I don't know much about Ritalin, but knowing what I do know, my chemo brain would have to be so severe that I basically couldn't function before I considered doing this. Likewise I would rather change my TKI drug than introduce Ritalin into the mix. If Gleevec was the only option, that would be a different story, but like any other side effect, if you have such a severe side effect from Gleevec then it would appear it is not the right drug for you and you should try Tasigna or Sprycel first.
Just my opinion - best of luck, I hope you find some relief soon.
I have waited a bit to post to this question, wanted to have some form of response to share. I visited the PCP this week with a veiled threat. I hate how Sprycel (even the 100 mg) makes me feel and I sometimes question quantity vs. quality. I know, I shouldn't but I do. So, this past Monday I began taking 10 mg of Ritalin three times per day. My first is at 6 a.m. am up to get the boy off to school, I take the second around 11:30, and then the 3rd dose around 4-4:30. I have to tell you, I am elated with the results. I can think, I have energy, and I am not sitting on the couch like a moldy potato. This week I have been out and about more than I have been in the past 4 months. I will be cautious, it is new, so hopefully it is not the placebo effect, but there are several good things about Ritalin, it does not interfere with the TKI's but I do not take it with the Sprycel anyway. Ritalin is in and out of the system in about 5 hours, so no long lasting effects. There are two items to consider, it may be take some persuading to get your dr to try the prescription, and you will be started at the lowest dose possible, if they are willing to work with you, an increase is possible with greater, but not over the top effects. The most important concept with Ritalin is, if by any chance a person is ADHD, this med will not work for you, it will make you more laid back and tired. So monitoring your effects will be important. From the first day I took it, I am now on my 5 day, I have had no side effects, the appetite is a bit smaller, not a problem there, and I have energy to keep moving, instead of perching on the couch. This option will not be for everyone, and Ritalin has some negative information attached to it, but for me, a random suggestion from a friend who suffers from MS started my journey, and for now it is working and working well. I am excited, I feel better, I have the want to move and do things, and I honestly have not noticed much in the way of brain fog for days. To each their own, but I would honestly recommend a conversation with your doctor if you are interested.
Thanks for the input. I just stared it in just the morning. It does take the ege off, but not for long. I need to talk to my onc about either taking more during the day, or increasing the dosage in the morning. Right now I'm just taking 5mg in the morning, and by the time I get to work ad start really using my brain, it's back to that normal mushy foggy feeling. I'm glad your feeling more normal. Hopefully my time will come soon.
I started on the 5 mg, called them the second day and said nope, not high enough. 10 mg seems to be doing the deal. I am tired today, but was an idiot last night, was up till after 2, (of course the Judy police busted me on that one) Best of luck and talk to your dr if you believe the 5 mg is working but a higher dose would be better for you. These are very low doses we are discussing, so I am fairly sure dr will be receptive to a bump in mg. Best of luck!
Is Pam carrying on again. Tell her to get to bed, and when she gets up in the morning, unpack those boxes she keeps looking at. She never did tell us if she found her underwear ,At least I only lost mine for a couple days, it's been a couple months since she told us she lost hers.
I think I may be able to handle this new bp med. Yeah! Other than that I've been feeling pretty good. So as soon as it warms up I'm gonna start walking and try to get some spring cleaning done Ugggg! I just want to shut the fireplace down until next winter. Okay I'm going to finish my glass of wine and go nighty night. I see my onc tomorrow and I'm hoping he'll reduce my S to 50mg. a day. The less meds I have to take the better.
Take care Love Billie
I'm so glad you may be able to handle your new bp medicine. Please let us know how your onc visit goes, hoping all is well and that you are able to reduce your Sprycel. As for Pam, forget the underwear, we have to get her to install her oven. It is still sitting in the hall. What are we going to do with her?
It sure is a relief finally finding a med to control my bp. I still have to adjust to it a bit more, but I think we finally got it under control. My onc was so funny today,my bp was good,and when he came in the room he told me that I scared the sh** out of him when I last saw him in November it was 197/something I can never remember that bottom number. I had a GREAT VISIT today he said all my numbers are perfect and my bcr is still 0,my anemia is improving and my iron level is coming back up. He didn't even bring my chart into the room. I asked him about going down to 50mg of Sprycel, and he said for me to wait 1 more month and he wants me to have that bw that shows if there is any sign of the Philadelphia Chromosone left, if not then I can go down to 50mg a day. It took me almost 5 years to get to this point, I'm so excited. So you Judy,and Tedsey,and Marnie and Pat and Pammie and Pam and all the other members of my virtual family, please try to be patient, you will get there too!.
Pam has a good thing going, by keeping her stove in the hallway she doesn't have to cook. I think I'll bury all my appliances and cleaning items,you know vacuumsweeper,carpet shampooer,window cleaner etc.etc. in my hallway then I'll never have to cook again. Of course I only have a 6' hallway and all 3 bedrooms and the bathroom are right off the hallway, so I guess I would need an outhouse, and a sleeper sofa. As far as a shower goes you know what they say, too much bathing will weaken ya! Take care and I hope you feel good, I got your e-mail, I'll get back to you, Lots Of Love Billie
Message was edited by:Abena
I AM SO HAPPY THAT ALL YOUR NUMBERS ARE GOOD AND THAT YOUR BP MEDICINE IS WORKING FOR YOU. You have been through so much, you really do need a break. I'm hopeful that in one month you will be able to go down to 50mg Sprycel. As for your onc being scared sh...less, makes you wonder how many times our doctors are scared by what they see and never tell us.
Billie, your message was edited by Abena, I'm guessing she is from LLS. What did you say that had to be edited? Of course, you wouldn't be able to post it here, it would just get edited again so if you can personal email me and let me know.
As far as burying all your cleaning supplies in the hall, great idea. I am off to do that now. I'll just need to jackhammer my ceramic tile first. I know it will be the right thing to do, I know I can trust you Billie. You would never steer me wrong would you?
I had my message deleted, you just had your edited. You need more practice. Great news on the blood pressure, awesome! Judy, my 'hall' oven has become such a huge conversation piece, even to those who have not viewed it forlornly sitting in the hall, but have heard about it, I am not sure an installation will ever be possible. I thought last weekend I would be really nasty throw a table cloth over it and put our dinner plates there to eat, but because it was our anniversary, I decided it would be just too mean, even for me. Although.....this weekend is only 3 days away.
Thanks! I was a poop head last weekend. It all started when I began looking at photos from our wedding 5 years ago. Since then my mom, his dad, a two dear people have passed away. What started out as finding a few photos for the facebook page for others to laugh at ended up with me sitting mesmerized by tons of photos of people who are no longer here. Then if that wasn't enough, I got out the videos yeah there is an 's' on the end of that video word, and had to watch every one of them, even the ones that were so grainy it was hard to see anything. Bob and Nick gave up the going out for lunch idea, not sure what they did, and then around 4ish I had to stop, Nick's glasses were in so we had to go pick them up. It was dark thirty by the time we finished up with that, so we ended up going to a local hangout, Nick had a cheeseburger, Bob had a cup of soup and a small appetizer, and I had some sort of fish thingy with a tomato on top. Still not sure what it was. We came home, Nick went to bed, Bob inhaled 3 or 4 Landsharks, and then he went to bed, and I stayed up till after 2 a.m. and Judy caught me on the computer. I probably should cook something this weekend, it is Easter and I owe Bob something...... I am waiting, if he hides the computer on Friday night not only will I know why, I will also deserve the action. When you get a hour or so (will take you that long to get through it) I posted under Let's Just Talk, it was about my son, lots about him, but today he just blew me away. Still cannot believe that was my boy on that track!
I was catching up on this discussion and was wondering if we talked about the effective time of Ritalin. For most people it is in and and out of the system within 5 hours, even my PCP stated she believes it is faster for me, some of us metabolize meds differently than others, faster/slower, and other options. You could be one of those people who process meds faster than others. Although I am now on the 10 mg three times a day, this past weekend was rough. I mentioned I was an idiot and did not get much sleep, then I tried to overthink our anniversary and ended up with nothing, and on Sunday had a funeral home visit for a distant relative. I did not seem to feel much effects of the Ritalin, and I seemed to experience quite a few highs and lows during and between doses. I spoke with doctor about it, she said we will try this for a bit, and see what happened. There is an extended release Ritalin, right now we are staying away from that option because the cost is high and the co pays are also pretty steep even for BC/BS and other familar insurances. If in time the regular Ritalin you take several times a day does not level out and you continue to experience those dreaded highs and lows associated with some meds, it might be an option to talk to your dr about the extended release version. As Woof stated, that might be your best option because of how your body breaks down the med.
Ritalin has shown great promise in helping with fatigue and cancer-treatment related fog. Another drug that you may want to know about is modafinil (brand name, Provigil). The FDA approved modafinil to treat sleep disorders but it also has been shown in clinical trials to be very effective in treating fatigue and chemo brain. Patients who take it don't seem to get the jitteriness and highs and lows that you sometimes get from other stimulants.
Thank you for the info on Modafinil, I have not had any experience with this drug, my son took Ritalin at one time so that is why I am familiar with it. I am not experiencing the jitters, but especially over the weekend I have noted some high/low points. going to speak to dr about that, and also about using Modafinil. I have not looked it up yet, but because it is used for sleep disorders, can it make you tired? I know if you are ADHD and take Ritalin, you are slowed down, if you are not ADHD, then it is a boost, some people tend to abuse it, so that is why you can only receive a 30 day supply and scripts have to be written out every month, no auto refill permitted. If you don't mind me asking, do you know someone who has used this drug and noted success with it? I am off to look this up! Thanks!
Modafinil acts as a stimulant just like Ritalin (so it shouldn't make you tired). The breast cancer patients who participated in the clinical trial reported feeling more alert and focused. I do know some people who have used this drug and found it helpful, but definitely speak to your doctor about it. Here's the link to the study abstract: http://www.ncbi.nlm.nih.gov/pubmed/19309747.
Pam, what I linked to above is the abstract of the modafinil study. Here's the full text: http://onlinelibrary.wiley.com/doi/10.1002/cncr.24287/full
Thought I would update my Ritalin journey. Although the weekend was a bust, even though I did take it, I stayed up too late and it was an overload of emotions, and as Judy once said, nothing is a miracle drug. This week has been much better. Clear thoughts, I honestly cannot think of one serious brain fog moment, and the last few days my son and I have been working in the yard at the new house. We went out yesterday about noon, and raked, I did use lawn tractor but also pushed mowed a fair amount of trimming, came in at 4:30, had a quick dinner, then headed out to pick up his girlfriend for a visit. I was very interested in how I would feel today, in the past on Sprycel if I did get up and moving one day, usually the next I was not far from the couch. I did get up a bit later, but felt pretty good, sometimes muscle aches are a good feeling. We went out again today and moved about a ton of 1B limestone with shovels and a wheel barrow. I am tired, and a bit sore, but still moving. I keep wondering if the Ritalin is really working this well or it is honestly a placebo, time will tell. How is it going with your Ritalin journey? Inquiring minds want to know.
My Ritalin journey doesn't seem to be going that well. I'm taking 5MG in the morning, and then 5MG about 4 hours later. It clears the fog for about 1 hour, and then it's back to normal. I talked to my ONC about 10MG, and he wants to wait a little before going to the 10MG. I'm really fed up with this whole process. We can put a man on the moon, but we can't get this fog out of my head! Working the job that I do makes the fog worce! I work with numbers all day, and right about now i'm ready to call it quits. Even typing this e-mail is killing me right now. I have to check, and double check to make sure that what i'm saying is correct, and that my spelling is at least normal.
So, my confused journey continues.
I am sorry you are having such a hard time with this. I wish your doc would agree for you to try the 10 mg. The thing about Ritalin is, there is no lasting effects, it is in, and in about five hours, out of your system completely. I could see no difference on the 5 mg, so I admit to doing my own investigating. I am not advocating anyone to not follow doctors advice, but I am familiar with Ritalin, my son took it for a time when he was younger. I called my doc after three days, told them the 5 mg did nothing and had been taking the 10 mg for three days and explained the difference in how I felt. I was given the ok to stay with the 10 mg, and so far it is good. 5 mg and even 10 mg are small dosage amounts, adults usually start out at 10 mg, and move up to 20 mg or 30 mg. I was hoping you would have luck and some of that darn brain fog and energy had returned. The only issue I have found with the Ritalin is getting it one of those meds where you have to pick up the prescription monthy, and they cannot call it in over the phone. So I will be making a trip every month to get my refills. I am not prepared to do this right now, I am feeling pretty good, but one of these days when it is raining and not much going on, (I love it outside when it is warm) I am not going to take them and see if there is a difference. If it was a build up drug for the body, I couldn't play with the med, but since it is not, I am curious to see how different I would feel. I did not get today's dose in until after 9 this morning, so I am not going to take the late afternoon one, second dose was at 2 when I got home, so I am wondering how I will feel around early evening without the kick start of that 3rd dose at 4ish. Best of luck, and hope if you are willing to keep bugging your doctor he will agree, to the 10 mg. Incidentally, I used to be a whiz at numbers, worked in accounting half of my life, now I struggle with the checkbook and I have to be very careful, since I have been taking the Sprycel, I have become very poor with minor basic math skills. Take care John, I hope you feel better soon.