This week, with permission from my Dr., I was on a "break" from taking the LDK378. I've been off it for 4 full days and it feels normal and great!
Last week, after taking the 5 (150 mg ) pills straight for 5 days, where I basically either vomited almost everyday, and had GI issues everyday with cramps, bloating and diarrhea every single day, I called in, asking for lower dosage. And of course, my generous Dr. N, agreed to lower it to 4 pills per day. But, still the 4 pills didn't make a difference, and my side effects bothered me so much that my whole body ached and I could barely hold any food down, and food no longer tasted good. In fact, I vomited so much that I had no appetite to eat.
So, I called into my Dr.'s office and that's when the team suggested I give my body a break and restart at a lower dosage of 3 pills per day. They said to restart anytime when I am ready.
As much I love the "break" from LDK378, I've decided to resume the LDK again tomorrow, starting with 3 pills. The break was really to let my body, immune system and GI, to recover and heal from all the vomiting and diarrhea. I'm feeling stronger and enjoy eating again.
I've done research and this time, I plan on being prepared by taking all my premeds, and timing it. My plan is to eat a SOLID breakfast, take my Zofran, than in 20 minutes take the 3 LDK378 pills. Then, in half hour before noon, I will take an Immodium pill to prevent the stomach cramps, bloated, aches and diarrhea before eating lunch. And if by 4, if I still nauseous, then I will the anti vomitting pill Zofran again. I've learned that my cramping and diarrhea starts to hit at about 4:30 and doesn't end til around 8PM, daily.
Last week, after taking the 5 (150 mg ) pills straight for 5 days, where I basically either vomited almost everyday, and had GI issues everyday with cramps, bloating and diarrhea every single day, I called in, asking for lower dosage. And of course, my generous Dr. N, agreed to lower it to 4 pills per day. But, still the 4 pills didn't make a difference, and my side effects bothered me so much that my whole body ached and I could barely hold any food down, and food no longer tasted good. In fact, I vomited so much that I had no appetite to eat.
So, I called into my Dr.'s office and that's when the team suggested I give my body a break and restart at a lower dosage of 3 pills per day. They said to restart anytime when I am ready.
As much I love the "break" from LDK378, I've decided to resume the LDK again tomorrow, starting with 3 pills. The break was really to let my body, immune system and GI, to recover and heal from all the vomiting and diarrhea. I'm feeling stronger and enjoy eating again.
I've done research and this time, I plan on being prepared by taking all my premeds, and timing it. My plan is to eat a SOLID breakfast, take my Zofran, than in 20 minutes take the 3 LDK378 pills. Then, in half hour before noon, I will take an Immodium pill to prevent the stomach cramps, bloated, aches and diarrhea before eating lunch. And if by 4, if I still nauseous, then I will the anti vomitting pill Zofran again. I've learned that my cramping and diarrhea starts to hit at about 4:30 and doesn't end til around 8PM, daily.
I am hoping this "preventive" schedule and plan works. I think I was miserable and suffered needlessly because I was not prepared with all the preventive side effects management pills in the last 2 weeks. Hopefully, I wouldn't need to take a second dosage of the anti naseua meds called Compazine at 4 PM which I have on hand. Mostly likely, I wouldn't take this Compazine drug since I've read some horrible, horrible side effects of this Compazine drug. Many people who were given it said "This drug made me feel like I wanted to jump out of my skin. I had no idea the drug was causing it. Had to be given a sedative. Horrible drug!! I'd rather vomit." and another said "Worse medicine I have ever received through the IV in an ER facility. Almost lost my mind on this one. Had to receive 2 shots of Benadryl just to settle down enough to sleep through the affects. It's already the following day and my eyes are still blood shot red and I find it very difficult to sit still. Best advice: stay clear away from this one.
I hope adding the Imodium at noon before lunch will help prevent the GI issues. Will find out tomorrow. Hoping it's as simple as that and it does the trick. I need this drug and I need to do what I can to continue to take it. It's my "miracle" pill. My life, my hopes and dreams of stability and possibly even shrinkage is all dependent on this trial drug LDK378. Praying for a miracle! Dreaming big.
Other than trying to manage the sides effects of this trial drug LDK378, and feeling miserable with the side effects, I'm keeping busy as usual with working, interacting with the kids and trying to slow down, and enjoy the nice, summer weather with my family, friends and my dogs and cat. I'm having a fantastic time in the weekends, relaxing and doing arts and crafts with kids and slowing down. I was going to sign the kids with loads of activities like swimming and art and dance classes, but because I just want to relax and hang out with the kids at home, I didn't.
In the weekends, after the kids Kumon, it's lovely to feel free throughout the day and weekend to do anything we feel like doing. It's super nice and we're loving it! We're loving being at home hanging out and spending time as a family.
Of course, we still try to have play dates and do local museum and park play date trips,and it's great not having to constantly run from one committed class session to another. It's all fun and family time now and I wouldn't want it any other way. Lots of Love.
