Skip, your like the rock of Gibralter! 18's
Marty On Wed, Jul 3, 2013 at 9:29 AM, Skip Duffie <skipd_2...@yahoo.com> wrote: > > *.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 <icandoall...@aol.com> > To: cmlhope <cmlhope@googlegroups.com> > 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, > bkbar...@aol.com 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 <gandglarc...@gmail.com> > To: cmlhope <cmlhope@googlegroups.com> > 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. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
