Wednesday, February 27, 2013

Intrathecal Methotrexate: One Year of Treatment

images (1) Life is inherently risky. There is only one big risk you should avoid at all costs, and that is the risk of doing nothing. – Denis Waitley

On Monday I had my seventh intrathecal methotrexate treatment. It’s been an interesting year.

I remember a difficult spinal tap in 2005, after having had several routine spinal taps in the years before. I swore at that time that I would never submit to another one. It’s funny how things change. My current, every eight week or so, spinal taps are sometimes routine and sometimes challenging, but I welcome them, because they seem to be making a difference in my life.

My first intrathecal methotrexate infusion was on March 5, 2012. It didn’t go particularly well. The oncologist made several stabs before hitting the spot. My second infusion was the worst. Yet again, it took him several tries, but that was not the issue. I was essentially immobile for nine days afterward because of a post-lumbar puncture headache. You can read about the details here. For the third infusion I was able to convince the doctor to use a smaller, 25gauge needle, which is known to reduce the likelihood of a post-lumbar puncture headache. He didn’t like the idea because 25gauge needles are so flexible that it is difficult to properly direct them, but he agreed to give it a try. It took him two attempts to hit the spot, which was no worse and maybe a little better than he had done with the larger needle. Most importantly – there was no headache, and there hasn’t been one since we began using the finer needle.

The fourth infusion went fairly well. By the fifth infusion, he seemed to be really getting the hang of it. Using the thinner needle, he hit the spot on the first try. I had virtually no discomfort during the procedure. We were falling into a comfortable routine, or so it seemed.

Each time a doctor misses during a lumbar puncture I feel a somewhat uncomfortable sensation in my spine. It is not pure pain. It’s pain…plus something weird. The inner sanctum that is my central nervous system is being touched. Yes, the doctor does use local anesthesia, but that only helps at the skin. The successful tries, those where the needle properly pierces the dural lining of the spinal cord, are no more painful than a flu shot. But when the doctor misses, then I exhibit certain involuntary responses. Usually I contort my face into a grimace. In the worst case, being the wimp I am, I articulate my discomfort with one of several audible declarations which I have at my disposal.

imagesThe sixth infusion brought just such trouble. The oncologist simply couldn’t hit the spot. He repeatedly inserted the needle to no avail. But after about 30 minutes his dart finally landed on the bull’s-eye. A round of drinks for everyone! We were all emotionally exhausted - me obviously, but also my wife, the nurses, and the doctor. He was apologetic, and even gave Kim a hug, and by no means is he the touchy-feely sort. But I had no post-lumbar puncture headache, and I was generally no worse off for the ordeal.

As I readied for my seventh treatment on Monday of this week I didn’t know whether to consider the sixth treatment to be an anomaly or a trend. I wasn't overly apprehensive though. Here’s the good news – this injection was his best ever, and he is beginning to gain confidence as he continues to learn the anatomy of my apparently tightly packed spine.

I have the utmost respect and gratitude for my oncologist. He agreed to take me on as a patient knowing relatively little about MS and how this chemotherapy drug might help me. He has consulted regularly with my neurologist. I provided the oncologist with a lot of information about the use of intrathecal methotrexate for MS, and he has read through it with humility and an open mind. He treats me with respect and compassion, and is willing to continue this venture despite the occasional bump in the road. I am very fortunate to have him on my medical team.

So my first year of treatment ended on a good note regarding the procedure itself. More importantly, I continue to feel that intrathecal methotrexate may be having a positive impact on my disease progression. I’ve still felt no clear worsening of my MS in over a year, and that is a huge deal.

I won’t be shouting from the rooftops that intrathecal methotrexate is the newest, greatest treatment for all people with MS. I am here, however, to say that there may be something to this idea, and people with the progressive form of the disease who are having no luck with any other approaches may want to give intrathecal methotrexate a serious look.

Feel free to contact me at email@enjoyingtheride.com if you would like to discuss this further.


Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.



6 comments:

Anonymous said...

I can't believe you keep doing this, but then again I probably would do the same thing.Carole

zoomdoggies said...

Thanks for documenting your experience, Mitch. I think I'll give it a pass, myself, but if it's working for you, by all means, keep doing it! And keep telling us how it goes.

Anonymous said...

I have been using Methotrexate as well for about two years. You are hardly a whimp! It's not easy getting the injection. I receive mine through my baclofen pump. No risk of a spinal headache which I had six years ago when my pump was placed, so I get it! My oncologist had a little difficulty at first getting the needle in the right spot, but he seems to have gotten the hang of it. I seem to have remained stable, except for the fact that my upper body seems a little weaker and tighter from spasticity, but I am wondering if it might be a result of the cold winter that is making me feel more spastic.

Daphne said...

Thanks for the update, Mitch. I had been wondering if you were still having these. So glad to hear they seem to be working!

Anonymous said...

hey Mitch, pardon me for posting a comment before actually reading your post, HOWEVER, I ran across something you might find interesting...

http://www.thegatesnotes.com/GatesNotesV2/Personal/A-Day-at-DEKA-Research-with-Dean-Kamen?WT.mc_id=02_27_2013_Kamen_tw&WT.tsrc=Twitter

Regards,
...d.

Enjoying the Ride said...

Carole,

It's a relatively small inconvenience, if indeed it is slowing or stopping my progression.

Zoom,

I don't keep many secrets here, so I'll definitely continue to keep everyone informed :-)

Anonymous,

It's great to hear from another intrathecal methotrexate user. Feel free to contact me at email@enjoyingtheride.com to compare notes.

Daphne,

I'm still on the stuff. Will let you know if it stops working.

Dean,

Thanks for the link. I'm going to subscribe to that newsletter.