Neil Langevin

Live to Fight Another Day


Well here goes;

It was a week before my son’s 6th birthday in May of 2017 that I noticed a lump in my left armpit while I was showering.  Now I have to say I didn’t notice this lump in my armpit the last few days, it was like it came on all of a sudden and was a bit smaller than a golf ball to the touch.  I was instantly concerned.  My doctor was unable to see me for at least a week.  I decided to go to urgent care to see if someone could help me out.  The doctor there said he wouldn’t touch it and that I should see my doctor.  Great, so I tell my doctor’s office this and my doc decides to see me with in a couple of days.  I see my Physician and she decides to send me to a surgical doctor to see what he thinks.  OK, now a week later I see this doctor who tells me “If I was a betting man, I wouldn’t be worried and that my node is probably inflamed from an infection.”  He decided to send me for an ultrasound, so a week later after the results he decides to have an ultrasound biopsy done on it.  So I had the biopsy and would receive the results once they receive them..

A week later, my physician is on Vacation for a week and I was told I need to wait for her to come back to get the results.  Alright, now Im freaking out, the lump feels a little bigger and no one had answers for me.  I, very politely told the nurse I need the results ASAP as I’ve been waiting weeks to find out what this thing is.  (Not very politely).  They decided to have me come in the next day after work and meet with another doctor.  (One that I’m not too fond of).  My wife and I went in and were sat down.  The Doctor walks in takes a seat and says melanoma cells were found in the main biopsy site.  (2 pos in the enlarged node and 1 neg in a near by node slightly enlarged from the initial) “This looks like cancer and feels like cancer and it’s a very bad cancer”  No lie that’s what he said.  My heart stops as I go into this trance like stage, just saying yup, uh huh while he continues to talk, but saying he doesn’t know much about this cancer, but enough that it’s bad, bad.

The next weeks were filled with tears and trying to realize what was happening and how to accept this diagnosis.  Reading on the internet (Don’t do this until you know more from people who know what there talking about).  This just made things worse as there was no possible hope in sight with statistics and crap.  I could barely sleep as I would think about the worst possible scenario before I closed my eyes and breakout into tears the second I woke up.   But, I remember telling myself “your not gonna die today, your not gonna die tomorrow” It definitely puts everything into perspective of what’s important in life.  I would go lay down in my son’s bed with him, just staring at him while he was sleeping, so I could see him for every possible second I could. 

I soon after met with an Oncologist at a local Hospital, the doctor was very nice, very well versed and seemed to have been doing this for a very long time.  He advised me, that it’s a new day and age in the use of medicine and not to worry too much yet and stay off the internet.  So my team of doctors decided to have scans, MRI’s and see what the results say and take it from there over the next few weeks.  I was happier, but no where near satisfied.  I wanted this tumor out. (NOW).  The next day I called Dana Farber Cancer Institute in Boston, as they are the best in the area I live.  They had all my apts set up for the same day and to come in two days for them.  (Orientation, Nurse, Oncologist, Dermatologist and Surgeon) In the mean time I had a CAT scan from the neck down and an MRI of my brain to look for lesions.

It was a little nerve racking walking in this place for the first time, but you soon realize that you are not the only person in this situation, you are not alone.  So I met with the nurse who tries to make you comfortable, but doesn’t know what’s going on with you.  That made me more nervous.  Then my Oncologist, a very nice younger woman that specialized in Melanoma, she told me, my scans only showed what we already knew and no other lesions anywhere and the MRI was clear as well.  That’s was good news.  But they couldn’t stage me yet, until after surgery.  I was Stage 3 but B or C?  B had a 50 percent chance of coming back and C had a 70 percent chance of coming back.  She explained immunotherapy’s and told me she felt I would be around for a long time.  Wow, I almost broke into tears; supposedly I have a pretty good chance of living for quite some time.  My wife and I got some lunch with the feeling of relief after weeks of fear.  Maybe there could be light at the end of the tunnel.  We returned to the hospital to meet with the dermatologist.  No primary mole could be found, I had one spot frozen off months ago that was supposedly pre-cancerous, but was now gone.  It was biopsied anyways but nothing was ever found.  I guess 7% of the time they never know or it can start very tiny and just drop below the skin and spread like the seeds of a dandelion, or can sometimes start in the node itself.  I will have to see the dermatologist every three months, stay out of the sun forever and use U/V clothing and High PF sunscreen anywhere near the sun.  Next I met with the Surgeon, he wanted to perform surgery on me immediately and remove not just the tumor but all of my lymph nodes in the area, plus some surrounding tissue.  (47 nodes in all)  He then explained the risks with surgery.  One thing I will never forget is how he explained my situation.  He said “Don’t think about dying because you can get hit by a bus on the way home, and why would you start worrying about everything.  What if he could promise that the cancer would never come back, but someday you will die of something or that if it did come back chances are that they can treat it again.”  This made sense and made us feel better about the whole situation.  A week later I had the surgery on July 20th.

Surgery went well, out of 47 nodes only the one was cancerous.  It was large, like over 6mm I believe but it was still encapsulated which was a good thing.  Meaning it had not torn or split open releasing more cancer cells.  But technically there could be cells anywhere in my body that can trigger at any time but typically within the first year and a half.  So now I am staged as 3B since it was just the one node.  It was removed which makes me NED (No Evidence of Disease).  I guess that’s like saying in remission but you will always have a chance of it coming back.  So the break down was 40-50% chance of return within a year and a half, 20-25% chance within three years and 10% or less after 5 years.  There will always be a chance but it might never come back or it could come back in 30 years.  Id be ok with 30 years as I am only 40. 

After recovery I had decisions to make as far as treatment. 
1. Wait and see
2. Radiation to the area
3. chemo/immunotherapy/clinical trials

I am not the type of person to sit and wait, even though the side effects can be as severe as death.  I talked with my wife and parents and we were all on the same page.  Let’s kick this things ass.  So I went through radiation 4 weeks 20 treatments, the worst part of that was I threw out my back and it was bad for like 2 months.  So I barely noticed anything with the radiation aside from some mild tiredness.  The radiation should greatly lower the chance of the cancer returning to that area in the future. Chemo was out of the question as it does virtually nothing for this type of cancer and Immunotherapy is limited to high dose Yervoy with high chance of severe side effects.  So I looked at clinical trials, Yervoy with Keytruda or straight Keytruda.  I waited to see which Id receive and it turned out to be Yervoy with Keytruda with high risk of side effects, so I turned it down and waited for another clinical trial.  I did not want to trade chance of death for chance of death.  I had 50% chance of it coming back and Id have 50% chance of bad side effect leaving me 75% chance of something bad happening when right now I was clear.   So I called the Oncologist to talk about new clinical trials and options and it turned out that Opdivo (Nivilumab) which is a sister drug to Keytruda had been proven in the UK to help prevent reoccurrence,   It is also cheaper than other drugs, so Insurance said yes within a few days.  This made us very happy as the chance of a bad side effect was now less than 15%.  The Opdivo should cut the chance of reoccurrence in half throughout my life.  I’d get treatment for 1 year every other week for 1 hour infusion.  I’d also have CAT scans every 3 months to monitor my condition.

Today I am happy to be alive.  I’m back to my regular schedule, back to work and on my 9th treatment this week, about 4 months in.  My last scan was a few weeks ago and was all clear.  I’ve had mild skin issues pimples and minor rashes also some stomach discomfort, but that’s about it.  I’m still in physical therapy for my arm due to increased chance of lymphedema.  Having no lymph nodes along with the radiation greatly increases my chance for it, but with maintenance it seems to be kept under control with occasional very minor swelling by my tricep.  I also have to wear a compression sleeve most days, but this is manageable. 

I have to say that family and friends by your side are essential to recovery and my faith has helped me to cope with things out of my control.  The internet, although helpful for a lot of things can be harmful to people researching disease, so use caution.  These days when I lie in bed and say my prayers, I say “I’m not gonna die today and I’m not gonna die this year. 

To anyone entering, dealing with or living with this type of cancer, Id say to keep your head up, don’t ever give up and fight with all of your heart.  God bless the victims and their families dealing with this disease.

Neil Philip Langevin

Wed, 2018-01-10


neilarama2017 - (4/1/2018 - 12:00pm)

7 months into treatment with Nivo, doing well.  All scans are clear up to this point.  Still getting pimples and very minor rashes.  I was getting headaches in my temples for a few months (Tylonol helped) aparently this is most likely due to Nivo enlarging the pituitary gland.  So that has now settled down and things are going well.  Wish you all the best.

neilarama2017 - (1/22/2019 - 10:26am)

So it's been a year and a half since my diagnosis.  After surgery to remove lymph nodes, a month of radiation and 1 year on Opdivo.  The Opdivo should have run it's course and have been out of my system since about November.  My year and a half scans have come back free and clear.  Doc says that this reduces my chance of it returning in half, so from 40-50% to 20-25% plus the Opdivo should knock that number in half.  Its been a long ride so far, but I really can't complain.  Im so greatful for the care and attention from everyone at Dana Farber.  Thank you all so very much.