Millie, best wishes and prayers are sent your way. Hugs, too. Marcie
Sent from my iPad On May 4, 2013, at 11:33 AM, [email protected] wrote: > So good to hear from you Millie. I though something was wrong. What did > they do about the bleeding; just stop meds? Watch you stool to check for > signs of bleeding. If they are dark or black, check to see what it could be. > You are strong and I know you will come through this with flying colors. I > had to have blood transfusions while on Tasi so keep a check on that. It > can drop your counts too low. > Drink Ensure if you have too to keep up your energy and nutrition. My > brother-in-law had cancer and he lived for a year on Ensure so I know it > works. > It's hard to do when you love to eat like I do hehe. > I'm good; going ot my PCD on Mon. > Keep us informed and blessings, > Jeanie<3 > > In a message dated 5/1/2013 3:57:59 P.M. Eastern Daylight Time, [email protected] > writes: > Hi Jeanie....I just got home from the hospital today. Due to taking blood > thinners, my levels were way off and I was bleeding internally. I was also > very dehydrated and have lost over 20 lbs of weight in the past few weeks. I > haven't been eating either as I was so nauseated and having pain in my > stomach, etc. I was loosing so much fluid that it was scaring me. At any > rate, I was due for a procedure on Tues., but when I went for testing on > Monday, my doctor called and told me to go over to the emergency room at the > hospital, so that's what I did and they kept me until today. They say the > levels are good right now, but they did cut me down, and in some cases, did > away with some of my medications. I'm now suppose to go to have the scope > done on Mon. of next week, but am waiting for a call to verify that. I'm > still very weak, but feeling better in every other way. I just have to work > at getting stronger......and I will. They gave me vitamin K shots and also 2 > units of Plasma while in the hospital, and also IV. fluid, so I'm good to go > now. Just have to get stronger and I'll do that. > > You take care and stay healthy. I'm still doing well on Tasigna (or hope > that am) I see my Onc. the end of this month. He'll run the blood work > then and tell me if I'm still in remission. > > I'll talk to you all soon. Hope that all of my fellow CMLers are doing well. > It seems like one of us is always fighting the fight somehow. I know that > most of us have issues, but we are still able to fight, and that's good news. > Hugs, > Millie > ----- Original Message ----- > From: [email protected] > To: [email protected] > Sent: Wednesday, May 01, 2013 3:28 PM > Subject: [CMLHope] Jim and Millie and all > > Thanks Jim for all your support. You there Millie? Just wondering how you > are? > Jeanie<3 > > In a message dated 4/30/2013 5:51:30 P.M. Eastern Daylight Time, > [email protected] writes: > Hi Peg, I also have the cramping, I'm on Gleevec since it was approved in the > USA. I was dxed 4/12,1997. I've experienced many of the known side effects. > Eye bleeds, cramping in the legs(upper and lower), feet insteps, forearm, > hands, I inquired abut muscle relaxers and Onc. gave me some and it didn't > help. The legs and hands respond to hot water, the feet don't! My Pcr test is > negative that's a plus that we are so happy for. I'm 68 and the side effects > aren't bad enough for me to want to venture into the unknown with a different > med. that may not even work for me or the side effects are worse than what I > currently have. > > 18s to all my fellow warriors we must never give up research is making head > way as never before who knows what they ill come up with next. some day the > big "C' will stand for CURE. I pray every day for that AMEN. God Bless us > all. Jim Rodeghier > > --- On Mon, 4/29/13, peg <[email protected]> wrote: > > From: peg <[email protected]> > Subject: [CMLHope] TKI Spasticity > To: [email protected] > Date: Monday, April 29, 2013, 10:57 AM > > Hi all, > > Sorry it takes me a while to catch up these days. Just read Beth's post on > spasticity and wanted to share. There are many folks having muscle related > problems with all of the CML drugs. The spectrum ranges from the seriousness > of myopathy to simple muscles spasms, with everything in between. Gleevec > gave me myopathy. Because I was not a good candidate for Tasigna we moved > directly to Sprycel back in 2010...before it was front line approved. For me > Sprycel causes such severe muscle contractions that I have developed > contractures in several places in my body. At first we just thought it was my > arthritis causing limited range of motion, but then several months ago > finally realized what had happened. I am in physical therapy now to improve > my range of motion. We have also had to radically adjust the Sprycel > dosing...not just for the contractures, but also the crippling fatigue, mind > numbing brain fog, bone pain and Sprycel induced depression. The only time I > feel really good now is on Sprycel "holidays". > > After many dose reductions here's where I am at...in 2011 we started dropping > the daily dose....first 70mg then 50mg. We also tried 50mg every other day, > then 20mg daily. All of these changes still held me at PCRU. But even at > 20mg daily it was difficult to have a normal life. There was also a concern > from the specialist I see who helped develop Spycel. He believes that from > what he is seeing, the way Sprycel affects the CML is more related to the > size of each dose, rather than the frequency, so he had a concern that 20mg a > day would not hold the PCRU. Although I have heard of cases where it is. We > also noted that for me a "washout" of a few days off Sprycel helped me > recover from the side effects. Without that washout, the affects would load > up. So this was when we started experimenting last Oct with twice weekly > dosing. Unfortunately 70mg still proved to high a single dose for me, so we > did a brief five months at 50mg every third day. However, the side effects > from each dose are still so severe, it is like sticking my finger in a light > socket, everything in my body clenches. This starts two hours after each > dose and lasts for almost 24 hours. Every third day dosing was just > craziness, since I couldn't plan around that well...and found myself dragging > myself painfully through life every third day...hating every minute of it. > We finally realized that the only way I could have any quality of life was to > drop back to a twice a week dose and take those days out of my > schedule...just plan on being down for the count on those two same days each > week. > > So we are now at 50mg two days a week. I take a muscle relaxer with each > dose, and again at 12 hours if I need it. This really helps with the muscle > spasms. I lose two days out of my week, but the quality of the other five is > much better now. We are monitoring my PCR monthly to see if the PCRU still > holds. > > I can't recommend experimenting for everyone...it carries a risk of becoming > resistant. However, the quality of my life had become so bad that the cost > of saving my life was no longer worth it. Life in the absence of any quality > is simply not a life. > > For those of you who's reactions to TKI are not as dramatic as mine, adding a > muscle relaxer to each dose, even daily, might bring the muscle spasm relief > you need. My drug of choice is Robaxin...but to each man his own! > > Warmest regards to everyone! > > Peg > -- > -- > [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. > > > -- > -- > [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. > > > -- > -- > [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. > > > -- > -- > [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. > > > -- > -- > [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. > > -- -- [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.
