Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 hi sharon, i am new to the group altho not to CML (9 yrs in 8/08). never thought i'd live to say that as my 1st dr told me one ususlly lives only about 4yrs.your post interested me as my dr wants to put me on tasagna because gleevec is lowing my platelets and making me anemic plus other annoying side effects.i told her i have had these problems for almost the whole time i have had CML (9years), but i think she is being the typical dr, covering all bases, and informing the patient. which i understand. i am going to get the results of my latest blood work in about a week, and then we will decide.after i read you post and saw the reference to the pancreas,now i think i have another concern lol. i told the dr i wasn't to keen on starting another high-powered medicine and having another set of side effects as i have queasy intestines, both large and small.any tips will be appreciated. thanks jean In , " Sharon & Denny " <onthewtr@...> wrote: > > I have been on Tasagna for 77days now and I have absolutely no side affects. > Except my blood work shows my Amylase and my lipase as being high. > > Amylase-normal is 25-115 > > Lipase normal is 23-300 > > > > Amylase went from 103 on 4/9 > > Then down to 88 on 4/23 > > Then up to 547 on 5/14 > > > > My lipase went from 43 on 4/23 > > To 547 on 5/14 > > > > So naturally they were concerned. > > > > This all has to do with the Pancreas being affected. But tasagna has a > tendency to do that. But it also has a tendency to show high readings that > mean nothing. > > I have no pains in my stomach. I feel fine. But they are watching closer. If > I have pains in my stomach I should go in right away. But again I feel fine. > I will go in again on Wed for another blood test. > > > > I feel so so fortunate that I have this assistant to my Oncologist. She is > wonderful and is the first person that I can really discuss the medication > with. She knows all about it. And was surprised that I knew so much. > > > > I am writing this to let everyone else on Tasagna know that they should be > having their Amylase and Lipase tested regularly. I was never tested for it > before. > > > > Since being on Tasagna I have not had a PCR done. I am going in to have one > in June. They do them every three months. I am anxious to see how I am > doing. > > > > Love to all, > > Sharon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Hi I just had another blood test and both tests were back to normal. The Dr thinks the medication is giving the test a false reading being as I have no side affects. He told me about two other patients on it that had developed pancreatice.(sp) They are watching me very closely. I do not know if I am PCRU yet. I was on Sprycel but I have not been tested since on Tasigna. I will go in on June 24th for that test. But ,,,I feel so so well. Have not felt this good in the 4 years that I have had CML. Keep in touch. By the way I am only on 400mg. talk the dr., into letting you try 400 to start. See if that works. Sharon _____ From: [mailto: ] On Behalf Of jmcallister35 Sent: Thursday, May 22, 2008 1:18 PM Subject: [ ] Re: TASAGNA AND PANCREAS hi sharon, i am new to the group altho not to CML (9 yrs in 8/08). never thought i'd live to say that as my 1st dr told me one ususlly lives only about 4yrs.your post interested me as my dr wants to put me on tasagna because gleevec is lowing my platelets and making me anemic plus other annoying side effects.i told her i have had these problems for almost the whole time i have had CML (9years), but i think she is being the typical dr, covering all bases, and informing the patient. which i understand. i am going to get the results of my latest blood work in about a week, and then we will decide.after i read you post and saw the reference to the pancreas,now i think i have another concern lol. i told the dr i wasn't to keen on starting another high-powered medicine and having another set of side effects as i have queasy intestines, both large and small.any tips will be appreciated. thanks jean In groups (DOT) <mailto:%40> com, " Sharon & Denny " <onthewtr@...> wrote: > > I have been on Tasagna for 77days now and I have absolutely no side affects. > Except my blood work shows my Amylase and my lipase as being high. > > Amylase-normal is 25-115 > > Lipase normal is 23-300 > > > > Amylase went from 103 on 4/9 > > Then down to 88 on 4/23 > > Then up to 547 on 5/14 > > > > My lipase went from 43 on 4/23 > > To 547 on 5/14 > > > > So naturally they were concerned. > > > > This all has to do with the Pancreas being affected. But tasagna has a > tendency to do that. But it also has a tendency to show high readings that > mean nothing. > > I have no pains in my stomach. I feel fine. But they are watching closer. If > I have pains in my stomach I should go in right away. But again I feel fine. > I will go in again on Wed for another blood test. > > > > I feel so so fortunate that I have this assistant to my Oncologist. She is > wonderful and is the first person that I can really discuss the medication > with. She knows all about it. And was surprised that I knew so much. > > > > I am writing this to let everyone else on Tasagna know that they should be > having their Amylase and Lipase tested regularly. I was never tested for it > before. > > > > Since being on Tasagna I have not had a PCR done. I am going in to have one > in June. They do them every three months. I am anxious to see how I am > doing. > > > > Love to all, > > Sharon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Hi all well here again I have had that pancreas problem every time they tried to get me on 800 mg of Tasigna I started having pain in my back. I landed up in hospital with pancreas problems so the first time they lowered my dose to 400mg, I was in hosptial for about a week was very ill they were not sure what caused my problem and my onc doc was away.. Next time they tried to increase my dose up to 800mg I again ended up in the hospital for about a week, this time my sugar level was high so they now knew it was the pancreas, a scan confirmed that the edge of my pancreas we ragged (they showed it to me). After a while (about two months ) I asked if I could have my dose increased (hoping to lower the amount of blood products) Novartis agreed and again I started to have pain, so this time they stopped Tasigna and all they did was called me in to medical day and gave me tons of fluid every day for a week and half. So I went back to 400mg a day. My Onc about a month ago said he could not increase my dose until Tasigna was approved and he needed to increase my dose so I am now on Dasatinib which has been approved I am on 100mg a day. I would suggest if your on Tasigna 800mg a day you watch your sugar level and any pain in the back. I found I tolerated 400mg and it did help me. but I quote from the book on it " The most common side effects include low blood counts, rash, headache, nausea and itching. Other possible serious side effects include liver damage, fluid accumulation and pancreas inflammation. I had all of these and my blood counts and platelets counts are still very very low. I hope that Dasatinib will slow down my use of Blood Products. I hope this will explain my symptoms but as I have had CML a very long time and have been on a variety of drugs including Busfan myleran , hydrea, gleevec, nilotinib and dasatinib, I would ask you just mention these side effects to you own doc so that you and him are aware of the possible side effects. I can tell you anything to do with the pancreas hurts, you would know if you had it. Skipd dx'ed 30 ++++ years ago --- mtmaynor@... wrote: > > Jean: > > I have found that Tasigna is much easier on the > intestines > thank Gleevec. In fact, Gleevec gave me daily > diarrhea and > Tasigna gives me the opposite. I do take stool > softeners. > (fun stuff to write about huh?). I had an initial > increase in > pancreatic enzymes, but they subsided after 30 days > on > the drug. > > I get flush for a few hours right after taking each > dose (I take > 400 mg, two times a day, 8 hours apart) and I have > some > fatigue. In fact, the bone pain, muscle cramping > and queasy > stomach all disappeared when I began Tasigna. > > I would recommend stool softeners, Gatorade (to > balance > electrolytes) and staring on a lower dose and > building to > a higher one. They are looking at the efficacy of > Tasigna > on a lower maintenance dose for those who reach > PCRU. > > Good luck. > > Matt > > > In a message dated 5/22/2008 4:38:57 P.M. Eastern > Daylight Time, > jmcallister35@... writes: > > > > > hi sharon, i am new to the group altho not to CML (9 > yrs in 8/08). > never thought i'd live to say that as my 1st dr told > me one ususlly > lives only about 4yrs.your post interested me as my > dr wants to put > me on tasagna because gleevec is lowing my > platelets and making me > anemic plus other annoying side effects.i told her > i have had these > problems for almost the whole time i have had CML > (9years), but i > think she is being the typical dr, covering all > bases, and informing > the patient. which i understand. i am going to get > the results of my > latest blood work in about a week, and then we will > decide.after i > read you post and saw the reference to the > pancreas,now i think i > have another concern lol. i told the dr i wasn't to > keen on starting > another high-powered medicine and having another > set of side effects > as i have queasy intestines, both large and > small.any tips will be > appreciated. thanks jean > > > > > > > > > > > **************Get trade secrets for amazing burgers. > Watch " Cooking with > Tyler Florence " on AOL Food. > (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002) > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 and Sharon, I too had the experiences on Gleevec- side effects that really became unbearable after almost 5 years. I took one gleevec break for 10 weeks (as per oncologist and Druker suggested). I resumed on 300 mg gleevec and did pretty well until about 9 months into it and the side effects just all came back with a vengence. Finally my oncologist put me ( as his first patient) on tasigna. I have been on that since Dec. 27 - so about 5 months. We started at 800 mg and after two weeks, took a break for 5 days. The side effects were awful. Then I resumed at 400 mg and Sharon, like you, I have never felt so good. Just a few weeks ago my counts were ALL NORMAL for the first time since diagnosis. I do have some fatigue and insomnia, but I am thinking that may be my age ( sucks to get old). Every single other side effect is gone. I go next week for some blood work again and am sure that I will be the same as the past 5 years: PCRU. I am incredibly lucky.... I am going to try to post more now that school is out. I am having surgery next week ( bunionectomy) so I will be laid up and happy to get on this laptop and visit a while. I have been horrible about posting. Good wishes to all, Barb in AZ > > > > I have been on Tasagna for 77days now and I have absolutely no side > affects. > > Except my blood work shows my Amylase and my lipase as being high. > > > > Amylase-normal is 25-115 > > > > Lipase normal is 23-300 > > > > > > > > Amylase went from 103 on 4/9 > > > > Then down to 88 on 4/23 > > > > Then up to 547 on 5/14 > > > > > > > > My lipase went from 43 on 4/23 > > > > To 547 on 5/14 > > > > > > > > So naturally they were concerned. > > > > > > > > This all has to do with the Pancreas being affected. But tasagna > has a > > tendency to do that. But it also has a tendency to show high > readings that > > mean nothing. > > > > I have no pains in my stomach. I feel fine. But they are watching > closer. If > > I have pains in my stomach I should go in right away. But again I > feel fine. > > I will go in again on Wed for another blood test. > > > > > > > > I feel so so fortunate that I have this assistant to my Oncologist. > She is > > wonderful and is the first person that I can really discuss the > medication > > with. She knows all about it. And was surprised that I knew so > much. > > > > > > > > I am writing this to let everyone else on Tasagna know that they > should be > > having their Amylase and Lipase tested regularly. I was never > tested for it > > before. > > > > > > > > Since being on Tasagna I have not had a PCR done. I am going in to > have one > > in June. They do them every three months. I am anxious to see how I > am > > doing. > > > > > > > > Love to all, > > > > Sharon > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 G'day Barb - that is great news. I hope you continue to do well. Regards, from Down Under Rodorbal Labradors & Dachshund Smooths Australia <http://www.labradata.com/> _____ From: [mailto: ] On Behalf Of Barb Stanley Sent: Saturday, 24 May 2008 11:02 PM Subject: [ ] Re: TASAGNA AND PANCREAS and Sharon, I too had the experiences on Gleevec- side effects that really became unbearable after almost 5 years. I took one gleevec break for 10 weeks (as per oncologist and Druker suggested). I resumed on 300 mg gleevec and did pretty well until about 9 months into it and the side effects just all came back with a vengence. Finally my oncologist put me ( as his first patient) on tasigna. I have been on that since Dec. 27 - so about 5 months. We started at 800 mg and after two weeks, took a break for 5 days. The side effects were awful. Then I resumed at 400 mg and Sharon, like you, I have never felt so good. Just a few weeks ago my counts were ALL NORMAL for the first time since diagnosis. I do have some fatigue and insomnia, but I am thinking that may be my age ( sucks to get old). Every single other side effect is gone. I go next week for some blood work again and am sure that I will be the same as the past 5 years: PCRU. I am incredibly lucky.... I am going to try to post more now that school is out. I am having surgery next week ( bunionectomy) so I will be laid up and happy to get on this laptop and visit a while. I have been horrible about posting. Good wishes to all, Barb in AZ > > > > I have been on Tasagna for 77days now and I have absolutely no side > affects. > > Except my blood work shows my Amylase and my lipase as being high. > > > > Amylase-normal is 25-115 > > > > Lipase normal is 23-300 > > > > > > > > Amylase went from 103 on 4/9 > > > > Then down to 88 on 4/23 > > > > Then up to 547 on 5/14 > > > > > > > > My lipase went from 43 on 4/23 > > > > To 547 on 5/14 > > > > > > > > So naturally they were concerned. > > > > > > > > This all has to do with the Pancreas being affected. But tasagna > has a > > tendency to do that. But it also has a tendency to show high > readings that > > mean nothing. > > > > I have no pains in my stomach. I feel fine. But they are watching > closer. If > > I have pains in my stomach I should go in right away. But again I > feel fine. > > I will go in again on Wed for another blood test. > > > > > > > > I feel so so fortunate that I have this assistant to my Oncologist. > She is > > wonderful and is the first person that I can really discuss the > medication > > with. She knows all about it. And was surprised that I knew so > much. > > > > > > > > I am writing this to let everyone else on Tasagna know that they > should be > > having their Amylase and Lipase tested regularly. I was never > tested for it > > before. > > > > > > > > Since being on Tasagna I have not had a PCR done. I am going in to > have one > > in June. They do them every three months. I am anxious to see how I > am > > doing. > > > > > > > > Love to all, > > > > Sharon > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 That is wondedrful Sharon. And you Are correct in that an increase in Pancreatic enzymes is normal. They Told me they would stabilize ovetime. Glad to hear you are doing well. With warm regards, Matt Maynor 8132 Hollyridge Road ville, FL 32256 mtmaynor@... 904-219-9108 [ ] TASAGNA AND PANCREAS I have been on Tasagna for 77days now and I have absolutely no side affects= Quote Link to comment Share on other sites More sharing options...
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