Hi Marie and thanks so much. You have given me a great big uplift! Yes, I use the salt water. I got a sore eye, not an eye bleed but it was sore and swollen so I think it is the Sprycel, of course we think it causes everything I am taking 50 mgs daily, but on some days I take the full 100. I was in complete remission after 3 months on Sprycel. Of course, we are never cured, at least that is what they tell us, but I believe we can be cured. While I was on Gleevec I had terrible boil like sores, but they never did anything about them. They would come in series of three, get really bad and then just clear up until another batch started again. They finally went away. I had awful cramps in feet and fingers and my eyes looked like a swollen mess most of the time. On Sprycel I don't have the swollen eyes as much but they do swell. I am worried about PE and sure don't want to go through that, but might have to. Someone said they got the PE after being on Sprycel for 3 years. I am on my 19th month of Sprycel. I'm like you, I like to go and do things and I have two daughters and one son that help me a lot. We go on a cruise once or twice a year and have a ball. Thanks for taking the time for the uplift and keep in touch. Jeanie<3 In a message dated 3/31/2011 6:39:03 P.M. Pacific Daylight Time, [email protected] writes:
Hi Jeannie, happy to hear from you. The mouth sores can come on the tongue, inside the cheeks, lips and high in the gums. I am on 70mg of sprycel three times one week and four times the other. I found out that if you rinse your mouth out with warm salt and water in the morning and at night before you go to bed, it helps. Also keeping your mouth wet by chewing gum helps to ease the pain. Eating is the hard thing, another thing to think about is when you go for your cancer gene test. I get mine taken every three months, cbc every other week. The last time I had my cancer gene done, it came back that I was 85% active. I argued with my oncol. and told her that if I was that bad I would know it. I insisted on another test , I was sure that it was wrong. It was!! If I had let it go, she would of sent me to Dana Farber in Boston. I feel too good to be sick with this thing. I am a very active person, I like to go to the casino once a month, play dominoes, eat out with friends and family, attend live shows, and go to a bar to listen to karaoke( I do not drink, & smoke.) My husband is in a nursing home with Parkinsons and I live alone, but I am blessed with 5 wonderful daughters, I do not consider that I am sick, just old. p.s. I haven't been in remission for the past 3 yrs. close to it though :) Hang in there and think positive, and keep a good attitude. That's the secret .God bless you, Marie ____________________________________ From: "[email protected]" <[email protected]> To: [email protected] Sent: Thu, March 31, 2011 5:07:10 PM Subject: Re: [CMLHope] Just got the bad news, Gleevec out after 7 years! Hi Marie and so good to hear from a CML survivor for so many years. I get those mouth sores also and I wonder what causes them? I was on 150 mgs of Sprycel in the beginning as I had a battle with my counts all going too high; then I was reduced to 100 but as of late my counts started going low. I cut down to 50 for a few days and then 100 for a few. We have our ups and downs but we are still here kicking and fighting. Blessings, Jeanie<3 In a message dated 3/30/2011 8:18:47 A.M. Pacific Daylight Time, [email protected] writes: I am so sorry that you are in this spot. I was there 3 yrs ago. I was diag nosed with CML 11 yrs ago. At that time gleevec was in the experimental stage. My oncol. got me on the exper. program and within 3 mos. I was in remission. After 8 yrs. gleevec turned on me. My insides were torn open and I had a huge infection. After surgery I went to Boston to Dana-Farber Cancer clinic for advice about other meds. My oncol. and the dr. from D-F put me on sprycel. I am a petite person and the dosage that I was on pretty near did away with my platlets. In the hosp. I went for 3 weeks to get treated . Now I am on a very low dosage of sprycel. The side affects that you had with gleevec are the same that I had. With sprycel, I have bad aches and pains with my whole body, and at times I get mouth sores and can't eat. I found out by that if I take myself off my sprycel for maybe 2 days that the sores go away. Also get leg cramps, but it beats the alternative. Let me tell you , I am now 83 yrs old, and expect to get achy bones and body, it may not happen to you. Sprycel is not so bad though. It is easy to take. Between gleevec and sprycel, I have been living all these years and keep active. I don't baby myself and I do not whine. I thank God every day that I was born in these times when a disease can be controlled. Years ago , this would be fatal. My prayers are with you. Marie Hillenbrand ____________________________________ From: Ana Burgos <[email protected]> To: [email protected] Sent: Tue, March 29, 2011 1:31:47 PM Subject: Re: [CMLHope] Just got the bad news, Gleevec out after 7 years! what does “3 fold” means?, I mean , the same happen to my mun , after 7 years pcru, her last pcrs have been 0.036; 0.012; 0.,216 ; 0.012 From: _Len Clapp_ (mailto:[email protected]) Sent: Tuesday, March 29, 2011 2:57 PM To: [email protected]_ (mailto:[email protected]) Subject: Re: [CMLHope] Just got the bad news, Gleevec out after 7 years! Thannk you for the information. On Wed, Mar 23, 2011 at 4:38 PM, John Kuptz <[email protected]_ (mailto:[email protected]) > wrote: I was diagnosed in 11-05 and started on Gleevec but within 2 months had developed liver function failure. Was started on Sprycel 70mg bid and that just about wiped out my platlets. Waited for bone marrow to recover and was put on only 20 mg bid. I have been on that ever since. My pcr tests comes back UNDECTABLE almost every time they do it every three months. Once in a great while a very smalll amount is detected. Onocologist said that is the name of the game. I do have joint pain and have put on 30 lbs but basically that is the only side effect in 4 years. Best of luck to you. Carolyn ----- Original Message ----- From: "kneesrbad2" <[email protected]_ (mailto:[email protected]) > To: "CMLHope" <[email protected]_ (mailto:[email protected]) > Sent: Tuesday, March 22, 2011 10:59 PM Subject: [CMLHope] Just got the bad news, Gleevec out after 7 years! I don't know what went wrong but my abnormal cells increased 3 fold on my last BMA. Now going onto Sprycel! I need everyone who is on Sprycel to give me your quick stories of what to expect with the new round of side affects from Sprycel. On Gleevec, here is MY list of side affects, Diarehea, fatique, eye bleeds, water retention, thin skin, pale skin (burn easily), cramps, sinus operation, pumpkin face, joint pains, insomnia, etc etc etc. What am I faced with for side affects on Sprycel? Suppose to start it next week. I am a 55 year old, male, Michigan resident, DX'd on my Wedding anniversary in 2004, in full blast stage with a spleen they were going to take out immediately and when I say immediately, I mean 3:30 am with a full siren ambulance to a major hospital but they saved it!! I was tested for a full Bone Marrow Transplant with my brothers and I have a 100% match from my younger brother if I need it. I just want to hear the good, the bad and the ugly from those on Sprycel, please. Also, and almost as important to our CML family for one reason or another I have a few extra bottles of Gleevec 400 mg bottles still with the seal on it if anyone is interested in talking with me in private. I would like to help someone who may have a huge co pay on their Gleevec payments. This will be handled away from this site and all parties will get to know who the other parties are. I just don't want these expensive drugs to go to waste because my body decides, the heck with you, drug change. Please reply and let me know! Thanks -- [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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope -- [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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [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_ (http://groups.google.com/group/CMLHope) -- [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_ (http://groups.google.com/group/CMLHope) -- [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_ (http://groups.google.com/group/CMLHope) -- [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_ (http://groups.google.com/group/CMLHope) -- [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://grou ps.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [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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