45 replies to this topic

[tazdad08]

What amount of memory issues do we consider par for the course and when we do get concerned?? I have noticed that over the past 4 years my side effects are like a wave pool. Some side effects are worse at times while others are minimal. Then they switch roles as to what side effect is more prevalent. My mind has been very weak for a few weeks now.....To the point that I called the wrong school to tell the teacher that my 7 year old forgot his lunch and someone will bring him one. I don't even know why I googled the school that I did...When do I seek help? This honestly scared the shit outta me. I have known, and talked to my wife, about the fact that I am in a forgetful stage. I am embarrassed and worried. This could be dangerous. I am only 44 years old and am trying to work part time at a job that I could do in my sleep before diagnosis... I had to cut back because of cml and side effects. I was always used to working 50/60 hours a week and then taking care of horses and constantly working on remodeling the house and that type of work. This is really starting to get to me. I had accepted the "new me", but it seems like the "new me" is going away. 

[kat73]

I feel so much the same way.  I'm older than you, so I'm always terrified of Alzheimer's showing up.  It would take bravery, but you could talk to your primary care doctor and ask to get a baseline cognitive workup from a neurologist, in the hope that you pass with flying colors and can relax. 

 

I think two things about the brain fog:  One is, I'm a big believer that heavy stuff that's on our mind doesn't go away just because we're not thinking about it at the moment.  It's an old slumbering bear, still in there, taking up space.  And when part of your mind is working on your problems (moving from the bear analogy to a factory one), even unconsciously, the rest of your mind is having to take up the slack and is overworked, distracted, and tired.  That's when the mind makes mistakes, like calling the wrong school.  The second thing is:  once we start noticing a new symptom, we begin to see it all over the place and all the time, and it takes on a larger dimension, given the food of fear.  As CMLers, I think we're always on hyper-alert, and we can get carried away.

 

So, like all the other stuff we deal with, it's so hard to know whether it's really a real thing, and if it is real, is it a side effect of the TKI or something else - malign/benign, old age, etc.  I wish I knew what a possible scenario might be for TKI-induced brain fog (and ditto for the otherwise unexplained fatigue you also mention) - Trey?  All I can tell you, Tazdad, is you're not alone.  I have about half the capabilities I had before CML - energy, stamina, smarts, speed, strength, accuracy, memory, focus, articulation, you name it.  Half. The looks are gone, too, but you didn't ask about that!

[tazdad08]

lol Kat... We have to keep a sense of humor to survive. I am usually very positive, but this scared me. I normally just laugh at myself and say "o well". There is one benefit to chemo brain..... reruns arent as boring!

[rcase13]

Yep I can reread a book a year later and its all new to me. It's wonderful!

[dede5]

  All I can tell you, Tazdad, is you're not alone.  I have about half the capabilities I had before CML - energy, stamina, smarts, speed, strength, accuracy, memory, focus, articulation, you name it.  Half. The looks are gone, too, but you didn't ask about that!

Kat, you hit all those nails on the head.

 

Also, I truly believe the Reader's Digest quote and column, 'Laughter is the Best Medicine'. Don't know how else I would've made it this far, that and my faith.

[chrissy778]

I backed into the garage door with our car because I thought I hit the button to open it and was not paying attention.

[kat73]

Chrissy - I did the exact same thing - only ten years before I got CML!  I guess that gives me a lower baseline to measure from . . .

[CML2012]

Oh my. My kids keep fussing at me for asking repetitive questions. I definitely need them to read this post. By the way I am a school teacher. (I hope you got lunch to your child). I do ok but when you are tired you do become forgetful. My family says it is my age but I am only 45! I know all of this is not funny but you guys did make me laugh!!

[Frogiegirl]

I have a note book I jot things down in when I think of them. ....have note books everywhere even in my car. After waking for my 3a.m tasigna dose I recently wrote "mow front lawn" um there's two feet of snow out there. ....felt good crossing it off the list.

[tazdad08]

WOW.... I actually forgot that I posted this. I did enjoy the laughs and made me feel better. Hope those garage doors and up and the snow got mowed!!!  Thanks to my cml family!

[tazdad08]

Oh my. My kids keep fussing at me for asking repetitive questions. I definitely need them to read this post. By the way I am a school teacher. (I hope you got lunch to your child). I do ok but when you are tired you do become forgetful. My family says it is my age but I am only 45! I know all of this is not funny but you guys did make laugh!!

Yep.... thank God his mom is good to me.. She took it to the right school. lol..

[winespritzer]

So maybe brain fog made me phone the same sprycel funder back to back. And when I heard the same name twice, I thought it was a very popular name. The person was nice and told me I had just called her. In any event I didn't make the income cutoff and was turned down. Yikes, now gotta pay out until I hit $4700, I think and then a percentage of cost. Yuck.
I know I have truly mastered procrastination and napping.
I have also texted many people in error, if they have the same first name. I was forgetful before cml but now, forget it. Blueberries don't help.
I do think about dementia. My husband has it and I know it affects the spouse. Yesterday I went out and left the gas on. Quitting cooking.
Humor though is the super med.
Winespritzer

[Buzzm1]

So maybe brain fog made me phone the same sprycel funder back to back. And when I heard the same name twice, I thought it was a very popular name. The person was nice and told me I had just called her. In any event I didn't make the income cutoff and was turned down. Yikes, now gotta pay out until I hit $4700, I think and then a percentage of cost. Yuck.
I know I have truly mastered procrastination and napping.
I have also texted many people in error, if they have the same first name. I was forgetful before cml but now, forget it. Blueberries don't help.
I do think about dementia. My husband has it and I know it affects the spouse. Yesterday I went out and left the gas on. Quitting cooking.
Humor though is the super med.
Winespritzer

While In the Donut Hole, Medicare Consumers pay:

2016: 45% for brand-names and 58% for generics
For 2016, the Medicare Donut Hole will be $3,310 to $4,850.

[winespritzer]

Thanks Buzz,
I forgot that pricing would be different in 2016. Does all of this mean that once I pay out $4850, my next bills will be 45per cent of about $11,000? I think that's the cost of sprycel, unless it increased.
I sure will hate getting a 3 month supply and having something go awry that would force me to discontinue the med. What a waste of money that would be. Will ask onc for a month prescription. If I could get 2 weeks, I would even do that.
Praying to be one of those cessationists!!!
Winespritzer

[Buzzm1]

Thanks Buzz,
I forgot that pricing would be different in 2016. Does all of this mean that once I pay out $4850, my next bills will be 45per cent of about $11,000? I think that's the cost of sprycel, unless it increased.
I sure will hate getting a 3 month supply and having something go awry that would force me to discontinue the med. What a waste of money that would be. Will ask onc for a month prescription. If I could get 2 weeks, I would even do that.
Praying to be one of those cessationists!!!
Winespritzer

Winespritzer, with most Medicare supplement plans, once you have entered catastrophic coverage (beyond the donut hole), you pay 5% of the cost of the drugs; $11,000 x .05 = $550/mo. ... with Kaiser Senior Advantage, when I enter catastrophic coverage, it's only a $12 co-pay for one month of TKI (I don't know if that has increased for 2016).

[winespritzer]

Thank you Buzz,
I guess for next year I should shop for a better plan such as yours. Am going to seek help from my union.
Winespritzer

[Gail's]

I found a page oat Medicare.gov that compares supplemental insurance coverage. You plug in all the drugs you take and it gives you the annual out of pocket cost for a years' worth of your drugs. It even listed alternate drugs you might take to compare with expensive brand names. My annual costs ranged from 8900 to 11000. That doesn't include dr visit or lab copays. The plan that was 8900 out of pocket is $50/mo premium and has some vision and dental too. I checked on Kaiser supplemental plans and the one that seemed the best was $239/mo. Still with about $6000/year out of pocket prescription cost just for imatinib. I didn't ask them about the costs for the diabetes and depression meds I take. I honestly don't know how I'm going to make it $ wise. I think even with pension and retirement as well as SS I'll still be poor enough to get food stamps and maybe housing assistance if those programs are still around in 2 years. Or I may wheel my walker to work till I die!

[winespritzer]

Dear Gail,
Thank you for the lead. What a life we now lead! Am just telling myself to be happy there's a drug for cml. I too will be broke down the rd with probable need for my other conditions and my husband's...even w my pension and ss.
It is kind of crazy that our drugs ain't covered by Medicare because we take them orally, not via infusion.
But I know we have much to be grateful for...including this site.
Young friend of mixed ancestry needs bone marrow trans for her aml by April.

[winespritzer]

Try walking for the depression. That seems to help me...plus chocolstes, lots!!!But don't skip the meds either.
Be well,
Winespritzer

[Buzzm1]

I found a page oat Medicare.gov that compares supplemental insurance coverage. You plug in all the drugs you take and it gives you the annual out of pocket cost for a years' worth of your drugs. It even listed alternate drugs you might take to compare with expensive brand names. My annual costs ranged from 8900 to 11000. That doesn't include dr visit or lab copays. The plan that was 8900 out of pocket is $50/mo premium and has some vision and dental too. I checked on Kaiser supplemental plans and the one that seemed the best was $239/mo. Still with about $6000/year out of pocket prescription cost just for imatinib. I didn't ask them about the costs for the diabetes and depression meds I take. I honestly don't know how I'm going to make it $ wise. I think even with pension and retirement as well as SS I'll still be poor enough to get food stamps and maybe housing assistance if those programs are still around in 2 years. Or I may wheel my walker to work till I die!

Gail, can you post the link for the page you cited ... tia