Hello To all, Unfortunately I am one of the ones that can't play with my doses. I cut back on my Sprycel for fear of PE and my platelets started going up. I went back to my regular dose and they came down but not enough as far as I'm concerned. I have been through this before and it ends up with me in the hospital getting my blood cleanse; no picnic. As Peg said, we are all different and react differently to drugs. With Sprycel, you may think the side effects are gone, and then you will have a terrible sinus headache. So be vigil, and keep your blood checked often. Jeanie<3 In a message dated 12/2/2013 10:57:06 A.M. Eastern Standard Time, [email protected] writes:
Hi Suzanne, Sorry it took me a bit to respond, getting through the holiday this week kicked my butt. It is difficult to just let things go because I am no longer up to the task! It feels like failure to me, and is a bit scarey too...like Dicken's ghost of "christmas future". I couldn't agree with you more about the quality of life issue. This is a topic I have had to forcefully revisit with my doctors numerous times over the last few years, as I have watched my old self and old life fade away from toxic side effects. I am thrilled for those who are able to take TKI's with minimum and/or livable side effects, unfortunately, this has not been the case for me. Seems like all the docs want to see are good numbers and "problem solved"...but, like you, for me living sick and in the shadows is no way to live at all. Just started third week on very low dose Tasigna, many initial side effects are getting better, so now the wait. I am hoping that this dose will be affective with no long term side effects. Time will tell. If you feel strongly about holding on a lower dose, stand your ground until you know if it is affective or not. Doctors sometimes, in their concern that CML is fatal when untreated, do not want to deviate from standard protocol. However, all patients are not alike, and we must balance our quality of life against potential outcomes. Many folks are doing fine on lower than standard doses. Remind your doctors that, while you appreciate their help in navigating this journey, you are still driving the bus! Fight on, Peg On Monday, November 25, 2013 9:01:20 AM UTC-8, [email protected] wrote: Good morning, I just "found" this group though it does appear I've subscribed at some point in the past. I've been involved with so many groups over the past 17 years, it's hard to keep track :). I'll keep my bio as short and sweet as possible, then get on with my question. My name is Suzanne, I was diagnosed in 1997, was initially put on interferon, then ara-c was added, then I was on one of the Gleevec trials beginning in 1999. I was on Gleevec for 7 years, then switched to Sprycel, which I was on for 6 years. I was doing fine on Sprycel until I started having some trouble with my breathing in 2012. I suspected PAH but my doctors convinced me it wasn't. Though, of course, it turned out to be pulmonary hypertension. I took myself off Sprycel, took a 4 month break from all medications, then started Iclusig in March. THAT was a nightmare. I had every side effect in the book and then some. My doctor put me on Tasigna, 200 mg 2x/daily. At some point, she wants me to increase my dosage to 400 mg 2x/daily. But, that's probably another problem for another day. I started the Tasigna last Tuesday. For the first 3 days, I had a moderate headache and nausea, along with some pretty severe fatigue. The headache and nausea were pretty well gone by Friday. Then, on Saturday, I had a problem I've never had before and was wondering if anyone had anything similar happen. At this point, I should also note that I have crohn's disease, along with GERD. On Saturday (and this is embarrassing), I started burping uncontrollably and it felt like I had something stuck in my throat. At some points, it felt that the "something in my throat" was getting bigger, then would shrink, then get bigger, etc. All the while, burp, burp, burp. For 9 HOURS STRAIGHT. And not tiny little ladylike belches, no, big, loud, huge belches. I took my prescription prilosec (2 doses), 6 ultra-strength tums and then sucked Mylanta straight out of the bottle for an hour. After about 9.5 hours, it finally stopped. And let me tell you, it was pretty painful. As Tasigna can cause (according to the label, though my doctor disagrees) acid reflux, I assumed it was the Tasigna. I called my oncologist, as well as my GI doctor, and the doctors on call both said to go off the Tasigna for the rest of the weekend then call on Monday. I called, spoke to the nurse, who spoke to my doctor. My doctor said it wasn't the Tasigna (I disagree, after 17 years of this, I know my body very, very well). Also, when I went off the Tasigna, while the acid reflux didn't go away completely, it greatly improved. The nurse said that Tasigna not only causes acid reflux but also muscle spasms and it was her opinion that perhaps my diaphragm and/or esophagus started spasming, which may have caused/contributed to the problem. As my options are limited, going off Tasigna over this is pretty well out of the question. My questions are these: has anyone had anything even remotely similar to this; and (b) if so, any suggestions on how to deal with it? The first 15 years of my diagnoses were relatively easy and pain-free (discounting the interferon years) but the last 2 years, particularly the last 7-8 months have just been increasingly awful. I have not only the cml but the pulmonary hypertension. I also have developed a chronic kidney infection that no one seems to be able to figure out why (except that my immune system seems to be at an all-time low), I have had viral meningitis and I just found out that I have a potentially serious liver condition. Dealing with all that, all the medications and now all these side effects is really wearing me out, physically, mentally and emotionally. I'm not ashamed to admit, I just don't know what to do anymore. And I'm just too tired to deal with any of it effectively. Thanks for listening, Suzanne -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
