The LAST Study roll call
Posted 14 December 2016 - 09:13 AM
I stopped Dasatanib Oct 1st after 7 years of therapy most of which I was in deep molecular remission. I remain in the same deep remission after 2 months. However I'm experiencing severe TKI withdrawal muscle skeletal pain. Interestingly this is similar pain that I had at diagnoses. Looking for others to share their experience.
Posted 14 December 2016 - 10:19 AM
I am now 18 months into the LAST study. For about the first six months I had aches and pains all over - many in "new" places. Over time these pains have minimized. I'm 65 and have a family history for arthritis. I was a competitive distance runner for about 20 years (1000 miles per year) and I also competed in other sports until age 40, so I have been punishing my joints for many years. I gave up trying to figure out which pain was caused by what. I can say though, that I did have the tki withdrawal pain being seen in the tki quit studies.
Good luck to you in the trial.
Posted 14 December 2016 - 05:07 PM
Posted 15 December 2016 - 05:02 PM
I stopped sprycel on Nov 14 after about 4 years of treatment and have also noticed various bone pains.
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
Posted 20 December 2016 - 02:15 PM
I am 18 months into the LAST study also. Am still PCRU the muscle and joint pain is finally receeding. Had very bad pain in hands, elbow and shoulder. Pain in hands is the last to leave but it is leaving. Still have no hair on my legs and very little on my arms, used to be quite hairy before Tasigna go figure.
Posted 20 December 2016 - 03:06 PM
I will feed your info back into the group as well, thanks Story.
Posted 20 December 2016 - 08:15 PM
I have been off Sprycel for about 3 months now and have not had any bone pain at all. My water retention still persists though.
Posted 20 December 2016 - 09:02 PM
I still get a bit of fluid retention after 3 years off Gleevec only in the summer months with the heat - we women seem to be more prone to it anyways.
Posted 22 December 2016 - 12:10 PM
I have rarely posted but follow this discussion board often, it is so incredibly helpful. I have been in the LAST study for 10 months now- though I live in Cincinnati, I travel to the Karmanos Cancer Institute in Detroit to see Dr. Schiffer and be part of the study. So far I am maintaining undetectable levels, so thank God for that. The pain in my hands and feet have been a huge problem. It started within 3 months of stopping Tasigna, and continues to a lesser degree even now. For awhile there, it was difficult to even lift a plate, or have anything rub against my hands. My feet felt as if they were encased in a block of wood. So much for my excitement about getting away from the generalized muscle aching while on Tasigna. All that said, I am still grateful that I've had the chance to try and go off Tasigna, and I'm hopeful that I can be off long term- it is the cardiovascular effects I am most concerned about for the future. The discomfort is finally subsiding and I hope will eventually disappear. Dr. Schiffer told me that it has been a surprise to discover how many of us who are in the trials have experiencing this withdrawal pain. I don't want to complain, as I'm so lucky to be in this fortunate group who qualify to stop- just want everyone to be aware that this could be a very common problem.
Posted 23 December 2016 - 11:03 PM
Posted 27 December 2016 - 08:24 AM
I have wanted to get off sprycel for a long time so I have been pushing through this pain.
I spoke with the Doctor about it but he said to just keep using the ibuprophen but this doesn't even make a dent in the pain.
I'm 47 and feel like I'm 87. I have all over muscle and bone pain. The worst of it though is the tight tendons I can barely walk. My hands don't even function, bending down feels impossible. Going up and down the stairs is like taking my life in my hands. The pain never ceases sleeping is difficult.
I have done much searching to find answers and to know what to ask the doctor for.
Of course I haven't wanted to trade one pills side effects for another and I'm not going to take a pain pill, I want to function and live a quality life that's why I'm going off the sprycel in the first place.
I have seen many who have been helped with low dose prednisone so I will be asking for that later today.
I was really hoping being in this trial they would take better care of me but it seems as always I have to be diligent in being my own advocate.
Thank you for your help.
Posted 27 December 2016 - 12:07 PM
JLS - This sounds like more misery than anyone should have to bear with. I salute your efforts to persevere in getting the attention you deserve. That constant push for more answers gets very tiring, plus self-doubt creeps in. But remember - you've heard from others that this pain is real, and the experts are beginning to wake up to it - and there has to be a temporary med you can take to get you relief while this pain lasts, without getting into trouble with opioids and the like. Keep pushing them to hear you and help you, or refer you to someone who can. It is very hard to get people to understand - and doctors are just people, after all - when it isn't happening to them.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 28 December 2016 - 08:57 AM
I'm sorry to butt in as I am not in the LAST trial but my husband was just diagnosed with polymyalgia rheumatica. It is also known as the disease of the "girdles", shoulder and pelvic. I'm not suggesting you have this, but the treatment is steroids, long term, high dose to begin and then tapering off to whatever level keeps the pain at bay.
I watched him, over a month's span, go from an active, vital man to someone who could barely straighten up after getting out of a chair and could no longer lift his arms over his head. He looked like he had aged twenty years and was in constant, severe, pain.
Steroids are not without their own issues, but I hope you are given the opportunity to at least try them to see if they will help you through what sounds like to me, an intolerable situation.
Good luck and I hope 2017 brings you better days!
"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>
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