Q & A about Lymphoma and Brett!

People have been asking a lot of questions - and of course those are the people that see us in person!  So we thought we'd answer questions here*:

Q. What are lymph nodes?  How many are there? How many do you have?
When we heard that they took out one of Brett's lymph nodes, the first response of Eric and I was: Doesn't he need that?!!!

A.  From WebMD:

Lymph nodes are part of the lymph system, which carries lymph fluid, nutrients, and waste material between the body tissues and the bloodstream. The three most common sites of swollen lymph nodes are the neck, armpit, and groin. The lymph system is an important part of the immune system.

We have between 501 and 700 lymph nodes.  The amount varies from individual to individual.

Q. What is lymphoma? or Hodgkin's Lymphoma?
Lymphoma is a cancer of the lymph system and originates from white blood cells called lymphocytes. The cancer is "contained" in the lymph nodes or lymph system.  (It's in the leukemia, or blood diseases, family.)  Not too long ago, it was referred to as Hodgkin's Disease, but more recently was corrected to be called Hodgkin's Lymphoma, although you'll hear them used interchangeably.

Hodgkin's Lymphoma means that under a microscope - particular cells were present, called Reed–Sternberg cells. Read here for more info.

This video is an awesome description of this disease!

Q. Who was this Hodgkin guy anyway?

A. Diseases are usually either named for the first "victim" or for the person that discovered it.  Hodgkin's Disease was named after Thomas Hodgkin (1798 – 1866) who was a predominate London pathologist. Pathology (medical study of tissue to determine diseases and origins) was was new and Hodgkin was consider a pioneer of modern medicine.  Some cool articles are on the internet about this guy!  And Wow!  What a cool beard!

• National Institute of Health Article

• Who Named It article

• Prominent Quaker article

Q. How advanced is Brett's lymphoma?
A.  Brett has Stage IIIB.  Stage III (3) means there are diseased nodes below his diaphragm, as well as above.  Brett's malignant nodes are very prominent in his neck, chest (nodes in and around lungs, around heart), armpits (his fingers go numb), and in and around his spleen.  It doesn't appear that the spleen has been directly affected.  His bone marrow biopsy was clean so he isn't Stage IV.  The "B" signifies he has the symptoms of fevers, drenching sweats and weight loss.

Q. How did Brett get diagnosed? What were some signs?
A. Brett has had some sort of cold/respiratory things going on really since Christmas.  At Christmas we noticed he was having some drenching night sweats.  This continued in January, but it had gotten better.  I thought it was just the fact he was growing and maybe changes in hormones, etc. as he gets older.  He had gone through some pretty extensive physicals where there were enlarged lymph nodes (not crazy big like now) and the doctor said that they were inflammed because of his cold.  So Brett goes on his mission and was always fatigued but they had a pretty rigorous schedule. He continued with a cough he couldn't get rid of.

After Brett was in Dallas, he got another really bad cold.  He never could quite get healthy.  This cold and cough hung on... so his companion said they should see the nurse.  The nurse didn't like how his lymph nodes felt - they were quite large at this point - so she told him to go to the urgent care clinic.  The clinic then said he needs to be seen at the hospital and he was admitted (all this happened in one day).  They had ruled out mono and other bacterial diseases - and decided they needed to to a surgical biopsy (where they take an entire node - not a need aspiration) and the rest is history, as they say!

The non-ending "cold" symptoms were from the effects of the cancer itself, the actual colds were from a weakened immune system, and the coughing is from the enlarged/cancerous lymph nodes pressing on his bronchial tubes in his lungs.


Q.  How is Brett feeling?  What's he doing?
A.  He generally feels like he has a bad respiratory flu.  Fevers are "normal" and usually about 100-101º.. and he gets shivers and then drenching sweats.  Tylenol or Ibuprofen will break the fever - but then he dreads having the sweats.  He's also lost about 25 pounds in the last couple of months - and can't seem to gain weight despite eating eating normally (and we've been adding extra calories).

He coughs... a lot.  And there isn't much he can do for it until those lymph nodes have shrunk.  

Brett is in great spirits (you can tell from the pictures) and really doing well!  He's eating well but very fatigued.  He'll go to one hour of church - but then will take a 3-hour nap.  He sleeps a lot - and has very little energy to do much right now.

Q. Can Brett go out? Shake hands? Hug?
A.  Brett can go out - but has to be really cautious.  Because the lymphoma is a cancer of the lymph system - and because his chemo is frequent - his immune system doesn't get time to recover.  Chemo for most cancers is a once-a-month regimen.  Brett's chemo is every 2 weeks, so his immune system (or blood counts... sometimes you'll hear us say "his numbers are good/bad") doesn't have time to recover fully.  

For that reason he has to try not to catch a cold, flu, etc... because it quickly becomes more serious for him.  If Brett gets a fever of over 100.4º during the chemo process, he will be admitted to the hospital for 3 days (or longer).  

You may see Brett wear a mask, or if you have the coughs, sneezes, etc. - then you will be asked to put on a mask when you visit us (we have 'em).

Brett might wave this off because he's so nice... so we have to be vigilant for him... haha.

Q. Will Brett lose his hair? When? And then when does it grow back?
A. More than likely, yes.  And they say it typically happens between 2-4 weeks after treatment (or, more drastically after the 2nd chemo treatment which is July 1st).  It can come out gradually, or drastically. And yes, from head to toe, but oddly enough the chemo nurse said a lot of times, patients keep their eyebrows. (?)  It starts to grow back after chemo will end (which looks like November)!  He might have hair by Christmas!

Q.  What color is his ribbon?  (Yup - I've been asked.)
A.  The Hodgkin Lymphoma Ribbon is violet!  (If you see lime green, then that is for Non-Hodgkin's Lymphoma). 

*All medical descriptions are just my interpretation.  By no means, should anyone take my word on these things - but I tried to put things in ways that I heard/understood them.  :)