29 replies to this topic

[Pin]

Hi all,

After much deliberation, I've decided to give night time dosing a go!

My main worry when first starting Gleevec was not taking it at exactly the same time each night (or even within an hour or so) as my night meals are more varied in timing than my mornings, but given all of the discussions we have had on mutations and how they may theoretically occur, I don't feel this is as much of a concern as I first thought.

In terms of changing to night time - I was thinking of taking half (200mg) in the morning I want to change, and then a full dose the same night (400mg). Is this a good idea? I figure it may increase my side effects for that day.

I think my alternatives are to miss a dose in the morning, then take full dose at night - or schedule an incremental change over a week by taking it  2 hours later each day (not preferable!).

Also, Dan - you are exactly right, the diagnosis is a massive confound. I, like you, am determined to get this under control. I will not let it wreck my life

Cheers,

Pin.

[pammartin]

Hi Pin,

You must keep us posted on how you do with your new schedule.  I have no suggestions for you, Sprycel is the once a day deal, but I wish you the best with your changes.  As I read your sentence about your beginning with Gleevec and timing, I had to share.  When I first started taking Sprycel I took it at 5 p.m., not before or after, and I made sure I was at home, pill in hand at 5 every day.  I had this notion if I did not take it at the exact same time daily it would not work, and I drove myself and everyone around me crazy.  One afternoon driving home from 'somewhere' it was 4:45, and I was a basket case. Telling my husband to drive faster, my son was ready to crawl through the back seat escape hatch just to get away from me, and I either was near tears or anger.  The closer to 5, the worse I became, I can only imagine how horrible it was for both males in that car.  We got home about 5:20, I ran in the house and gulped the pill, but was a mess the rest of the evening.  Although my husband never said anything, he made sure we were always home in the early afternoon after that day.  Over the past 7 months I have learned quite a bit, but one of my biggest discoveries centered around the fact I could take the pill at 4 or 7, and a few times after 9 and still not loose response, duh to me .  Now it seems ridiculous, and I have apologized more than a few times to my family for my early behaviors.  They should have put ME in the trunk on that ride home, and not let me out until started using common sense again.  But then if that were the case, I would probably still be locked in the trunk.  

Pam

[pammartin]

Hi Susan,

If I missed it, please forgive, how are you feeling?  Any better (I hope), have you went to doc yet, found any answers?  Just wondering how you are doing and what you might have found out.  I hope you are having a pleasant Memorial Day weekend, seems strange to think the beginning of summer is already here!

Take care

Pam

[GerryL]

Hi Pin,

I'm a bit confused are you looking to take 600mg and if so, can I ask why?  If you're having issues with side effects why are you looking to increase them. If I remember correctly Josie said 600mg slammed her a bit. Why not just take the one 400mg at night. I started out that way, but the fluid retention issue was the main reason I changed to morning.

The other thing you could do is talk to your doctor about going on the 100mg tablets and taking 2 in the morning and 2 at night - not sure how your doc will feel, but it doesn't hurt to ask.

[Pin]

Pam, I wholeheartedly agree! I used to get so stressed about not taking my dose at exactly the same time every day! I remember asking my doctor how much leeway I had with dose timing to avoid mutation, she replied, a window of 2 hours...Now I realise that it's not as much of a problem as I thought it was. It's good for us to have more understanding about these issues, it really caused a lot of unnecessary stress for me.

[Pin]

Hi Gerry, Sorry! I wasn't being clear

What I meant was - what's the best way for me to switch to night time dosing without being too long without Gleevec? I could probably just skip the morning dose and take it tonight, or I could take half a tablet in the morning, (kind of like insurance!) and then take the full dose tonight.

[GerryL]

Hi Pin,

Not taking it in the morning then taking it at night is okay. A mutation is not going to suddenly pop up because you've moved the time you take your tablet for one day. If you're still concerned then take it a lunch time tomorrow and then you're ready for the night time.

I'm amazed at what your doc said about the two hours. On weekends I usually have a three hour difference in taking my tablet, due to sleeping in & getting involved in other things prior to having breakfast. Plus I've had 4 days now where my stomach hasn't liked the TKI and spat it out, I've gone without the tablet for the day.

Your doc might have been trying to make sure you got into a routine for taking it.

[pammartin]

Great advice Billie,

Prep H, tucks, books, and if possible wireless computer access!    You are so right, the prep for the colonoscopy is the pain in the arse (no pun intended), the procedure isn't that bad.

[LivingWellWithCML]

Good luck with the dosage change(s) Pin, and no - the anxiety won't wreck our lives.  We'll figure this out!  Now if I can only get my foot healed up, so I can run consistently throughout the summer...

Anyway, I've been researching the topic further and just purchased "The Relaxation Response" by Dr. Herbert Benson.  I'm giving this a read as a starting point.  I don't think I'll be doing any out-of-body teleportation or anything, but the ability to lower one's blood pressure and metabolic rate by eliciting the relaxation response -- now that is compelling.  My RA friend (who now teaches classes on relaxation and meditation) gave the book a thumbs-up, which was good enough for me.  I'm just getting into it now.......