negative status, the remission will be shorter...
Putting numbers to the result is more of a guessing game. Usually statistics are used to compare against much larger population of patients with similar results.
Surprised doc does not want to do BMB. Discussing remission without this test is not appropriate...it is inappropriate because without it, it like waving a flag to a patient saying just trust me, you will be fine , you are in remission. Do not trust the doctor until you know you have all results at hand and they can be analysed. Without BMB you will not know what the CLL penetration is in your BM and therefore you will not be able to plan ahead and having some sort of a plan in your own head is important, particularly if you do not have access to all modern meds...
So if I were you I would not settle on hand waving...I would insist on BMB getting done.
Thank you so so much for this extensive answer.. It has clarified all that I needed to know in a way I completely understand.
I am only 3 weeks post last round abd think I just need to relax and enjoy not having anymore chemo .
I have an appointment at the beginning of February where they will have the results of another ct scan. Bloods should be somewhat more stable and I can ask informed questions.
My husband is in a similar situation to you...he finished BR in March and is in "complete remission"...I thought he would have a BMB but was told this was not routine in the UK and not thought to be worthwhile atm. Although they have used the term "complete remission" they did say that extensive testing of the bone marrow would probably show traces of CLL...
MRD biopsies simply aren't done in many clinical situations outside the U.S.... patients might get a flow MRD on peripheral blood, but even that is quite rare...
I didn't know that or I should say I thought this was a standard procedure...seems like a fundamental thing to do...
I am in Poland and I had 3 bone marrow biopsies done, before the frontline treatment started, after (to assess MRD) and now before the second treatment is looming...
My haematologist said a BMB post chemo was unnecessary as the bloods etc showed a vast improvement. On the question of remission, I would ask "How is remission calculated". I completed FCR in July 2015 and in discusion with the haematologist remission was expected to be 4 to 5 years. I believe this was calculated from the blood figures, the total lack of CLL and national averages, but could be longer. I would assume a small amount of finger in the air for the calculation
Lets all hope a for a long and illness free remission.
So my doctor was insistent i have a BMB after 6 rounds of FCR. I was the one who really didn't want to go through one again. they are not fun at all. but i think Hanskloss has it right. while the blood work all looked perfect, you need to look into the BM to get CR and MRD-. My doc did the procedure 6 months after fcr completed and only then when no CLL cells were detected did she pronounce me in CR. i realize though that this may last a year, 5 years or maybe forever. But i think for me getting that pronouncement helps me just go through my day knowing for now that i beat this back and its one less thing to think about in my life at this time.
There is a Quality of Life fudge factor in 'remissions' as well... patients who are told they have a complete remission, likely do better going forward than those who are told they have a partial remission or stable disease...
There is no science on this in CLL but anecdotally over the years this has certainly been the case...
Remissions in CLL are so varied and individualized ... I would much rather think I have a complete remission, psycologically than a partial, even if this is not the case...
White lies like the placebo effect can have a very positive impact on patients lives...
I for one am one of those analytic minds that like to know the hard facts so I can plan my treatment options. And believe me when I say that I have to do it myself and be as educated as I can be...otherwise I would already fallen into the trap of accepting BR treatment as second line being only 47 yrs old..not a good option. So if I know what is going on exactly at least I have time to look for access to modern meds and plan because so far none of the treatments are available locally ..none (Ibrutinib, Idelalisib, Venetoclax)...
So it really depends on the patient whether they want the truth or sugar-coated story
Hi , Hanskloss it's 8 years this month since I've finished my treatment with Bendamustine. All my bloods are in range. except for one pallets dropped to 132(150-450) low.every think else is perfect.And I'm on a mission to raise them. My P.C doc says that I'm cured told him thats wishful thinking. But we know Better he just tells me stay positive I am a very healthy individual.? Bmt show no cll
Hoping that you can get the best treatment for your situation. Best wishes.
I'm curious. You say you are on a mission to raise your platelets. How? My platelets are falling and it is driving need for retreatment. First spotted the trend in the summer, 3.5 years after end of FCR at which time I had a good remission bur not MRD -ve.
Thank you all for you perspective on this issue..I really appreciate it and am now getting my head round not having a bmb... I just need to settle down and enjoy!
The way I am going to try to raise my platelets is stop taking ibuprofen,And Take antibiotics only for emergencies, and make drastic changes in my diet. I was a dairy milk drinker gallon every other day. Couple days ago I watched how cows are treated at the dairy farms and I was horrified. Now it's Almond milk. And it is Acetaminophen for pain, as I have had a multitude of broken bones. I'm sure that there many others here that can help us on how to raise our platelets. Best wishes to you and all.
Ibuprofen does interfere with our platelet level, but only for a short duration. However, if you were taking a lot of it daily for pain control, it could be the cause. If your diet is lacking folic acid, supplementing with this will help increase your platelet level.
However, sometimes an autoimmune reaction causes platelet levels to fall, and that is why some CLL patients need to be treated for it. Your specialist will test you and look for a trend downwards, as you probably know, and not just at one blood test.
My platelets are sitting at about 135 at the moment, but have been much lower at times. But I now only take ibuprofen when really necessary as acetaminophen doesn't have much effect for me. Also take folic acid supplementation, and try to limit any foods that may cause an immune response in my gut.
I hope you both can increase your platelet levels so as not to require treatment.
Hi Bethan49, I had a BMB in December 2012, two months after my last FCR, which came back as MRD positive. I had a blood test in June 2016, which was taken as part of the trial I am on and it came back as MRD negative! I think a BMB is the best way to see how successful the treatment is.
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