Another Hospital Visit

I had another visit to Oncology at the University of Vermont Medical Center last week.  I had been up there a couple of weeks prior for some labwork which we discussed in this most recent appointment.  

In the photo at right, it appears as though the hospital is empty but we found that the hallways being seemingly dark and empty was a bit misleading.  It was about 8am and my appointment was one of the first of the day so we expected the hospital to be rather quiet.  Most of the people we saw in the hallways were hospital employees.  I'm not much of a fan of waiting in lines so seeing the hospital being so quiet was good news.  I like being able to show up, check in immediately, and then quickly get called into the examining room.

When we stepped into Oncology from the quiet and empty hallway, the waiting room was filled with patients waiting to be called in for their morning chemo. On the positive side, even though my health has been miserable this year, seeing all these chemo patients was a reminder that things could be worse.  Hmmm...  although, now that I think about it, there was quite a bit of conversation, smiles and quiet laughter too so maybe they were feeling better than I?  I really doubt they were feeling better than I was though.  It was probably more about them doing this everyday or every week and knowing everyone in that waiting room as a result.  They all meet there in the mornings and they are all going through the same thing.  I suppose there is some comfort in knowing you are not experiencing something alone.   

So, we stepped into Oncology to find the waiting room to be quite crowded.  Sheila found a seat while I got online to check-in for my appointment.  I waited for what seemed like 15 minutes but it was probably only 10 minutes.  I only sat next to Sheila in the waiting room for about two minutes before I was called in for a vitals and weight check.  My blood pressure is excellent so that is good.  My weight could drop a bit but, with all the medications I am taking, that is tough.  My height keeps shrinking too which is due to my extensive spinal injuries.  I used to be about 6'-0" tall...  now I am just barely over 5'-9" tall.  

I sat down in the waiting room again next to Sheila but my name was again called quickly.  Sheila and I then headed to the examining room with a nurse.

When my doctor arrived, it was time to discuss how I've been feeling since my last visit a few months ago.  After a quick run-through of my continuing issues, we turned toward my recent labwork results.  We had changed up my prescriptions a bit and this has resulted in some slightly better numbers so that is good.  Unfortunately, the primary drug responsible for better numbers has been exceptionally difficult to find in stock lately so we discussed that for a bit.

My oncologist said she's having trouble getting drugs all across the board.  There simply is not enough being manufactured.  People are living longer while new patients continue to get diagnosed but it seems manufacturing is either staying the same or being cut-back to manufacture other drugs.  As if all the manufacturing woes due to the pandemic aren't enough, now I need to endure manufacturing woes for medical treatment products that are keeping me out of the hospital and, on the good days, allowing me to accomplish a few things.  Anyway, there is a big... a BIG...  drug manufacturing problem and it is negatively impacting far too many patients who are struggling to live.

I still have some problems with my labwork numbers but they are no longer trending in the wrong direction so that is good.  My white blood count isn't great but my red blood cells seemed to have somehow inched back down to a good range.  My tryptase levels had been steadily rising over the past year or two but this latest test showed a slight decrease in my tryptase levels so that is good.  It is still quite a bit higher than it should be but, for the moment, it is trending in the right direction...  downward.  

My oncologist mentioned Ayvakit as a possible treatment option depending on what else may show up in my test results.  I'm currently right on the cusp for qualifying for this treatment.  This may sound like good news but it really is not good news for a couple of reasons.

First, there still is no cure for my illness so any treatment is only an attempt to minimize symptoms and, in rare cases, try to slow progression of the disease.  Also, treatment options are extremely limited for this rare illness so any possibility of a new treatment plan is welcomed by both patients and doctors.  Qualifying for a drug treatment like Ayvakit means your health is quite poor.  As lousy and miserable as my health is, I don't necessarily feel like my time is getting very short.  I did feel like that for much of this year but I've been feeling a bit more stable again lately.  I'm not ready for what is sort of a last ditch effort to possibly stabilize my health.

Second, this Ayvakit drug is quite expensive at around $27,000/month.  I'm not sure whether my insurance would even cover it and, if they did, how much they would cover.  Consequently, I'm not too optimistic of this drug even being affordable.

Third, my oncologist just informed me that other patients on this Ayvakit drug have developed brain bleeds at life-threatening levels.  They have dropped the dosage to a quarter of the dosage as a response to the brain bleeds.  How poor does one's health need to be for a side effect such as a brain bleed to sound like a good option?  I'm not there yet.  

I'm also a bit stubborn so I'm not quick to jump into something new.  I'm all for change but I'm not one for high risk.  High risk change is not something I will do.  Actually, as an example of my stubbornness, I won't go back to some of the pharmacies I've had difficulty with recently.  Because of the drug manufacturing problem, I've had far too many one-on-one discussions with pharmacists and their employees.  I am not the least bit impressed with some of these pharmacies.  I am seeing far too many instances of what can only be described as a significant lack of intelligence, lack of effective education, and even a lack of common sense.  I will not put my life in their hands so I refuse to go back to some pharmacy chains and I will not budge from staying stubborn on this.

My oncologist then mentioned that another specialist she met with recently recommended some specific additional tests related to my high tryptase levels.  The next time I head to the lab (every few months), she'll be looking for more info related to my tryptase levels.  She made it a point that there is still no cure for my illness but every little bit we know about my health could help in the long run.  One of her concerns is that this year has seen a marked increase in idiopathic anaphylaxis in my overall health.  It is classified as idiopathic because we don't know the reason for the anaphylaxis.  Well...  we know what is happening on a cellular level but there is no known reason for this cellular cascading reaction.  On the positive side, the anaphylaxis seems to have reverted back to previous frequency levels while other systemic problems have again increased.  

I'm hoping for a couple of things...  First, I'm hoping that there is far more availability of my drugs.  Next, I'm hoping that this recent trend of slightly improving health continues especially through the holidays!  Oh...  and I'll add one other thing...  I'm hoping I have no more difficulties finding the drugs I need.