[CMLHope] Advice on Liver Enzymes
Hi everybody looking for experience / advice on elevated liver enzyme levels, Vanessa is intolerant to Gleevec, both from a perspective of her blood counts not being able to stabilise at a safe level, but more critically that her liver enzymes are elevated. She has now been off Gleveec for 3-4 weeks to give her liver a rest. When the enzymes get back to normal levels, her onc will then start her on Sprycell. Here lies the issue. Vanessa's enyme levels are going up not down, despite the break from the meds. They are not at dangerous levels, but unfortunately going up. Her ALT level is at 308 and her AST level is at 114. The only supplements she is taking is flax seed oil and iron tablets everyday, which she is now going to take a break from. She doesn t drink and has a very healthy diet. Any ideas? Cheers Steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Advice on Sprycel please
Hi all haven t posted for some time, but we are keen to get some information on Sprycel. Although Vanessa was having a great response to Gleevec in terms of reaching CCR from the fish test, she is unable to tolerate it anymore due to the impact on her liver. As of yesterday, having been on 400 then 300mg her onc finally concluded that enough was enough. She is having a 10 day break to allow the liver to recover and is then starting on Sprycel. We know very little about the treatment (as it is so new) and are really keen to get as much imformation as possible. We'd be very gratelful to hear from anyone who has experience of sprycel, knows anyone with experience of it, or has any useful information to share, particularly in relation to success rates and side efffects. Trey and Anjana I saw a couple of postings you made back in August. Do you have any more to add? Thank you and happy new year Stay well Steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Update on Vanessa and any advice welcome please
Hi everyone, it's been sometime since I've posted but wanted to get some opinions. We went to see our oncologist at Sloane in NY today and received mixed news. Vanessa's standard cytogenic test and Fish is absent of any Philadelphia chromosome. She was 100% +ve at diagnosis. This is after 4 months, which i gather is a great result. Is it? The Molecular tests still show evidence of the leukemia. What should we be looking for and asking for next? However, in relation to her bloods that were taken today, her White cells are at 1.7 (4 weeks ago they were at 5.6) and her platelets are down to 117. As a consequence she has come off the Gleevec for a week and had an injection to stimulate white cell production. She is having additional blood tests next week to check the Blood Counts and we'll take it from there. The onc is talking about putting her back on 300Mg of Gleevec. She has just come off 400mg. As you can imagine, it has been another day on the rollercoaster. Any views, comments and observations would be very welcome, especially if any of you have had similar experiences. stay well Steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Stinging/tingling sensation in the upper legs
Hi Has anyone experienced a tingling or mild burning sensation in the thighs or upper legs? and if so, at what stage of treatment was it. I have been on Gleevac for 3 months now and am having this strange sensation. It's not painful in anyway, I was just wondering if it's normal or if I should be resting/sitting down more. Thanks a lot Vanessa --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Time Frames for Complete Cytogenic Remission side effects tips
Hi everybody was just looking for some clarity on a couple of issues. Vanessa has been on Gleevec now for approx 2.5months and has achieved a complete haemotological response. The questions are as follows: How quickly can she expect a CCR? What are the usual timeframes? Is it possible to achieve Haemotologocal response but not get to CCR? The whites of Vanessa's eyes are lightly' bloodshot.We assume as a result of the Gleevec. Does anybody have a recommendation for alleviating this? Finally her hair is thinning a little, again as a response to the Gleevec. Does anyone have any advice? Cheers Steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Muscle Pain
Thanks Katy. What did you treat it with? Does anyone else have any suggestions? Are there any drugs that one should avoid with Gleevec? Many thanks Steve [EMAIL PROTECTED] wrote: OMW yes! I had so much muscle and bone pain at the beginning it wassnt funny. I still have it but not quite as bad. My neck is the only thing that is consistently hurting since starting gleevec. Hugs, Katy -- xanga.com/katybug45 -- Original message -- From: Priesty [EMAIL PROTECTED] Hi wondered if anyone can help...my wife has significant muscle pain around her neck and shoulders which is a little reminiscent of pain she had prior to her CML diagnosis. I am aware that bone pain occurs, but does anyone have muscle pain and is it attributable to the CML or Gleevec? let me know cheers steve --NextPart_Webmail_9m3u9jl4l_7080_1154584696_0 Content-Type: text/html Content-Transfer-Encoding: 8bit X-Google-AttachSize: 977 htmlbody DIVOMW yes! I had so much muscle and bone pain at the beginning it wassnt funny. I still have it but not quite as bad. My neck is the only thing that is consistently hurting since starting gleevec. /DIV DIVHugs,/DIV DIVKaty/DIV DIV /DIV DIV class=signature id=signature--BRxanga.com/katybug45/DIV DIV /DIV BLOCKQUOTE style=PADDING-LEFT: 5px; MARGIN-LEFT: 5px; BORDER-LEFT: #1010ff 2px solid-- Original message -- BRFrom: Priesty [EMAIL PROTECTED] BRBR BR Hi BR wondered if anyone can help...my wife has significant muscle pain BR around her neck and shoulders which is a little reminiscent of pain she BR had prior to her CML diagnosis. I am aware that bone pain occurs, but BR does anyone have muscle pain and is it attributable to the CML or BR Gleevec? BR let me know BR cheers BR steve BR BR BR --NextPart_Webmail_9m3u9jl4l_7080_1154584696_0-- --NextPart_Webmail_9m3u9jl4l_7080_1154584696_0-- --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Can someone help with the terminology?
All firstly I wanted to reitterate my thanks for your support over the last few days. It is truely terrific. My apologies, I have misled you in terms of Vanessa's initial treatment, It was not interferon but Hydroxyurea. As I mentioned, she had a count of 250k WBC and a bone marrow biopsy was done immediately to establish that it was CML and to assess whether the Ph+ chromosome was present. After a week , she was then put onto 600Mg of Gleevec. From what we can tell her response to date has been pretty good, except for the WBC being at 2k. With regard to her % ratio, we don t know what that is at present. We have another BM Biopsy next week. Based on the feedback we will definitely enquire in more detail why this is being done so soon. We are getting care from Sloane Kettering in New York. Best Regards Steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
Thanks for the response Rob, we don t know that. Vanessa has another Bone Marrow Biopsy in just over a week to check that cheers steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hi I'm New and have a couple of questions
All thank you so much for the responses so far, it is great to have an opportunity to share with with people that truely understand. thanks Steve --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
