It's finally over!

Wednesday and Thursday (the 19th and 20th of Jan.) were a blur of testing. Novartis wanted things wrapped up for the TRANSFORMS trial by January 20, 2011 and the folks at my location were giving it the ol' college try.

Wednesday I had my final dermatology exam and as usual I came away with a bandage on me. I have suspected since my very first visit when 3 beauty marks I'd had all my life remained behind in a specimen jar (or on a slide or whatever they do with that stuff) that this was a money making proposition. In the four visits I'd made to the facility, I lost 5 moles and one angiolipoma. None of them were anything to be worried about.

As if to confirm my suspicions, when the new doc (from the same group) couldn't find anything remotely suspicious to cut off, he reviewed the clinical trial paperwork they'd been provided and said "They'll pay for up to 3 removals per year... is there anything you want removed?"

Instead of explaining to him that technically that was supposed to only be IF the moles looks suspicious, I just pointed to this gigantic mole on my neck I'd had all my life. I'm sure it's the cause of my early-onset low self esteem and I decided with my birthday looming I'd just go ahead and treat myself.

He said "you've got 2 more coming for free... anything else?" When I shook my head he turned to his nurse and said "Just numb her up for that big honkin' one then."

"HONKIN' ONE??" I asked. "Is that medical terminology?"

Ah to be the brunt of a funny joke! Anyhow, to make a long story short, the big "honkin'" mole is gone and in it's place is a big honkin' scar. Oh well.

Next day I had my EDSS test and had to deal with the recorded man asking me to add numbers. This time I ACED it. Not a single wrong answer. Just the way I'd planned -- to go out on top.

I also had a PFT, EKG, bloodwork, eye exam and a MRI that day to wrap everything up.

When it all was over, I gave back my last 3 bottles of trial medication however wistful that I would like to have kept one for a souvenir. In return I was handed my first 30 day supply of the commercial version!!

I applied to their assistance program and qualified to get my Rx FREE for a year. After that, I'll have to reapply. As long as I stay indigent like I've been all my life, I'll be okay. What a plan.

If I win the lottery, I'm screwed.

Anyhow, it's been a long strange trip and I am so very grateful to have had the honor to be a part of it.

If you want to keep reading I'll try to remember to blog, but it may just be about me and not the drugs now. I'll keep reporting how I'm doing but since the trial is over I won't be blogging my checkups.

Thank goodness because the dermatology group would have whittled me away to nothing before long.

Nearing the end

I went for my checkup on December 1st. Just the usual blood draw, EDSS test, BP, HR, and one other thing I've never done before...

I filled out an application to a special drug program offered by Novartis for clinical trial participants. I had to provide my shipping address and my insurance information. Since I have no insurance that part was filled in with "None".

The rest of the form asked for my doctor to provide prescribing info and I was told the lead investigator would be the one to fill that out.

This form was supposedly faxed off to Novartis the same day and I should be receiving a call on my cell phone within a week or so gathering more info or instructing me on what happens next.

When the details have been all ironed out and I am guaranteed to be on a Rx and know how I'm going to get my Gilenya, then I'll be scheduled to have my Exit Exam.

The exit exam will include a skin exam, eye exam, PFT, MRI, EDSS, EKG, CT, BP, HR and probably a lot more ABCs I can't think of off the top of my head. Basically every test I had to take to get into the trial, I will be taking to get out of it too.

My clinical trial nurse said to expect this final exam (I have no idea how to cram for that) after the first of the year. I have more anxiety about leaving the trial that I had about getting INTO it. I know that sounds crazy, but things have gone so well for me and I have not relapsed in so long that the idea of leaving my comfy cage and exercise wheel behind to just be on my own with a new neuro is scary to me.

I'll be sure to document what happens with the application process as well as the Exit Exam for those of you in the trial who are curious about what happens next.

I'll keep blogging if you keep reading this drivel.

New Drug Appears To Overcome Resistance In Ovarian Cancer

New Drug Appears To Overcome Resistance In Ovarian Cancer

This is AWESOME news! I hope that clinical trials end up confirming that Gilenya / Fingolimod / FTY720 can fight ovarian cancer better than chemo. How many lives may be saved!

Apparently it was just MS fatigue

I've been back on the Estradiol for several days now with no issues. No fatigue like I felt those first few days where keeping my eyes open nearly required toothpicks.

I feel much better now -- back to my old self. That must have just been a blast of severe MS fatigue.

I have been fortunate enough to have been relapse-free for over 3 years now while in this TRANSFORMS clinical trial for FTY720 / Fingolimod / Gilenya and it's extension phase that I sometimes forget how bad my prior symptoms were. When I overdo it and symptoms like fatigue rear their ugly head, I am reminded that I do still indeed have MS.

Sometimes, but not too often because I don't like to dwell on the negative, I allow myself to wonder where I'd be disease-wise if I hadn't had the good fortune of this trial working out for me so well.

Anyhow, fear not the Estradiol. It, nor it's inert ingredients, caused the fatigue after all. Rather old age or MS must have done it.

Update on the Estradiol experiment

Today was inconclusive. I took a 2 hour nap, true, but I am not positive what caused the fatigue.

Today was Mom's birthday and my sister came over and took us all out to a local ice cream shop for hot fudge sundaes at noon. I'm not used that that kind of sugar overload midday. Typically that kind of sugar or carb intake will have me zonked within an hour.

So, I'm scrapping today as any kind of definitive test of the Wal-mart generic version of Estradiol and the possible fatigue inducing qualities of the inert ingredients.

Tomorrow I'll take the medicine again and try to make it a normal day as far as all the constants (like a NORMAL diet) go.

I'll report back when I've had another day to evaluate.

The Estradiol Experiment Continues

Since I last left you, I haven't taken my newly filled Rx of Estradiol any more after suspecting it was causing me extreme fatigue.

I spoke to a pharmacist who pointed out that although the Rx I had from Walgreens (that didn't make me tired) has the same active ingredient as the Rx from Wal-mart (which may as well be sleeping pills), the inactive ingredients may be what's bothering me.

I had too much stuff to do the past couple of days to risk zonking out in mid-chore for a 4 hour nap.

Today, however, I started back on the medicine at 9am to see what happens now. I was either a) MS fatigued, b) tired from having company, or c) adversely affected by the steroids inert ingredients**. We shall see if it was the medicine as that will be the only difference between yesterday and today. Yesterday I was not overly exhausted.

I wish that I had taken time to consider that today is Mom's birthday BEFORE I tried experimenting again. Family is coming over and I wanted to fix her a nice dinner. Hopefully the medicine wasn't the issue and I will be fine.

If not, I have already sung Happy Birthday to her and she'll be surprised with a nice Digiorno pizza tonight.

**PLEASE NOTE: I have no idea what possessed me to write "steroids". I haven't done any of those since 2007 and you probably are wondering where the heck that came from. I left it in place and struck it out, with the correct words coming after it so you won't think you were seeing things if you come back to read again. What was I thinking??

Blood Pressure Medicine and MS

How could this be a year old and I never saw it?

http://www.medicinenet.com/script/main/art.asp?articlekey=104764

A drug commonly used to treat high blood pressure may also double as a multiple sclerosis treatment.

A new study shows the inexpensive blood pressure drug lisinopril blocked development of multiple sclerosis in laboratory mice bred to develop the disease. And when the drug was given to mice with full-blown symptoms of multiple sclerosis, it reversed their paralysis without affecting their overall immunity.

Of course, big pharma probably was aghast when this news hit the wire. We CAN'T have a cheap alternative to the established DMDs! This would be unacceptable -- especially one that does not alter the immune system and comes in the form of a PILL!

Lisinopril is not without it's drawbacks, however...

SIDE EFFECTS: First doses of lisinopril can cause dizziness due to a drop in blood pressure. Lisinopril can cause nausea, headaches, anxiety, insomnia, drowsiness, nasal congestion and sexual dysfunction. Lisinopril should be stopped if there are symptoms or signs of an allergic reaction including feelings of swelling of the face, lips, tongue or throat. Severe allergic reactions (anaphylaxis) and hives occasionally occur. Rarely, lisinopril may cause a drop in red blood cells, white blood cells, and platelets.

Lisinopril can impair the function of the kidneys, and every person taking this medication should have their kidney function checked.

My first question would be: "That's great! But what does someone with LOW blood pressure do? Are they not a likely candidate for this type of treatment?"

I'm just amazed at all the different things, like LDN, CCSVI and now apparently this blood pressure medication that are being studied and what the ramifications might be for those of us with MS.

This is why it's so urgent that we do our best to help fund research into alternative treatments. Big pharma is not going to do it unless there's a billion dollar reason.

By the way, if you haven't done so, please go vote for the Pepsi Refresh Everything idea to Establish a Non-Mainstream MS Research Institute.