17 replies to this topic

[CML??]

Can anyone tell me whether there is any research/evidence or therapies regarding memory related issues and Tasigna?  I need to figure out what questions to ask the doctor and also how to broach this subject with my spouse who is not convinced there is anything wrong with their memory.  There is.  My spouse is recently diagnosed and has been taking Tasigna for about six months and has been having some recent problems remembering important things.

[tazdad08]

I don't know of any research directly related to Tasigna. Seems that most oncologist deny memory issues but I can tell you they are real. I seem to have less trouble now than my first year of TKIs, but there are a few things in my past that have basically been erased from my memory. Most of my issues seem to be with short term memory.

[Trey]

TKI drugs can cause lack of focus, not necessarily memory issues.  They can seem like the same thing.  The drugs can interfere with sugar metabolism and other issues that can cause a mental "fog".  This usually gets better over time.  So I would just be a little patient with him and wait for things to improve over time. 

[tiredblood]

I would suggest doing things that required mental acquity early in the day, rather than after becoming tired.

[CML??]

Hey there.  These are definitely memory issues and not lack of focus.  I am talking about him forgetting entire conversations that required him to make several levels of critical thinking decisions and problem solving conclusions and then a couple of weeks later when the decision is implemented he has no recollection of the conversation ever having occurred which is a gap that can't be explained by a lack of focus in a moment.  He's usually unfocused and I've been dealing with that for all our life together, so that's old hat for me.  This is definitely new and recent.   I am not speaking from a lack of patience, I am definitely used to rolling with lack of focus, I am just concerned and want to address this with his doctor if there's any long term issues or problems that can arise that we need to be aware of.

[Trey]

Given all that, I doubt it has anything to do with the Tasigna.  It does not do what you describe. 

[steelpony5555]

I think they need to go back and restudy this issue....I know the US studies the hell out of new drugs but I do think there is something to this....I am a person that had ...I say had ...an excellent memory.  Probably better then the average bear.  ..Now I do have brain fog where yes I try now to do things in the morning and the heck with the afternoon.  It took me 2 weeks to build a pavilion that would have taken me 2 days.to do.  But I also have memory loss.  I have trouble remembering names or addresses that I should not even have to think about.  Names of close relatives or friends....It is very frustrating when I use to remember a phone number 6 months later.....

[CML??]

Thanks to everyone and especially Steelpony and Romary.  We have a doctor's appointment next week where we plan to bring up all the side effects. One of the reason I was posting here was I wanted to get some feedback as to whether this could be one, and I think it is though I wasn't finding a whole lot of research about it.  And most of it was basically what's said here.  People are saying "This is happening to me, and the pharma companies are saying "No, it's not."  We have our six month screening results next week and we plan to get with the doctor and go over everything.  He is very young and, other than the cancer, actually in really excellent health and that's why I was wondering about the memory issues as being Tasigna related.  He's still in his thirties so I don't think it's possible to be anything related to arteries or dementia, he's VERY healthy...again, other than the cancer (that sounds so weird to say I know).  My husband built his own business and it's a business that requires a lot of ...mental acuity... so the recent changes have been noticeable.  It's really helpful to me to hear from others who have gone through this so I can know what to expect.   The doctor didn't get a baseline EKG when we started because he said he was too young to worry about it, which in retrospect, I think might have been a mistake.

[kat73]

CML??  Here's another idea you might consider:  Your spouse is recently diagnosed.  That means he's really still in the shocked phase, trying to make sense of what has happened, trying to wrap his mind and emotions around a very Big Deal.  He's also taking in tons of new information - complicated, sophisticated information that doesn't come easily unless someone has a science background.  So, you know how when you're thinking really hard about something, and someone asks you a question and you don't even hear them, let alone have the capability to give an answer? That's probably happening to him a lot.  Also, even when he switches into attention mode, his subconscious is still chewing on this very big problem.  Worry can be both overt and covert - when it goes underground it shows up in messed-up sleep, memory loss, lack of focus and concentration, all of that cognitive stuff.  It's like your brain just can't run full steam ahead on two different tracks.  I'm not saying it's not the Tasigna.  Just suggesting a possible, nonpathological way of looking at it (perhaps relieving another worry - the worry that "something's wrong with his brain") 

[CML??]

Hey there, first a big thanks to Romary again. I am going to insist my husband get an EKG. He's actually very active physically and I think we need to know what if anything Tasigna is doing to his heart. I am going to pretty much insist on it at our appointment this week. 

 

As for the "running program" theory.  ...without giving away too much, my husband is pretty much the stereotype of the absentminded genius.  He's always running a different program and I've long since learned to compensate for lack of attention and focus.  When we have serious discussions we have "code words" and situations like okay, sit down we need to talk, pay attention.    These scenarios that he's forgetting are .... Massive.  Like ...there's no way that just absentminded running another program could account for. I know him when he's running another program, even a serious program.  But I've been dealing with that for...ever.  There are 3 examples of really important, serious conversations that the "other program" idea just don't account for.   Like.... this is not it, but imagine you had a conversation about your mother-in-law moving into your home with you. And you guys both sat down and had a looong discussion about the pros and cons of his mother moving in with you for a few months while her house was being done and what did he think and you decided to go forward with your mother in law moving in and how that would work and what the guidelines would be.  And then 2 weeks later he didn't remember the conversation...at all.  Or that his mother would be moving in for 3 months. It's basically stuff that's that big.  Usually when it's just his "absentminded" phase, there's a ..wait, what do you mean we need to clear out the guest room before my mother gets here... what... and then .... "oh right she's moving in"...and he pulls it up.    This is not that. This is, "we never had that conversation, what do you mean my mother's moving in??".  He completely can't remember big huge discussions, not just things like "hey we agreed to go the movies this week and see that show".  

 

But I do want to thank everyone for their comments, I am absorbing them and thinking about everything and I am definitely going to insist on him getting an EKG now. 

[kat73]

Thanks, CML?? for the great example.  That does, indeed, sound more serious.  I can imagine how very worried you are.  He is lucky to have you in his corner!  You are right to doggedly pursue this and get answers and help.

[CML??]

I want to thank everyone again. His PCR results were good.  At diagnosis he was 100 %, 1.6 at 3 months and .3 today, so we are feeling positive and hoping to see a continued decline, but very happy with that result.  Doc wasn't much help on the memory loss but did note it and has given us a referral to a cardiologist for an EKG, so that will be happening this week.   I had been thinking I wanted to push for one anyway because my husband is really active and actually he does have a benign heart murmur anyway and I know Tasigna does come with the warning so thanks again for giving me the kick in the pants to make sure he gets the test. 

[KerriD]

I have had memory issues since I started Tasigna in 2011.   The drug works great on my CML.... reached undetectable status in just a few short months.  But the memory issues cause  a lot of issues in my life. My doc put me on Vyvanse and that does help. But the memory issue is a constant challenge for me.

[rcase13]

Has anyone tried taking an ADHD drug to help with the focus and memory issues? I see that KerriD above is taking Vyvanse. My son has inattentive ADHD. We have resisted medication for him since he was in 3rd grade. But now he is in High School and he is having a really hard time. We gave in and will start him on medication soon. Tempted to take one of his!

[Buzzm1]

Has anyone tried taking an ADHD drug to help with the focus and memory issues? I see that KerriD above is taking Vyvanse. My son has inattentive ADHD. We have resisted medication for him since he was in 3rd grade. But now he is in High School and he is having a really hard time. We gave in and will start him on medication soon. Tempted to take one of his!

You would be better off lowering your Tasigna dosage.  

[JohnFromChicago]

Hey CML??,

 

I was diagnosed with CML a little over a year ago at 28 and I take Sprycel 100mg. I, like your husband, started my own business single handedly a few years ago. I also have considered myself to be absentminded my whole life but I always used to be able to recall anything if I focused hard on it. My mind is always working through a different task in my head than what I am physically doing at that time. Like your husband I also have had memory problems since diagnosis. I pack and ship all my own orders for my business. I have shipped literally 1000s without a single error. Since diagnosis on two occasions I have shipped the wrong item to my customers because I incorrectly recalled a part number which should have been obvious for me. In addition to my small business I have a 9-5 office job testing financial software which requires me to write java programs to test other larger java based programs. Since diagnosis I have noticed a few times code I have checked in which I wrote that I have no recollection of writing. Luckily this does not affect my job performance at all but it is still scary. My gf also gets frustrated with me for forgetting conversations we had entirely. I consider my lifestyle to be pretty low stress (besides CML). My small business requires little effort and I enjoy what I sell. For my 9-5 job I love the problem solving aspect of it and I do not have to manage others or worry about corporate politics. I have seen friends on both sides running there own business much larger than mine, law firms, accounting agencies etc and I have friends who have climbed the corporate ladder to positions of directors. They all seem very stressed to me. I enjoy a "lighter" version of both combined which gives me financial freedom without heavy stress on either end. Anyways I am not going to blame Sprycel for my memory loss yet. My oncologist and many others have suggested that my memory loss is probably caused by the emotional stress of dealing with the diagnosis and now the 3 month PCR tests, waiting for results, ect. I don't show my emotional stress of CML to others but I know it is still inside me all the time. I believe that someday hopefully 1-2 years from now I will eventually never worry about CML. One way I have found that seems to help my memory at least for a few days is to do something that's fun/exhilarating but also requires 100% of my focus like snowboarding or wakeboarding. I am nowhere near a pro at either one so it requires 100% of my focus but I find it to be very therapeutic. Over Fall I bought a used motorcycle and repaired it back to mint condition. I have no mechanical training so this also required my 100% focus and seemed to revive me memory every weekend when I would replace a different part. 

[kat73]

You have found some boffo coping mechanisms, bravo!

[gerry]

Memory issues hit me around the three and a half year mark, I was also on a lower dosage of Gleevec. I thought I had escaped that side effect. It was the first side effect to disappear when i came off, head started to feel clear again after around 2 weeks of being off a TKI.