idarubicin and memory

footballalx57
footballalx57 Member Posts: 1
Hi, I am new to the site and have a question. I was diagnosed with APL in 2007 when I was 21(i am now 24)and have been in three years remission I just ended the pill maintainence program in August. I did an induction round of Idarubicin, then two more consolidation rounds, I was then put on two rounds of Arsenic as well as the 2 years of ATRA methatrexate and mercaptapurine. I have had a couple of problems since being back in school. The first is that I have had a tougher time remembering things when I study and appoinments. This is difficult because I am a PreMed student and have already retaken my first year back classes and a couple others and I cant really afford to do that anymore. My question is has anyone else had similar problems? and what can be done?

The other problem is I put on considerable weight when I got back, before I got sick I could lost weight with diet and exercise, now I am working out 3x a week 1.5 hours and am only taking in 1500-2000 calories which is what I need (I am a 6'1 24yo male).

When I was talking to my family practice dr about this she said that cancer patients sometimes have trouble losing weight and the meds affect memory some. has anyone else experienced these problems?

Comments

  • ReubenC
    ReubenC Member Posts: 16
    It's Chemo Brain
    Memory issues... check.

    Though doctors have ignored it for years, patients have dubbed it "Chemo Brain" and today it is getting more recognition as an actual side effect.

    I was also dx with APL in 2007, at 29. Your youth will put you in a better position for recovery, though it sounds like we were on different protocols. I had arsenic as part of consolidation before the last two rounds of chemo, and only a year of maintenance, same mix. I did cut it short on the 6-MP though, liver wasn't very happy.

    Now that you're done with the meds, you should start to see some improvements, though it may take a while. I still have trouble with word recall and public speaking, but it's getting better. My best advice is to play some games to exercise that grey matter. Specifically games that require cognitive function like sudoku. Start at the beginners level, trust me. I have an app that times me, which is nice to see when the times get shorter on the more difficult levels. Any brain games the require math solving on the fly also help.

    It takes a while, but it starts to work better over time. If you don't have a smart phone yet, get one. This way you can keep track of all your tasks, apts, etc. I would be lost without mine. If it doesn't get put on my calendar, it's like it never happened. I even used mine as a pill reminder since the short term memory was so bad. Also it comes in handy when waiting around the dr's office. These should be prescribed before you leave the hospital.

    Also, if you haven't opted for PCR tests instead of a marrow biopsy, I'd recommend it and your rear will thank me. Turns out us APL'ers can check our status with a blood test that's actually more accurate then a biopsy. I'm now at 6mo checkups, but after this year the doc said it would be up to me.

    As for weight, the nausea helped keep that down for quite a while, but I did gain after I stopped maintenance. I have a dog, and walk frequently because of it. As my energy increases so do the pace and length of the walks, which helped to stabilize my weight gain. However loosing has been difficult since I'm still having trouble being able to put in any real kind of workout. I'm hoping that will improve over this coming summer though, as it warms up and I move further out from treatment.

    I try to keep my diet towards healthy foods and fresh veggies, and stay as far away from processed foods as possible. I must confess I do have some fast food a couple of times a month, mostly due to lack of energy to make dinner. Schedules are tough, but I've taken to cooking meals that would serve 3 or 4, and then freeze away left overs for those slacker days. This works really well for me, but being a student would be much tougher. Try to stay away from anything in the freezer section or in a box.

    Drink lots of water. I know I don't drink enough, but I try and days I do drink a lot, I am often less hungry too, but it's still important to make sure you are eating. Water helps flush the junk out, and good hydration can also help with weight maintenance.

    I do keep some ensure on hand, since I do sometimes get bouts of nausea and have a hard time getting the energy to eat or cook. So they come in nice in a pinch.

    I limit my intake of alcohol too. I've found that I tolerate wine the best, can have a glass, sometimes a glass and a half as long as I've eaten a full meal. Beer makes me sleepy, and anything more is just asking for trouble.
  • ReubenC
    ReubenC Member Posts: 16
    ReubenC said:

    It's Chemo Brain
    Memory issues... check.

    Though doctors have ignored it for years, patients have dubbed it "Chemo Brain" and today it is getting more recognition as an actual side effect.

    I was also dx with APL in 2007, at 29. Your youth will put you in a better position for recovery, though it sounds like we were on different protocols. I had arsenic as part of consolidation before the last two rounds of chemo, and only a year of maintenance, same mix. I did cut it short on the 6-MP though, liver wasn't very happy.

    Now that you're done with the meds, you should start to see some improvements, though it may take a while. I still have trouble with word recall and public speaking, but it's getting better. My best advice is to play some games to exercise that grey matter. Specifically games that require cognitive function like sudoku. Start at the beginners level, trust me. I have an app that times me, which is nice to see when the times get shorter on the more difficult levels. Any brain games the require math solving on the fly also help.

    It takes a while, but it starts to work better over time. If you don't have a smart phone yet, get one. This way you can keep track of all your tasks, apts, etc. I would be lost without mine. If it doesn't get put on my calendar, it's like it never happened. I even used mine as a pill reminder since the short term memory was so bad. Also it comes in handy when waiting around the dr's office. These should be prescribed before you leave the hospital.

    Also, if you haven't opted for PCR tests instead of a marrow biopsy, I'd recommend it and your rear will thank me. Turns out us APL'ers can check our status with a blood test that's actually more accurate then a biopsy. I'm now at 6mo checkups, but after this year the doc said it would be up to me.

    As for weight, the nausea helped keep that down for quite a while, but I did gain after I stopped maintenance. I have a dog, and walk frequently because of it. As my energy increases so do the pace and length of the walks, which helped to stabilize my weight gain. However loosing has been difficult since I'm still having trouble being able to put in any real kind of workout. I'm hoping that will improve over this coming summer though, as it warms up and I move further out from treatment.

    I try to keep my diet towards healthy foods and fresh veggies, and stay as far away from processed foods as possible. I must confess I do have some fast food a couple of times a month, mostly due to lack of energy to make dinner. Schedules are tough, but I've taken to cooking meals that would serve 3 or 4, and then freeze away left overs for those slacker days. This works really well for me, but being a student would be much tougher. Try to stay away from anything in the freezer section or in a box.

    Drink lots of water. I know I don't drink enough, but I try and days I do drink a lot, I am often less hungry too, but it's still important to make sure you are eating. Water helps flush the junk out, and good hydration can also help with weight maintenance.

    I do keep some ensure on hand, since I do sometimes get bouts of nausea and have a hard time getting the energy to eat or cook. So they come in nice in a pinch.

    I limit my intake of alcohol too. I've found that I tolerate wine the best, can have a glass, sometimes a glass and a half as long as I've eaten a full meal. Beer makes me sleepy, and anything more is just asking for trouble.

    Also keep in mind...
    I found

    Also keep in mind...

    I found that a lot of my weight gain was actually due to muscle mass, not fat. Though I gained weight, I also increase in strength. I'm guessing the chemo and lack of eating ate away more at my muscle mass more then anything which adds to being weak and low endurance. Adding more tissue will be a good thing in the long run and will hopefully provide the strength and energy to get rid of the unwanted pounds.