ritalin

Daisylin
Daisylin Member Posts: 365
in Esophageal Cancer #1
I just read mruble (Mary's) blog which is given a link on her profile page...... what a story! I would recommend giving it a read when you have some time to spare.

One thing she mentioned is that her hubby was given ritalin for fatigue control. From there I did some research, and found many sites which supported this. Has anyone else tried this? If so, what results have you found? Lee has been VERY tired lately, sleeping almost around the clock, only getting up for short periods at a time, and feeling exhausted within minutes.

Please keep in mind that he's not on chemo at the moment, and his decision is leaning towards not returning, even though the doctor has recommended it. His 15 tumors in the liver have grown by 50% in about a month as well as new tumors present, and the esophageal walls are thickening as well. He is in much pain from the liver, and his eating is minimal. Swallowing is getting harder, appetite is diminishing.

Thanks,
Chantal
stage ivb wife

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Welcome
    Hello and welcome to our family! It is unfortunate that you have to be here, but we are a very caring, loving, and knowledgable bunch of people. I was a caregiver for my dad. He passed from EC in March 2010 when the ec went to his liver. He declined drastically, and only survived 3 mos after this dx. As far as your husband being tired more often, I feel it is a combination of the ritilin medication, and the cancer, and pain meds. The ritilin causes you to be very calm, like a tranqulizer. There are other meds you can try. My dad was on ativan for his anxiety. It is all trial and error. Hope this helps. Keep in touch.
    Tina in Va
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
    Chantal,Everyone is
    Chantal,

    Everyone is different. My dad, 78 went from Stage III to IV in July of 2010 when the tumors spread to his liver. The docs told us it only a matter of months as was the fate of Tina's dad. My dad lived until June of 2011, and there were many very good and good days, and actually it was an infection which developed from a bedsore that finally cost him his life --- he would not have survived surgery to cut out the bedsore.

    But that being said - he was on an experimental clinical trial in Pittsburg with Erbitux and Irinotecan and his scans showed that the chemo had stopped the growth of the cancer and actually it had been reduced in some of the tumors. So the chemo was successful but we had to stop it because it was too much on dad and he wasn't able to handle the side effects.

    Don't know if Lee is strong enough to take the regime, or if it is available in Canada - Dr. Gibson at UPMC is doing the trial and I know Cher's Ricky is on the same cocktail in Texas under the supervision of the folks at MD Anderson and it seems to be providing some positive results for him as well.

    You may want to check the possibility out. I know how hard this is and hoping and praying. I will be thinking about you and know that doing nothing sometimes is the bravest thing we can do.

    Lots of hugs,

    Cindy
  • Daisylin
    Daisylin Member Posts: 365
    #4
    unclaw2002 said:

    Chantal,Everyone is
    Chantal,

    Everyone is different. My dad, 78 went from Stage III to IV in July of 2010 when the tumors spread to his liver. The docs told us it only a matter of months as was the fate of Tina's dad. My dad lived until June of 2011, and there were many very good and good days, and actually it was an infection which developed from a bedsore that finally cost him his life --- he would not have survived surgery to cut out the bedsore.

    But that being said - he was on an experimental clinical trial in Pittsburg with Erbitux and Irinotecan and his scans showed that the chemo had stopped the growth of the cancer and actually it had been reduced in some of the tumors. So the chemo was successful but we had to stop it because it was too much on dad and he wasn't able to handle the side effects.

    Don't know if Lee is strong enough to take the regime, or if it is available in Canada - Dr. Gibson at UPMC is doing the trial and I know Cher's Ricky is on the same cocktail in Texas under the supervision of the folks at MD Anderson and it seems to be providing some positive results for him as well.

    You may want to check the possibility out. I know how hard this is and hoping and praying. I will be thinking about you and know that doing nothing sometimes is the bravest thing we can do.

    Lots of hugs,

    Cindy

    Cindy, I don't know if that
    Cindy, I don't know if that regime is available here or not, (I would assume it must be) the doctor told us that the one he was on was the best, and there was only one other option that he would use on Lee. His initial treatment DID shrink the tumors, but as soon as he went on the chemo holiday, they all grew back and spread rapidly. He has just been so miserable lately, he does not want to add any more misery to his life. (chemo side effects were pretty nasty last time) Tough choice to make, but right now he's just not seeing any quality of life, as promised.

    But, as for the ritalin, maybe I was not very clear in my last post. Lee is not currently on ritalin. It's just something I discovered in another member's blog. Ritalin is actually a stimulant, not a depressant. In children it is used to stimulate certain parts of the brain to function better. It does not actually 'slow them down' by tranquilizing them, it's just opening the brain up for better, more appropriate usage. There seem to be many studies done on ritalin for cancer fatigue, and I will post a link to one of them below. The author has summarized several studies.

    http://answers.google.com/answers/threadview?id=323645

    I guess we're just looking for anything to help make life more pleasant for Lee. Perhaps less sleep and more living would be a start.
    Chantal
  • mruble
    mruble Member Posts: 174
    #5
    My husband LOVES his Ritalin
    Hi Chantal --

    It's a story I wish every day I didn't have to tell. But here we are -- you and I and everyone else here in a place where none of us want to be.

    Anyway, Chad continues with Ritalin, having been on it for just over a year at this point. Somewhere a long the line his doctor increased the dosage because the little bit he started with just wasn't cutting it. Someone mentioned that Ritalin is calming, but this is not the physiological response for someone that doesn't have ADD (or ADHD -- I can never remember which one it's used for). Instead, it's basically like Speed and provides an increase in energy. Chad's oncologist has prescribed it to a number of people and only one person stopped taking it -- because they didn't like that it made them feel a bit edgy. Chad takes it first thing in the morning and again at noon. It's quite easy to tell which days he forgets to take it at noon.

    I was so sad to read about Lee's tumors growing and the pain he's in. The decision about whether or not to return to chemo must be such a difficult one. We're not in that place yet, but it's likely we will be at some point. It's hard to even think about.

    You and Lee continue to be in my prayers!

    Mary
  • hobbssy
    hobbssy Member Posts: 16
    #6
    mruble said:

    My husband LOVES his Ritalin
    Hi Chantal --

    It's a story I wish every day I didn't have to tell. But here we are -- you and I and everyone else here in a place where none of us want to be.

    Anyway, Chad continues with Ritalin, having been on it for just over a year at this point. Somewhere a long the line his doctor increased the dosage because the little bit he started with just wasn't cutting it. Someone mentioned that Ritalin is calming, but this is not the physiological response for someone that doesn't have ADD (or ADHD -- I can never remember which one it's used for). Instead, it's basically like Speed and provides an increase in energy. Chad's oncologist has prescribed it to a number of people and only one person stopped taking it -- because they didn't like that it made them feel a bit edgy. Chad takes it first thing in the morning and again at noon. It's quite easy to tell which days he forgets to take it at noon.

    I was so sad to read about Lee's tumors growing and the pain he's in. The decision about whether or not to return to chemo must be such a difficult one. We're not in that place yet, but it's likely we will be at some point. It's hard to even think about.

    You and Lee continue to be in my prayers!

    Mary

    Hi Chantal
    The hospice Dr. started my husband on dexamethasone sub cutaneus, twice a day. He went from lying in bed 24/7 and not wanting to see anyone to an energizer bunny. He was up sitting outside, calling his friends, visiting etc. It is a false energy, but it was great for him and his friends to have a final visit. It is also very short-lived. Lasted about 10 days. It is also used to decrease the swelling of the tumours in the liver, therefore causing less pain. It's worth inquiring about. I'm glad Jim had this last burst of energy. He was more like himself while on the steroid.
  • Daisylin
    Daisylin Member Posts: 365
    #7
    hobbssy said:

    Hi Chantal
    The hospice Dr. started my husband on dexamethasone sub cutaneus, twice a day. He went from lying in bed 24/7 and not wanting to see anyone to an energizer bunny. He was up sitting outside, calling his friends, visiting etc. It is a false energy, but it was great for him and his friends to have a final visit. It is also very short-lived. Lasted about 10 days. It is also used to decrease the swelling of the tumours in the liver, therefore causing less pain. It's worth inquiring about. I'm glad Jim had this last burst of energy. He was more like himself while on the steroid.

    dexamethasone
    Lee was given dexamethasone as part of his chemo treatment on infusion days. It was given as an anti nauseant if I remember correctly. You are right, he also was the energizer bunny. He would be wired and awake all night after having it. I don't think we're at the point where we need something short lived like that, but it's handy information to have if needed down the road. I'm hoping for something a bit milder, just to keep him from napping all day. But perhaps we don't need that either yet.....

    On a positive note however, I do believe that the rough patch we had last week was in fact morphine withdrawal. He stopped taking it suddenly (not a good idea ladies and gentlemen, don't try this at home!) and that combined with not eating or drinking really knocked him on his butt. He has been much perkier the last 2 days, so needless to say, we're very relieved. The doctor at the on call cancer centre told us that it's not likely that he'd suffer that badly just from morphine withdrawal, and that it must be disease related, but I beg to differ. We watched several videos about people going through heroin withdrawal, and BINGO, that was Lee exactly...... extreme hot and cold flashes, twitching arms and legs, constant rubbing his head, unbearable tiredness, but unable to sleep, vomiting and unable to focus his vision.

    So, now we seem to be back to the 'new normal', and he's been given a new painkiller, which he hasn't really even needed, HORRAY! I think he was taking the morphine, which he reacted poorly to, and unknowingly was taking more and more of the PRN (bumper) morphine, thinking it was the progression of the disease causing his misery, and then reacting even more to that... then the doctor increased his dose even more, bring on more side effects.... Vicious cycle, but at least we've self diagnosed and hopefully fixed the problem. Sometimes I think I know more about EC than our oncologist does. SCARY!!!! I swear that having the Canadian "free" health care is a catch 22...... seems like we're getting what we pay for. Thank God for all of you, we'd be sunk without your advice and information.
    Chantal
  • momofmany
    momofmany Member Posts: 8
    #8
    Ritalin is a stimulant
    So even though found out last week I do not have EC, I'm still reading here....because...

    Anyway, Ritalin is a stimulant, and acts as such in those who do NOT have ADD or ADHD. I have Narcolepsy, and Ritalin is commonly prescribed for people with narcolepsy to help us stay alert. Then in 2001 or so Provigil came out, which does a better job, though with different side effects. "Different drugs for different people" applies here. Ritalin might work for one person (I had horrible migraines from it) where Provigil or Nuvigil will work better for someone else. (Provigil works great for me.) I know lots of people who have MS who have been prescribed Ritalin, Provigil or Nuvigil to combat the side effect of drowsiness from some of their meds.
  • zinniemay
    zinniemay Member Posts: 522
    #9
    Ritalin
    My Hubby was given Ritalin too. He is tired so much . And he eats when he is worries. So they stated him on it Thursday July 21 , I have seen some of improvement. He is eating less and seams to be a little more active. I can say he eats or was eating so much in 3 weeks he had gained 6 pounds. He is Larynx stage 4 mets to lungs. Sp think it is helping him some.
    Jennie
  • Unknown
    Unknown
    #10
    Daisylin said:

    Cindy, I don't know if that
    Cindy, I don't know if that regime is available here or not, (I would assume it must be) the doctor told us that the one he was on was the best, and there was only one other option that he would use on Lee. His initial treatment DID shrink the tumors, but as soon as he went on the chemo holiday, they all grew back and spread rapidly. He has just been so miserable lately, he does not want to add any more misery to his life. (chemo side effects were pretty nasty last time) Tough choice to make, but right now he's just not seeing any quality of life, as promised.

    But, as for the ritalin, maybe I was not very clear in my last post. Lee is not currently on ritalin. It's just something I discovered in another member's blog. Ritalin is actually a stimulant, not a depressant. In children it is used to stimulate certain parts of the brain to function better. It does not actually 'slow them down' by tranquilizing them, it's just opening the brain up for better, more appropriate usage. There seem to be many studies done on ritalin for cancer fatigue, and I will post a link to one of them below. The author has summarized several studies.

    http://answers.google.com/answers/threadview?id=323645

    I guess we're just looking for anything to help make life more pleasant for Lee. Perhaps less sleep and more living would be a start.
    Chantal

    This comment has been removed by the Moderator
  • jojoshort
    jojoshort Member Posts: 230 Member
    #11
    Daisylin said:

    dexamethasone
    Lee was given dexamethasone as part of his chemo treatment on infusion days. It was given as an anti nauseant if I remember correctly. You are right, he also was the energizer bunny. He would be wired and awake all night after having it. I don't think we're at the point where we need something short lived like that, but it's handy information to have if needed down the road. I'm hoping for something a bit milder, just to keep him from napping all day. But perhaps we don't need that either yet.....

    On a positive note however, I do believe that the rough patch we had last week was in fact morphine withdrawal. He stopped taking it suddenly (not a good idea ladies and gentlemen, don't try this at home!) and that combined with not eating or drinking really knocked him on his butt. He has been much perkier the last 2 days, so needless to say, we're very relieved. The doctor at the on call cancer centre told us that it's not likely that he'd suffer that badly just from morphine withdrawal, and that it must be disease related, but I beg to differ. We watched several videos about people going through heroin withdrawal, and BINGO, that was Lee exactly...... extreme hot and cold flashes, twitching arms and legs, constant rubbing his head, unbearable tiredness, but unable to sleep, vomiting and unable to focus his vision.

    So, now we seem to be back to the 'new normal', and he's been given a new painkiller, which he hasn't really even needed, HORRAY! I think he was taking the morphine, which he reacted poorly to, and unknowingly was taking more and more of the PRN (bumper) morphine, thinking it was the progression of the disease causing his misery, and then reacting even more to that... then the doctor increased his dose even more, bring on more side effects.... Vicious cycle, but at least we've self diagnosed and hopefully fixed the problem. Sometimes I think I know more about EC than our oncologist does. SCARY!!!! I swear that having the Canadian "free" health care is a catch 22...... seems like we're getting what we pay for. Thank God for all of you, we'd be sunk without your advice and information.
    Chantal

    Withdrawal
    Hi Chantal,
    We had the same problem when Steve was doing Irinotecan and couldn't take his regular pain med, dilaudid. He stopped cold turkey and boy was that a mistake. I never realized he was going through withdrawal then, too, and now in retrospect perhaps he could have kept going with the Irinotecan. We blamed his week from hell on the chemo but it could very well have been withdrawal from dilaudid.
    The School of Hard Knocks for sure.
    Jo-Ann
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #12
    Daisylin said:

    Cindy, I don't know if that
    Cindy, I don't know if that regime is available here or not, (I would assume it must be) the doctor told us that the one he was on was the best, and there was only one other option that he would use on Lee. His initial treatment DID shrink the tumors, but as soon as he went on the chemo holiday, they all grew back and spread rapidly. He has just been so miserable lately, he does not want to add any more misery to his life. (chemo side effects were pretty nasty last time) Tough choice to make, but right now he's just not seeing any quality of life, as promised.

    But, as for the ritalin, maybe I was not very clear in my last post. Lee is not currently on ritalin. It's just something I discovered in another member's blog. Ritalin is actually a stimulant, not a depressant. In children it is used to stimulate certain parts of the brain to function better. It does not actually 'slow them down' by tranquilizing them, it's just opening the brain up for better, more appropriate usage. There seem to be many studies done on ritalin for cancer fatigue, and I will post a link to one of them below. The author has summarized several studies.

    http://answers.google.com/answers/threadview?id=323645

    I guess we're just looking for anything to help make life more pleasant for Lee. Perhaps less sleep and more living would be a start.
    Chantal

    Hello Chantal
    Thanks for the
    Hello Chantal
    Thanks for the info on Ritilin. I was getting that confused with ativan I think. Ritilin and adderal are the stimulent meds. I was glad to read that your hubby is doing better this week. Take it slow. Live each day as if it were your last, you never know what tomorrow will bring. My dad did not do well with the morphine pain med either. He took too many, and did not eat or dring enought to compinsate. Keep in touch. Keep up the good work!
    Tina in Va
  • mruble
    mruble Member Posts: 174
    #13
    Daisylin said:

    dexamethasone
    Lee was given dexamethasone as part of his chemo treatment on infusion days. It was given as an anti nauseant if I remember correctly. You are right, he also was the energizer bunny. He would be wired and awake all night after having it. I don't think we're at the point where we need something short lived like that, but it's handy information to have if needed down the road. I'm hoping for something a bit milder, just to keep him from napping all day. But perhaps we don't need that either yet.....

    On a positive note however, I do believe that the rough patch we had last week was in fact morphine withdrawal. He stopped taking it suddenly (not a good idea ladies and gentlemen, don't try this at home!) and that combined with not eating or drinking really knocked him on his butt. He has been much perkier the last 2 days, so needless to say, we're very relieved. The doctor at the on call cancer centre told us that it's not likely that he'd suffer that badly just from morphine withdrawal, and that it must be disease related, but I beg to differ. We watched several videos about people going through heroin withdrawal, and BINGO, that was Lee exactly...... extreme hot and cold flashes, twitching arms and legs, constant rubbing his head, unbearable tiredness, but unable to sleep, vomiting and unable to focus his vision.

    So, now we seem to be back to the 'new normal', and he's been given a new painkiller, which he hasn't really even needed, HORRAY! I think he was taking the morphine, which he reacted poorly to, and unknowingly was taking more and more of the PRN (bumper) morphine, thinking it was the progression of the disease causing his misery, and then reacting even more to that... then the doctor increased his dose even more, bring on more side effects.... Vicious cycle, but at least we've self diagnosed and hopefully fixed the problem. Sometimes I think I know more about EC than our oncologist does. SCARY!!!! I swear that having the Canadian "free" health care is a catch 22...... seems like we're getting what we pay for. Thank God for all of you, we'd be sunk without your advice and information.
    Chantal

    So good to hear!
    Chantal -- I'm so glad Lee is doing better! I know what a relief ig must be for you!! Mary

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