Nathan Calhoun's Blog

There is no sign of cancer anywhere

After my last two rounds of IL-2, I had to wait for 4 weeks to get my scans done and see where we stood with treatment.  My last 2 rounds were by far, the most difficult of the treatment.  Even now, a month later, I’m still struggling with side effects.  I wanted to wait to update live life loud, until after I got my results back.

But, it was all worth it.  My scans came back great!  I had a complete response and there is no sign of cancer anywhere at this time.  The doctors were incredibly optimistic, and somewhat shocked at the results.  At this time, I am slowly getting back to the real world, which has proved harder than I imagined.  I do have to report back to NIH 3 times per year for scans so I’ll continuously update LLL with results.

I’ve been spending time at the Gilda House of Louisville and it’s been great.  I meet and talk with other patients/survivors and share my story.  Unfortunately, with stage 4 melanoma there are not a lot of success stories, so I’m happy to offer my story, whenever I can.  I do feel a lot of “survivor guilt” but Gilda House has a huge support group for that.  I think all cancer survivors deal with that in some form.

A lot of people have asked about my music plans.  Music is going great.  I’ve gotten together with my old voice coach, and started guitar lessons with one of my favorite guitar players in Louisville.  I’m meeting with them weekly and writing a lot of material.  I’ve also started rehearsing with a great band here in Louisville.  I plan to start performing again next month.  Also, a recording engineer reproduced a live television appearance Andy Childs (saxophone) and I did last Spring and put it on a cd.  It can be purchased at Ear-x-tacy music.  Or, drop me an e-mail and I can mail it out.  Even though I’m staying busy with music here in Louisville, I do plan to move back down south once I get back on my feet.

Thanks to everyone who visited this site, sent their prayers, etc.  You were all part of my success story more than you can ever realize.  I’ll update this site with new info and look forward to giving back now!

Thanks again,
Nathan Calhoun

Treatment working, but not out of the woods

I had my scans done yesterday and found out today that my tumors have had a partial response to Interleukin 2.  This is good news.  Only 14 percent of melanoma patients have any response, so we’re moving in the right direction.  I’m immediately starting IL2 now and when these last 2 rounds are over, we’ll reevaluate treatment.  Some tumors have gotten smaller and some have totally disappeared.  I’m hoping for complete response at the next scan!  In about 6 weeks I should know the final outcome.
Even though I’m not cancer free yet, I’m kickin some ass thanks to NIH and everyone’s support and prayers, etc.  Thank you for everything! 

I’ll update you after this treatment is over.  I’m in the bed right now and get my first injection in 5 hours.  Even though it’s working, I’m not looking forward to this round of IL2.  Nothing worth while comes easy though, right?  Especially a second chance to live!

Sunday, August 30th

I reported back for my second round of Interleukin and felt pretty confident since I did so well with the first treatment.  Unfortunately, I was completely wrong.  My first round of Interleukin I actually slept through the first 4 injections.  I thought it was just because I was tough.  :)  Not the case.

I found out the hard way during the second round your body recognizes the chemicals immediately and starts the side effects asap.

On the very first injection, I was violently sick.  Each injection made me worse and worse.  By the 4th injection, I was ready to stop.  The inside of my mouth felt like it was on fire and I started seeing images that weren’t there.

The team of doctors came in and we collectively decided to rest through the next 8 hour treatment and see how I felt when I woke up.

When I woke, I did feel better and decided to continue with treatment.  I was able to get through 6 injections total which is great I was told.  They stopped them due to severe hallucinations.  I can remember watching television and the sides of the tv were falling to the ground like a waterfall.  When they realized I was watching that instead of the tv, they stopped treatment.

Even though this treatment is hard, side effects are always a good sign that the treatment is working!  This recovery has been very difficult with my energy levels, nausea, and dizziness.  Physically, I’m down 30lbs, but I can share clothes with my 16 year old brother at least.  :)

I go back on august 31st for scans to find out if this is working or not.  If it is, I immediately go into another round of Interleukin.  If it’s not working, we set a date for the big treatment we initially discussed.  Please keep your fingers crossed, keep praying, keep putting those good vibes out there, whatever it is your into.  It’s all working!

I will post immediately when I get the results!

Also, a special thanks from Elizabeth and I, to Abby, Sean, Andy, Jessica, and everyone involved in the benefit tonight in Charleston.  I can’t tell you what it means to have friends helping me through this that I haven’t seen in months, 10 hours away at that! 

Nathan

Friday, July 17th

Just got home from my first cycle of Interleukin 2 and I’m recovering well.  Here’s how the treatment went.

Day 1
They put a port inside my arm so I don’t have to receive multiple injections daily.  They have to take 12 tubes of blood each morning and the interleukin can destroy veins.  So, I have a line that enters through my bicep and goes all the way to my heart for immediate entrance into the bloodstream.  I have to keep it in for 2 months but it really doesn’t bother me.  It just has to be flushed everyday and I can hide it under t-shirts.  Can’t really get it wet though.

Day 2
My first interleukin injection was at 7am.  It’s so toxic that the nurses wore thick gloves to handle it and whomever touched it had to sign off on a sheet.  It wasn’t in a bag like my other meds, it was a huge bottle that they hung for 15 minutes.  I was sort of relieved when I started it because the anticipation was killing me! 
After a few hours I started to feel like I had a sever flu.  I ended up sleeping most of the day.  They continued this every 12 hours.

Day 3
My second day on Interleukin was similar to the first as far as feeling bad.  Flu symptoms, horrible fatigue, etc.  I did start noticing water retention on day 2 and my appetite was completely gone.  My skin started bothering me also, like a sunburn.

Day 4
Still not eating, 7 lbs. of water weight, and my skin was very red and dry.  Still hanging in there and sleeping a lot.  My charge nurse told me it would be great if I could sleep through the whole thing.  I agreed!

At 3am on the 4th day, my nurses called into my room and told me to report to the second floor for some procedures.  I got dressed and took my IV pole and headed outside.
I had officially made it to the hallucination part of the treatment.  They stopped me at the door and instructed me back to bed.  It seemed so real because I was awake watching television when it happened.  I wasn’t asleep or dreaming. 
I was happy this was the only hallucination thus far, because I had heard some horror stories about Interleukin 2 and hallucinations.

Day 5
The morning after my hallucinations was awful.  Every side effect seemed to show up at the same time.  My skin hurt more than ever and it was scabbing all over my body, I was vomiting like crazy, and my blood pressure dropped to 86/50.  They made the decision to stop the treatment at that point.  I was disappointed, thinking I had to finish a few more rounds for it to work against the cancer.  I found out that everyone is different in their tolerance and whenever the side effects get severe, it’s done it’s job.  Some men can’t even finish one full round.

Day 6
I have to stay in the hospital for 2 days to recover.  I’m very uncomfortable but glad it’s over for now.  Starting to eat again.

Overall
I’m home now and feeling much better.  I’ve lost 21 lbs. but I’m doing okay.  I go back for another cycle on July 25th.  After my next cycle, I’ll have scans done to see if this is shrinking the tumors.  If it is, I go back for 2 more cycles of Interleukin 2 and hopefully will destroy the rest of the cancer.  After that, I can start getting my life back.
If the Interleukin is not working, I go back in October for the big treatment.  A month in the hospital, radiation, more surgery, etc.  I’m hoping I won’t have to do this. 

Please keep sending your prayers and positive energy my way and lets hope this Interleukin 2 is working!  There’s only a 15% chance but I’m staying positive!

Thanks for everything!

Thursday, July 2nd

Back in treatment.  We collectively decided to start Interleukin 2 on Friday, June 3rd.
Interleukin 2 is by far the most toxic and brutal treatment on the market.  I had to pass a full physical exam, blood work, organ function tests, etc. just to be eligible to do this.   

I will be monitored closely but the common side effects are nausea/vomiting, “rigors” or uncontrollable shivering, hallucinations, extreme flu-like symptoms, etc.  Unfortunately, the internet has been a nightmare with Interleukin 2 research, offering only horror stories.  The suicide rate is even substantial during this treatment.  Crazy! The good thing is that treatment lasts only 5 days maximum, and then I get a week off.  Every side effect eventually reverses itself. 
Even though there’s only a 15% chance this will give me any improvement, my doctor believes that if it does work it may be a cure.  Keep your fingers crossed!
I’ll have my port put in Thursday and Friday treatment will start.  Keep sending me your positive thoughts and prayers.  I truly believe it’s all working! 

Some people wanted an update on how I’m feeling right now…
Overall I still feel alright.   I’m much weaker than before and as of today, I’ve lost 18lbs.  I can hold the guitar for about 20 minutes but the effects of the surgery won’t let me for much longer.  I have written several new songs though!  Elizabeth thinks they’re the best songs yet, but who’s gonna tell someone with cancer his songs suck?  :)  I even have some studio time in Louisville next month if I’m feeling up to it! 

A special thanks to Sean Money for taking time out of his crazy schedule to manage this blog. Writing or typing my experiences for this site is so therapeutic for me. It gives me a sense of communication with my friends, especially in Charleston, during this treatment.  Someone buy Sean a bourbon for me, but save me a seat cause I know this will be over soon!

Thursday, June 18th

Treatment Objective:
I’m back in Baltimore to harvest my stem cells.  I have to hook up to a machine that takes my blood and filters out all of the white cells, then puts the blood back into my body through the other arm.  Probably sounds confusing.  They are taking my white blood cells to use as food for my stem cells, which they will extract later in the week. 
I’m giving myself 2 injections per day to amp up my stem cells, unfortunately it makes me feel like I have the flu.  After putting in a port at the end of the week, they will take the stem cells from my bone marrow and harvest them until my later treatment with chemo.  They feed the stem cells the white cells they extracted earlier in the week to keep them alive.  Crazy stuff!

Overall:
I’m still extremely sore from the previous surgery!  Even though this treatment isn’t as bad as the surgery, it still isn’t fun.  I can’t believe that I’ve been through so much already and haven’t actually “treated” the cancer.  I’m realizing more and more how lucky I am to be here and can’t wait to kick some cancer ass soon. 

I know some of my treament descriptions sounds confusing, please e-mail or comment any questions on the livelifeloud website.  I’m happy to answer or clarify them!

FYI:
I met with my radiology onclogist and found out some interesting stuff I had never heard before.  Because the patients they treat with radiation aren’t typically as young as me, they made it very clear that a common side effect of radiation is sterility.  Weird huh?  I have to meet with someone to discuss the whole “freezing process” if I want to have kids down the line. 
This may be too much information, but I want to share everything I’m faced with, and this was a complete surprise.  If I go through with it, which I probably will, I’ll let you know how the resources were.  I can’t help but think about the movie “Roadtrip” in this situation.   :)
I’m allowed to make these jokes, I have cancer.

Overall Experience

This was by far, the most difficult medical procedure I have endured thus far.  Even though my docs agreed that my recovery was extraordinarily fast, I felt like I was in the hospital forever!  They told me similar surgeries take patients weeks to recover before they can go home.

In a weird way, the severity of this first surgery gives me more hope that something good may come of all this.  This institute is doing everything possible to save my life and I’m excited to fight.  Even though I there’s only an 8% cure rate, I think this is my best shot!  You know I won’t go without a fight!  I’m doing my best to keep my spirits up and truly appreciate the support!

Next appt:

I go to Baltimore on Thursday, the June 18^th to harvest my stem cells.  Not much pain and discomfort with this treatment, but I have to stay for 8 days.  I’ll report back next week when this treatment is over! 

Mon. June 8th

I actually felt an improvement today!  My mobility is better, and the pain is manageable though still high.  I was given the ok to be discharged Tuesday and I am so excited.  I’m not allowed to lift anything over 10lbs for a month or drive for 3 weeks.  This recovery is very slow and at this point, I’m only good to walk around for about an hour.  I can’t wait to go home.

Sun. June 7th

I’m excited my chest tubes are out, but my pain is way up.  I kept it a secret again, scared it may delay my discharge.  I made myself walk and move around, focusing on recovery.  That night they removed the epidural from my back.  They also removed the catheter, which is as bad as you can imagine.  Ouch!

Sat. June 6th

Another sleepless night, but I’m always glad to wake up one day closer to going home.  My pain is still consistently an 8, on a scale of 1 to 10, but I’m walking more.  Can’t really eat, and I’m so sick of these tubes!  My mother and girlfriend are here which helps tremendously.  My throat and lungs are on fire and my back feels like knives are stuck in it.  Kind of makes sense though, considering the chest tubes are doing just that.

I did get some good news today.  I may be able to have the chest tubes taken out later if my recovery continues.

I stretched the truth and said my pain was ok and I was able to have the tubes removed.  Fine by me, the more they take out, the less time I have to stay in the hospital.