33 replies to this topic

[imdavidson]

Pam, what I linked to above is the abstract of the modafinil study.  Here's the full text: http://onlinelibrary...cncr.24287/full

Best,

Idelle

[pammartin]

Thanks Idelle, appreciate the link

[Judy2]

Hi Billie,

I'm so glad you may be able to handle your new bp medicine. Please let us know how your onc visit goes, hoping all is well and that you are able to reduce your Sprycel. As for Pam, forget the underwear, we have to get her to install her oven. It is still sitting in the hall. What are we going to do with her?  

Hugs,

Judy

[hannibellemo]

Billie,

That's great news! Congratulations!

Pat

[pammartin]

Hi John,

I was catching up on this discussion and was wondering if we talked about the effective time of Ritalin.  For most people it is in and and out of the system within 5 hours, even my PCP stated she believes it is faster for me, some of us metabolize meds differently than others, faster/slower, and other options.  You could be one of those people who process meds faster than others.  Although I am now on the 10 mg three times a day, this past weekend was rough.  I mentioned I was an idiot and did not get much sleep, then I tried to overthink our anniversary and ended up with nothing, and on Sunday had a funeral home visit for a distant relative.  I did not seem to feel much effects of the Ritalin, and I seemed to experience quite a few highs and lows during and between doses.  I spoke with doctor about it, she said we will try this for a bit, and see what happened.  There is an extended release Ritalin, right now we are staying away from that option because the cost is high and the co pays are also pretty steep even for BC/BS and other familar insurances.  If in time the regular Ritalin you take several times a day does not level out and you continue to experience those dreaded highs and lows associated with some meds, it might be an option to talk to your dr about the extended release version.  As Woof stated, that might be your best option because of how your body breaks down the med.

Good Luck!
Pam

[Judy2]

Hi Billie,

I AM SO HAPPY THAT ALL YOUR NUMBERS ARE GOOD AND THAT YOUR BP MEDICINE IS WORKING FOR YOU. You have been through so much, you really do need a break. I'm hopeful that in one month you will be able to go down to 50mg Sprycel. As for your onc being scared sh...less, makes you wonder how many times our doctors are scared by what they see and never tell us.

Billie, your message was edited by Abena, I'm guessing she is from LLS. What did you say that had to be edited? Of course, you wouldn't be able to post it here, it would just get edited again so if you can personal email me and let me know.

As far as burying all your cleaning supplies in the hall, great idea. I am off to do that now. I'll just need to jackhammer my ceramic tile first. I know it will be the right thing to do, I know I can trust you Billie. You would never steer me wrong would you?

xo,

Judy

[pammartin]

Billie,

I had my message deleted, you just had your edited.  You need more practice.  Great news on the blood pressure, awesome!  Judy, my 'hall' oven has become such a huge conversation piece, even to those who have not viewed it forlornly sitting in the hall, but have heard about it, I am not sure an installation will ever be possible.  I thought last weekend I would be really nasty throw a table cloth over it and put our dinner plates there to eat, but because it was our anniversary, I decided it would be just too mean, even for me.  Although.....this weekend is only 3 days away.

[pammartin]

Hi Billie,

Thanks!  I was a poop head last weekend.  It all started when I began looking at photos from our wedding 5 years ago.  Since then my mom, his dad, a two dear people have passed away.  What started out as finding a few photos for the facebook page for others to laugh at ended up with me sitting mesmerized by tons of photos of people who are no longer here.  Then if that wasn't enough, I got out the videos yeah there is an 's' on the end of that video word, and had to watch every one of them, even the ones that were so grainy it was hard to see anything.  Bob and Nick gave up the going out for lunch idea, not sure what they did, and then around 4ish I had to stop, Nick's glasses were in so we had to go pick them up.  It was dark thirty by the time we finished up with that, so we ended up going to a local hangout, Nick had a cheeseburger, Bob had a cup of soup and a small appetizer, and I had some sort of fish thingy with a tomato on top.  Still not sure what it was.  We came home, Nick went to bed, Bob inhaled 3 or 4 Landsharks, and then he went to bed, and I stayed up till after 2 a.m. and Judy caught me on the computer.  I probably should cook something this weekend, it is Easter and I owe Bob something......  I am waiting, if he hides the computer on Friday night not only will I know why, I will also deserve the action.  When you get a hour or so (will take you that long to get through it) I posted under Let's Just Talk, it was about my son, lots about him, but today he just blew me away.  Still cannot believe that was my boy on that track! 

[pammartin]

Hi John,

Thought I would update my Ritalin journey.  Although the weekend was a bust, even though I did take it, I stayed up too late and it was an overload of emotions, and as Judy once said, nothing is a miracle drug.  This week has been much better.  Clear thoughts, I honestly cannot think of one serious brain fog moment, and the last few days my son and I have been working in the yard at the new house.  We went out yesterday about noon, and raked, I did use lawn tractor but also pushed mowed a fair amount of trimming, came in at 4:30, had a quick dinner, then headed out to pick up his girlfriend for a visit.  I was very interested in how I would feel today, in the past on Sprycel if I did get up and moving one day, usually the next I was not far from the couch.  I did get up a bit later, but felt pretty good, sometimes muscle aches are a good feeling.  We went out again today and moved about a ton of 1B limestone with shovels and a wheel barrow.  I am tired, and a bit sore, but still moving.  I keep wondering if the Ritalin is really working this well or it is honestly a placebo, time will tell.  How is it going with your Ritalin journey?  Inquiring minds want to know.

Pam

[jstevens11]

Pam,

My Ritalin journey doesn't seem to be going that well. I'm taking 5MG in the morning, and then 5MG about 4 hours later. It clears the fog for about 1 hour, and then it's back to normal. I talked to my ONC about 10MG, and he wants to wait a little before going to the 10MG. I'm really fed up with this whole process. We can put a man on the moon, but we can't get this fog out of my head! Working the job that I do makes the fog worce! I work with numbers all day, and right about now i'm ready to call it quits. Even typing this e-mail is killing me right now. I have to check, and double check to make sure that what i'm saying is correct, and that my spelling is at least normal.

So, my confused journey continues.

John

[pammartin]

John,

I am sorry you are having such a hard time with this.  I wish your doc would agree for you to try the 10 mg.  The thing about Ritalin is, there is no lasting effects, it is in, and in about five hours, out of your system completely.  I could see no difference on the 5 mg, so I admit to doing my own investigating.  I am not advocating anyone to not follow doctors advice, but I am familiar with Ritalin, my son took it for a time when he was younger. I called my doc after three days, told them the 5 mg did nothing and had been taking the 10 mg for three days and explained the difference in how I felt.  I was given the ok to stay with the 10 mg, and so far it is good. 5 mg and even 10 mg are small dosage amounts, adults usually start out at 10 mg, and move up to 20 mg or 30 mg.  I was hoping you would have luck and some of that darn brain fog and energy had returned.  The only issue I have found with the Ritalin is getting it one of those meds where you have to pick up the prescription monthy, and they cannot call it in over the phone.  So I will be making a trip every month to get my refills.  I am not prepared to do this right now, I am feeling pretty good, but one of these days when it is raining and not much going on, (I love it outside when it is warm) I am not going to take them and see if there is a difference.  If it was a build up drug for the body, I couldn't play with the med, but since it is not, I am curious to see how different I would feel.  I did not get today's dose in until after 9 this morning, so I am not going to take the late afternoon one, second dose was at 2 when I got home, so I am wondering how I will feel around early evening without the kick start of that 3rd dose at 4ish.  Best of luck, and hope if you are willing to keep bugging your doctor he will agree, to the 10 mg.  Incidentally, I used to be a whiz at numbers, worked in accounting half of my life, now I struggle with the checkbook and I have to be very careful, since I have been taking the Sprycel, I have become very poor with minor basic math skills.  Take care John, I hope you feel better soon.

Pam