I was dx in January 2008 and have been on 300 mg of Gleevec. My BCR-ABL counts were at 0 last year and I just found out that they are not at 0 anymore. My doctor would like to start me on Sprycel. I am nervous about the side effects. I have water retention and nausea now. I am worried about my counts dropping low again...I guess I just want to hear good news from people who are doing well on Sprycel! Hope everyone's summer is going well so far! I have 2 young boys and am so busy all the time...just want a little less to worry about!
Need some answers about Sprycel...help please?
Posted 12 July 2011 - 04:08 PM
HI, Kathy. . .
I was on Gleevec for about 1 1/2 years with sub-optimal response. Switched to Sprycel this last January and it was a fantastic move for me. I have had absolutely zero side effects and I feel a lot better than I did on Gleevec. My PCR numbers dropped pretty fast (course, yours are already good). I haven't had any problems with low WBC. . .I've had absolutely no problems with anything. Sprycel has been fantastic for me, and I hope the same for you.
All the best,
P.S. I did take a 4 day drug break between G and S, and I started Sprycel on half dose (50 mg) for 5 days. I had heard horror stories about headaches with Sprycel, so I was very concerned. I think it's important to take a drug break to clear the G from your system, and I would highly recommend starting half dosage to avoid the headaches. Check with your doctor to see what he/she thinks. My doc wrote a special scrip for 50mg tablets, but only 55 tabs, to have the 5 days of half dose. That was stupid. Just have your doc write a script for a full months supply of 50 mg tabs (2 per day, so 60 tabs), but the first 5 days or so, only take 1 pill. Then the next month, you can have him write a script for 100 mg tabs.
Posted 12 July 2011 - 04:11 PM
P.S. Your onc probably knows this, but you should have a baseline EKG done before starting Sprycel. Don't let that concern you. At first, there was some concern regarding QT prolongation with Sprycel. It doesn't seem that it's much of a concern any more, but it's probably a good idea to stick with the guidelines (if that's still a guideline).
Posted 12 July 2011 - 04:15 PM
I never got a baseline EKG before starting Sprycel. Is it necessary? I started Sprycel last Aug. 30th. I don't think I have been having any heart issues. Oh well... So far so good with feeling well on Sprycel.
Posted 12 July 2011 - 04:23 PM
Hi, Tedsey. . .I wouldn't worry about it. There used to be some concern about QT prolongation issues, but I think they've found that it's not a real concern. The EKG issue caused me a TON of anxiety, because the first one came back abnormal. I didn't have a doc to read it for me, so I had to do my own research to find out that I simply have an extremely low heart rate, probably due to many past years of long distance running.
I would guess that as more and more people are on Sprycel and they see few or no QT issues, they will eventually (if they haven't already) get rid of the EKG requirement. When I started Sprycel, you were supposed to have an EKG before starting Sprycel, and then a couple after having been on it, and then again if you changed dosage.
I had 3 of them and doc had me scheduled for another which seemed ridiculous, so I just didn't go. Not to mention that I was getting tired of the out-of-pocket expense.
Posted 12 July 2011 - 04:31 PM
I have been on Sprycel for a year and a half. My side effects were worse at the beginning, but have 1) subsided or 2) been downgraded to just irritating. So... hang in there through the initial 90 days and then decide which ones to worry about. Here's hoping they are minimal!
I hate to hear about the drug failures after such great success - throws me back onto thin ice.
Posted 12 July 2011 - 05:10 PM
My husband was on Gleevec for just a couple weeks and taken off due to low blood counts which took 4 wks to recover from. Then he was placed on Tasigna half dose and suffered from high liver counts. He was off medication more than he was on for several months until they finally started him on Sprycel in March. This is the only drug he hasn't had severe side effects with. His blood counts are all good and his bodies reaction is tolerable, much more so than on either of the other 2 drugs. Best of luck to you, each one reacts differently so here's to hoping you will have a favorable reaction to Sprycel!
Posted 12 July 2011 - 06:21 PM
Thanks so much everyone for your help. I am just anxious and I know that I will be okay. It just is hard sometimes...you think you are feeling okay and then I got the news about Gleevec possibly not working for me. I am trying to keep a positive attitude! This discussion forum is so great because you are dealing with people who are going through the same feelings you are. Thanks so much for your help!
Posted 12 July 2011 - 09:17 PM
Hi, best of luck with Sprycel! I have been on 3 months. Initially I had some swelling and itching of my hands and feet (about a week or 2). I had a headache and joint, muscle pain the first 2 days. Since that initial adjustment I have just had some joint/muscle pain and minor fatigue. My blood counts were low in the beginning, I did get 2 blood transfusions (but i was also anemic prior to starting the med) which made a significant difference. Now my counts are good, low normal or just a little low. Overall, I feel very good and can't complain. Hope you have an easy transition!
Posted 12 July 2011 - 09:30 PM
I'm curious, when you say they are not 0 anymore, what are we talking about in terms of log increase? Are you still in MMR? How many PCR tests were not detectable last year and how many have you had since that have shown detection?
I don't have an opinion about if you should switch drugs or not. You say you don't feel great on Gleevec, so who knows, maybe Sprycel will be better, many people say the side effects are less. I'm just trying to understand if you truly have a relapse or if you just happen to be teetering at the high level of undetectable and happen to swing to the detectable side. Bouncing around below a 3 log reduction may not be any reason for concern.
Posted 12 July 2011 - 09:34 PM
It's interesting to be reading the side effects experienced by folks who start on Sprycel from the get-go, rather than just those who switched to it from another TKI. Those of us who started on Gleevec at dx know what that felt like, and those of us who then switched at some point to Sprycel then had our own experiences. Often it seems different for different folks under different situations (some had no gaps from G to S, some had short gaps, some had longer gaps).
What I remember of starting on G seems similar to what some folks write about starting on S. Makes me think that no matter the medication when starting our TKIs at dx, the effects of the TKI doing its thing can be very similar, side effects-wise.
Since you are asking about experiences of switching from G to S after some time, I can relate my experience, though it doesn't seem that common unless those who don't experience trouble with it aren't speaking up. For me it was one bout of vomiting during the night, then over the next couple of days there was the amazing lifting of the Gleevec haze and "I'm back!" — who knew it was possible to be free of that? Whew!
Over the next two years and two months, fatigue has continued, and the brain fog has cleared a bit. Age (60) may be contributing some aches and pains now and then. But taking Sprycel regularly around 10 pm or so has been easy and regular, no problem.
Four months after starting Sprycel I was PCRU, and that continues. Blood work has little shifts but no problems to speak of. For me, Sprycel is a blessing that surpasses that of Gleevec, though how incredible is it that we have so many choices these days compared to, shall we say, before the turn of the century!
Best of luck to you on switching, and please be easy with it: no worries, no expectations. Let us all know if you have questions as you go along
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 12 July 2011 - 09:57 PM
I did want to say that only one increase does not an upward trend make. Have you had the PCR redone to make sure this wasn't just a glitch? Can you be more specific about your numbers? There are several people on here who can help you interpret if you want that.
Otherwise, there a lot of us on here who use Sprycel and we make a great support team!
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 13 July 2011 - 07:28 AM
Hi, I was on G for 9 months then my numbers spiked, then Tasigna and had pancreatic so that didnt' work, Side effects with both for me were extreme. But started Sprycel in June and I have muscle aches and fatigue and my low counts are being watched closely right now. But I definitely feel allot better then the other 2. I think sprycel has been the best to me vs side effects it was an non eventful chanI hope it will be the same for you !
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
Posted 13 July 2011 - 11:44 AM
Hi Pat -
I have 2 doctors and they both did the PCR test. The numbers are being faxed over to me today, but they told me that there was traces of BCR-ABL in my bloodwork It is not at a high level (I believe .090) but the Gleevec has been making me very sick so maybe it is going to be a positive change?
Posted 16 July 2011 - 10:58 PM
Kathy, I was diagosed in 05 and they put me on G for a while. G kept my numbers down but never really great and it kicked my behind royally. I switched to Sprycel in 08 and went to unquantifiable results in 09. I have stayed that way for the last 2 years and my side effects aren't as bad as Gleevec so I am a Sprycel supporter. Am still very fatigued and tired and now my life evolves around quality of life issues. My life isn't evolving around the Leukemia anymore, just the Spycel. Hang in there and let us know how the switch goes.
Posted 20 July 2011 - 03:06 PM
I have been on the Sprycel for about 1 week now. Have experienced the terrible headaches. They usually subside by about noon or 1 each day. I have been taking the medicine at night right before bed. Very tired the last week. I have been experiencing pains in my stomach that feels like someone has punched me in the stomach. It is right below my rib cage and it hurts to touch. Has anyone else felt like this on Sprycel? I am hopeful that the side effects will go away soon so I can continue living a healthy life!
Posted 20 July 2011 - 03:44 PM
Is it your right-hand side or left-hand side that hurts under the ribcage? The right-hand side is the liver which is something more to look out for; the left-hand side is the spleen which is probably normal if your spleen was enlarged and is now shrinking.
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