Hi I'm new here. Diagnosed Nov 2014 at age 47. I was starting a round the world trip with my wife in our yacht from Australia. We pondered the diagnosis for a year while we hung out in Thailand and decided that because I was 17p it would be wise to postpone our 10 year trip and instead return home - we didn't want to get part way around and then I needed treatment. (Yes it was a tough decision and I think if not for 17p we would have continued and just tried to speed things up a little). Anyway we are settled with our decision, only it takes time to sail back to Australia...we are currently in Bali. Due to being overseas I haven't been having regular physical checkups. The Doctors I have been seeing arrange the blood tests, look a little nervous and then send me packing. I feel fine and don't think I have anything too swollen in the lymph node dept. When diagnosed my Doc pointed out small lumps in my neck which seem to be about the same. Every three months I have blood tests done and send the results to the Doc in Australia - he is a haematologist I was referred to. My results have remained fairly stable WBC around 40, Platelets usually sit around 167. ALC 30-39. My wife and I have done a lot of internet research and often check healthunlocked. We feel like we have a bit of an understanding of what it's about, but are keen to discuss in more details with experts back home. The reason for this posting today is that my results in May showed a jump in WBC 60 and Platelets 113, ALC 55, Doc said redo in 8 weeks which I did WBC 79, Platelets 129 and ALC 69.5. He said to redo again in another 8 weeks which I will. He also said "Usual indication to start treatment is doubling of WCC in 6 months’ time. Also you need to correlate with clinical condition and symptoms." I know we shouldn't get hung up on numbers, but I thought if any number to watch it was the doubling time of ALC not WBC. Can anyone tell me what might be going on? I have also emailed him and will do the tests again in 2 months. I still feel great, no illnesses or infections. I won't be back in Australia until Nov/Dec this year (due to weather). If it's wise to see a Doc here in Bali - what sort of things should I get them to check? I'm sick of going to Docs and they just look at me - it's pointless going. I feel fine and am not concerned - should I be? Thanks in advance for any advice or suggestions someone from the community can make.
Doc says it's usual to start treatment with do... - CLL Support
Doc says it's usual to start treatment with doubling of WCC
Stop panicking. If your disease is progressing it will take months and by then you will be back home. You are being monitored every 2 months that is good and normal as the adverse blood counts increase. It took a period of 6 months/ 3 haematology visits before the decision for my treatment happened even though lympocycte count was stable at 265 with no physical symptoms except falling Hb. Haematology results bounce about but your platelets seem to be low so time to take care. Try to avoid the rough and tumble to get major cuts and bruises. Also in the lovely part of the world you are visiting avoid "street food". I didn't realise how tired I was until the start of treatment and started to get my life back.
Thanks Devonrr. I'm actually not panicking as I too think it'll take time to progress, just confused as to the mention of doubling of WCC when I thought it was doubling of ALC as a trigger to pay closer attention. We have to figure most things out ourselves since we aren't getting Doc support - I haven't had a proper consult since March 2015, and until May 2016 the last time I heard from the Doc about my results was June 2015, and I'd been sending questions in with each lot of results. Thankgoodness for sites like this, cllsociety and clltopics (these are the 3 I've narrowed it down to). I see what you mean about avoiding rough and tumble - my cuts take forever to heal these days (I used to be a "freaky fast healer" according to my wife). I've only recently agreed with my wife that okay yes maybe I am a little more tired and overheating - it's encouraging to hear that after treatment you noticed improvement. Don't know that I can avoid street food - it's too tasty but we are careful. Thanks so much for the tips.
glad you are feeling fine and that you are enjoying your trip!
You will have seen on here that many have mulch higher WBC than yours.
Whilst doubling time is a general indication that the condition is progressing it is a simple indication that care should be taken and in normal circumstances a medic would keep a much higher level of watch and wait because of this.
As you say other indicators come into play at this stage such as swollen spleen,liver function, nodal activity,night sweats and your general health alongside comorbidities. A doubling of white blood count,therefore, would not on its own necessarily mean starting treatment.
Of course your med team have the problem of long range care with reliance on you and maybe GP's in other parts of the world so they have a difficult job and would err on the side of caution I would guess?
You really need to discuss your situation fully with your heamotologist either by phone or via email. I don't think any of us laymen could give you any advice other than opinion based upon our own experience.in the main that would be in respect of close range cooperation with our doctors.
Cll is a very individual journey you could go on for months or years before needing treatment on the other hand some relapse into needing treatment very quickly once the condition deteriorates. I would clarify with your heamotologist exactly what their comment about treatment was aimed at.
Clarify their concerns alongside your objectives whilst you feel well and are enjoying your adventure.
Once you have all the info at your fingertips you and only you can weigh up the risks based upon facts and decide what you should do.
Here's wishing you good luck.
Geoff
Geoff thanks for taking the time to reply. Yes my results spiked once before then came back down to "normal" for me, so I'm hoping this will be what happens again. I need at least until Feb 2017 to get my boat back to a safe haven in Oz, since I have no other symptoms I'm feeling optimistic about it. I'm thinking I will try to get an apt with a Doc when I go back to Oz in a few weeks just for a physical checkup as I don't know if anything's swollen or not - I wonder if we would know ie see it or feel it??? Have asked Ozzie Doc if he thinks I should get a check up and asked what should be checked in email (so I could tell the Doc here what to check) but he didn't mention it in his reply so I guess not. Good luck to you too.
Adding to the already good advice you've received, I'd take particular note of the second part of your doctor's advice - "Usual indication to start treatment is doubling of WCC in 6 months’ time. Also you need to correlate with clinical condition and symptoms." You note your platelets are fine and say you 'still feel great, no illnesses or infections' and that I believe is what your doctor was meaning in his comment "you need to correlate with clinical condition and symptoms". To put that another way, no CLL specialist would start you on treatment if your fast climbing lymphocyte count was the only concern. Also, given the considerably lower incidence of CLL where you are currently sailing, you will find it hard to locate a doctor familiar with the effects of CLL on your health.
Regarding the difference between ALC and white cell count (WCC) and what should be measured to determine doubling time, why measure WCC when we have a more accurate indicator of your CLL progression in your blood - namely the lymphocyte count? Even that's not a true measure of your CLL changes, as your lymphocyte count contains both T and B lymphocytes and if you didn't have CLL, only around 15% of your lymphocytes would be B-Lymphocytes. Even with CLL, we still have healthy B-lymphocytes and we know from observation that lymphocyte counts change considerably with infections. That (and the fact that we can have lymphocyte counts with CLL five times yours without ill effect) is why (per internationally recognised criteria) doubling time is only considered when ALC climbs above 30. In your case, your ALC has climbed from between 30 and 39 up to 69.5, which is about double, but it may yet stabilise or slow, giving you more time to safely enjoy your sailing holiday.
Your white cell differential results clearly indicate why it is important to consider ALC not the total WBC: In May, your non lymphocyte white cells were 5 (WBC - ALC = 60 - 55) and this month 9.5 (79 - 69.5), so those actually nearly doubled (as did your ALC). Those non-lymphocytes could as easily gone the other way, giving a misleading picture of your CLL progression. If your ALC continues to climb, the error will reduce, but why accept an error when there's no need? Standard blood testing includes the lymphocyte count at no extra cost. Performing an accurate test of T and B lymphocytes requires an additional test, but given a rapid doubling time is the least important of the reasons to start treatment, a CLL specialist isn't going to be too particular about measuring it to that degree of accuracy, with some just using the WCC as you've found.
Neil
Thanks for your reply Aussie Neil. I think you are right about the Docs not having much exposure to cancer/leukaemia out here. I went to a Haematologist early last year in Penang, Malaysia for a second opinion, and to help us in our decision to continue on or turn back to Oz - but he said I should talk to the Ozzie Doc as we handle things differently over there anyway, so he wasn't much help. At that stage I wasn't hearing anything back from the Aussie Doc (turns out he wasn't receiving my test results and questions). We were floundering in the dark for a while there, then came across a few websites that helped answer most questions. Basically sounds like I will probably have years (just maybe not quite enough to get all the way around the world before needing treatment), but I know everyone is different. Your last 2 paragraphs were REALLY helpful and what I needed to read - thankyou very much, have read 3 times and printed out. My lymphocytes used to sit around 80% it's now 90% so not much movement there. I have been reading posts in this community for some time now and feel comfortable coming here for some tips due to the vast knowledge base and of course first hand experience. Yes i hope that my results will stabilise or slow, I need to get my boat back to a safe anchorage before thinking about treatment. Thanks for all your efforts. PS So you are actually Aussie living in Australia?
Glad to hear my reply helped. One more tip; IGNORE ALL the percentages against your different white cell types as they are only relevant to people without leukaemia. (And be warned that doctors and nurses rarely appreciate this.) When you have leukaemia, what is important is whether you have enough non-lymphocyte white cells (i.e. actual counted cells per blood volume sample) to fight off infections, primarily your neutrophils (of which you most likely have very healthy levels, given your non-lymphocyte counts are good.) Incidentally, if my ALC was the same as yours, the percentage of lymphocytes in my WBC count would be 99.1%, but what really matters is my absolute neutrophil count.
Answering your question to Geoff, who is hopefully asleep, if you visit a doctor regarding your leukaemia, they should do the usual physical examination - some perhaps unnecessary if you are feeling well (weight, pulse, respiration, lung and heart health via stethoscope, signs of infection by checking your throat), plus they should check if your spleen and liver appear to be enlarged and for any enlarged nodes in your neck, arm pits, groin and abdomen. Naturally, unless they have seen you before, they won't know what change there has been, if any...
Neil
PS Yes to both your PS questions, which is why I know that when the Leukaemia Foundation investigated a few years ago how often GPs in Australia came across lymphoma patients in their entire career, they found that the average was about 5 to 6 cases. CLL is just one of the Non-Hodgkin Lymphomas...
Okay so I don't see % of WCC on my results so that's easily ignored and I won't even ask you to explain why Docs don't like it being ignored. My lymphocytes are 88% so that does sound good right and my absolute neuts is 6.3% which falls within the range on the spreadsheet I got off clltopics. So yes you are right - all good. I didn't have quite that good understanding of the neuts importance so thankyou again. Thanks for the info on what the Doc should check - that'll come in handy if I see one here, back in Oz I think they will know what to check. I understand what you say about if they haven't checked me they won't know if there's been a change - but I guess what I am thinking is that they can tell me if something's really standing out. I don't know if I would detect anything myself. Thanks so much - I know you aren't a Doc (well I don't think so) but you have told me more today than I have learnt from a Doc in almost 2 years since diagnosis - largely due to the fact that I can't get to Docs who know about this, I'm sure I'll get better support when I return to Oz. BTW the Doc I sent my results to told me to get some other tests done - kidney and liver function including LDH which were all fine. Cheers.
Forget ALL percentages on your blood test report. Go only by absolutes. If two countries go to war, it doesn't matter what percentage of their respective countries are in their armed forces, just who has the largest army and how effective they are at fighting. (White cells are our defenders against bacteria, fungal and viral infections. With CLL, we have too many troops that failed basic training and can't recognise the enemy. The army can't discharge them and they still need feeding and housing, but still get up to mischief.)
I'm not medically trained, but I can confirm that having 'all fine results on kidney and liver function are good (you'll need these healthy if you need treatment) and a normal LDH is excellent (LDH can provide a useful measure of CLL activity).
Neil
love your analogy
Do you know what your neutrophil count is doing? I'm 17p and was caught out by a rolling temperature of 38 degrees and neutropenia that meant a holiday in Melbourne (from NZ) was entirely spent in the hospital as the staff tried to get a lung infection under control for nearly a week. If your neutrophils are fine that's one thing you don't have to worry about. I admire your buccaneering spirit. All the best.
Neutrophil used to sit around 5, it's now at 8 so not much movement there. What a bummer of a holiday, hope you managed some time to enjoy your stay in Oz. NZ for a ski trip sounds good when we get back - toured the south island in a van and absolutely loved it. Beautiful country. Thanks MrMidnight, all the best to you too.
Some, on various sites, have reported a jump in their ALC, which then stabilized. Chris has often said that a doubling of the ALC is a reason to start treatment discussions, but it does not necessarily mean it's time to start treatment. as long as you feel fine and your numbers aren't doing anything extreme you should be OK following your doctor's advice about getting labs done. I'm sure he will let you know if you are approaching a danger zone. Of course, let him know if you develop symptoms of concern.
Hi pkenn. thanks for this, yes hopefully things will settle back down. I do feel fine and think I will have to feel some symptoms before treatment is required.
All I can tell you is my experience (also 17p deleted). I went from wbc of 19 to 97 in 7 months (diagnosis to first day of treatment numbers), and doctors telling me worst case scenario from time to treatment is 2 years to them telling me at month 4 (60 wbc) it's time for treatment (I hobbled along and waited 3 months to participate in a clinical trial and I was hospitalized with 5.5 hemoglobin 2 weeks before the trial started - fortunately, they did a transfusion and I got back to 10.2 hemoglobin). I guess what I'm saying is the downward spiral can go from linear to exponential. Maybe this isn't your case, but they also told me they don't wait as long with 17p patients to treat either, which is why they were saying it's time at 60.
Maybe this won't be your case (hope it isn't), but it was mine, and I'm the same age (48) but I wish someone had told me to be on the lookout that maybe I didn't have as much time as I thought. I would have done some things differently. PS I'm doing really well now.
So you managed to get on the trial? Glad to hear you are doing well now. Can I ask which drug and which country? I had thought that any downward spiral would be slow (and most probably usually is) but it's interesting to note that it can go quickly, so I do appreciate the warning - I have my boat to deal with first, so I am looking at other options so I have plan A B and C just in case things change healthwise. I have read repeatedly that they don't wait as long for 17 deletion as well. I hope that when it comes time for treatment I can get on a trial - I don't want FCR as first line treatment (esp with 17p).
From what I have read, 17p deleted patients don't generally respond to FCR, so yes, try to get on a trial or alternative treatment. I think it spins out of control because the deal with 17p deletions is TP53 deletions which eliminates the ability for our bodies to kill cancer cells and it stands to reason the doubling factor would be a lot faster and accelerate in that situation. I'm in the US at Ohio State and it's obnutuzumab, ibrutinib and venetoclax. I'm on the first two now, and the second starts next week. Prior to the trial, my local CLL dr at Penn recommended ibrutinib, but while I am not expert, notwithstanding the toxicity issues, seems like the most promising therapies are combinations of drugs. Good luck dealing with your boat. Keep us posted.
I am on a rather steep learning curve myself and are certainly no expert, but I would be starting to think about treatment options. FCR does not appear to be a good option for 17 del but there are lots of new options becoming available. The trick is to get access to the new options without going through FCR first. Ibrutinib and related drugs as well as Venetoclax (ABT 199) appear promising. Our Australian PBS system is not good at keeping up with the rapid pace of development of these new options so you may need to consider a trial. Took me just over 2 months of appointments, emails, phone calls and reminders to get onto my trial after being advised that I needed treatment. In that time my ALC went from 80 to 100. Perhaps we could catch up if you call into Freo?
Hi Jorum thanks for taking the time to reply. From my research I too believe that FCR is not a good first line option with all the other options available. Ibrutinib is of great interest, and without it on our PBS I sure hope to get on a trial when I'm at that stage. Thankyou for the info - 2 months to get on the trial as an indicator. I would really like to chat when in Perth if I can get away from my family. I haven't yet told them and wasn't planning to just yet (planned to tell them before I get really sick, but not too early - if these numbers don't stabilise before I leave then I guess this trip will be the time). So if I can get away to Freo can I just contact you via this site beforehand to try and tee something up?
Thankyou all for taking the time to respond - I will reply to each of you. I think my question got a little lost in all my background info (ie trying to explain why I've not been able to see a Doc since March 2015, and why I can't really get to one who's in the know out here). I was puzzled as to why the Doc mentioned "doubling of WCC" and not "doubling of ALC" if he was to mention doubling of anything. I had only ever read of doubling of ALC as an indicator and a google search didn't yield anything. I'm still waiting to hear back from him - (I didn't hear back from him June2015-April2016 as the staff didn't pass on my results - so I recently discovered) - he's now given me his direct email address. Thanks AussieNeil - at the end you do confirm for me that WCC is what some Docs look at - I was starting to wonder if he knew what he was talking about. Obviously I haven't had a chance to get to know him yet. Cheers All
I think Neil is saying to monitor ALC (see his last paragraph). It doesn't hurt to watch both.
Yes thanks for that. I am gathering he's leaning more toward watching the ALC (as I have read repeatedly on various sites), but he confirms some Docs do in fact watch the doubling of WCC "with some just using the WCC as you've found" - something I couldn't find anywhere. I have got that excel spreadsheet from clltopics and check the ALC with it. It's all a bit confusing - I will be glad when I can sit face to face with a specialist and work out a few more things. In the meantime I try not to think about it and just enjoy life - something the Doc told me on my second, and last, visit March 2015. cheers
When to treat recommendations for CLL specify ALC, not WCC. Using the WBC is akin to using wind speed to see how fast your yacht is moving, rather than your true speed with respect to landmarks/ocean floor.
Use this updated and more comprehensive spreadsheet version derived from Chaya's original, which has some bugs showing plots, etc
cllsupport.org.uk/cll-sll/s...
Neil
Umm so does this mean he's not a very good doc to say that or can you think of another reason - ie you said some do say that? Opinions welcome. I too have only read about ALC doubling and never about WCC doubling as an indicator. I know in his email he's not saying to start treatment yet, unless there are other indications - but isn't it odd that he says doubling of WCC? He's also not really answered most my questions when he has replied - I'm a little stuck out here as I can't shop around until I get back, and I can't just up and leave my boat here and go back and shop around for answers. I am still waiting to hear back from him as to what he means, and I asked why doubling of WCC and not doubling of ALC?
Thanks so much for any thoughts and this new spreadsheet, I shall download and transfer my data across. Cheers
It could be that your doc is attempting to use words familiar to his patients. (Most of us have heard of white blood cells. Patients knowing about lymphocytes and neutrophils would be much less common). Lymphocytes are one white cell after all and what we end up having most of as our CLL progresses. I would be far more concerned if a CLL specialist was using percentages rather than absolute counts...
The new spreadsheet is supported by myself and other members of this community.
Neil
That makes sense - he wouldn't know I have been using the spreadsheet to calc ALC and nor would he know I have done a little research since seeing him and even know what it means. I woke up this morning and wondered if that what was why he was referring to it that way. Phew!
Got your message on absolute counts and not %. Cheers.
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