I haven’t actually written a blog again in four months, they do tend to be a little sparse these days. Apologies about this, it seems with a business to run, impending baby on the way and an extension in the works I can be a little preoccupied…
Still everyone loves excuses right?
The reason this came to mind to me was I had a comment from a nice gentleman named Jorge. He had recently been diagnosed and wrote on my wall. When I eventually got around to replying (Sorry Jorge) it occurred to me I hadn’t posted anything about lymphoma for nearly a year, and nothing on the research side for several years. With this in mind I thought I’d find a little time to do some reading and put up a summary of the results.
One study which was in Blood caught my eye, and came out in November of 2015 (http://www.bloodjournal.org/content/127/17/2072?sso-checked=true ) This took a view of the condition from a molecular level, but also issued a series of interesting findings.
One is that when I decided not to have my spleen removed four years ago by poll (How caviliar of me https://spleniclymphoma.com/2013/08/23/decision-on-whether-to-keep-my-spleen-splenic-marginal-zone-lymphoma/ ) I was probably taking the right tack. It turns out there are more risks with this than first discussed, and a number of people in the (albeit limited) samples, have had serious complications. Rituximab seems the much better way to go, with the survival rate and response rate being pretty high.
Turns out also that they have been beavering away trying to better work a prognosis for my condition. The following except is of interest.
Subsequently, an international study of 593 SMZL patients63 identified hemoglobin, platelet count, high lactate dehydrogenase level, and extrahilar lymphadenopathy as parameters independently associated with lymphoma-specific survival (LSS). Three risk groups were identified with significantly different 5-year LSS (94%, 78%, and 69%, respectively)
I fall into either group low, or mid (depending on my results on the other areas) and so have a 94 or 78% chance of making 5 years. Still the jokes on them really. Its been four years and four months since I was diagnosed (see many previous comments about any cause of death making the 5 years survival rate lower, must watch out for buses)
They don’t comment on the 10 year survival, as the study is too recent, but this is still listed as just over 50%,
That would give me and anyone else the odds of survival as 1 in 2, which is pretty bleak… except…
According to the latest blood article the average age of diagnosis is 69 years old and it is more prevalent in men. That means that at ten years these chaps are around 79 (I know averages don’t work like that, some will be older, some like me younger, but 69 is a high average if there are many youngsters, as it would mean some people diagnosed at way over 69… anyway I digress). If someone is 79 and male they have reached their life expectancy anyway, which is currently 79.1. This would mean they may just die of other things and so skew the figures.
So that pretty reassuring.
They also go on to comment at the end,
Despite the relative rarity of SMZL, there has been a major effort in the last decade to define diagnostic criteria and the prognosis and molecular landscape of this neoplasm and of disorders that mimic SMZL. Although understanding of the genetics of this disease has improved significantly over the last 5 years, the pathogenetic implications of newly discovered genetic lesions still remain to be formally documented. (sic)
Prospective studies dedicated to SMZL will clarify clinical benefit and the toxicity profile of the immunochemotherapy approach. Specific molecular targets seem to be reasonably actionable in SMZL but in the era of precision medicine, splenectomy and rituximab monotherapy are still effective options for the majority of the patients with SMZL.
Which again is reassuring. I’ve had this cancer now for over four years (probably longer, depends on diagnosis as date of development) and even since then they are working on it. Many people say to me when they first hear i have it that medicine is coming on, and it really is. Things like this give me hope that I will get to see my children grow up, whereas just the survival rates are pretty bleak (As insurance companies agree). Whilst I don’t think about my cancer all the time, I do some weeks more than others, and so its good to keep up with the current developments, as it will be I’m sure for my fellow sufferers. (please comment if you find this stuff helpful, or to give me an update on how you are getting on)
I will try and post more often too, but with the imminent birth of our next child being in November I can’t make any promises…
Either way keep well!
Grandma was allowed rituximab for two years and was told it has in some cases been successful in keeping the cancer at bay for a further 2 years. That was 5 years ago.
Friend with something recently told me she got travel insurance from Boots for £70 for the year having been quoted loads more by all the other companies. Now I am trying really hard to recall who told me that as I sympathised about the hike in travel insurance – hopefully it will come to me. love mum
Watching with interest very much interested in your progress, new research, etc. Diagnosed Feb 2013, SMZL I went the other way and had splenectomy. Been well every since. I read an article early on about how our survival rates are always lower and weighted because of the age of average patient as in my case diagnosed at 59. As I probably face more treatment in future I feel happy I had the splenectomy which has given me 4.5yrs of good health and no side effects. I so admire your strength and courage. Can’t wait to hear of your new arrival. All the best for a bright future with your Jo and the little ones.
Thanks Carol, I missed this last month, sorry about that! Glad to hear spleenectomy can work. It’s something I’m sure I’ll need to do at some point anyway. It’s great to see people reach out and do keep me posted on how you get on!