I have not been posting for some time now, but I have to answer about colonoscopies. I have had 5 done the 5th one just on mon 8/9/2010. I guarantee you I will die before I ever have another one.I informed the nurse that the drug they were going to use on me did not work for me but they used it anyhow. I was awake throughout the entire procedure which took about 25 min. The pain was so horrible that I begged to die. I screamed and tried to pull away and begged them to stop. When I finish this reply, I will be checking to see if they can stop the procedure once it is started, because if they can a lawsuit is coming.I am still sore inside my abdomen. So my advice to others is check with your drs. about what anesthesia will be used and then read up on it. Sorry if I am scaring anyone but I do not wish what I went through on my worst enemy. I actually woke up screaming last night in a nightmare about it and it took my husband an hour to calm me down. I HAVE NOT EXAGGERATED ANYTHING I HAVE STATED HERE. SO HELP ME GOD. Good luck to you all. Bev (boopshin)
________________________________ From: "[email protected]" <[email protected]> To: Digest Recipients <[email protected]> Sent: Sun, August 8, 2010 5:27:14 AM Subject: [CMLHope] Digest for [email protected] - 9 Messages in 4 Topics Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics * Yea! Colonoscopy done! [2 Updates] * Gleevic/Tasigna [2 Updates] * remission [4 Updates] * Gleevec - diarrhea [1 Update] Topic: Yea! Colonoscopy done! [email protected] Aug 07 05:16PM -0400 ^ Great Suzieq, You are a trooper for sure. Yes, we have been through so much, test come much easier for us now. So bring them one hehe. Jeanie<3 In a message dated 8/2/2010 9:37:51 A.M. Pacific Daylight Time, [email protected] writes: Jeanie: It really wasn't as bad as I had it built up to be. Everyone said the prep was the worst, but those of us who are on Gleevec & went through the awful Diarrhea already knows how that is. & to be honest, I really did not think this was all that bad. I took the "pills" instead of drinking that awful liquid stuff. (smile) They told me to stop any drugs that might cause "bleeding" (like the low dose Bayer that I take each night) at least five to six days in advance. Not knowing about all the different stuff i take, I just stopped it all. Then, they told me afterwards to not resume the "aspirin" or other drugs that cause bleeding for at least ten days after the procedure. I have followed every thing they told me to the letter and have had no problems so far. To be honest, some of the side effects from Gleevec have been far worse than the entire prep & procedure, I think. :) Plus, having the dreaded Bone Marrow Biopsy's are much more "torturous" than this ever was! Thanks, Suzieq -- [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 [email protected] Aug 07 05:27PM -0400 ^ Good old Epsom salts does the job every time. Jeanie<3 In a message dated 8/3/2010 8:50:14 A.M. Pacific Daylight Time, [email protected] writes: Greenie: Well, I guess I'm just a big ol' baby then, 'cos I wasn't drinking any of it. I remembered how I almost didn't get that chalky stuff down once when having a Cat Scan done of the upper GI........that was when I was dx'ed with CML, but at the time, they didn't know what I had. Anyway, I was thinking of that stuff when she asked me and, I chose the big ol' horsepills that tasted like salt. (smile) Thankfully, I don't have a problem swallowing pills because these things were huge. Blessings to all, Suzieq Topic: Gleevic/Tasigna [email protected] Aug 07 05:20PM -0400 ^ My Sprycel is aroung $8000,00 monthly, that is not right. My insurance pays, but what of the people who don't have insurance. My pharmacy says my pill is the most expensive one they have. Go figure; there's nothing we can do about it. Just count our lucky stars we can get the drugs we need. Jeanie<3 In a message dated 8/2/2010 9:45:10 A.M. Pacific Daylight Time, [email protected] writes: Hi all: Here's my take on this "Tasigna over Gleevec" possible change in protocol & you can take it for what ever it's worth. I try to have a positive outlook on things and would like to think everyone is honest and with integrity. But, with so much happening in our country.......I've become somewhat "jaded" & tend more to think the worst now. Novartis is soon to lose it's hold on the patent of Gleevec......what, three to four years......which will allow generic brands to be made, thus making it less expensive. (My one month supply is now $4460). When the article first came out a few months ago where they were discussing about making Tasigna the "go to" drug Doctors would begin choosing to treat CML, I kind of figured it then that it all comes down to "greed" on the drug companies part. Sorry, but, I just can't help it when one sees the money these drug companies make a year........it is totally insane. Just my opinion (which really isn't worth much, LOL) Suzieq -- [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 [email protected] Aug 07 05:26PM -0400 ^ Wow! that is a lot of money! Every year when I get the total of what it is costing to keep me alive, I am amazed. My husband never even made that much money in a year. I also had another thought, when I was first dx they said I might live 5 years without treatment. After 5 years on Gleevec, My blood went all out of whack and I was back where I started. Tasigna worked for 8 months and now I am on Sprycel. So how long is that going to work? Just a thought. Jeanie<3 In a message dated 8/2/2010 1:46:00 P.M. Pacific Daylight Time, [email protected] writes: Suzieq, Gleevec was approved in May of 2001 if I'm not mistaken. Between then and the end of the year they made in the United States alone, 1.6 Billion dollars on the drug. I saw this a med. news paper. Greenie In a message dated 8/2/2010 11:45:12 A.M. Central Daylight Time, [email protected] writes: Hi all: Here's my take on this "Tasigna over Gleevec" possible change in protocol & you can take it for what ever it's worth. I try to have a positive outlook on things and would like to think everyone is honest and with integrity. But, with so much happening in our country.......I've become somewhat "jaded" & tend more to think the worst now. Novartis is soon to lose it's hold on the patent of Gleevec......what, three to four years......which will allow generic brands to be made, thus making it less expensive. (My one month supply is now $4460). When the article first came out a few months ago where they were discussing about making Tasigna the "go to" drug Doctors would begin choosing to treat CML, I kind of figured it then that it all comes down to "greed" on the drug companies part. Sorry, but, I just can't help it when one sees the money these drug companies make a year........it is totally insane. Just my opinion (which really isn't worth much, LOL) Suzieq -- [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 -- [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) Topic: remission Suzan Collins <[email protected]> Aug 07 04:09AM -0700 ^ Hello all I was dxed on June 4, 2004 at 98% positive. I was on Gleevec from then until Nov 2008 and was switched to Tasigna because of all the bad side effects I continued to suffer. I continue to have side effects with Tasigna but not as severe except now I get skin ulcers with the Tasigna. I lost 30 pounds right off the bat when I stopped the Gleevec which was good. HOWEVER my last fish test in July showed me at ZERO on the molecular level. WHOO. It has been a long journey as it is for all of us with side effects and all but what a BLESSING to get the good news. Suzan [email protected] Aug 07 09:38AM -0400 ^ Suzan, it's always nice to here good news. Greenie In a message dated 8/7/2010 6:09:56 A.M. Central Daylight Time, [email protected] writes: Hello all I was dxed on June 4, 2004 at 98% positive. I was on Gleevec from then until Nov 2008 and was switched to Tasigna because of all the bad side effects I continued to suffer. I continue to have side effects with Tasigna but not as severe except now I get skin ulcers with the Tasigna. I lost 30 pounds right off the bat when I stopped the Gleevec which was good. HOWEVER my last fish test in July showed me at ZERO on the molecular level. WHOO. It has been a long journey as it is for all of us with side effects and all but what a BLESSING to get the good news. Suzan -- [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) [email protected] Aug 07 12:26PM -0400 ^ Thanks so much for sharing your good news..spreading the hope around to all of us is inspiring and sustaining....sharing about your side effects reminds us all that e are in this together and each of us suffers side effects in different ways that remind us e have this illness, yet we aspire to thrive with it!!! All the best, Beth [email protected] Aug 07 05:10PM -0400 ^ Great news Suzan, I'm so glad you are doing good on Tasi. Blessings Jeanie<3 In a message dated 8/7/2010 4:09:53 A.M. Pacific Daylight Time, [email protected] writes: Hello all I was dxed on June 4, 2004 at 98% positive. I was on Gleevec from then until Nov 2008 and was switched to Tasigna because of all the bad side effects I continued to suffer. I continue to have side effects with Tasigna but not as severe except now I get skin ulcers with the Tasigna. I lost 30 pounds right off the bat when I stopped the Gleevec which was good. HOWEVER my last fish test in July showed me at ZERO on the molecular level. WHOO. It has been a long journey as it is for all of us with side effects and all but what a BLESSING to get the good news. Suzan -- [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) Topic: Gleevec - diarrhea [email protected] Aug 07 04:50PM -0400 ^ Hi I took Psyllium that I bought at the health food store. It cured my diarrhea in a few days. Here is what it is: Psyllium seed husks also known as ispaghula, isabgol, or simply as psyllium, are portions of the seeds of the plant Plantago ovata, (genus Plantago), a native of India and Pakistan. They are soluble in water, expanding and becoming mucilaginous when wet. Psyllium seed husks are indigestible in human beings and are often used as a source of dietary fiber. They are used to relieve constipation, irritable bowel syndrome, diverticular disease, and diarrhea. They are also used as a regular dietary supplement to improve and maintain regular GI transit. The inert bulk of the husks helps provide a constant volume of solid material irrespective of other aspects of the diet or any disease condition of the gut. Some recent research is also showing them to be promising in lowering cholesterol and controlling diabetes.[1] Other uses include gluten-free baking, where ground psyllium seed husks bind moisture and help make the bread less crumbly. The husks are used whole in their natural state, or dried and chopped or powdered for easier consumption. In either of these forms, one takes them by mixing them with water or another fluid. Sometimes they are combined with clay as a detoxification drink. ("Questionable Cancer Therapies", Barrie R Cassileth, PhD)[2] They are also available in capsules. Over-the-counter laxatives and fiber supplements such as Metamucil, Colon Cleanse, Serutan, Fybogel, Bonvit, and Effersyllium have psyllium husks as their main ingredient. They may be combined with other ingredients (e.g., Blackstrap molasses is sometimes used with psyllium seed husks for its high mineral and vitamin content, as well as being an excellent carrier). A typical dose is one to three teaspoons per glass of water. Psyllium seeds can be used for the same purpose at a lower cost. In a message dated 7/29/2010 8:23:25 A.M. Pacific Daylight Time, [email protected] writes: Hi Warriors, I've been meaning to post a couple of things. 1st, you might recall the Marie Callendar's recalled a batch of their Cheesy Chicken and Rice because of possible salmonella. Well I wish they would have done it about 3 weeks sooner! Anyway dealing with that I came across something that has been a real boon to me dealing with Gleevec. I started taking Benefiber (daily) to get past the lasting effects of Marie's chicken and it worked. What I didn't expect was that in a week or so most of the nasty effects of Gleevec in that area that have plagued me since day 2 (day 1 was spent vomiting) have for the most part DISAPPEARED. I started with the packets that you add to a bottle of drinking water. They are very convenient and quite tasty. I have switched to the mix-it-yourself version now because as many of you know I am really cheap, I mean thrifty. My only complain with the latter is that apparently you can't get the better tasting citrus punch flavor that way. Hope that helps someone. More soon. Patrick (on Galveston Island) -- [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 ------------------------------------------------- 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 -- [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
