A New Treatment Plan- More Chemotherapy


Yesterday I was quite miserable and depressed for multiple reasons but namely due to seeing 3 specialist and coming out with a bad treatment plan in my own opinion. Of course these medical professionals have  without a doubt seen more cases than me and dealt with many many more patients, but from what I’ve read I think they’ve made the wrong move here as I was expecting a completely different response. You see last time I visited my rheumaltologist he said I needed a tertiary care center such as Johns Hopkins Vasculitis Unit, Mass. General, Mayo Clinic, or the NIH. The NIH has been going over my records for well over a month now with very little communication back to us or my doctor who had referred me. You’d think they’d respond being that people come from other countries to see my rheumatologist as he is truly no exaggeration one of the most respected worldwide especially when it comes to Churg-Strauss Syndrome. There are only a handful of doctors who would dare consider touching my case with all the complicating conditions I have and continue to develop more and more unfortunately.

Let me get down to the plan and perhaps some readers will have input for me or suggestions(please no natural diets or herbal remedies I’ve been down that path with a licensed naturopath who nearly killed me). Don’t get me wrong they might work for some things but certainly not my form of vasculitis or with chronic migraines or cluster headaches. Anyway my treatment plan for the vasculitis is now a low maintenance dose of methotrexate…when a week ago the plan was clinical trials. I already failed 2 way more high dose more powerful chemotherapy drugs so why on gods green Earth would he put me on a LOW LOW dose of a less powerful chemotherapy drug? It makes no sense at all and I feel as if he’s now wasting some of the precious 15 years I have left. He should’ve been truthful and told me what really happened. I suspect he asked his son to enter me in the clinical trial for Interlucan 10 and was told I was denied due to my many other complicating conditions. Essentially a cold death sentence laid upon me and I think he’s trying to make me feel better by putting an option out there rather than tell me there is no options left. I appreciate that a little but I am the type who would rather have the cold hard truth.

It hurts that I think my specialist has lied to me and that his own son won’t help a one on one point five million diagnoses case. You’d really think doctors would be fascinated by it but rather they seem more frightened and repulsed by it. I honestly feel my headache specialist is one of the last doctors I can trust and even he has faltered at times and shown his lack of wit at times. Though I can forgive him because he will answer any question I have within 24 hours usually more like 5-30 minutes. My rheumatologist certainly isn’t that easy to contact even though they’re both world renowned. I just hope that I’m wrong and that I was depressed for no reason…I mean I hope the methotrexate helps I’m just very doubtful of it and not happy about putting more poison in my body when I think it won’t work. I wish I would’ve thought more and presented my doubts to him in person as now I have to wait a whole month to see him again. And who knows what condition I’ll be in because now I’ll have had my IVIG infusions and methotrexate in me which will likely make it harder and harder for me to think straight and ask the proper questions at the doctors office which is why starting today I am keeping a long list of questions for my rheumatologist.

Thank you for taking the time to read this article on my health. I truly hope you yourself are doing well because I certainly am not right now. I did get a job with US Pain which my next article  later today will be about. I am very thankful for that and it has helped to get me back into a mood to write. I lacked the motivation earlier to write anything other than a poem until that box arrived unexpectedly! More on that later I’m off to post this and do some reading to relax my hands for a while they’re swollen from writing this, the poetry, and working on chapter 3 of my first true book! Have an excellent summer day and stay healthy my friends!

6 thoughts on “A New Treatment Plan- More Chemotherapy

  1. Michael, before you start the methotrexate you need to have a couple eye tests. You need your color vision tested, a Humphrey Visual Field 10-2 test, an Amsler Grid and a dilated funds exam. These tests should be done before you start the med. and again every 6-12 months.

  2. My brother and I were possibly going to go to Mayo. This was suggested by a neurologist I saw who gave me Botox. He hadn’t seen my rare syndrome before, like every other doctor and he was one of the truly curious and hopeful doctors I have ever seen. It would have taken a lot and lots of forms to fill out and we never did end up pursuing it, probably because we are lucky enough to not likely be terminal. I know your situation is different. Have you really never been seen at a centre such as the Mayo Clinic before Michael? I am surprised. Some doctors fear what they don’t know…what am I saying…most doctors is more like it. It is rare to find that one who is willing to go above and beyond what others are. I have seen so many and have let the good ones slip through my fingers. I hope for better, for more for you.

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