Other Side Effects Post-Treatment 1 and Ports

So it's been slightly over 1 week since my first ABVD treatment:

Initially I had virtually no side effects, and I never had the most common side effect: nausea (whooo-hoo! Although I'm sure I'll eventually have it as the side effects of ABVD are cumulative), I did eventually get some nasty side effects later on.

• Nausea: I wouldn't exactly describe what I have as nausea, it's not really even uncomfortable, and it’s always just kind of “there.”  It's a weird "feeling full" feeling even when I'm I haven't eaten anything. I have not been taking my anti-nausea meds though because of this (yet). For the Newly Diagnosed: You need to maintain your weight!  Eat more calories and protein, and try to exercise a little on the week you feel good.  Some people actually gain weight while on ABVD… so, uh, exercise.  Seriously though: eat anything you want, as long as you can keep it down.  When else in your adult life are you going to get to eat ice cream for most of your meals?

• Jaw Pain:  After about 3 days, I got this.  It’s a side effect of the V in ABVD.  It feels like I've been gnawing on a bit of wood all day, and my jaw was terribly sore.  It lasted for about 4 days, although only the first 2 were “terrible.”  Plain ibuprofen or acetaminophen helped… but not by much.  Luckily, for most people (everyone is different) it usually only happens after the first treatment… BUT not always.

• Salivary Gland Pain:  HOLY HELL. This was the worst.  It started also about 3 days after ABVD, and lasted about 4 ½ days.  It’s a uncommon side effect of treatment, which was probably brought on as my lymph nodes that were affected were on the side of my neck near my jaw.  It felt like virtually anything I put into my mouth- electrified my salivary glands in my mouth- ALL of them, and lasted between 5-10 seconds (which in reality feels like 10 minutes). It slowly faded after about 3 days. I was told as my enlarged lymph nodes are shrinking- this PROBABLY won't happen again  Newly Diagnosed:  If you have this, try eating cold things- ice cream, smoothies with a couple of ice cubes dropped in the blender- it helps.

• Bone Pain:  This is a side effect of the nulasta.  Everyone gets this shot, because ABVD lowers your white blood cell count, and nulasta raises it.  One side effect is bone pain, as there's more activity in your bone marrow, particularly in the larger bones- femurs and pelvis.  Per their super cheesy “woman running though a field of sunny flowers for no reason” commercials, where some guy mutters out the side effects rapidly for 30 seconds- they mention “mild bone pain.”  MILD MY ASS, it felt like an elephant was stomping on my pelvis for 3 straight days.  Newly Diagnosed:  Take Claritin the night before you have to get this shot, seriously somehow it works (or any other sort of histamine).  If you have continued pain: take ibuprofen for this- it made the pain completely go away for me, well for 6-8 hours anyway. Acetaminophen will do nothing. It can cause headaches in people- I think I may have had that, but I chalk it up to skipping having coffee on a couple of days (I’m a horrible coffee fiend). Also for the Newly Diagnosed: Unfortunately… if you have this side effect, you’ll get it most every time you have this shot- which would be the day after EVERY treatment.  Luckily it’s easy to negate the pain.  If you find that ibuprofen and histamines AREN'T working- tell your Doctor or Oncology Nurses (for ANY intolerable pain you have during treatment), they will give you something stronger (which will probably be a narcotic of some sort).  Let your Oncology team know EVERYTHING about how you’re feeling.

• Medical Port Stuff:  Remember when I first had my port accessed?  I sure as hell do.  I asked for analgesic cream to apply to the port (apply 1 hour before getting stuck) so I wouldn't feel like my nurse was running me through with a lance.  I had a routine blood draw yesterday, and asked to have it done on the port to see how the cream worked.  My oncology nurse Mia, agreed to use the port instead of an arm vein to do the blood draw, whenever the port is accessed- the nurse has to suit up with mask, gloves, swab down the port area etc, vs the an arm vein which would take like 5 seconds-  my nurse is a good sport and humored me. They do the whole suiting up because an infection in the port area would be very bad.  The nurse stuck me… and I felt nothing.  Yay!  I wasn't sure if it would work, as I felt no numbness or anything like that, but indeed it did work.

My friend Tom in California sent me this photo.  His wife is French, so she had never had a Twinkie before (?!), so he went out and bought a box while he still could, and shared one with their roommate:

And Side Effects

I don't seem to have the common (and worst) side effect: nausea, which is usually what most people on ABVD treatment get.  I also didn't seem to have the bone pain from my nulasta shot either.  However what I do seem to have:

Jaw Pain + Salivary Gland Pain.  Not fun.

Those symptoms started late Saturday night, and Sunday all day- all the way to today.  Although the worst of it seemed to have been Sunday.  

The jaw pain comes and goes, as does the salivary gland pain- which is the worst.  It feels like a long sharp stinging that lasts 5-10 seconds, pretty much 50% of the time when I stick any sort of food in my mouth (doesn't seem to matter what).  

I'm told this rarely happens (lucky me!), and usually passes 2-4 days after treatment, and for most people only happens after their first treatment.

One of the things to help minimize the pain, is to suck on hard candy of all things.  Which does in fact help a little:

So while I'm eating a breakfast burrito... I'll have a nice subtle hint of peppermint in the background.  I hear that goes well with bacon.....

A few strays need trimming

Chemo Treatment 1 of 8 Done + More for Newly Diagnosed + My Last Sushi Dinner

I had my first of 8 ABVD Chemo Treatments yesterday Nov 8th 2012 Thursday.  I started around 9:30, Wendy came with me for half of the appointment before having to leave for work. I was outta there about 2:00 PM.

It started out with a short visit to my oncologist, to answer any questions I might have. I've read virtually everything to know about everything on my disease, and he knows that as well- so we have a very good Dr. patient relationship.  I had 2:

1. Q: My next treatment is on Thanksgiving. A: Well!  How's Wednesday the day before?  ME: Sounds good!
2. Q: The only enlarged lymph node I have that is giving me problems, is a large 2" one on my neck on the corner of my jaw, it's become significantly bigger over the last 2 weeks.  When will is start to go down in size?   A: How's tomorrow sound?*  ME: Really?!  Dr: Yes, the cancer is very sensitive to drugs, and the drugs work well.  It will most certainly not be visible by the 2nd treatment.

* Sure enough, less than 24 hours after my 1st chemo treatment ended, that 2" grown is now about 50% it's previous size.  I no longer have the pushing nerve pain, and my jaw bone isn't hitting it from eating or talking.  Relief at last!

For Newly Diagnosed People:  When you oncologist or oncology nurse says "if you run a fever over 100.5°F" or ANY of the adverse side effects they tell you about and say "call us immediately day or night," YOU DO THAT.  Don't think "oh I don't want to bother them, it's the middle of the night"- SHUT UP FOOL, and CALL THEM. DON'T WAIT IDIOT.

My treatment lasted about 3 1/2 hours. I got a Rx for about 4 meds that I picked up after I was done.

Giant (very cozy) recliner

 Wendy waited in her (not as cozy as mine) waiting chair

Everything went down in this order:

• Newly Diagnosed:  EAT BREAKFAST.  Don't, you know be stupid and eat a grand slam or any other crap like that, but eat a modest breakfast, some toast, coffee, juice.  Just don't go on an empty stomach. I had 2 slices of toast and coffee.  OH:  And EAT the night before, something that will sit well in your stomach.  Also, bring someone with you if you're nervous or scared.  My girlfriend Wendy came for most of mine.  And honestly- it's nice to have someone there, well because you might get bored- it is 3 1/2 hours after all.
• Talk with the Doc:  My bone marrow was clean, and I am Stage 2A (early, no disease in organs or bones, only in 2 regions of lymph nodes on one side of the diaphragm, and no outward usual symptoms). Newly Diagnosed: ASK ANYTHING YOU WANT. THAT'S WHY YOU'RE TALKING TO HIM/HER.
• If you have a port:  Instead of doing and IV catheter into your arm, they'll "access" it.  I caught a glimpse of the needle used to access the port and I made a face something close to this:

It's a VERY thick needle.  I don't mind being poked by needles at all actually.   As long as I don't have to look at it I'm fine, some slight discomfort- and I'm good to go. I have a VERY good tolerance for pain. Let me tell you something:  That fucker HURT.  Here's the conversation that went down with my nurse (who is seriously FANTASTIC, and I wouldn't trade her for anything):

Nurse:  I'll push this needle though your chest into the port, flush with saline, and draw blood a few times.  If you don't like the sensation  we can get you an Rx for an analgesic cream you can put on 1 hour before, let me know if that's something you want. However the first time you have to go with out.  Ready?

Me:  Yep!

Nurse: (pushes needle into my chest and into the port)

Me: (!!!!)

Nurse: How was that?

Me: I would like an Rx for the analgesic cream please. 

• Get your anti-nausea meds injected.**  I got about 3, including a steroid and a ton of saline. You're gunna pee a LOT during treatment.  Get a couple of vials of blood drawn.
• Then you begin the ABVD treatment I posted last about and the possible side effects. As I said then, and I'm going to say now for the Newly Diagnosed:  EVERYONE is different, not everyone will have the same side effects.  Some people have hardly anything, some people fell like hell from all of it.  You will know after your first appointment.  After then plan accordingly.  Take note of what I said to bring with you on my previous post- as a just in case, and for WHATEVER REASON, if you have pain or discomfort- SAY something to the nurse, ALWAYS.
• For MY particular treatment, the first drug, A= It was supposed to put a horrible taste in my mouth, and turn my urine bright red.  NONE of those thing happened. No bad taste at all.  Nothing.  And my urine... was more of a Rosé color. B +V = NOTHING at all. The dreaded D=  Not a thing.  Slight "discomfort" in my stomach, but really that was even a stretch.  
• If you have a port: It's cleaned  and "plugged" with heparin.  If you didn't get a port- you really should, in about 2 months you're veins are going to be as hard as slim jim's (that's being dramatic, but your veins will not thank you, and it makes your nurses unhappy trying to find a good place to place the IV into a vein that isn't over used).
• Then you make an appointment for your next ABVD treatment, which is always 14 days after (or 13 days for me because of Turkey Day).  You also need to come back the following day for a quick 15 min appointment for a Nulasta shot to increase your white blood cell production for the next 2 weeks as ABVD will lower your white cell count and general immune system (Newly Diagnosed: That means no more 3 second rule for dropped food- STOP that, and wash your hands preferably with anti-bacterial soap).  Another appointment (usually one week after your 1st treatment, and somewhere in the middle of the whole thing) is a blood work test, a quick one- just to see how you're reacting to the Chemo drugs.  Then you are free to go, well free to go pick up your anti-nausea meds.

So MY symptoms after my first ABVD Chemotherapy treatment: 

None.  Nothing at all.  No bad taste. Nothing. Only Rosé colored pee (sorry no pics, you'll have to take my word on that). Some light tingling in my stomach. There's a slight pressure I feel in my chest, the nurses told me, like the growth on my neck shrinking, the nodes in my chest are doing the same- and I'm feeling the activity happening there. Otherwise: nadda.

** The only reaction I have during my entire treatment session was to Ativan, the very first thing I got, an anti-nausea and anti-anxiety med that was pushed via syringe.  It made me a little drowsy as it's supposed to, but after a couple of minutes I got a burning sensation in my chest, face got flushed and heart started racing (because of what was going on) and my breathing was shallow. It only lasted for less than a minute, and was gone. I told the nurse this, and she was surprised, as normally there's only the slight drowsiness felling that's supposed to happen.  She told me in the future rather than pushing it, they'll use the IV drip machine to slowly administer it, and it should take care of that.

The night before; Wendy, Sheri (Wendy's roommate and sister if you didn't know) and I went out for my last "pre-chemo day" dinner at O'shan Sushi.  Because of my lowered immune system during treatment... I can't eat raw fish or shell fish.  I LOVE ME SOME DAMN SUSHI TOO.  I can eat cooked "sushi" (yeah that's right I put it in quotes), but I love me some Sashimi.

I forgot to take a photo when it arrived, and we just started chowing down

I love me some unfiltered sake as well

Oh- this is For Jessica Wimbley. (FYI her art website is currently NOT safe for work. She's just like that ;-)  so careful not to click the link on her name to her art website at work or church or prison or something like that- the Seattle Public Library is A-OK though). 

She knows what this is about:

Drugs! ABVD Chemo Guide for the Newly Diagnosed

I start ABVD Chemotherapy tomorrow, for my first treatment in cycle 1.  I have 4 cycles (4 months), which is 2 treatments per cycle every 2 weeks.  2 week break after chemo. Followed up by 4 weeks of radiation treatments.

Chemotherapy is the term for drugs used to treat cancer, but depending on what type of cancer you have- the drugs (and side effects) vary greatly.  ABVD is the typical chemotherapy regiment used in treating Hodgkin's Lymphoma. 

If you're newly diagnosed, you probably found this site doing a search, and have no idea what chemotherapy entails, and what you do know unfortunately comes either from TV, or seeing a family member go through it with a different form of cancer- no one wants to go through chemo  but ABVD is not a "waste away" type of regiment, it won't make you a bed ridden mess who can't see sunlight for 8 months. No one wants cancer, but the cancer you have- if you had to pick one, it's the one to have.  The treatment side effects are relatively minimal compared to other chemo treatments, and the success rate is very high.  Let me go in depth into what it is; ABVD stands for the names of the drugs and the order they're given in (hence why they're not in alphabetical order):

Technically- there's 6 drugs +  a couple of tests + things to do before starting treatment;

• Sit in a cozy reclined leather chair.  As it typically takes 3 1/2 hours to administer ABVD.  I'll have plenty of snacks (sour candy!), lunch (or breakfast depending on the time of day you get treatment), water (ALWAYS bring water with you), even coffee (I'm a coffee fiend), books, and a smart phone with internet- so I shouldn't be bored. I start at 10 AM, and should be done about 1:30 PM. 

• Blood Tests: Since I have that easily accessible port in my chest, they will begin with doing a routine blood draw.  To check for a multitude of things, mainly: platelets, red blood cell levels, white blood cells, and a few other tests.  Mainly to see how I'm responding to treatment side effects and getting a baseline before treatment starts.

• Pegfilgrastim:   Is a drug to stimulate white blood cell growth in the body, to fight infections etc, as during the ABVD treatment, the immune system becomes weakened (which is how it works).  Typically given via IV during treatment.

• Anti Nausea Medication:  There's a couple of drugs I could possibly get.  As one of the major side effects of ABVD is nausea. ABVD targets fast growing cells within the body and kills them- which is basically the cancer cells.  However- other "fast growing" cells within the body are hair cells (why hair falls out with chemotherapy), and stomach lining which causes nausea. Also- taking anti nausea drugs AFTER you're nauseated isn't the way that works, it needs to be taken before (if you were wondering).

• Adriamycin: The nurse "pushes" it, meaning it's slowly injected into my IV port.  It's BRIGHT red, and you can imagine what color my urine will turn after that, which I'm told causes no problems- other than shock value (don't worry I won't post pictures of that).  It's the drug that hits the cancers cells the hardest, and is used in many other treatments of cancer like breast cancer.  One of the side effects of it- it will give you a bad taste in your mouth.  MANY people have told me: do NOT eat anything you like on treatment day, or a couple of days after- as it will taste horrible, and you will forever associate that food with chemo.  Many people have ruined their favorite foods for life because they didn't take that advice.  So newly-diagnosed-person: eat things you don't care about the day of and 2 or so days after until you feel better.  Seriously.  During treatment, bring a hard sour candy to suck on- helps with the taste.

• Bleomycin: or “Bleo” as people call it. It's also pushed via syringe. It's clear, and VERY rarely people have an allergic reaction to it, so the nurses will test out a small dose to see if that's the case before proceeding. It can cause some pulmonary lung problems in some people, but that's why I'll have constant pulmonary function test to see if my lungs are okay during treatment. My anesthesiologist was impressed by my lung capacity during my lymph node biopsy, usually they have you count down from 10, I never got there as I took a DEEP breathe and was out immediately (I was told he giggled at that, as it doesn't happen often)- so I'm pretty healthy and my lungs are great.

• Vinblastine:  Most people do not have a problem with it, and it's also pushed through a syringe.  It has no side effects during administration.  It could have possible side effects to the nerves later down the line, but it's the "easiest" to take.

• Dacarbazine: This is the worst (and saved for last) drug to be administered. It's administered via an IV drip, and takes at least an hour to administer fully. However I have a port, so it should speed things along. This is what causes the nausea. Having that anti nausea medicine will help GREATLY with this drug.

Also new people: If you are given the choice of a port or no-port, take the port. Sure it's weird having a thing in your chest, but your arm veins will thank you, the nurses will thank you, and it will speed up the whole process in general- as no one wants chemo treatments to be longer than they have to be.

After treatment- you're free to go!  And yes, you/I are certainly capable of driving after.  The night of though, and about 2-4 days after:  You'll/I'll have nausea, fatigue  because of the lowered white blood cells- once the start generating again after those few days, you'll start to feel better.  Think of it as "one week down, one week up" cycle.  Because when you're recovered from treatment, it's time for the next one.  As treatments go on, the "down" lingers a little longer.  After 6-8 treatments many patients hit a wall, however- I only have 8 treatments, so I shouldn't be too bad off.  Oh yes- your/my hair will fall out slowly over treatment.  Many people shave their heads, not because it all falls out- but because they're shedding everywhere and look mangy, in other words: it's annoying to leave it in and better to just chop it.  I'll post about hair loss in the future (I plan on getting mine cut very short soon).   It should be mentioned- that ALL of you hair will thin, eyebrows, eye lashes- the whole bit.

For me personally- I'm healthy (all of my blood levels are in the exact median- whoo-hoo!) and young (33... that's "young!"), so my side effects from treatment shouldn't be too rough, and side effects should be minimal. However: EVERYONE is different, and side effects are too.  You/I will just have to see how it goes during treatment.  Age and general health are key as well.

Oh and a cat.  This is Elli (Miles is the other one).  She's my... "simple cat."  Here she is doing her Jabba impersonation:

a rare small political post

I'm not a democrat, and I most certainly not a Republican, however:

I always have a great amount of levity in my demeanor (like you already didn't know that), but a short break of serious time: 

I have wonderful health care with my job (because I work for the government), but for many years, I didn't have health insurance at all of any sort.  If Romney were elected, he vowed to repeal the Patient Protection and Affordable Care Act (or "Obamacare" if you're intentionally uninformed and ignorant).  If I did not have the health insurance I currently possess, given my current condition, I would most certainly either be in debt several $100K+, or which is most likely; die in a few years because of my condition as I would have no access to preventative care, and not caught my cancer in an early stage like I have.  It's not "communist-fascist" (America is apparently the only place where it's even possible to be both of those things simultaneously) to provide for the well being and infrastructure of the nations citizens.  

Also: Bill O'Riley is a fool and Fox News is trash.



Oh and a cat:

Chemo Pushed Back 1 Week = Free Day to Play

So my first Chemotherapy appointment was scheduled for Nov 1st, but got pushed back one week to Nov 8th Thursday.  Again as my doctor told me: 100% not a problem to delay 1 week.

So on the day I was expecting to hang out in a chair for 3 hours attached to IV's, I got a free day with nothing planned, and Wendy unrelated- also had the day off.  So we went cursing in Issaquah for chocolate, Afghan food, and Twin Peaks Reliving (without creepy Bob):

Swiss Chalet (in Issaquah)

Chocolate!

Swiss nose-picking garden gnome 

I have terrible out takes 

Wendy's Hair Head Band 

Audrey wasn't at the lodge, we checked

This week though (and next post)- I'll start my bi-weekly schedule of events pre-chemo treatment; exercise plan, gross stuff I'll eat, and my hibernation cycle.  

Oh yeah, I also got a small couch- I'm a big boy now (and I'll probably be spending quite a bit of time on it in the coming months with treatment).  I also figured out how to keep the cats from destroying it as well- box fort: