Monday, April 11, 2016

"The Only Way to Lose With This Disease is to Stop Trying" - Update


"The only way to lose with this disease is to stop trying," are are words of the wise Dr. Afrin.  As most of you are aware, I had been waiting nearly a full year to see the oncologist who specializes in mast cell diseases. My appointment was made June 2015 for April 2016.

It has been quite the week! Again, as most of you can probably recall, my pediatric doctors in Florida looked my family and I in the eyes and told us that the "adult world" in Florida will kill me. And after just turning 19 and needing to make the peds to adult doctor switch, that was less than comforting. We had all been struggling to find a team of doctors who were willing to take on a complex case such as mine and who are willing/capable of following the suggestions of the out of state specialist mentioned above.

About a week ago my family and I relocated to South Carolina for hopefully improved medical care. Moving is a stressful situation for anybody. (We adore the new house, by the way). But it is increasingly so when we had to travel all of the way to Minnesota by car for my appointment only a few days after moving in. Anyone who knows Mast Cell Disease is probably aware that patients can go into reactions or even severe anaphylaxis triggered by chemicals (perfumes, lotions, laundry detergents, food proteins in air, etc). You never know what will cause a reaction and what causes a reaction one moment may be safe the next, as it a cellular issue - not true allergies. So flying was not feasible in my current state of health. Jet fuel and confined quarters with others bathed in chemicals is a recipe for disaster.

The appointment went well. It was a relief finally have a doctor knowledgeable about the disease and its varying presentations. The doctor is awesome - but despite how awesome he is, the treatment options are still the treatment options. To sum the appointment up, "I've got it bad." Isn't that comforting? Hahaha! However, a few more medication options can be entertained. There was the discussion of retrying different formulations of the cancer drug I was on a couple months ago. There are also other drugs in the same class that I can try if that does not work, but it is to be discussed with my new home oncologist in South Carolina. Basically, I have to keep trialling various medications while praying they work. It is scary and frustrating when these trials result in reactions that cause huge setbacks or provide no symptom relief.

Thankfully I already had the diagnosis. The testing that was able to be done previously sufficed. I did not have to endure more testing. I lucked out because my 2010 biopsies, despite not having all of the proper staining, revealed enough. He was also intrigued with me having the highest plasma prostaglandin D2 level he has ever seen. There is only one other test that he wanted done once I came back home since I had previously tested positive for IgE antibodies on the Urticaria Panel. That may lead to some of the other treatment options being more promising.

Other than that, there is not much significant enough to update. It appears that continuous IV Benadryl, continuous IV Pepcid, and IV steroids are my life until something else works well enough to wean off of those (or back to doses spread out over hours rather than a continuous infusion). I am thankful that I do have those options to keep me alive until something else is successful. As inconvenient IV medications are while traveling, I am thankful they helped things to remain stable-ish for the trip! Aside from having to leave the first hotel before a reaction progressed due to the laundry detergent, no significant issues were encountered that could not be resolved/worked around or treated quickly!

Once the final report/outline of the treatment plan is sent, I will be meeting with my new doctors in the new state. It will probably be overwhelming, but thankful everything will be in place to start the med trials.

Below is a short 1SecondEveryDay video on the moving journey and Minnesota trip. I just love creating these video mashups. :)

video