ACOR▶ a large collection of cancer-related online email lists, which has delivered millions of email messages to subscribers across the globe.
Canswerist (aka cancer survivor or caregiver) looks to begin or extend research for their diagnosis (DX), the world wide web (or internet) is a logical starting points. Typically, such a search may lead to discovery on a range of INTRANETS.
This and other archived content for #Canswerist is to
CANswer♥Worth http://flip.it/HSmfYK via @flipboard
Following such research and exploration, #Canswerist offers this archive introduction to the content below. Basically, this follows receipt of a significant private ACOR email stream generated by a fellow MCL survivor Max Wood.
many people are affected by MCL?
Mantle cell lymphoma is a rare type of non Hodgkin lymphoma (NHL). Only about 5 out of every 100 people (5%) diagnosed with Non-Hodgkin's Lymphoma
(NHL) have mantle cell lymphoma. It mainly affects men who are over age 50.
(now read this excerpt from ACOR contributor Max Wood)
Note: This information, of course, is a layman's account of a clinical and scientific subject. What is not scripted here are the numerous email responses and additional messages from the source to amplify this story. Readers must join the ACOR message board in order to view all of this information. Hence, you must be a real #Canswerist (cancer survivor or caregiver) to conduct further research into this subject at the ACOR source.
What exactly is MCL and what is the cause? I don't know why it has taken me so long (3 years since DX) to attempt to more fully understand our disease, but I've been working on that lately. This is my understanding and I would appreciate comments, suggestions any thoughts you may have in general.
By the way, this is for those who are more technically and medically inclined. So, what is the answer to the question, "What exactly is MCL and what is the cause?" We've heard explanations before that our disease is a result of a translocation on chromosomes 11, 14, but exactly what does it mean, though?
First, let's take a "high level" look. We all have 23 pairs of chromosomes numbered 1 through 22 plus a sex chromosome (mail or female) in each of our cells. The number and type of genes on each chromosome is different. Each chromosome contains the genes that make us human in a single strand of DNA.
As an example, chromosome 11 contains approximately 2,900 genes. The total of all genes in the human body is about 20,000. If a particular gene is activated (expressed) it results in the manufacture of a "gene product" which often is a protein. Protein is a molecule that is one of the basic building blocks of our body. Proteins are used for many functions (http://bit.ly/2lx9yFG). This explanation is an oversimplification, but I believe accurate and gets us to the point of understanding "translocation" on chromosome 11,14. So, let's take a look at a few explanations that may shed more light on translocation.
1. http://bit.ly/2lx7JIT -- A You Tube video of translocation and chromosomes. While it does not talk about 11, 14, it does provide a good overview of how translocation (mixed up) occurs.
2. http://bit.ly/2lxdd6p - A Wikepedia description of translocation. I fully understand there are more scientific/medical explanations but this does a decent job of explaining it without all of the medical jargon.
3. http://bit.ly/2lxdd6p - The same Wikepedia page above but the section that identifies examples of translocations.
As you can see, the translocations are certainly not uncommon but the ones identified here can cause major damage. Also on that list is our beloved MCL. You will notice that the chromosomes that are affected for MCL relate to Cyclin D1 (11) and LDH@ (14). Cyclin D1 is a protein that controls cell growth and LDH@ is an immunoglobulin that impacts the immune system.
So, in essence, MCL is a cancer with uncontrolled cell grown (cancer definition) that affects the immune system (B cells). The genetic abnormality (translocation) causes the cell to produce proteins that, in turn, cause the cells of the immune system to grow uncontrollably. That's it. That is the nexus of our disease.
Okay, so what causes this. Well, no one knows. But during the process of copying the genes (DNA) that occurs during cell production a mistake is made. That, in essence, is what causes the translocation. Errors in copying 20,000 genes are not uncommon but usually the system corrects for them or if they are not corrected many errors occur that have no affect and go unnoticed. It just so happens that this particular error has a BIG impact for us.
Again, while it is known that some environmental conditions result in cancer (smoking, radiation, some pesticides, virus, etc) none are known to cause the MCL mutation or, in fact, many other mutations.
If you think about the fact that the body contains 40 trillion cells and 20,000 genes are copied at the division of each and every cell you might wonder why there aren't more mistakes. I hope your eyes have not glazed over at this point :-). Anyway, this is for those who may be more technically inclined and I am posting it here both as it relates to my understanding and in hopes that others will add or delete to this explanation for the benefit of all.
RELATED: Not only is this KINDLE book an inspiring survival manual for cancer patients, but its humor and objectivity make it a choice read for anyone who enjoys real-life drama and pathos. Diagnosed with Mantle Cell Lymphoma in 2012 the author resorted to a blog to keep in touch with friends, and unwittingly ended up writing about the good, the bad and the ugly side of cancer, which attracted many followers. Is there a good? Very possibly. Bad and ugly, definitely. There is also an extremely funny side - wry observations that brought humour into an otherwise bleak landscape which included chemotherapy and a stem cell transplant. The author is also blessed with a big following from the Mind, Body, Spirit community of which she is a part (including Judy Hall, Anita Moorjani, Dolores Ashcroft-Nowicki); from this outpouring of expert support came advice on nutrition and alternative therapies which help to make this an invaluable source of information for cancer patients and their carers.