Chronic lymphocytic leukemia, or CLL, is a cancer of the blood and bone marrow. In this video, Dr. Tait Shanafelt, a Mayo Clinic hematologist, discusses how individualized assessment can help determine prognosis and the best management approach for each patient.
CLL Prognosis
youtube.com/watch?v=iZ6-u4T...
Also Supportive Care
Thanks Cllcanada, interesting that Dr Shanafelt mentioned treatment for symptoms, as here treatment seems to be based only on lympocyte count which was not mentioned. While I am aware that fortunately I am lucky to not require treatment yet, its certainly not symptom free, and I suspect others would say the same.
Raises a few flags for me, pneumonia jabs, risk assessment, vitamin D testing. Suspect that is beyond our NHS budget.
Nevertheless I found it interesting and informative.
Hope you are having a good day.
Bub
I too see that in UK much emphasis is on lymphocyte count but my GP prescribed Ad Cal vit D and. calcium and I got pneumonia jab so maybe I am lucky? Also I get any treatment I ask for if I have infection. And he is referring me to Peter Hillmen S he knows I research cll treatments. NHS is only as good as your G P a d consultant . Perhaps your experience is not as good as my own Bub? Take care
Thanks speckly, it was just having gleaned some info from the site I wondered whether the pnuemonia jab I had 2 years ago needed at any time to be repeated or topped up. I think I am looked after quite well but feel a certain responsibility rests on me to raise any concerns. Listening to the video I wondered why the impression I received was that the mayo clinic seemed to think that low count lympocyte patients did not have symptoms. Based on my own experience and I think quite a few others this is not the case. A few questions are circulating in my brain but sure they will be resolved. Now off to read Hairbear's response ,thought I'd pop an answer in before I become engossed.
Have a good day
Bub
Great videos even if there is a strong sales pitch. I didn't get that impression about treating based on numbers that you did Bub. I didn't even pick where numbers were mentioned other than in prognostic testing (which is obviously Mayo's big selling point). Do you recall where in which video you got that impression?
You are right about low count lymphocyte patients still being likely to have symptoms. This is definitely the case with SLL, where by definition, the Absolute Lymphocyte Count has to be less than 5. One corollary of SLL and CLL being the same disease is that treatment should be driven by symptoms, not numbers...
Hi Neil
That's right numbers were never mentioned which led to my assumption that initially only symptoms were taken into account by them. Had that from the first video, only remember symptoms being mentioned. Ergo, if they are basing treatment on the symptoms, taking lymphocytes into account is secondary.
As you say a marketing video. Prognostic testing became apparent in the second video and maybe video one over simplified their process.
Here, lymphocytes (which I was only told are immature white cells at diagnosis) seem to be the first and only indicator of CLL/SLL, symptoms being of minor importance. When I asked about the node which had triggered my WBC I was told don't worry about that nothing would be done about it.
Your last sentence...interesting. I am further enlightened after reading HAIRBEAR's post.
As ever thank you, Hairbear too.
Hi Bub
Pleased to be of help.
You are right many are diagnosed through blood tests that are routine or investigating other issues.It is the raised lymphocyte count that is noticed. However I was diagnosed because of enlarged lymph nodes during investigations into another issue.
Some of the best places to start foundation learning from a UK perspective are available in this link. healthunlocked.com/cllsuppo...
I found when diagnosed that after a good while things began to click for me and it was worth revisiting early reading . Then focussing on topics of interest relevant and at a level that suited me.
The above post has then been further expanded in the post healthunlocked.com/cllsuppo...
Throw out a question to the community and you will get a broad picture of how people are managed in the UK. I am not sure if there has been a survey asking how people were diagnosed,
The Poll healthunlocked.com/cllsuppo... provides many interesting comments
Maybe we should ask the community how people were diagnosed?
"How did you find out you had CLL?"
Nick
Hi Nick
That would be a good question for the community here, was tempted to ask it, but perhaps first I'll answer the question.
I had for some time been experiencing the symptoms with which many here are familiar. However I had been putting it down to just getting older. It was when I had given my blood donation, that my hot night spells became very sweaty night spells, I felt headachy and totally whacked. I put it down to having given the donation and needing to up my iron tablets for a few days.
It was only when I was feeling so hot that I put my hand, (which I had been runnung under the cold tap) on the nape of my neck to cool down that I felt a rather large lump (node). My visit to the GP and the follow up blood tests resulted in the CLL diagnosis.
One thing which annoyed me at the time, was that the GP said that when they did a blood test a number of years ago my lymphocyte count was higher than normal then. They put it down to an unidentified infection. I felt they should have asked me to do a follow up test perhaps 6 months later. Luckily it was only our everyday companion CLL (the thing) and not something more nasty so it would not have changed anything.
So far I'm a lucky one with slow increase in lymphocytes and now on annual W & W. However I'm not complacent as life has a way of throwing you a wee nasty shock. I want to be ready and to understand what I can. The CLLSA pack and Newsletter are most helpful, and I really appreciate all the information we get on this site.
Hope you (and girls) are well
Bub
Hi Bub
This is from the latest UK guidelines which clinicians managing CLL patients will be following in the UK although visibly they may appear to be only be concerned with what is happening to blood counts as they are the most visible indicators. My own also checks nodes and spleen etc with a quick hands on each time I visit. Guidelines are clear; lymphocyte doubling time (LDT) should not be used as a single parameter to define a treatment indication.
onlinelibrary.wiley.com/doi...
Table 5. Indications for treatment
Evidence of progressive marrow failure as manifested by the development of, or worsening of, anaemia and/or thrombocytopenia
Massive (i.e., at least 6 cm below the left costal margin) or progressive or symptomatic splenomegaly.
Massive nodes (i.e., at least 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.
Progressive lymphocytosis with an increase of more than 50% over a 2-month period or lymphocyte doubling time (LDT) of <6 months. In patients with initial blood lymphocyte counts <30 × 109/l, LDT should not be used as a single parameter to define a treatment indication.
Autoimmune anaemia and/or thrombocytopenia that is poorly responsive to corticosteroids or other standard therapy.
Constitutional symptoms, defined as any one or more of the following disease-related symptoms or signs
Unintentional weight loss of 10% or more within the previous 6 months;
Significant fatigue (i.e., Eastern Cooperative Oncology Group Performance Score 2 or worse; inability to work or perform usual activities);
Fever higher than 38·0°C for two or more weeks without other evidence of infection; or
Night sweats for more than 1 month without evidence of infection.
CLL patients upon learning about the supportive care strategies mentioned in the video can pursue them here in the UK on the NHS I have not been refused yet on cost. although some cytogenetic tests may not be available pretreatment to some trusts.
Vitamin D testing and supplimentation are supported by my NHS GP surgery however many may be unaware of the importance and potential benefits to cancer patients as well as bone and general health. My own GP surgery is pretty receptive to this concept and manages many patients vitamin D levels.
Of course our vaccination needs are extremely important, your GP may need to be aware. It was good to read that following making your concerns known about accidental use of the shingles vaccination your GP surgery is considering vaccinating all immune compromised with the annual flu ab on the same day to prevent prevent this.
The recent talk by Dr Duncombe at the CLLSA Southampton meeting covered vaccination requirements for CLL patients.
As well as the annual flu vaccination we are required to have our pneumonia vaccination brought up-to-date, every five years in CLL.
The standard vaccine is Pneumovax. CLL patients do not mount a good response to this if at all. We need to have the Prevenar/Prevnar vaccine.
Few GPs are requested for Pneumococcal conjugate vaccine "Prevnar" and there is likely to be ignorance or resistance.
Also Dr Duncombe recomends patients require vaccination with Menitorix (meningitis C and Hib vaccine) also
The thinking seems to be that it is better to vaccinate when you can mount some response. However the common practice may differ. (CLL patients must not be given live vaccines)
As CLL patients we soon learn to advocate for ourselves and often have to inform general medics of special recommendations and follow through with supporting literature or letters from our consultants.
Risk assessment should now be part of the diagnostic work up however more detailed cytogenetic testing pretreatment may still only be available in clinical trials when available in some trusts.
Nick
I just had Prevnar 13 and get a second jab Pneumovax 23 in 8 weeks, as per the new CDC recommendations ( see the Table of recommendations)
cdc.gov/mmwr/preview/mmwrht...
Thanks for this Chris, I will inquire how this affects us in the UK. The current CLL management guidelines were also only recently updated too.
Immunization
There are no randomized studies showing that vaccination of any type alters infection rates or outcomes from acquired infections in CLL. Antibody response rates to pneumococcal and influenza vaccines are lower in patients with CLL than in healthy controls (Sinisalo et al, 2003, 2007; Pollyea et al, 2010).
However, vaccination is safe and some patients respond particularly if vaccinated early in the disease and if conjugate vaccines, particularly to Streptococcus pneumoniae (Prevenar) and Haemophilus influenzae B (Hib) are used (Hartkamp et al, 2001; Sinisalo et al, 2011).
Seasonal flu vaccination should also be given and for H1N1, two doses are advised (De Lavallade et al, 2011).
The timing of vaccination in relation to treatments such as anti-CD20 antibody therapy, which deplete normal B cells, is also important. Failure to achieve protective antibody levels following seasonal and HINI influenza vaccination have been noted in patients with CLL and lymphomas vaccinated 2 weeks prior to, during or up to 6 months post-rituximab. (Pollyea et al, 2010; Yri et al, 2011).
Advice on the use of specific vaccines is available at dh.gov.uk/en/Publicationsan....
Recommendations Grade B2
Vaccination against Streptococcus pneumoniae (using a conjugate vaccine) and Haemophilus influenzae type B is recommended at diagnosis.
Patients who respond to vaccination and subsequently develop recurrent bacterial infections should be revaccinated if S. pneumoniae and Hib antibody levels have fallen.
Annual vaccination against seasonal influenza and novel strains is recommended.
Live vaccines such as polio, H. zoster and yellow fever should be avoided.
Vaccinations should be avoided, if possible, 2 weeks prior to, during or up to 6 months after chemo-immunotherapy.
onlinelibrary.wiley.com/doi...
The recommendation for two shots different pneumonia was made by the ACIP, and we know how they messed up on Zostavax and CLL a few years ago.
Since pneumonia is the leading cause of death of many CLL patients, it might be a good idea to discuss this with our doctors.
Simply two vaccines covers more strains of pneumococcal , better coverage perhaps, but how many antibodies CLL patients make is unknown.
Mind you, fungal or viral pneumonia walks in the door, vaccines won't matter 
Huge thanks HAIRBEAR and you too Cllcanada.
I really appreciate that you have taken the time to put these posts together. Hey I understand it all, 
that is, I think a first, I shall be printing these out to make notes and references to discuss with my GP. To a degree I sympathise with them as how on earth do they stay on top of the part they need to play in all the specialist fields.
So glad to have joined this site, Well done folks !
Bub
CLL disease burden and neupogen
Treatment Tradeoffs. Very good Video. Debate: Is it appropriate to treat patients with CLL earlier in the era of novel agents? Dr. Furman Skin Cancer and CLL a Mayo community study...
ASH 2017: Dr. Richard Furman on the importance of MCL-1 in CLL (chronic lymphocytic leukemia)
A World Expert Looks Back on His CLL Career
