On Friday I received my eighth intrathecal methotrexate treatment. The procedure was fairly routine. I had no post-lumbar puncture headache. In fact, I’ve gained so much confidence in the 25gauge needle that I have altered my post-treatment procedures. The oncologist requires that I lie flat on my back in his office for 30 minutes after the infusion. In his opinion, that makes the headache risk negligible. But, because I hate the headache so much, until Friday’s procedure I was also coming home and lying flat on my back until the next morning. Now, for the first time, I came home from the late afternoon procedure and stayed in my wheelchair until my normal bedtime.So I’m settling into a routine with this procedure. It’s no big deal anymore. Every 8 to 10 weeks I get the infusion. For the remainder of that day I stay home and take it easy. My disease does not progress between infusions. I go back 8 to 10 weeks later and repeat the process.
Boring.
Of course, if intrathecal methotrexate stops working tomorrow I’ll be sad. This reprieve that I’ve been fortunate enough to enjoy for the last 14 months has been wonderful. But I appreciate, as with life itself, that my lack of disease progression is fragile and possibly fleeting, and must never be taken for granted.
Note: to read all of my intrathecal methotrexate posts, click here.
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I am so happy to hear this, Mitch!
ReplyDeleteSo you are saying that you are functioning the same way that you were 14 months ago? How much progression was there in the 14 months prior to that, for comparison. This sounds so promising; I am thrilled for you! May this trend continue.
ReplyDeleteDaphne,
ReplyDeleteYou and me both!
Webster,
That is correct. I am functioning in the same way that I was 14 months ago. In the 14 months prior to that I had significant progression. In fact, when I extrapolated I expected to be in very poor shape right now, relative to where I was. And it is all relative. Most people would look at me and say that I am in pretty rough shape, but based on the track I was on, I consider this to be relatively good shape – know what I mean?
Mitch, very happy the intrathecal methotrexate is working for you. Only wish they had used the 25gauge needle sooner, but at least now they've got the procedure down to a science. Dr. Sadiq claims that the treatment keeps a high percentage of his progressive patients stable for years at a time, so hopefully your relatively recent stability will be the status quo for quite some time…
ReplyDeletePS, the Red Sox are killing me. Not sure I'm thrilled with John Farrell…
Marc, I have you to thank for introducing me to Dr. Sadiq's work with intrathecal methotrexate. So, thank you! If you get the chance next time you speak with Doctor Sadiq, please pass my thanks on to him as well.
ReplyDeleteAs for the Red Sox…let's face it, they were exceeding expectations for a while. Hopefully they can recover.
Mitch-
ReplyDeleteI'm a recently graduated pharmacist that will be specializing in hematology/oncology just looking to learn a little about IT Methotrexate and I stumbled on your blog. Firstly, your work is well written, and in a very engaging style. You have such optimism-tinged-with-realism and an upbeat view on life that is so incredibly inspiring. Your blog has made me appreciate the wonderfulness of just "living" every day (something that, amidst business, tends to get lost all too often). I wish you the best with your mtx treatments and its continued benefits. Thank you for your work.
PS- I work at Maine Medical Center... Small world.
Anonymous, I'm glad about a couple of things. I'm glad you found my blog and that you like it. I'm also glad that my blog shows up when people do searches for intrathecal methotrexate. Thank you for your kind comments and good luck at Maine Medical Center.
ReplyDeleteMitch,
ReplyDeleteI am a new patient of Dr. Sadiq's and just Tuesday (May 21st), he suggested that I try this treatment. I was totally knocked off my feet in shock. I hung up and immediately went on the internet and found your site.
Today, I received in the mail my JCV test prescription and a copy of a study that Dr. Sadiq did on ITMTX. Reading it really did not put my mind at ease at all. So back to your blog I went to reread your real-life experience.
I'm 50 years old and diagnosed for only 2 1/2 years but have had symptoms for 6. 5 years ago, I worked out 15 hours a week in the gym. High impact cardio, Zumba, Step, etc were my favorites. I was also a dancer for over 30 years. But in March 2008, I was struck with Transverse Myelitis and my right leg went numb for 3 months. I was not treated with anything because the neurologist at the time told me I was a stressed out hypochondriac.
Well, needless to say, I never recovered from that attack. At the same time, I've been plagued with progressive and excruciating foot pain now made worse by a failed foot surgery last summer. Add to the pain, wobbly, weak legs and the balance of a drunk on a lazy susan. I've resolved to get a wheelchair so I don't hold my family back from doing the things they love.
Dr. Sadiq did a spinal tap in April to assess biomarkers in my CSF to determine the treatment to put me on. He measured disease activity and oxidative stress. Both are very high. He offered me Tysabri (after I take the JC test) or the new pill Tecfidera (BG12) PLUS the ITMTX because he doesn't believe that Tec will be enough on its own. I am to give him an answer in the next few weeks.....
Thank you for posting your journey with this treatment. I wish you continued stability of your disease with this treatment.
Thanks for listening,
Karin,
ReplyDeleteThanks for writing. Stressed out hypochondriac, huh? The nerve!
I encourage you to start using a wheelchair if you need to, not only for your family's benefit, but also for your own. When you have mobility problems, a wheelchair is a gift.
Good luck with your treatment decisions. I know that Doctor Sadiq's office is a lot more skilled with the needle than my oncologist is, so I don't think you'll have the injection issues that I've had.