Treatment #1 ~ 3 month regimen of Oxaliplatin and Capecitabine ~ is DONE!!!!!! Take that adenocarcinoma ex-goblet cell carcinoid!

Burying the lead may provide good story telling, but is unkind to dear ones, so... YESTERDAY WENT AS WELL AS COULD BE EXPECTED!!  And... Treatment #1 is DONE!!!  

Here's the tale:

Up, not quite at the butt crack of dawn, as our appointment was at 0830.  Routine was much like my trial in Tampa.  Check in at office.  Lab drawn.  (Folks in lab are very nice and good at what they do.  All labs thus far have been done with only one stick.  B has bonded with another uxorious husband who works there - and yes, he shared the word and the sentiment!)  Wait a bit.  Vital signs collected.  You see the doc.  Then on to the treatment room with Medical Meerkat Morris on hyper alert!!!  You know those cute little watchful weasel-like creatures in Africa?  Though I think B has only one call:  "BARK"!!

Much like the "CRU" (Yep.  In Tampa the treatment room was labeled with a big sign that read "Clinical Research Unit"!!!  Just a portion of the whole experience that contributed to my belief that I was part of the "Rats of NIMH' while being a rattie!!), the treatment room here consists of lots of fairly comfortable recliners, most with an ever so comfy straight chair sitting alongside, encircling two nursing stations in a large open room.  There are at least 3 similar rooms, as best I could tell, and all were packed!!  Way too many peeps needing cancer care!!!!!

The nurses were impressive.  They were all attentive, knew what they were talking about, sought help from others when they needed it, were the right balance of compassion and humor, and demonstrated some of the best team work I have observed anywhere!!!!  Since I was new, my nurse spent a great deal of time going over a packet of materials on my drug, the process, side effects, when to call, who to call, and everything else you can think of.  She answered all our questions.  Was attentive to the reactions I had had to phenergan and zofran...as those are drugs they administer frequently and routinely.  Time consuming, but super important.

She was alarmed at my "limited" veins and "hoped I had enough to get through my 4 doses".  I don't see them that way...but the one doing the sticking has the deciding vote.  I think the scar on my left forearm startled her, however, Oxaliplatin is caustic, variously described as a "vesicant" or an "irritant" depending the source.  Bottom line - it is rough on veins.  Because of that, they will not start your IV in your hand or antecubital (inner aspect of elbow).  At any rate, IV going first stick.  Fluids started, followed by decadron, and then Aprepitant (brand name - emend) as pre-meds to help prevent side effects, specifically nausea and vomiting.  By the way, the same med for use in dogs is a ton cheaper and named "Cerenia".  I like the serene connotation, there!!!

There is an in-house pharmacy.  No meds are ready when you arrive.  They start making up your chemo cocktail once the doc gives the go-ahead - as there may be a dose reduction, a med held, shelf-life to be considered, etc.  So, you wait.  In my case, that is actually good, since per our reading, the aprepitant should be given about an hour before chemo to work best.  Not sure we waited a full hour, but it was at least 30 minutes.

You can bring snacks.  B had me set with peanut butter, crackers, and green ginger tea.  A church group came by offering chips, sandwiches and water - FREE - to patients and staff!  How nice is that?  Now THAT'S what Jesus would do!!!!  You are advised to eat before the infusion.  And while the thought of eating before getting something that can making you throw up seems nonsensical and yucky to me, since they say things go better if NOT taken on an empty stomach, I did as I was told, having Cheerios with banana and milk, tea and toast for breakfast before leaving home.

My arm started burning near the IV site as soon as the Oxaliplatin was started.  The nurse advised me that this was expected, having already told me initially that it was going to burn all the way up my vein which would likely be hard and unusable at my next visit.  She shared that they use a small bore needle so that the catheter won't block the vessel entirely, allowing normal blood flow to help dilute the chemo.  She also ran IVF (fluid) simultaneously, to dilute the chemo further.  That said, it proceeded to get worse indeed.  B wanted me to tell the nurses about it...but I figured - THEY JUST SAID IT WAS GOING TO BURN!!!  However, as the pain and the Medical Meerkat became more intense, I did talk to them.  That got me a little heating pad for my arm and a decreased chemo rate with an increased IVF rate...which they maintained at a total of 500 ml/h!  That's a lot y'all!!!  Anyhow, those changes helped a bit, although the horse was already out of the barn!!  Yes.  B was right.  I'll ask sooner next time.  Now I know there are interventions!!!!

About an hour into the chemo infusion I started feeling a bit queasy.  As I already mentioned, I had already been given decadron and aprepitant for nausea.  However, nausea with this drug comes in two stages.  The acute phase that starts from infusion and lasts about 24 hours or so and is caused by direct effect of the med on the GI tract.  Meds to treat that phase are:  decadron or zofran and phenergan!  The last two being drugs I had an unfortunate reaction to!!  The second stage of nausea is reported to last up to 4 - 5 days, with symptoms starting on day two, and is caused by the chemo's effect on the central nervous system specifically at vomiting centers in the brain.  Drugs that help with this stage are:  Aprepitant, which as luck would have it, one IV dose lasts about 120 h.  Now, apart from the aprepitant you could continue the zofran, decadron, and phenergan as needed for nausea or vomiting.  For me and my weirdness, we have available:  decadron, ativan, and Marinol to use as needed at home.  I am also sipping a lot of ginger tea and taking a capsule of ginger each morning.  All that to say, B slipped out to the car and got me a Marinol.  However, I think it is one of those things it is best to stay ahead of than to chase!!!  By the end of the infusion, nausea hit like an all too familiar wall.

The ride home was a little tricky, but I manged to avoid using B's nifty emesis basin.

Home around 2pm.  Had cramping and diarrhea.  Washed my face. Napped for about 2 hours.  I woke feeling much better.  Marinol finally kicked in while napping.  Felt a bit goofy, but hey, it was better than feeling sick!  Wanted to wash my face, but on touching tepid, room temperature water my fingers went all jingy jangy!  That was weird.  Warm water was fine.  My arm was still really painful, both within and without.  I'm pretty convinced that the injury was two fold.  Yes, there is deep pain from the irritant that is Oxaliplatin.  But my IV rate was so rapid that the whole arm became very cold.  Given the sensations I'm experiencing in that area, I think exposure to the cold  infusion triggered neuropathies as well.

Anyhow, I snacked on various things...until B was afraid for me to eat much more lest I get sick.  He said I had the munchies from the Marinol.  Whatever, party pooper!!!  Got some pretty good sleep during my usual 2 hour increments through the night.  Was up for a bit...probably due to the decadron.  But, not bad considering.

This morning I started the oral drug, Capecitabine.  It has such a high incidence of diarrhea and painful redness and irritation to palms and soles as side effects that it arrives with lomotil and a thick skin balm!!  No diarrhea today.  Just took my second dose of the day about an hour ago.  No horrible problems yet.

A bit tired and weak all day.  I've eaten fairly well.  Had only some queasiness off and on.  Nothing to complain of considering.  The arm pain is gradually improving.  The neuropathies are most noticeable to my fingers.  I've hit a ton of wrong keys while typing this.  But warmth (Roo and B got me some heated slippers and gloves!  I think I've made it clear I am indeed spoiled!!) helps rapidly.  It has not been painful, exactly...just weird shock like sensations with a deceased ability to manipulate things the way you otherwise might.  Did acquire another weird, known side effect - pain in your jaw when you bite down on something...even if it's soft!!  Once you bite down on both sides, the pain is pretty much gone for that round.  But, it has recurred with each meal so far.  My throat feels a little odd, but doesn't hurt.

So...as I said before.  There have been some 'interesting moments'!!!  But, since they were mostly limited to 'moments', it was much more manageable than it could have been.  I have to have labs checked weekly on Mondays.  I think if I had taken Marinol before the infusion, I may have been able to avoid the worst of the nausea I experienced, so we may check and see if that is what we should do next time.  It has been made pretty clear that side effects are cumulative with these drugs.  Still,  overall, thus far....things are going far better than I feared!!!

PERSONAL NOTE (As though I could write another kind!!!!):  I hope very much that the changed tenor of some of my posts are not perceived to be as whiny as I sometimes feel they are!  I have no desire to bemoan my fate, act as though I am enduring something beyond that which zillions of folks are undergoing daily (especially when in truth, ever so many people across the globe are dealing with struggles and pain far greater than mine!!), or seek undue sympathy.
My rationale for this blog and what I share follows:

• I have ALWAYS worked to keep my posts honest.  
• Writing helps me plow through my thoughts and experiences.
• I like telling stories.
• About a year into this endeavor, I discovered folks with melanoma were desperate for information!!!  Immunotherapy was new! Finding info from someone else marching through the trenches was valuable to others!! I was quizzed:  "How is it administered?  How did you feel?  Were there side effects?  What did you do?  How are your scans?  What do the doctors say?"  Data didn't really exist.  Access to available data was limited.  Viola'!!!  I could help fill that void!  
• Through those efforts I feel that I have done a bit of good for at least some melanoma patients and their families.  
• Whatever I have or haven't been able to provide, I know I have received far more than I have given!!  I have gained support and love from dear ones as well as new folks across the globe, and made wonderful dear friends I would have never known otherwise.
• Given that experience and my seamless transition to a new, even rarer cancer with ZERO data in the way of what works for treatment - well, I think you can see where I'm heading!!  I don't mean to drone on about misery and side effects...but knowing what to expect is important to me when looking to jump off into this mess, so I figure other inquiring minds will want to know.  
• Far flung peeps still express their love and desire to know what is going on, so blogging is an easy way to keep folks apprised. 
• And finally, because a girl has to have fun ~ sewing, cooking, and music ~ can't be left out!  Even better, sewing posts have allowed me to meet some of the most incredible, honest, life embracing, human-KIND, politically active and culturally aware, wise, open, intelligent, creative women who - yeah - also sew amazing garments.  It. Has. Been. Awesome.

This run-on explanation is likely unnecessary.  Headings of posts should help you if you are only interested in portions of my jabberings!  Sew Chaotically! - heads sewing posts.  "Melanoma", "carcinoid", or drug names are descriptors as well, though good ol' appendiceal carcinoid will be listed in titles about my current crazy, so that interested peeps may be able gain access to them.

When critiquing writing for family and friends...at THEIR request!!!....I frequently fuss if they are a Babylonian!!!  Just look at this perfect example!!  I've babbled on and babbled on!!!
Much love and thanks for your constant love, support and understanding.  - les