Another Visit to Oncology

Sheila and I had another visit to my oncologist today.  Overall, it was a relatively uneventful visit but there were a few things discussed that I should write about here mostly so I can reference it in the future to refresh my memory before my next appointment.  

I should also note that after these specialist visits, I have a flurry of activity in scheduling appointments with other doctors for more exams and tests.  This forces me to acknowledge the seriousness of my health problems which I normally push to the far recesses of my mind as often as possible.

During this appointment with my oncologist, we discussed my ongoing problems idiopathic anaphylaxis...  how my body responds, how I have been treating it with medications, frequency, severity, triggers, etc.  On the positive side, I was able to report that although I do continue to experience idiopathic anaphylaxia with no warning, these recent episodes have been manageable and less severe than some previous episodes.  

After writing about my anaphylaxis being "less severe" recently, I see how absurd that sounds.  Any anaphylaxis is life-threatening but some of my episodes can be quite severe and even violent.  Fortunately, my anaphylaxic episodes in recent months have been slower to present (as opposed to suddenly into life-threatening condition) and even less frequent.  So, that is good.  However, I think the biggest reasons for this is I have been sick and on the couch for many months recently (COVID followed by Flu-A).  Additionally, heat is a major trigger for me and we are just now coming out of the coldest months.  

My oncologist mentioned that another one of her patients with this rare illness experienced the exact same anaphylaxic episode recently, in the exact same location (in produce of a local supermarket), as I had experienced.  She was shocked to see this similarity and thought it was worth mentioning to me because she originally thought it was rather odd and perhaps unremarkable that I had experienced multiple bouts with anaphylaxis while in the produce section of a supermarket.  I think the previous thought process was that this was a coincidence.  One of my worst experiences was at the exact same location that another one of her patients experienced the same more recently.  Obviously, since she had remembered my incident in detail, it is clear that she had always believed me but now with a second incident with a different patient in the same exact location and the exact same life-threatening reaction...  there is a major connection between unrelated patients.   

This connection reminded me to let her know that I had finally figured out my nighttime breathing issues.  It is a rather long story but since the beginning of the COVID pandemic, I've been having great difficulty breathing at night.  I have no doubts that my multiple bouts with COVID has damaged my lungs to some extent so this is still a partial reason for my nighttime breathing issues but the question has always been, "why is my breathing more consistently worse in my own bedroom and not when we are traveling?"

My IgE test results were coming back normal indicating that there was no allergy whatsoever causing this.  My lungs sound clear.  We couldn't figure it out but it was occurring only in my own bedroom.  

Sheila and I switched to hypo-allergenic laundry detergent and softener for the sheets with no noteworthy changes.  

Then, just about a month or so ago, I was lying in bed having breathing difficulties again.  I was scrolling through Facebook on my Kindle since I couldn't sleep and I came across someone in one of my support groups stating her horrendous experiences with memory foam bedding...  the off-gassing of toxic fumes from memory foam, triggering anaphylaxis, etc.  I instantly remembered that Sheila and I switched to memory foam pillows around the same time that the pandemic began.  I instantly ordered a couple of hypo-allergenic pillows.  Long story short...  my nighttime breathing issues are mostly resolved.  Fumes from memory foam off-gassing can cause sensitivities (not allergies) causing anaphylaxis in those of us with this rare illness.  My oncologist thanked me for the info and explained that this would be useful for some other patients.  

Related to the life-threatening anaphylaxia, we discussed new drug treatments which segued into my feelings about the television commercials promoting these drugs that I see every night when I sit down to relax in front of the television.  I explained that I have been doing a good job at pushing this illness to the back of my mind, just going through the management motions (drugs, rest, avoiding triggers, etc) without any thought...  trying to live my life as normally as possible without harping on the seriousness of this incurable illness.  I do a good job at pushing the serious stuff to the back burner so I can enjoy life as much as possible.  Then I see one of these television commercials and I'm instantly reminded of and plunged back into flashing back to my worst experiences of this illness...  and there have been many!  I explained how it gets me a bit upset, a bit anxious, and even a bit depressed being reminded of this nightly.  Then we circled back to discussing new treatment options and what needs to happen to qualify for each of these treatment options.  Unfortunately, for my case at this moment in time, there is no new treatment option for me.  

My oncologist touched upon her concern about my positive TET2 results, my positive hereditary alpha tryptasemia results, as well as her concern about my continued idiopathic anaphylaxia.  After the appointment when things were settling into our thoughts, Sheila and I discussed why my oncologist might be concerned specifically with these particular poor test results.  This seems to be simply about the serious relationship between my systemic mastocytosis and various leukemias.  

These rather brief discussions about my problematic test results led to another topic...  my illness possibly progressing to a different stage and why we don't want to see this happen.  I have this growth on my leg that needs to be biopsied which is likely a form of skin cancer but which could possibly be more closely related to my systemic mastocytosis.  If related to my systemic mastocytosis, then this would be a progression that would be extremely bad so the biopsy is necessary to rule this out.  Of course, even if this growth is simply a form of skin cancer, it needs to be removed but any form of skin cancer would be good news in my case.    So, I need to head back for a biopsy and removal of this growth.  

Now I'm waiting on some blood tests to be posted in my online medical record so I can review them and I'm waiting to be scheduled for the biopsy on my leg.