New hemoncology blog looks interesting! - CLL Support

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New hemoncology blog looks interesting!

CLL1 profile image
CLL1
10 Replies

This new hemoncology blog looks quite interesting for CLL and ALL background. Only a few posts so far but could develop into an interesting educational resource with more content.

cancerandi.com

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AussieNeil profile image
AussieNeilPartnerAdministrator

Looks good and I admire the author for making the effort to debunk some common myths, but the author needs some peer review assistance:

1) I've never heard of SLL being described as "(- this is actually an early stage CLL)". Though SLL may sometimes 'develop' into CLL, SLL patients are also likely to need treatment while they still have 'SLL'.

2) T-cells originate in the bone marrow, not the thymus, where they mature, hence the 'T'.

3) B-cells are so called because they were first discovered in the bursa organ of a bird, hence 'B', not because they are bone marrow derived (as both B and T cells are in humans, since we don't have a bursa).

4) The author is overgeneralising in saying "White blood cells live for only a few days before dying and being replaced with new cells." That's true of our most common white blood cells - our neutrophils, but lymphocytes - which make up a significant proportion of our white blood cell count, last significantly longer, with the memory forms lasting years.

I love the debunking blog Your Government does not have the cure to cancer and pharmaceutical companies are not ‘out to get you’.

Neil

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toAussieNeil

I agree Neil, the author needs a medical review... the errors you cited are pretty bad, frankly... considering the author states ...Well, I’ve worked in the field of oncology for many years...

Bears watching perhaps...

~chris

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toCllcanada

I've provided my feedback to the author and notice that he had already corrected the SLL/CLL error - presumably from someone else's feedback. Good illustrations to the blog, too, so I hope the author's future work does become worth referencing.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toAussieNeil

I've received an appreciative reply from the author, who acknowledges rushing his early blogs to get something out. Encouragingly, he said "What I definitely strive for is accuracy and confidence in my posts so will put in the extra effort in future posts.

As a bit of my background, I am not a medical doctor, but my experience lies in drug development and the pharmaceutical industry, where I eventually intend to take this blog, with a focus in hem-oncology."

Neil

AussieNeil profile image
AussieNeilPartnerAdministrator

My understanding was that B and T cells are indistinguishable under an optical microscope without special staining which attaches to the differing CD markers on the respective cells...

gardening-girl profile image
gardening-girl in reply toAussieNeil

Neil, I deleted my previous post. It was way too negative to post! Sorry. I think that you are correct about not being able to distinguishing between B & T cells from a typical blood draw using optical/light microscopy. I may be wrong (in need of medical review!), but the cells in the 'Cancer and I' blog don't look like optical/light microscopy pictures. To me the cells look more like activated T-cells using something like confocal microscopy.

PlanetaryKim profile image
PlanetaryKim

Also, sentences like this are worrisome: "Medicine nowadays is so advanced that some cancers, including CLL and ALL can be effectively cured." I don't think you would find any CLL specialists agreeing with the statement that CLL "can be effectively cured."

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toPlanetaryKim

Actually, he's quite right about some CLL patients being effectively cured! Check out the Kaplan Meier curves B, C and D in Figure 1 of this Jan 2016 paper by M D Anderson CLL specialists on the long term survival of FCR patients with the good prognostic factor of mutated IGHV CLL (IGHV-M) genes: ncbi.nlm.nih.gov/pmc/articl...

Selectively quoting from the paper (with my emphasis): "We reviewed the original 300 patient phase 2 FCR study to identify long-term disease-free survivors. Minimal residual disease (MRD) was assessed posttreatment by a polymerase chain reaction-based ligase chain reaction assay (sensitivity 0.01%). At the median follow-up of 12.8 years, PFS was 30.9%"

and

"In our series, patients with IGHV-M had a highly favorable outcome following primary therapy with FCR, with a plateau on the PFS curve, and persistent MRD-negativity in all long-term survivors who were tested."

and "Our data confirm the importance of achieving MRD-negativity after CIT. In particular, patients with IGHV-M who achieved MRD-negativity had excellent outcomes, with ∼80% remaining in ongoing remission on extended follow-up."

and

"The existence of PFS plateaus in IGHV-M patients treated with FCR across multiple independent cohorts, as well as persistent MRD-negativity in all tested patients in our series, raises the tantalizing prospect that many of these patients may be cured of their CLL."

This is why many CLL specialists still recommend FCR to patients who have the right prognostic factors (and we can tweak that selection criteria as we gain more data), giving these select patients a high probability of being effectively cured. From curve C in Figure 1, if you only gave FCR to patients with B2M results of under twice the upper normal limit, you further increase those odds, with the paper showing 38 of the 60 (63%) patients with those characteristics had progression free survival of 15 years, with only a couple of patients progressing in the previous 8 years! It remains to be seen whether this ~30% figure holds up when you look at those treated outside of FCR trials, but you can appreciate how exciting this finding is. Just a 6 month course of FCR, then the majority of these patients can pretty well forget about their CLL, particularly if they make it to 7 years with no signs of progression!

Neil

PlanetaryKim profile image
PlanetaryKim in reply toAussieNeil

Thanks for clarification Neil, and the article link. I have had it drilled into me that "there is no cure (yet) for CLL; we can manage it but not cure it." Yet I have asked myself all along: at what point can you start calling a very long remission a cure, as we do in other cancers.

kim

Oleboyredw-uk profile image
Oleboyredw-uk in reply toPlanetaryKim

I've discussed the subject of 'cure' with a number of CLL specialists. It seemed to me that given comments I'd heard back in 2012 and 'effective cure' is possible for some.

So, do I think there is 'a cure'? No, not yet.

Is there an 'effective cure' yes for some. Example: So, in my interpretation I take drug x at the age of 60. It manages my CLL and if I graph my CLL coming back I would need to take a next remedial action (drug) at 85, and no significant side effects would appear until 80. Unfortunately, I am run over by the proverbial bus at 78. Whilst I would not have been happy about my demise I passed away happy that I had not had to tackle CLL again and so in my mind had been 'effectively cured'.

It is, I agree, hypothetical but I can buy into that concept totally, whilst still accepting my doctor saying my CLL is terminal because there is not a cure (medically proven). Just my thoughts as a layman with zero medical training.

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