After 9+ long weeks I've got the go ahead to restart Sprycel at 50 mg. (down from 100mg.) My PCR went from .02 to 1.6 (IS) so I'll be glad to start kicking the dragon again! Please keep your fingers crossed for me that I can tolerate the 50mg. with no pleural effusion!
Have a great weekend!
I wish you the best of luck with this restart!
I'm starting with Sprycel tomorrow. Until now I was with Gleevec. Not sure what to expect...
Actually this is the first time I write in one of this chats. I was diagnosed with CML almost 2 years ago and to tell the truth, until now, I wasnt very eager to read about the disease and talk with other people in the same situation. I have been very poitive all this time, but I guess I wasnt ready to learn more about it or share my experience. I guess tonight I feel like I would love to hear about other people's experience and I'm ready to learn more.
Any advice for me on the Sprycel.
Have a great night!
Glad you joined in with us. We have a lot of people who have switched to Sprycel. I have always been on Gleevec, but no matter what TKI you are on there is always some side effect or question regarding different things. These drugs do different things to differnt people. You will be glad you joined us. Hope to hear from you again.
Welcome to our family! I was like you I thought ignorance is bliss. I have had cml for 5 years, 3 years on Gleevac, & going on 2 years on Sprycel. I stumbled on this site by accident almost 2 years ago. I followed it for a couple days, I was afraid it would be a gloom and doom site. And that's the last thing we need when we are told we have cancer. But after following the board I realized they were all nuts and I would fit right in!
You'll never meet a group of people that are more compassionate,caring,& understanding. But we all have a great sense of humor, and you have to laugh once in a while. You'll get all the answers to any question you might have,whether it's about cml, or side-effects from our meds.One of the first things I learned was that every symptom we get is not cml related, or a s-e(side effect) from our tkis( Gleevac,Sprycel,&Tasigma) I'm just getting old and and I have to accept it. But I'm going to blame cml as long as I can get away with it. Hee Hee. All our meds even aspirin have s-e,and some people on tkis have no s-e, and some of us have different ones especially when we first go on a new tki, most of the s-e go away once our body adjusts to them, and once in a while a s-e will appear out of the blue then go away and never come back again. I was on G for 3 years,but the gi issues were to hard on me, but I had gi problems before that. So my onc switched me to S which gave me a headache from hell at first,which is a common s-e with S but it gradually eases up daily and it took about 2 weeks before the headaches were under control,and now I hardly ever get one, I usually lay down about 15 minutes and it goes away. I took ibuprofin liquid gels and they helped me get through those first couple weeks. Other than that S has been a lot easier on me than G was. I have a couple other health problems that I have to take medicine for. I really think if I only had to take Sprycel I would feel pretty darn good right now. Pat had a pe(pleural effusion) which is rare but she can explain it better than I can. Just jump in anytime and ask a question,or contribute to the discussion,we learn something new everyday especially from our newcomers. Sincerely Billie
I was wondering why you are switching from Gleevec to Sprycel?
I have been on Gleevec since 2005, so sorry I don’t have advice about Sprycel.
Wishing you the best.
I'm starting with Sprycel tomorrow. Until now I was with Gleevec. Not sure what to expect...
Any advice for me on the Sprycel.
Have a great night!
Wow, that was some bout of PE! Didn't realize you had been off TKI for that long. Hope the sprycel is good to you!
Did they say if it helped to do breathing exercises or anything like that to help prevent PE? When I had Pleurisy years ago, they had me taking deep breaths so many times an hour. Can't remember if that was for the PE or to get rid of the little bit of fluid in my lungs that they did not want to turn into pneumonia.
Wow, I could have sworn I wrote to thank everyone for the good wishes and for having my back, but I'll be darned if I can find it! So, thanks, everyone!
Welcome, you came to the right place for excellent information and fantastic support! Good luck with your first dose of Sprycel! It can be tougher the first few days/weeks than Gleevec or Tasigna for some and yet some say it is way easier for them. Whatever happens you can count on us for "tea and sympathy". Personally, I prefer wine when I whine!
I will keep my fingers crossed also, Hopefully you'll be able to stay on 50mg. It seems like more and more people are being put on lower doses. We know the drugs work, so now that they are learning so much more about them, I think lower doses, and less annoying side effects are in our furure. Are you taking a water pill? I have been taking one since I was on Gleevac. I don't really know how well they work, but it makes me feel more at ease taking them. A couple years ago when I was still on G my ring finger swelled up so bad, my finger was turning purple, I tried for days to get my rings off and I couldn't so I ended up having to get my rings cut off. I was sick about that, I inhereted a diamond ring,& I had my engagement ring & wedding ring, I had them all joined together a few years ago, so when they cut them off I had to have them resized and joined together again it cost almost $600.00 to repair them. We ate weiners and beans for months. I've always worn my rings, but I could have waited until we hit the lottery, but Ron insisted we get them fixed right away,he's such a great guy, he understands how annoying it is to live with this disease, and putting up with s-e off and on. The one thing I've always done is wear my rings. We didn't have much growing up,so my little rings were important to me. And if you look real close you can see the itty bitty diamonds. Moral--If your fingers start to swell take your rings off asap! Lots o Luv Billie
I just wanted to jump in and say Hi! How are you feeling? Good I hope. We are finally getting some decent weather again, it will probably snow next week, it has really been crazy for our climate for this time of year, but at least everything is nice and green,and my rosebushes are surviving. I had my first rose of summer bloom yesterday,hopefully we'll get more. I took a picture just in case. Take Care Billie
Billie, I am fine, thanks. I can't believe you have had snow. I live in the
Southern states and my garden is blooming like crazy. I love roses but
I don't have the proper sun in my garden for them. Post pictures of yours.
I'm sorry you have been having so many problems. Hope your bp drug
has resolved. I love your spirit. Nothing gets you down for long. It
must be those cold winters. They make you stronger. Right?
We're all stronger than we think, in my case I probably build up some muscles in the winter,because I just keep putting more and more clothes on. I have this pink fluffy robe that I put on over my long johns, and 4 layers of clothes, so I look like a big pink Panda Bear. I have the pink fluffy slippers too. I think we're all more sensitive to the cold from these meds. Until I get the hot flashes,we just can't win. I have an electric blanket, a ceiling fan, and another fan right beside my bed. Ron never knows what he's going to wake up to,the electric blanket is on high and I have 2 fans running. Luckily we have dual controls on our blanket. One time I got the controls mixed up when I changed the sheets, and all night I couldn't get warm so I kept turning my control up, I finally put it on high, he woke up covered with sweat, because every time I turned the blanket up it warmed his side of the bed. He wasn't to happy with me! I guess life with me isn't easy for him. But I keep him on his toes, he just walks around shaking his head a lot! Take Care Billie
It's a good thing I work at home. I had just gotten through telling my husband how cold I was this morning, took a break from my work, read your post and laughed so hard for a LONG time....I sure appreciate all the humor here and this was particularly funny to me today....thanks !
Bill, thank you for your words and sharing your experience. I'l be sure to carry in my bag losts of ibuprofen together with prednisone
PamSouth, so heres my story: I was diagnosed with CML June 21st 2010. I'll never forget that day, the pain, and how scared I was going in to the ER. But I guess you all know about this. I've been in Gleevec since then and I cant complain, I've been doing good so far. From time to time my WBC and platelets went down and my doctor talked about switching to Sprycel, but they always went right up, so I kept on with Gleevec.
On my last visit to the doctor, we talked to him about my chances of being able to grow my family. We have a little boy who is turning 3 on Monday and who is the best thing that has ever happended to me. And I would loved to give him a brother/sister and selfishly, I want to be a mommy again... We have discussed this with the doc from the begginning of the treatment and he has always said it's not impossible. Even though evrybody else in my life thinks (except my husband, who supports me even thought he is not really sure about all this...) so and they probably think I'm crazy for keepping all the baby clothes, toys, ...from my little Diego instead of giving them away. I know is selfish of me to keep them while somebody in need could use them, but I still have hope and faith, that one day I'll be able to use them again, so I hang on to them...
So going back to my doctor, he thinks I could get a deeper and faster response with Sprycel than with Gleevec. Right now I'm in MMR but I will need to have achieved a complete remision and keep there for a while before even thinking about the possibility of stopping the meds to get pregnant.
At first I was not really sure about changing to Sprycel. I took me a while to adjust to Gleevec but now is part of my life, and moving into something new is a bit scary. But we decided to go ahead and try (I can always go back to Gleevec if I cant tolerate the Sprycel). Plus my doctor says now is the time to change. Gleevec will be off patent soon and will become much cheaper, so insurance companies wont be so happy to change to a more expensive drug...
So there's my story... You probably think I'm crazy, but this time, I have to follow my heart and he tells me to continue fighting and try.
Sorry to bore you all with my words, but I think I needed to tell it to someone...
Have a great weekend!
PS1: please excuse my English. Even though I've been living in the US the past 3 years I'm from Spain
PS2: Pat, hope you are doing good after the first night!
Mud, welcome to the board. As Pat once told me (I am from France and have been in
the States for 10 years) never apologize for my English. Your English is very good.
Are you by any chance from Barcelona? It is my favorite city in Europe. You can ride
bikes, eat the best food and stay up late in the cafes having lots of fun. My second
favorite place is Buenos Aires.
Well, I hope all goes well for you and come to visit anytime.
Truth - I decided to wait until this morning to start, I wanted to have some of my favorite wine last night and as excited as I am to get back on Sprycel, my memories of my first night 2 1/2 years ago kept me back. So far, so good. Possibly a little nausea, although that's possibly a little paranoia on my part.
As Sloater says, "what is, is".
Hope everything is going good for you.
You said it well "I have to follow my heart.” I couldn’t agree with you more. The time will go by fast and before you know it you will have added the pitter patter of two little feet. Your little boy will have a sibling to grow up with.
You did not bore me with your words and you are NOT crazy. You are a wife a mom and someone who wants to beat CML and have another baby. That is far from Crazy. You are very brave.
Praying for all wishes to come true.
Pam, thanks for making me feel better. Your words mean a lot to me.
Simone, as much as I like Barcelona, I'm in love with Madrid. I guess we all like the place were we are born. I have to say I love Buenos Aires too. Do you ever get homesick?
Pat, keep us posted on how you are doing. I'll start tomorrow Sprycel tomorrow night, so I'll be thinking about you.
Good night to everyone!
Thanks, Teds and Lucky,
My doc is very optimistic about the 50mg working, now if I can just avoid a recurrence of a PE. I had a mild headache the first day but other than that nothing. Except every twinge I have on my right side is fluid building up in the pleura. Even when it's nothing it's something!
Hi Pat, i'm glad you are doing good!!
Do you mind if I ask you something? I started Sprycel Sunday night. First night day was horrible: nausea, vomit, diarrhea and a terrible headache. I couldn't even go to work yesterday. I felt so bad... It was my sons 3 Bday and even though we did celebrate it I was not feeling good so I couldn't play with him as much as I wanted. Luckily I'm doing better today and I m back to work and positive again.
I was wondering what signs or simptoms I need to watch for PE?
Thanks and continue being so positive!
Sprycel can be difficult at first - the first night I had wracking tremors and vomiting, the headache was slight. The second night I continued to have the tremors to a lesser degree and they finally faded away totally after a few weeks. Various and sundry side effects after that - none too annoying.
My PE came on suddenly, one day I was fine, the next I had a sharp pain in my right side when I took a deep breath and I was short of breath. All of these symptoms were out of line with the amount of fluid that showed up on my x-ray and I will attest to that because I was totally asymptomatic 4 weeks ago and my x-rays showed way more fluid in my pleura then, than I had at the beginning of this whole ordeal. My onc thinks it is because I had so much pleurisy to go along with it. Leave it to me.
This is a good overview of symptoms and treatment http://www.webmd.com/lung/pleural-effusion-symptoms-causes-treatments Remember, the majority of people on Sprycel will never experience this but it can show up at any time - mine after nearly 2 1/2 years. It's just smart to keep it in the back of your mind.
Glad you are feeling better!
We are not letting you off the hook, how are you doing? My restart was not as bad as I had expected, a great surprise, but it did not come with a few crappy feelings. How are you? Great the headaches were minimal, but how soon are they checking you for possible complications (PE) and since it has been a few more days, how's it going?
I too am off Sprycel for one week due to colitis (weird kind according to doc) and fluid building up in my lungs (not an effusion, just enough to give me some shortness of breath from time to time, lasix has helped). This GI problem has caused my doc to either want to switch from sprycel to another TKI or would agree to stop the sprycel for a week until my symptoms resolve and restart sprycel at half the dose. I have agreed to go to the 50mg sprycel and try that first to see if that will work instead of jumping ship to another medication. It has been frustrating because the sprycel has really worked on my numbers with my BCR continuing to go down. I am nervous to go to a lower dose, so I guess we will see how that goes. My doc says he has several patients that have gone to a lower dose because of side effects and all (he says he's been lucky so far) have done well and their numbers continue to decrease, even on a lower dose. I guess we shall see! I will hope your journey to half dose goes well too!!!
I'm glad lasix has helped you, but any fluid build up in the pleura is an effusion. The amount of fluid doesn't make any difference, unless you are talking about pulmonary edema (where the fluid is truly in the lungs and not in the linings around the lung) and I truly hope that is not what you are experiencing.
Several people have switched from Sprycel to Tasigna because of PEs and are doing well so I wouldn't worry about that. I just hate the idea of a whole new set of side effects.
For the first time in 35 years I have a mild UTI. I've decided not to blame it on Sprycel as I would normally do.
Hope everyone has a great weekend if you are in the US celebrating Memorial Day!