First Immunotherapy Treatment

I had a journal entry nearly ready to post but didn’t quite get it finished before having my first Keytruda treatment.  It was a scathing journal entry about the emotional state suffered by so many having to endure terminal illnesses and extremely critical of those who promise you help in one form or another but never follow through.  I may still post it in the near future… there are some who will not be happy with what I have to say, but sometimes… it just needs to be said.

In the meantime… I will bring you up to date on my current unwell-being and the first immunotherapy treatment.  I arrived at the clinic around 7:45 and checked in.  They told me to have a seat in the waiting room.  They came into the room to have me sign insurance papers for the treatment, but they had the wrong insurance.  Not off to a good start.

However… it wasn’t long before they came and got me, leading me to a treatment room well down the hall but right across from the nurse’s station.  As I followed well behind the fast walking nurse to my room, I observed several others receiving treatment in other rooms, all of which were sitting in recliners… some eating and drinking… some appearing to be asleep.  When we reached my room, they told me to climb up on the bed.  What?  I thought I was going to be sitting in a recliner, I said rather jokingly.  The nurse responded by saying, they want you in the bed for the first treatment in case of serious reactions.  They watch you very closely on the first treatment.  Not off to a good start for someone already having serious doubts as to whether to have the treatment or not.

They asked a million questions including my date of birth about 50 times.  They told me that I would get tired of them asking my dob but that is how they make sure you are alert and thinking properly.  Not off to a good start.

After they got me hooked up to an IV with a saline drip and the Immuno drug hung on the IV rack, they call for a verifier.  The verifier comes in, checks who you are, if they have the correct drug ready to go and… yes… your dob.  Everything was verified.

They started administering the Keytruda and said it should only take about thirty minutes for the treatment.  Now that was something ‘good’ that I was happy to hear.  About 10 minutes into the procedure, I got a very strange taste in my mouth, but not so bad that I brought it to the nurses attention and it was helped by a sip or two of coffee.  About 15 minutes into the procedure I became extremely cold and had to ask for a blanked.  Neither of these were listed as side effects on the wonderful Google.  They brought me a very pre-warmed blanket and it was nice to get warm again.

At about the same time that I became cold, I started feeling a bit goofy… I can’t say really that I was light headed, but more of just feeling stupid.  I know that’s a strange way to express it, but that’s the way I felt… just a bit stupid.  That feeling continued from that point to… well… maybe a bit of it still lingering… or perhaps I’ve been dealing with cancer so long and had so many radiation treatments that I’m just becoming brainless.

I was truly grateful to have endured the session and been able to come home afterward.  I had to pick up my new thyroid medication (yes… that’s messed up too… possibly due to radiation as well) on the way home, but I was so very thankful to get home.  I was extremely tired already and running a bit of a low grade fever, so the rest of that day (Christmas Eve) was pretty well wasted… as was the next day.  Now I’m into the third day and still very fatigued feeling, running a bit of fever most of the day while worsening at night.  The pain levels have increased, particularly in the upper right side of the chest around to the side of the chest wall beneath the arm.  I get very light headed whenever I get up from sitting or from lying down or stooping or any other position that I shouldn’t be in.  I have to find the nearest place to sit down quickly or I’ll be horizontal in the floor.  Not a pleasant feeling at all.  I haven’t been very active in several years, but this is becoming quite ridiculous.

I’m hopeful that I will feel like editing and posting the journal entry I have waiting in the files of the more emotional and frustrating consequences of attempting to live with a deadly disease.  It might not please too many who wander here… but it will be good for me to let it out… if you know what I mean.

Today… If I can find the energy to make the walk to the car and then walk inside the clinic… it’s off to the cardiologist so that I can give him something to sit at the computer and grunt about.  I’m not sure why I’m even going.

Old Shoe

A most beautiful day to all of you… stay well!

Michael33

Pondering Consequences

Oliver 2

Well… where to begin?  I suppose this update should include the worsening of symptoms.  I won’t go into detail, but I’m sure most of you can figure those out from previous posts.  The oncology doc called on Monday, sounding a bit excited about the results from the whatever test she was having done to see if I might qualify for immunotherapy.  I met with her on Thursday and as it turns out… I do.  She sort of explained the process, touched lightly on the side effects and said that as soon as they get the insurance to approve the treatment, we would get started.  She then turned me over to a nurse practitioner who supposedly was going to explain it all to me in detail.  She did not.  She had me sign a consent form and turned me over to another nurse to show me around the area where the torture… umm… I mean treatment… will be done.  

What I needed here was time to think.  They were all very anxious to get started but I was not.  I thought that I would have at least a week or so to think about it all while they dealt with the insurance.  I was wrong again.  They called the same day (Thursday) and said that they had received the approval to start.  They wanted to start on Monday.  I did not.  I told them I had a busy appointment schedule that week (at least partially true… but they don’t really seem to understand… “I want to take some time and think about it”) and asked that we start the following week.  Reluctantly… they agreed.  They then tried to give me a late afternoon appointment.  I refused to take it because I do so poorly in the afternoons and I didn’t want to start this process already feeling poorly.  They reluctantly agreed to give me a morning appointment… told me that the actual dose of meds they will be giving me will take about 30 minutes.  I was excited about that part until… until they started telling me that the ones administering the meds… worked all over the hospital and it depended on how busy they were and that the pharmacy sometimes took a very long time to get the medicine down to them and… and… and… in other words… I would be there for hours… waiting.  My first clue was a rather full waiting room in the treatment area when they were showing me around. 

Okay… none of that is good for business nor for my patience.  If they think that I am going to sit there for hours for a thirty minute treatment without complaining or…. perhaps getting up and going home and telling them to call me when they find the time to treat a dying cancer patient… they would be thinking incorrectly.  That’s just not the right way to treat seriously ill patients.    Another thing wrong with the medical profession… none of them want to hire enough staff to properly care for the patients… but they sure want to keep those patients coming in with their money and their insurance cards.  It’s just like calling Medicare or an insurance company or even a medical care facility when you hear… “Your call is important to us…”  now… if you’ll just stay on the line for the next three hours we might take your call or we might just disconnect you and allow you to start all over… or maybe get so frustrated that you won’t call us back at all.

I don’t really feel like getting deep into the… what’s wrong with the medical profession or about the cost of it all today and I’m sure some of you will be thankful for me omitting my blather of all that.  I will however complain a bit about palliative care.  I asked my oncologist if it was necessary for me to go to palliative care and she replied by saying that “we work as a team.”  I suppose that meant that she wanted me to continue to see them.  So… I went yesterday to see the morticians… umm… I mean the palliative care folks.  I was there for more than an hour and a half and all they did was ask a million questions that I have already answered at the previous appointment and then they prescribed some cough medicine.  What?  I don’t do cough medicine.  Ever!  Of course it will most likely be a very long time before I receive it any way since they are attempting to get it through the VA.  Good luck with that one.  Oh… the nurse came back in the room about fifteen minutes after completing all of her tasks with me… shut the door very quietly… and in a soft, almost whispering voice… scolded me for not returning my advance directive to them… dated and signed and witnessed.  I don’t have to see them again until February… which may already be past my expiration date.  Time will tell…

Tick…………………………… Tock…………………………….

The immunotherapy drug they want to give me is called Keytruda.  It’s supposed to be the best choice for the kind of cancer I have.  If you Google the drug, the first thing you see on the official site is this:

Important Safety Information about KEYTRUDA

KEYTRUDA is a medicine that may treat certain cancers by working with your immune system. KEYTRUDA can cause your immune system to attack normal organs and tissues in any area of your body and can affect the way they work. These problems can sometimes become severe or life-threatening and can lead to death. These problems may happen any time during treatment or even after your treatment has ended.

Well… that’s really encouraging, isn’t it?  Then it goes on to give many, many more side effects, most of which are quite severe.

I’m pondering here….

I need time to think about it all.

They wanted to have a port put in my upper chest or neck to administer the drug.

No!  I mean… hell no!

They said they will attempt to administer it by IV but they often have problems with that.

I need time to think… though there are those who think that I should just blindly follow their little set plan of attack like a good little lamb.  I’m not feeling much like being a good little lamb at the moment… so they can forget that.

So… I’m going to go ponder… but while I ponder… I’ll be wishing you all a most beautiful day… and VERY GOOD HEALTH!

Michael33