19 replies to this topic

[rct]

Apologies if already posted, and apologies to the moderators if they are going to ban me for posting a link.  Good stuff here:

 

http://www.npr.org/s...se-and-dementia

 

rct

[Trey]

The good news is:

 

"while cancer cells tend to die when exposed to nilotinib, brain cells actually become healthier."

 

The bad news is:

 

"He began loading the dishwasher, loading the clothes in the dryer..."

 

Wives will want to give Tasigna to their husbands to make them do household chores.

[snowboots]

Hahah - Trey you are so funny! Yes, I saw this news item on TV this morning. Hope that further trials prove positive for these patients. As always, the "miracle" drug that works may be financially unreachable for many.

[kat73]

Wow, this is really cool!  But I don't understand how come so many of us complain of "brain fog," if TKI's have this good housecleaning effect on the brain.  Is it just Tasigna?  If so, why?  Has anyone out there experienced improved cognitive skills from switching to Tasigna?

[rcase13]

Constant brain fog here...

[hannibellemo]

The "brain fog" that we always talk about came to mind when I read the article, too! Unfortunately, so did "Flowers for Algernon" (for movie goers, "Charlie")

[Gail's]

Brain fog yes, and fatigue so profound on gleevec some days tha getting the dishwasher loaded and laundry done is a big accomplishment. Maybe I should switch to nilotinib.

[rcase13]

Can someone explain what the fatigue feels like? I know that sounds silly but I would like to see if it is the same thing I suffer from.

[Trey]

Brain cells are not the cause of TKI brain fog.  That comes downstream.

 

Gleevec does not even pass through the Blood Brain Barrier (BBB), but Gleevec fog may be the worst among them.  Sprycel and Tasigna can pass through the BBB to some degree.

Edited by Trey, 20 October 2015 - 07:16 PM.

[kat73]

rcase - For me, the fatigue unique to TKIs is like this:

 

      1.  I wake up and I feel like I never went to sleep.

      2.  As long as I move slowly, OK - try to make my feet move faster, no way.

      3.  Out of nowhere, an overwhelming feeling that I have to stop and sit down, or lie down.

      4.  Again, out of nowhere, and despite it being easy just the day before or even a few hours before, an inability to go up an incline.  That's walking up a very slight rise in the road on a dog walk, or going up the stairs.  Not out of breath, just every muscle screaming to stop.  Legs feel like they're filled with wet sand.

      5.  Projects after 3 PM just don't get done.  That's the end of my working day.  Just can't face continuing whatever it is I'm doing.  The chair and the book beckon.

      6.  Can't cook anymore - can't sustain the focus to follow a recipe, can't stand up that long to chop all the onions, forget what I'm doing or have already done in the recipe.  So tired I just want to sit down.

      7.  Could not possibly hike or climb or go any distance that I used to.  Turn down all invitations to do anything physical.  Can't travel - can't stand in the security line that long. 

      8.  Weigh every decision in terms of, can I endure it?  Everything from a cocktail party or wedding to how far to park from a venue.

      9.  Things I no longer have the muscle power to do:  Put the contour (bottom) sheet on the bed, carry the laundry basket to the laundry room, carry two bags of groceries, dig a hole to plant a new shrub, rake longer than 10 minutes, get in and out of a car or up out of a chair without consciously willing myself to marshall all my resources to do it unaided, lift my own suitcase, carry my grandbaby longer than 2 minutes, talk to or see people for more than a half hour.  I can still haul my 11 year old dog to his feet with his Help-Em-Up harness, but that's just love and adrenaline.

     10.  Naps feel good to slip down into, but never make me feel energized afterward.

 

Does any of this sound familiar to anybody?  And, Trey, what causes the TKI fatigue and brain fog, anyway?

[rcase13]

My symptoms are very strange but similar. For me the big thing is my ears and head get hot with the slightest activity. My wife says I get really red. I never got red before Tasigna. I can't be in the heat or sun for more than a minute or two. Thank goodness for the cooler weather. For once my thyroid numbers are normal. I don't think they will stay that way. So I don't think it's my thyroid.

Oh well, life with cancer I guess. It just sucks. I have always been someone who can't sit still. I always need to have a project of some sort. So we bought an old house with a thousand projects.

I love my wife so much. It takes me forever to finish a project now. I can only spend about 30 minutes on a project before I have to rest.

Last night in the middle of the night the nail gun compressor came on. I had forgotten to turn it off. I seem to forget everything anymore. She wasn't thrilled but held her tongue. It scares the bejesus out of everyone. Cat jumped out of bed, Dog woke up growling and barking... My son slept right through it.

Thanks for listening.

[Trey]

Those must be the tightest sealed nail gun and compressor fittings ever made.  For most models the compressor would have run several times per hour.

 

Some people just look at a problem differently, I suppose.  Nice nail gun.

[Billie Murawski]

I'm not allowed to play with nail guns anymore, they work better than duct tape.

[Gail's]

Haha Billie. I've only played with a nail gun once or twice to see how it works but I definitely have days it would not be good for me to be carrying one!

[rnowinski]

rcase - For me, the fatigue unique to TKIs is like this:

 

      1.  I wake up and I feel like I never went to sleep.

      2.  As long as I move slowly, OK - try to make my feet move faster, no way.

      3.  Out of nowhere, an overwhelming feeling that I have to stop and sit down, or lie down.

      4.  Again, out of nowhere, and despite it being easy just the day before or even a few hours before, an inability to go up an incline.  That's walking up a very slight rise in the road on a dog walk, or going up the stairs.  Not out of breath, just every muscle screaming to stop.  Legs feel like they're filled with wet sand.

      5.  Projects after 3 PM just don't get done.  That's the end of my working day.  Just can't face continuing whatever it is I'm doing.  The chair and the book beckon.

      6.  Can't cook anymore - can't sustain the focus to follow a recipe, can't stand up that long to chop all the onions, forget what I'm doing or have already done in the recipe.  So tired I just want to sit down.

      7.  Could not possibly hike or climb or go any distance that I used to.  Turn down all invitations to do anything physical.  Can't travel - can't stand in the security line that long. 

      8.  Weigh every decision in terms of, can I endure it?  Everything from a cocktail party or wedding to how far to park from a venue.

      9.  Things I no longer have the muscle power to do:  Put the contour (bottom) sheet on the bed, carry the laundry basket to the laundry room, carry two bags of groceries, dig a hole to plant a new shrub, rake longer than 10 minutes, get in and out of a car or up out of a chair without consciously willing myself to marshall all my resources to do it unaided, lift my own suitcase, carry my grandbaby longer than 2 minutes, talk to or see people for more than a half hour.  I can still haul my 11 year old dog to his feet with his Help-Em-Up harness, but that's just love and adrenaline.

     10.  Naps feel good to slip down into, but never make me feel energized afterward.

 

Does any of this sound familiar to anybody?  And, Trey, what causes the TKI fatigue and brain fog, anyway?

I hope your doc is checking your Thyroid and minerals. Those can effect your fatigue greatly.

[kat73]

Thanks, rnowinski, I do get the thyroid checked each year as part of my physical and because I'm on replacement hormone for a thyroidectomy in 1979.  It's never NOT been normal, oddly!  The minerals I'm going to ask about next week.  I'd be pleasantly surprised if something easy to fix turned up.  I've pretty much experienced this since the first Gleevec pill went down the hatch in 2009.  But we'll see.  Thanks for the input.

[rcase13]

I was recently placed on potassium pills. My potassium was right at the borderline. So far I don't notice much of a difference. The pills are huge and damn near impossible for me to get down.

[sunshineC]

Just want to say thanks to KAT73 for putting into words what the 'fatigue life' is like.  I can relate to different degrees to every single one.  I want to print it out and give it to those friends and people at work that just don't get it.  I'm so grateful for the ones who do.  Thanks again.

[Sneezy12]

Dr. Charbal Moussa at Georgetown Medical School discovered this in mice. Low dose Tasigna given every other day, increased autophagy(cell self-destruction of those cells containing the abnormal protiens in Alzheimers and Parkinson's Disease). He then did the same thing in 10 of 11 patients with end-stage disease. Within 6 months, there was a return to near-normal in these patients. (One of the patients dropped out of the study for reasons unrelated to the study).
I viewed the videos of the studies and discussed the study with Dr. Moussa today, and they are truly remarkable. He will begin larger studies.
Frank

[kat73]

Thanks, Sunshine.  Always glad to know I'm not crazy!