I just had my first bone marrow biopsy yesterday. I have been dealing with MBL / CLL over the last decade and my count is around 50. I do not really have any symptoms except swollen lymph nodes in the neck and groin. I am 52 years old, quite fit (exercise hard 5 times a week) and work full time.
I have read multi posts on this site.
I assume the purpose of the biopsy to find my genetic code for treatment. I have been told I will be getting a 'first line' non-chemo treatment if it is OK. Is that why they treat earlier because it is not chemo? This part confuses me. I thought you waited as long as possible.
I have pretty much been on 'watch and wait for 10 years and put this to the back of my mind, so I did not stress myself out.
It feels like I am going onto the next stage of the journey and the jitters are starting to kick in.
Should I wait for the results in a month and not stress?
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Billy_Oz
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First off relax if you aren't seeing your specialist for a month. Treatment for acute leukaemias is arranged in days!
With the scant detail you've provided, it's hard to make any definite suggestions about what's happened with your CLL. Given your lymphocytes were 24, 2 years ago, that works out at a doubling time of 2 years, way slower than the less than 6 month trigger for investigating if treatment is warranted. I presume your platelet and haemoglobin counts are fine, so I suspect you have large nodes triggering the need for treatment soon. Currently the treatment guidelines don't differentiate between chemo and non-chemo treatments when it comes to triggers for starting treatment.
In Australia, you currently only qualify for non-chemo treatments if you have 17p del, or mutated TP53. Whether you have those markers can certainly be determined by a bone marrow biopsy (BMB), but also by a much cheaper blood test, though a BMB can be called for as part of the inclusion in a clinical trial, which will gain you access to a non-chemo treatment without those hard to treat by chemo markers.
10 years watch and wait is a good indicator that you'll do well/have a long remission from your treatment.
Thank you, Neil. Yes, all other bloods - platelet and hemoglobin counts are fine. They are testing every 3 months along with Kidney, Liver etc which are also fine.
Hi Neil, I just reviewed my bloods results online and my WBC was 50 and lymphocytes were 45. I don't really understand the bone marrow results but will await the specialist. This is the first time in 10 years it has gone backwards. Can CLL go to sleep ?
You said in your post that your white count was 50, so what was it previously? More particularly, what was your lymphocyte count previously?
CLL most definitely can 'go to sleep'. There are a number of lymphocyte growth patterns; exponential growth, growth which can flatten and even growth which can reverse. If you google "spontaneous remission CLL", you'll find at least 30 case studies of people with CLL who have seen their CLL regress; it happens about 1% of the time.
The WBC count was just over 50 last test. That is all I was told. I did not have results in any format.
I did experiment with 6 weeks of HIIT training before the last test. I do work an office job and while I walked / exercised / weights previously I did not really raise a heavy sweat after some introspection. I read a Medical Paper - Exercise Training Alleviates Hypoxia-induced Mitochondrial Dysfunction in the Lymphocytes of Sedentary Males.
30 mins a day/ 5 days a week. Treadmill. 3 mins hard walk / 3 minutes easy walk.
If anything, I fell much fitter and have lost some weight. Not sure if that helped.
On the issue on getting results via the Portal for the first time. I rang the Alfred about my Bone Marrow Results because the results looked out of range (low) on a few things (but the Nurse co-ordinater said the specialist would have called me if there was a serious problem.
The two measurements are different; one is reporting your total white blood cell count and lymphocyte count in your blood, the other how much of your bone marrow is infiltrated by CLL. It's not unusual to have bone marrow infiltration percentages of over 90% at the start of treatment.
Neil, my family is so grateful to you. I feel semi prepared. I am fast approaching acceptance of my CLL after the long 'watch & wait' period. So much information to sort through. Explains why some of the marrow counts are low with the only exception the CLL . I have been reading up on Con Tam at the Alfred.
You'll find that your haemoglobin and red blood cells, your platelets or your neutrophil counts will increasingly trend down as your CLL bone marrow infiltration increases. Eventually, if you leave it long enough/too long, all your blood cell counts can be falling other than your lymphocyte count. That's when you are at increasing risk of needing blood transfusions.
You are in very good hands if you can see Dr Tam, but irrespective, you are well spoiled for choice in Melbourne compared to other cities in Australia, when it comes to haematologists actively involved in international research. While we do have CLL researchers spread throughout Australia, I would think clinical trial access opportunities are higher in Victoria. If you have a choice of specialists, check if they have been authors of CLL specific papers, their area of expertise and their frequency of contribution. There are haematologists who are still good at treating CLL, because they keep across new research. If they are assessing you for access to the latest non-chemo options as your specialist is doing, and they can clearly explain when you need to start treatment and why per the iwCLL document, then you are in good hands.
Interesting Neil, the iwCLL document. Thank you for that.
Do you think this is a good guide for discussing treatment?
From: Rick Furman
Date: Sun, 05 Jul 2020 16:42:28 EDT
Active is defined by the traditional measures:
1.Hemoglobin < 11 - mine is 134 (I gather 13.4)
2.Platelets < 100,000 - mine are 166 (I gather 166,000)
3.Symptomatic LAD or splenomegaly - spleen is marginally enlarged.
4.B symptoms ?
5.ALC doubling in less than six months (roughly 38 to 45 in 6 months - so not an issue)
Taking into account, I have no fatigue, night sweats, loss of weight, work full time and very active.
Not sure if the 80% lymphocytes on the Bone Marrow is getting close to 90 quickly or slowly ?
This looks a good guide? Unless I have 17p ? Does 17p indicate the disease is more aggressive and worthy of starting treatment early?
"Some high-risk features (deletion 17p) predicts for patients doing less well with ibrutinib. Our belief is that earlier treatment might help prevent the development of the aggressive cells that lead to the aggressive behavior."
From what I read online, the treatments have advanced incredibly recently which may be changing the goalposts.
Yes those tips from Dr Furman are a good guide and yes, you've correctly made the reading conversions to those commonly reported most elsewhere. On the basis of what you have shared, you can probably expect to stay in watch and wait a while longer, though as you note, there has been some experimental work, including clinical trials, trying to determine if some of us could benefit from starting treatment earlier, based on commonly measured markers. You should be able to find out if you are 17p del by asking for a FISH test if one hasn't already been done. 17p del means you won't benefit from an older chemo treatment; it's more the case that complex karyotype drives a faster time to first treatment.
Typically when we are diagnosed with CLL, we have at least 25% bone marrow involvement. You might not need treatment for another 5 years or so yet.
Generally today the decision to treat is separate from what to treat with. So I can see why you’re wondering what is going on.
I can suggest three things:
1) Lock your post to “CLL Community” so your post is limited to this community;
2) After that, if you post more information about your blood result history and if you’re seeing a CLL specialist; and
3) Sometimes during doctor appointments your doctor says something that startles you and you forget to ask questions that come to you later. In this case, it is very reasonable to ask “why are you recommending I start treatment now?” Especially as you reported you are feeling OK and don’t have symptoms that bother you much.
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If your nodes are very large they could be putting pressure on major blood vessels or other organs which might cause problems and that would be a trigger for treatment. Have you had a CT scan recently?
Neil is correct, it is for a 'non-chemo' first line clinical trial.
Yes, I have had multiple CT and PET scans over the years because I also had Synovial Sarcoma in my hand around 6 years ago. It can spread to the chest. Thankfully, I was given the all clear a year ago.
The PET and CT picked up my lymph nodes were slowly getting enlarged in my groin along with the WBC during these 5 years of survelliance for possible spread of Sarcoma.
I have not been told that nodes are causing issues with organs.
My hematologist said he likes to start treating soon. He likes to treat around WBC 100 with his patients. The letter to my GP simply said "I want to bring the WBC count down".
Just an FYI - My oncologist who treated my sacroma, advised CLL is a chronic disease you can manage. Go and enjoy your life and put the sarcoma behind you.
It would be unusual for a doctor to 'treat the lymph count' in isolation and many members here have had counts of greater than 350, myself included. Starting treatment is a big decision and one that needs careful consideration. I'm not saying your doctor is not careful just that perhaps he hasn't explained the decision fully.
Thought I'd share my personal experience with CLL so you have another perspective on what your facing. I found it bewildering and frightening at first.
I was diagnosed with CLL in my late 50s. I've always led a very active and healthy life and so my diagnosis came as a huge shock to me. Never been sick before. I now realise that I'd had CLL symptoms for many years before being diagnosed.
I had the intravenous FCR treatment (Google FCR if interested in the detail) for six months in 2017. This treatment had very unpleasant, short-term side effects but did give me 5 years of full remission. During my remission I pursued all my usual activities to the fullest (extreme bushwalking, camping, long distance motorcycle touring etc). My CLL did not stop me doing anything during remission. In fact the last 5 or so years have been amongst the best of my life. Perhaps because I concentrated on important stuff I wanted to do.
During the last six months of 2022 my lymph nodes swelled significantly and I have now started treatment with Acalabrutinib (one of the Brutinibs mentioned by Neil above). It is one of two oral CLL treatment options (the other being being Venetoclax) on offer. Some obvious differences with "normal" chemotherapy include that they are taken orally (vs intravenous), have far fewer side effects (compared with FCR) and are taken for a longer time period (compared with FCR).
My experience with Acalabrutinib (brand name Calquence) has been very good so far. After just one week my swollen lymph glands under my arms have noticeably reduced in size. I've have almost no detectable side effects apart from mild, occasional headaches that are easily treated with caffeine (drink coffee!). No nausea whatsoever. I actually feel fine and am doing everything I normally do including exercise. This is in stark contrast to my first treatment experience from day 1 of FCR.
I cannot, of course, predict your treatment outcomes. And I don't have the 17p deletion nor the TP53 mutation. I can, however, say that my experience with Acalabrutinib has been incredibly good so far. No debilitating side effects and unbelievably early clinical response (lymph gland swelling reduction). I could comfortably work fulltime whilst taking Acalabrutinib. As it happens I'm now retired so that's a bit academic!
I have no experience with Venetoclax but have read many positive reports.
I wish you all the best. Happy to respond to any queries you may have about my CLL experience.
Best wishes
Andrew
PS Perhaps you've read in other posts that exercise is an excellent way to boost your body's capacity to deal with CLL. So your level of fitness and exercise regime gives you a big advantage relative to unfit, unhealthy CLL patients. Better outcomes are more likely for you.
By the way, I had two bone marrow biopsies during initial diagnosis and treatment. Seems to part of the routine initial diagnosis to assess chromosomal damage and I presume other issues.
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