Is Hodgkin's genetic? Husband had classical HL, daughter just diagnosed with NLPHL

AS97
AS97 Member Posts: 1
edited March 2017 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi, I'm new to this site. It's my first post and I'm wondering if anyone else has had more than one person in their family with Hodgkin's Lymphoma? My husband was diagnosed with stage 2a classical HL in 2009 and had 12 rounds of AVBD. He has been cured ever since. My 19 year old daughter was just diagnosed with stage 2A nlphl last month. She is supposed to have 4 rounds of AVBD and 10 days of radiation. Are there any other families out there like ours? Im wondering this is random or genetic? Are there any other recently diagnosed Nlphl people out there? It seems like it is more rare. Thanks for your input. 

Comments

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    edited March 2017 #2
    Hodgkin's Lymphoma

    first - I have not personally had Hodgkins - I have follicular. However I discussed it once with a relative who is a Dr. after an employee of mine contracted it.  Having a close family member who has Hodgkin's lymphoma OR non-Hodgkin's lymphoma increases your risk of developing Hodgkin's lymphoma but only slightly. It is unclear exactly why this happens.  Males are slightly more likely to develop Hodgkin's lymphoma than females. It occurs mainly in people under age 30. The biggest single risk factor is for people who have had illnesses caused by the Epstein-Barr virus, such as infectious mononucleosis. Since this is an infection, and germs are easily transmitted in a close family environment, this could explain why Hodgkin's disease can sometimes "run in families". It is possible for a person to be infected while having few if any symptoms of the infection. Maybe completely assymptomatic or just a few minor cold symptoms. Bob said that it appears to strike at a time in life when people's immune systems are vigorous - healthy young people.

    Good news is its very curable! You probably knew all this. If so please pardon me for boring you and have a wonderful week! The future is bright.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #3
    Welcome

    Welcome AS97.   The cause of Lymphoma is about 90% unknown.  The sequence of events among stem cells or Lympocytes that emerge as HL cells is identified, but what triggers these is unknown.  The best , most recent theory among reasearcher is that most cancers are random in occurence: billions of cell reproductions happen in a human body annually, and statistically, some of those are going to be miscoded, leading to cancerous explosions.  A parent with lymphoma slightly increases the liklihood that a biological child might get it, but that liklihood is only a little above random.

    Lymphoma (as best as can currently be determined) is unrelated to diet, exercise, body mass, or even age. There are slight  age ranges in which occurence peaks, but these have so many exceptions as to be of little relvance.  People massively overweight and vegans get it at similiar rates. Teens and the elderly.

    My own HL was NLPHL, so I can share a bit about that regarding your daughter later, if you have further questions to ask.  Since NLPHL is the only form of HL that has the CD-20 cell, which is what Rituxan kills, ask her onc why she is not getting Rituxan added to her chemos.  ABVD is then written as "R-ABVD", of course.

    NLPHL is rare, but not extremely rare like, say, T-cell disease.  There are four "classic" forms of HL, plus NLPHL, which is not a classic form. Of HL, NLPHL constitutes only around 5% of new cases, and because NHL is much more common than  HL, NLPHL constitutes under 1% of all new cases annually.

    In the four years I have been reading here, there have been maybe 7 or 8 cases reported.  NLPHL is indolent, or non-aggressive, and easily put iinto full remission. But it has some tendency to relapse, around a 15% lifelime chance.  I view that from the positive perspective: an 85% liklihood that it will not come back.  And it (like any Lymphoma) can come back as a different Lymphoma, or even a Leukemia, so lifetime followship is recommended.

    Bottom line: she is likely to be cured fast, and then reman cured.

    max

  • Zim
    Zim Member Posts: 3
    #4
    Hereditary

    Hi I am also new to this sight.  I have a cluster of lymph nodes in my chest with one being 3x2 inches.  I also have one in my neck/shoulder.  I have been waiting 2 weeks for a biopsy and it is really frustrating. They said they strongly suspect non hodgkins lymphoma but the cluster of masses are completely surrounded by vital organs and blood vessels.  They were going to go through the trachea and lung to getthe biopsy and began setting it up when I discovered the neck one so are now trying to get that one set first. My sister passed away 3 years ago from Non Hodgkins Lymphoma. Her first round of treatment had her ALMOST in the clear. The Doctors requested a different treatment and it took the insurance so long to give approval (months) that she died the day after it was granted. Have you done anything natural to help like green juicing, wheat grass juice.  I have started both. What I've read about it has made sense to me and it makes me feel better to do something while I'm sitting waiting for the biopsy and treatment.  I am physically in bad shape right now having recently had a hysterectomy and a heart issue.  I am trying to get exercise to strengthen myself but feel like I'm in a juggling act. Any tips going into this?

  • po18guy
    po18guy Member Posts: 1,505 Member
    #5
    Oncogenes and tumor suppression genes

    We have cancer built into us - at least its potential. Our cells have both gas pedal and brake - like our cars. Circumvent one, or the other (or both) and we have a problem. We may be born with a mutation already in place. One additional mutation and cancer develops. The "why?" is the salient question. I suggest that all read a copy of The Emperor Of All Maladies by Siddhartha Mukherjee.

  • Rocquie
    Rocquie Member Posts: 869 Member
    #6
    po18guy said:

    Oncogenes and tumor suppression genes

    We have cancer built into us - at least its potential. Our cells have both gas pedal and brake - like our cars. Circumvent one, or the other (or both) and we have a problem. We may be born with a mutation already in place. One additional mutation and cancer develops. The "why?" is the salient question. I suggest that all read a copy of The Emperor Of All Maladies by Siddhartha Mukherjee.

    The Emperor of All Maladies

    I love this pulitzer prize winning book and also the film version of it, produced by Ken Burns, and shown in two parts on PBS. (I checked the book out from the library and watched the film online). 

  • PBL
    PBL Member Posts: 366 Member
    #7
    The Emperor of All Maladies

    ...is an excellent book! I bought it about a year ago, while I was heading straight for chemo.

    I didn't know a film had been based on it though... Thanks for the information, I'll definitely try to find it!

    S. Mukherjee also wrote a book on genes, which is on my wishlist.

  • StephanF
    StephanF Member Posts: 10
    #8
    Video "The Emperor of All Maladies"

    I saw the documentation about the book on youtube just a few days before and didn't know it was based on a book, so just the other way round ;-)

    Here I have a link: https://www.youtube.com/watch?v=rJYFE0VcH7s

    It is super interesting and worth watching!

  • PBL
    PBL Member Posts: 366 Member
    #9
    I confirm - Well worth watching

    I did find it and watched all three parts. Definitely an instructive and enriching documentary.

  • MamaToSon
    MamaToSon Member Posts: 1
    edited May 2017 #10
    NLPHL

    Hello,  I have been silently watching this group for 5 years and this is my 1st post.  I am the mother to a son who was diagnosed at age 17 with NLPHL.  Yes NLPHL is rare and the protocols used to treat seem to vary because of that. 

    We sought out 3 pathology reads on the tumor to confirm NLPHL diagnosis.  We are lucky to live near several respected teaching hospitals.  We received 2 different recommendations for treatment, the adult cancer world offered ABVD for 6 months and the the pediatric world offered ABVE-PC for 3-4 months.   We chose the pediatric route as the doctor highly respected (and awesom).  She worked with my son on a treatment plan with the goal for treatment to be done so that he would be ready for baseball season, prom and graduation.  The pediatric hospital system is built for supporting families (and they had an xbox in the waiting room :))

     It was explained that children and adults are treated differenty and the doctors were focused on reducing long term side effects or late effects.  Rituxin was reserved for 2nd line defense, if needed.

    My son was diagnosed Stage 3A NLPHL Mid September 2012 and he began chemo in the beginning of October 2012.  He recieved 3 cylces of treatment and then PET Scan and then recieved 2 more cycles and scanned again.   Last treatment was Jan 9, 2013.   Remission was declared Feb 2013 in his senior year of high school.  He started on the baseball team that March, scored the first run and hit the first home run for the team.  He went to prom and enjoyed graduating!

    Since remission, they have only PET scanned him 2 times in the first year) as they want  to reduce the exposure to radiation.     It has been difficult, psychologically, for my son not to get scanned, because in his mind, the scans prove he is cancer free.  Without them, he has doubt.  We talk about it around check up time and hopefully it helps him. 

    He is now a 22, a NCAA Div-1 baseball player and will be graduating college soon :)

     

     

     

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