Hi I joined up here as part of my research, my mom just diagnosed with follicular lymphoma. Grade 3A, follicular pattern.
Im trying to be smart and make sure she is getting the right care. But during my research, I have questions that no one can answer other people with the cancer. If you would please help me, I will try to make it worth your time.
I just am going to post my questions. In no particular order. The first this is
Q: What do you think actually causes it? I think it was the Humeria that she took. But, she told me the doctors said not really.
Q: Is this a cancer of the the Naive B cell population, or the Memory B cells. I just now learning about this, if this a stupid question. But, my follow up is I read the Naive B cells use glycolysis, where as the mature ones use fatty acid oxidation. Does anybody have more information about this, where this is a blood cancer, It is so much different than regular cancer. So, I dont know what diet is best.
Q: In my research on fats, cause I think there might be some importance of fat metabolism on the immune system. I realized that the all fat you eat (not MCT oil though) actually goes into the mesenteric lymphatic nodes in the intestines and travels up through the lymph ducts into your shoulder neck area where it connects to a vein to go into your blood stream. Is this correct? Thats pretty wild. So, I wanted to know from someone with this, how that actually works, with the lymph nodes being swollen and jammed up with follicles or whatever (please tell me), how does the lymph flow for you to get the fats into your body?
Hi goodson and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your mom’s
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. (Your mom’s FL is also a type of Low-Grade)
I eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of the Lymphoma journey rather well
I am not a medical professional so most of your questions will have to be asking you need to be put to a medical professional for answers.
For some context and clarity…… where do your mom and indeed yourself live?….. are you in the UK?
Lymphoma is a complicated type of cancer.
There are over 60 types and sub-types of Lymphoma and many of these develop in different ways but as you know Lymphoma is a type of cancer.
The links below explain what lymphoma is and how this cancer develops.
As to your first question, I think you will find that there is no definitive answer……
As for your 2 other questions….. again this needs to go to a medical professional….. the Dietician in our Heamatology Unit said keep food it simple and safe….
Is your mom in treatment or is she on Active Monitoring (Watch and Wait) ?
When on Active Monitoring I was told eat a balanced diet, cut out fast food, watch my alcohol intake, keep active….. and as to fat…. we know the body needs some good fat so keep away from the recognised bad fats, bad cooking stiles and look to control fat intake but not cut it out.
When in treatment the diet changes to that of a pregnant woman as the immune system is significantly compromised so cant fight food bugs.
Hi again goodson and a warm welcome all the way from West Virginia.
My story is rather complicated (See my story) as I had to have significant treatments not just for my CTCL but mainly due to me developing the second more aggressive type of PTCL-NOS in late 2013……….. but I am coming up to 9 years out from my last treatment, I turn 69 in Nov and I am doing great.
As with your mum R-CHOP is also widely used in the UK…… although you have to remember that in the UK our National Health Service (NHS) is rather different from the provision of health services in the USA.
As part of my treatments I had the big brother of R-CHOP. I had R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ R-CHOP is nothing like this.
As for my skin, it has been totally clean for 9 years now. My CTCL is seen as being fast asleep but still incurable with my PTCL-NOS looked at as being cured.
When I mean a pregnancy diet I mean that the food that your mum is eating does not contain things like……
Raw or undercooked meat, chicken, fish and no shellfish
Unpasteurised or raw milk
Raw or undercooked eggs
Unwashed fresh fruit and vegetables
Soft cheeses made from unpasteurised milk
Uncovered deli meats
Cold rice
…….. as the main issue is that having a reduced immune system a small food bug in ‘any’ food can be hard to fight compared to someone having a fully functioning immune system that this would not have any effect on…… this is the same basic principle as in the immune system of a pregnant woman.
CTCL is often confused as skin conditions like Psoriasis……. but the reality they are completely different.
But it is not that unusual for people who have lived with undiagnosed Lymphoma or receive a Lymphoma diagnosis…… or go through Lymphoma treatments to actually go on and develop skin problems like Psoriasis.
your mutant T cells still fight infections? Do they give you any advantage in fighting other kinds of illnesses? Have you ever looked into adding helper t cells, or anything kind of immune modulating herbs, or drugs? Have you tried extending fasting?
Having one of the many T-Cell Lymphomas means that the killer T-Cells in the blood stream are not doing their job as in killing infections and disease…… so they are basically no help whatsoever so you are more open to infection and other illnesses during and post treatments (you will see that in my story)
In the UK….. and being treated on our NHS the self application of herbs, un-proscribed drugs, fasting diets…… all need to be put past our clinical teams.
Being treated for Lymphoma is walking a very fine balance and some ‘alternative medicines’ and approaches can be counterproductive and indeed could reduce the effectiveness of some proven cancer treatments,
Hi again goodson no problem with asking questions.
The first thing I will say is that you can research the why’s? and how’s? about Lymphoma as much as you want….. as has been done for a very long time by some very clever people around the world……. but you will find out that the bottom line is when you get a Lymohoma diagnosis it’s basically the luck of the draw.
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) and I am sure it’s the same in the US…… and it is accepted that 1 in 2 people will be effected in some way with cancer in their lifetime…… so you have to go with the flow, ride the waves as best as you can.m and not let cancer define you.
But I have to say that you should actually be concentrating on collecting the best tips and advice about how to support your mom on this unwanted and scary journey she is on….. You haven’t asked any questions about this?
I had significant allergies to animals and to some drugs like Penicillin…… this is a problem when going through some cancer treatments as some cancer drugs are produced in live animals. One specific drug I had leading up to my first Stem Cell Transplant was produced in a single horse in France!!!
Due to my allergies I always had to significant amounts of antihistamines before all my treatments…… but the amazing thing is my allergies are all gone as my brother had no allergies so once his Stem Cells become 100% donor in my bone marrow my allergies just went.
Back when I was first diagnosed I was a normal 44 year old, 6ft, 100kg fit man…… 25 years on nothing much has changed although I am turning 69 in a few months and have a few other health conditions that can be related to post treatment issues….. but nothing that stops me getting on with life.
The Osteoarthritis was work related due to working in a production facility where I made stairs, windows. doors…..
I wish your mom well in her treatment journey.
