Strike 2

The second of the recent mini-flurry of CLIPPERS papers returns to the topic of CLIPPERS being mistaken for Primary Central Nervous System Lymphoma (PCNSL), with a short comment and response on the recent case-study by De Graaf et al where a patient fulfilling the diagnostic criteria for CLIPPERS went on to develop PCNSL. There is some discussion which I don't understand (as I am not a doctor) about the time-course of tests and patient response in this case. The advice from both sets of authors is that patients newly diagnosed with possible CLIPPERS should be closely followed, especially for the first 12 months, in case there is another cause. This comes back to the lack of a definitive diagnostic test for CLIPPERS, and the fact that ultimately the diagnosis is by exclusion of other conditions which could also have similar symptoms and MRI appearance. I was told in 2011 there was an outside chance I could have PCNSL rather than CLIPPERS - the big problem is that initially PCNSL responds to steroids like CLIPPERS but then returns and is very hard to treat. I spent a nervous few months on steroids before getting to the point where I thought that if it was PCNSL, that it should probably have recurred by now.

In fact, the most controversial part of the new comment is the title: "Should CLIPPERS Be Considered a Prelymphoma State or a New Inflammatory Disease?" From my understanding (doctor disclaimer again) it is pretty clear that whatever the problems presented by CLIPPERS, it is still preferable to PCNSL. While there have been one or two cases reported of PCNSL being mis-diagnosed as CLIPPERS, I'm not aware of much evidence for CLIPPERS being a precursor to something else - but it is quite early days. As there is some variation in CLIPPERS symptoms and response to treatment, it may be that it isn't a single well-defined "condition" but one which differs from person-to-person. In the absence of a definitive test for CLIPPERS this remains a possibility, particularly as there is increasing variability in the published cases regarded as CLIPPERS. 

Still lots to do then.

Read other articles in this series at Living With CLIPPERS.

Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Darn it.

 Well, no sooner had I claimed there was no CLIPPERS news, then a mini-flurry of new reports has appeared. So the first (and probably least interesting from the patient perspective) is as follows:

3.0T MR investigation of CLIPPERS: 

Role of susceptibility weighted and perfusion weighted imaging. 

Pesaresi I, Sabato M, Desideri I, Puglioli M, Moretti P, Cosottini M., Unit of Neuroradiology, AOUP, Santa Chiara Hospital, Pisa, Italy.

This is a paper which investigates the appearance of CLIPPERS lesions on different kinds of MR image. Those of you who have had an MRI scan will probably remember the radiographer saying things like "First scan now for 2 minutes" or "Stay still, this one takes about 6 minutes". Each time, the scanner is being adjusted to collect different kinds of image which highlight different properties of brain tissue. Now, the images people most often report in CLIPPERS papers are the contrast-enhanced ones where an image is collected before and after the injection of a drug which changes the appearance of any lesions (because of damage to the Blood-Brain-Barrier). You can see images of my CLIPPER brain in this blog entry from 2011. 

I'm getting to the point now. It would be better if CLIPPERS lesions could be reliably identified using images which don't require injections. Also other kinds of MR images might show up new information about CLIPPERS in the brain. So these researchers in Italy looked at two different kinds of MR image on a 3T scanner (the number of T is the magnetic field strength and is usually 1.5T or 3T in hospitals). Although this sounds like a methods paper, it is really another case study as they only look at results from one patient - we're still a rare breed. However they do discuss what could be going on in the tissue to make the lesions visible in the two kinds of image which I'm sure will be of interest to the medics. More updates soon.

Read other articles in this series at Living With CLIPPERS.


Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

NEWS FLASH: CLIPPER climbs Snowdon

Half-way up, before the cloud came down.

Two years ago this week I was discharged from hospital with unsteady (but improving) gait, coordination problems, double vision and a bag full of Prednisolone. I also had some new symptoms of occasional jerking and rigid limbs, and stalling of speech. Today I walked up Snowdon, the highest mountain in Wales, in what turned out to be fairly atrocious conditions. It still feels like a birthday though.

Everything could still turn 180 degrees in the future, but things are stable for now. I want to thank everyone who reads the blog for making it worthwhile and in particular those who have contacted me personally over the last couple of years. I know it's been a bit quiet recently, but unfortunately there just hasn't been much CLIPPERS news to report. If you know differently, let me know, or feel free to post something in the forum. 

Best Wishes,

 -Bill

Read other articles in this series at Living With CLIPPERS.


Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.