Thanks Skip for the update. You are truly a CML Warrior! Blessings Jeanie<3 In a message dated 7/3/2013 9:29:30 A.M. Eastern Daylight Time, [email protected] writes:
.Hello all thanks for including me in your email. I was on sprycel and after while I had to have my chest drained. over a two month period I had to have 8.5 lts of fluid removed. So they had to take me off sprycel. I understand a lot of people who are on it have great results. It was the same for Imatinib, and Nilotinib. but on the good side I am on nothing now. My platelets yesterday were 13 and I received a bag. As it stands I receive 1 unit of RBC once week and twice weekly I receive a bag of Platelets. on the plus side my life is great. I have no problems, It takes me a few hours at the hospital twice weekly, where I am looked after like a rock star. I am spoiled. I just have to be careful not to play football or bang my head. I do have to be careful around my grandson he is a 3 year old wrecking crew. I wish you a wonderful life even with CML. In my case I did not think I would live beyond 1978 so I was warned, For those who do not know I was put on Myleran way back and was on it every year for about two three months, my counts would drop and slowly go up until I needed to be put back on Myleran (Bulsufan) Skip Duffie thanks Jeannie, I am on sprycel again as mentioned..at 50 - 60 a day. In PCRU for the first time in 3 years. Toxicity has been cpk elevated to 400...so muscles are constantly wasting and that makes me a kind of muscular tired different than other TKI's, eyebrows lost, hair loss, skin terribly dry, slightly more elevated liver enzymes but still in normal range. The biggest challenge is pain in the body with the elevated cpk. I have tried tramadol, but it goes through the liver and Tasigna gave my liver such a hard time, that I am protective of it, even though my liver numbers are fine.Regarding your question, In the fall, I started to feel worse and worse, could hardly get up and move, at 40 of sprycel..I had been on it for 2 years...minus a couple of holidays for surgeries....I had to go off everything....echo cardiogram showed the start of a possible developing problem....in left ventricle...I went of Sprycel for 7 weeks, went on bosutinif for 7 weeks, then back on sprycel four days later after blood work showed bosutinif did not work for me..I also had another echo cardiogram and it was fine, so it resolved off of the meds for a couple of months....I was on a low dose becuase that was all that could be tolerated by my body...50 of sprycel did not put me in remission, but 70 for one month,and 60 for two months. did..so I know how much I need to take for complete remission,, it's just if my body will allow me to. I have eye swelling, and calve swelling that I did not have on 40-50 that I have with 60-70 a day...so...I will be dosing down...and not worry about CMM, be happy if I stay in MMR and live well with less toxicity...most people never have the elevated cpk, or muscle issues, fatigue yes, but not this..so try not to worry, I am an odd bird when it comes to drug sensitivity...... have many issues others don't. Just the luck of the draw...I do most of the things you suggest already,bu trwill try castor oil and see if that helps..thanks so much for your note, be well Jeannie, Beth -----Original Message----- From: ICANDOALLTTC <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Jul 2, 2013 7:54 am Subject: Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. I battled with Gleevec for almost 5 years and then on Tasi for a few months. I was on 100 mgs daily and my onc didn't want me to cut down but I took it upon myself to cut down to 50 mgs daily. I haven't had the muscle problem yet, but feel it could be lurking there close by. Here's what I do nightly; get some organic castor oil and massage you feet and legs with the muscle area nightly. Do this twice a day if you can. Do it right before you turn in for the night. Of course eat well, and eat yogurt daily. If you are low on calcium get some good organic calcium in a liquid form, the one that isn't constipating and take a small dose daily along with some magnesium, Get a little sun on your long bones daily if you can. Walk if you can. Walking will help the headaches also; I suffer from them too and Sprycel makes them worse. Have you tried Tamadol for pain. I take it daily and it helps so I don't have to take any of the nsaids which we aren't suppose to take. It's a pain pill that you take before the pain begins. It can cause mild itching. Thanks for you input on the new drug. I thought that was the one that didn't have that many side effects. What was your toxicity to Sprycel? Blessing Beth, Jeanie<3 In a message dated 4/19/2013 1:28:51 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: Dear Skip, Marty, Millie, and all those warriors who are struggling right now. I want to pass along a great big hug filled with hope, and light, and healing and positive energy. We need each other during the rough times and I am so glad we have one another. I too have been struggling mightily, but find the one thing that helps, that I keep on working on, is trusting in, believing in, knowing that we can live and love well inspite of and perhaps in some cases because of our illness and how it informs our lives. Isolation and fear are powerful tools that push against us. Community and holding hope and faith for ourselves, our bodies and our spirits, here, united together, will serve and guide us well. I read every day and think of all my fellow warriors out there, those who write, and those who read, and send a prayer to all for peace of mind body and spirit. I tried bosutinib and had horrible side effects at a moderate dose, muscle rigidity all over the body, elevated cpk, emotional distress... after 8 weeks, the BCR showed it had not done anything for the cancer, the cancer had actually grown threw it and I lost two logs. So now back on sprycel at 50 and working on getting back into remission. As I had to go off sprycel in December because of toxicity, it's a scary time. But I remain positive and am researching alternative and complementary options to aid with the toxiicity. If anyone has any suggestions about muscle spasticity, please let me know. I can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this one is new, ongoing and the greatest challenge yet. thanks for yoru help. Beth -----Original Message----- From: gene and guy Larcher <[email protected]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[email protected]) > Sent: Fri, Apr 19, 2013 10:49 am Subject: [CMLHope] Skip Duffie Dear Skip: So good to hear from you after quite some time. Very sorry to hear you have been so poorly but the good news is that you are getting better. You, along with Marty, have given tremendous hope to the rest of us and shown how to bear long illness with good spirits. Dear old warrior - we wish you the very best and hope to hear much more from you in the future. Guy -- -- [CMLHope] A support group of http://cmlhope.com/ ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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