Diane (geminidi62...) Hang in there. I had leg pains, muscle cramps, full body rash, intestinal cramps, puffy eyes, weight gain, nausea, on and on - but hang in there. I still have low blood counts and need boosts to my red and white blood cells occasionally - my platelets have been ok for some time now. Just let your body work this thing out - don't give up - that is what The Beast wants you to do. Good luck, fight hard and laugh lots!!!
joannie clements dxd 12/01 600-700 Gleevec -----Original Message----- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Monday, October 11, 2004 4:40 PM To: [EMAIL PROTECTED] Subject: [CML] Digest Number 3662 There are 25 messages in this issue. Topics in this digest: 1. RE: Bruising--and i don't know why From: "David Schulz" <[EMAIL PROTECTED]> 2. New file uploaded to CML From: CML 3. Article on Cancer From: "Cheryl-Anne Simoneau" <[EMAIL PROTECTED]> 4. transplant (mini) vs gleevec From: "Karen Andrews" <[EMAIL PROTECTED]> 5. Re: transplant vs. Gleevec for a pediatric patient From: "mpetersen123" <[EMAIL PROTECTED]> 6. Re: File - We Encourage Participation In The Group From: "mpetersen123" <[EMAIL PROTECTED]> 7. Barb-Pediatric BMT From: "Geri" <[EMAIL PROTECTED]> 8. UPDATE ON GLORIA bone marrow transplant From: "maymay194" <[EMAIL PROTECTED]> 9. UPDATE ON GLORIA'S BONE MARROW TRANSPLANT From: "maymay194" <[EMAIL PROTECTED]> 10. Re: Article on Cancer From: "mpetersen123" <[EMAIL PROTECTED]> 11. Re: UPDATE ON GLORIA'S BONE MARROW TRANSPLANT From: "mpetersen123" <[EMAIL PROTECTED]> 12. Re: UPDATE ON GLORIA'S BONE MARROW TRANSPLANT From: "Jeannine" <[EMAIL PROTECTED]> 13. Re: transplant vs. Gleevec for a pediatric patient From: "traceyincanada" <[EMAIL PROTECTED]> 14. Re: Article on Cancer From: "John M" <[EMAIL PROTECTED]> 15. Re: Article on Cancer From: "cher111376" <[EMAIL PROTECTED]> 16. Recommended dosage of Gleevec From: Ann Jessup <[EMAIL PROTECTED]> 17. Re: Recommended dosage of Gleevec From: "Rob" <[EMAIL PROTECTED]> 18. Re: Recommended dosage of Gleevec From: "skink1100" <[EMAIL PROTECTED]> 19. Re: transplant vs. Gleevec for a pediatric patient From: "kanneharless" <[EMAIL PROTECTED]> 20. Re: Recommended dosage of Gleevec From: "mpetersen123" <[EMAIL PROTECTED]> 21. RE: Re: Recommended dosage of Gleevec From: "jennifer g" <[EMAIL PROTECTED]> 22. Re: Bruising--and i don't know why From: [EMAIL PROTECTED] 23. Re: Recommended dosage of Gleevec From: "mpetersen123" <[EMAIL PROTECTED]> 24. Re: Recommended dosage of Gleevec From: Dana Bonistalli <[EMAIL PROTECTED]> 25. Re: Re: Skin Bumps/Marty From: Kathy Finnegan <[EMAIL PROTECTED]> ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Mon, 11 Oct 2004 09:43:16 -0500 From: "David Schulz" <[EMAIL PROTECTED]> Subject: RE: Bruising--and i don't know why I also bruise easily, but break the skin when I touch a sharp object. I don't get a bruise. It takes a few weeks to heal ("Band-aid Man"). I think the outer layer of skin does not work, since I am always freezing. Even a slight draft or being in an air conditioned room feels cold on the skin. It needs to be about 74 degrees for me to wear a short sleeved shirt. Platelets are on the low side, but in the low range that the oncs like. Go figure. Dave >From: [EMAIL PROTECTED] >Reply-To: [EMAIL PROTECTED] >To: [EMAIL PROTECTED] >Subject: [CML] Bruising--and i don't know why >Date: Fri, 08 Oct 2004 20:36:31 -0000 > > >I just noticed that I have quite a few >bruises. Very odd. >Does anybody have any input? > > > ________________________________________________________________________ ________________________________________________________________________ Message: 2 Date: 11 Oct 2004 15:15:13 -0000 From: CML Subject: New file uploaded to CML Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the CML group. File : /Ignoring the biggest killer of all.doc Uploaded by : cher111376 <[EMAIL PROTECTED]> Description : Interesting news article on Cancer in General with quotes from Dr. Druker You can access this file at the URL: http://groups.yahoo.com/group/CML/files/Ignoring%20the%20biggest%20killer%20 of%20all.doc To learn more about file sharing for your group, please visit: http://help.yahoo.com/help/us/groups/files Regards, cher111376 <[EMAIL PROTECTED]> ________________________________________________________________________ ________________________________________________________________________ Message: 3 Date: Mon, 11 Oct 2004 11:23:06 -0400 From: "Cheryl-Anne Simoneau" <[EMAIL PROTECTED]> Subject: Article on Cancer 1st off - Happy Thanksgiving to the Canadians on the list and Happy Columbus Day to all the Americans on this list! I just uploaded a file from a news article that talks about the high cost of cancer research. Some may think it has political undertones to it, but I do not, I think it is good article with interesting information. I will not accept any flack from anyone for uploading or posting this message announcing it. There are only 95 people on the CMLTalk list and over 1700 here, so I felt this article should be shared by us all. Dr. Druker is quoted a few times in the article and it is interesting to hear what he has to say about cancer research. Have a great day - I am off on a hike to work off the turkey, stuffing and cranberry maple sauce - yummy! Just think I am the lucky one that gets to do this all over again in November! Better make that a long hike! Cheers, Cheryl-Anne [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 4 Date: Mon, 11 Oct 2004 10:42:38 -0400 From: "Karen Andrews" <[EMAIL PROTECTED]> Subject: transplant (mini) vs gleevec Barb, I saw your post about your son and the low intensity transplant. I have been doing a lot of research on them and from what I am hering there seems to be a lot of promise. I have a consultation with Dr Alleya, a transplant dr at Dana Farber to discuss it and hopefully will have a lot of encouraging info. Apparently the low intensity (mini) transplant works very well with cml in particular due to the benefits of the graft vs leukemia. I have heard that 93% of patients undergoing minis are still alive after a year (compared to something like 70% with regular transplants). I havent read a whole lot of stats about cure rates, but I hope to get some updated stats on Thursday, I have an exact matched brother donor. I have been on gleevec for 3 years (diagnosed in later chronic 3 years ago). I actually was PCR undetectable after a year of gleevec, but gradually have began to become resistant to gleevec (despite 800mg/day dose). In June 2003 I was 7% fish pos and pcr pos. In Dec 2003, a bmb showed 1 bad out of 20 and 12% fish pos. In June I was 23 % fish pos. Then last month I was 76% fish pos. In Sep, my wbc started rising as well (its always been right around 5 and now its 10.6). Platlets were also up to 600. I talked to Dr Talpaz at MD Anderson, but I am not quite bad enough for the BMS trial (yet). His guess is that when I get to the point that my counts meet the BMS trial criteria, it will be expanded to other centers (like Boston). In the meantime, I am also very seriously pursuing the Conforma HSP90 phase 1 trial that is opening up in Boston at the end of October. Has anyone heard of the Conforma HSP90 trial and if so, do you have any thoughts/input? Karen in MA ________________________________________________________________________ ________________________________________________________________________ Message: 5 Date: Mon, 11 Oct 2004 16:47:31 -0000 From: "mpetersen123" <[EMAIL PROTECTED]> Subject: Re: transplant vs. Gleevec for a pediatric patient Hi Barb, This sounds like a real dilemma. Gleevec vs. SCT as competing treatment options is a very hot topic in general and especially so for the young who have a good prognosis for surviving an SCT. I don't have any literature to share about this, but just a couple of observations: - If Gleevec is working well for your son and his quality of life on it is good (ie few side effects), then this is a big plus for continued use of Gleevec. - If your son does not have a matched related donor, then this is a big red flag for an SCT because of the significantly increased risk of GVHD. - The 15 year prognosis for CML patients on Gleevec is likely conservative (low) and it's very theoretical (most likely based on Gleevec data extrapolated from patients with similar responses from Interferon). The 15 year number being bandied about does not take into account the rapid progress that is being made in both understanding the disease and the new targeted therapies on the horizon. As I mentioned this is very controversial. Particularly because of the age of your son. I'm relatively new to the list but have already seen people pass away from complications due to GVHD. If it were me, I would probably take the less risky short term approach (Gleevec) and hope for continued progress in treating this disease... Good luck with your decision though, I know it's not an easy one. Regards, Mark --- In [EMAIL PROTECTED], Neddo Family <[EMAIL PROTECTED]> wrote: > Hi all, > > My name is Barb and my son was dx 8/16/04. He is 15. He was diagnosed > while in the chronic phase. He is on 400 mg of Gleevec and takes it at > night with dinner. He shows few side effects - some knee pain but this > could be growing pains, low iron. His WBC count is down to "normal" and > there was no detectable Ph in his blood at last check (PCR). > > I know the Gleevec vs. transplant issue has been covered before, but I > am approaching it as a mother who wants to see her son live beyond 15 > more years. No one in the immediate family is a good marrow match (mom, > dad, sister). His onc. says to stick with the Gleevec and sent a > research article to back up her idea. Treatment of CML in Pediatric > Patients: Should Imatinib Mesylate (STI-571, Gleevec) or Allogeneic > Hematopoietic Cell Transplant Be Front-Line Therapy? (Pediatr Blood > Cancer 2004;43:523-533, http://www.interscience.wiley.com). This > research isn't conclusive for pediatric patients since there aren't a > lot of pediatric CML cases to study. However, it does state that chances > of survival increase if the transplant is done within a year of > diagnosis. It also mentions Reduced Intensity Conditioning Allografts > (RIC) which is a marrow transplant with less intensive chemotherapy > beforehand. I am interested in information on this. I am trying to > gather up the pros and the cons for a transplant. Any input or other > research references would be greatly appreciated. I have been watching > the list since early Sept. and have learned a lot. > > Barb Neddo, > Eagle River, WI ________________________________________________________________________ ________________________________________________________________________ Message: 6 Date: Mon, 11 Oct 2004 17:23:19 -0000 From: "mpetersen123" <[EMAIL PROTECTED]> Subject: Re: File - We Encourage Participation In The Group Hi Diane, Gleevec is a known suppressor of healthy marrow. It's not unusual for people to get low counts when starting Gleevec (counts usually improve over time). Higher initial doses (>400mg) of Gleevec are also known to hammer blood counts. Has your doctor told you why he wants you on higher dose Gleevec initially especially given your side effects? There was an article by Dr. Kantarjian in Blood magazine earlier this year that described some benefits of high dose (800 mg) of Gleevec. In a nutshell a higher percentage of people attained a molecular response from Gleevec with very little clonal evolution (further mutations). The biggest side effect (~50% of patients) is low cell counts however and many of these patients needed shots or were moved back to standard dose Gleevec for awhile (almost all were able to get back to 800mg). Based on the findings of this article, I discussed high dose Gleevec therapy with my onc. and we decided to give it a shot. The going was very rough however. I had a severe gout attack that may or may not have been related to Gleevec edema and my platelets and hemoglobin cratered (platelets went from 755 to 47 and hemo to 8). We decided to go to the standard dose of 400mg and I've tolerated that much better ever since (counts are normal now). Later, my heme/onc told me that he attended a Novartis conference regarding high dose Gleevec and that every single person who was there except Dr. Kantarjian was against it. Even Dr. Druker and Dr. Sawyers are not a fan of it. With the new BMS and AMN drugs on the horizon there is a safety net if a patient fails Gleevec so the goals of high dose Gleevec treatment may no longer be relevant. Many hemetologists/oncologist are not yet aware of the BMS-354825 or AMN-107 drugs however so this is something to bring up with your Dr. Regards, Mark --- In [EMAIL PROTECTED], Diane <[EMAIL PROTECTED]> wrote: > Hi group... just wondering, does anyone else have to receive shots for anemia due to a low red blood cell count? Not only are my white blood cells out of whack, now my red ones are, too! I'm back to the dr's weekly for these shots. > > In addition, is anyone suffering from fever or weakness in the legs? I'm not sure WHAT to blame these side effects on... gleevec or anemia shots or plain ol' CML. > > I was just diagnosed on 9/11 and starting tomorrow I'll be on 600mg of gleevec a day... > > Any feedback would be appreciated. Love and hope to all. Diane in Philly. > > > > From: [EMAIL PROTECTED] > > Date: 2004/10/10 Sun AM 05:35:59 EDT > > To: [EMAIL PROTECTED] > > Subject: [CML] File - We Encourage Participation In The Group > > > > ________________________________________________________________________ ________________________________________________________________________ Message: 7 Date: Mon, 11 Oct 2004 13:48:17 -0400 From: "Geri" <[EMAIL PROTECTED]> Subject: Barb-Pediatric BMT Barb, First of all..just want you to know that someone out there actually knows where Eagle River is! My husband's family has been going up to Rhinelander for over 50 years and when we get to to go, Eagle River and Minoqua are always included in out sightseeing and fishing trips. Beautiful country up there-but chilly! I'd heed your Oncologists advice. If your son continues to do so wonderfully on Gleevec, he might as swell stay the course. If he is currently ph-, he is responding very well to the Gleevec. Has he had a q-pcr done? Now is a good time to begin getting it done every 3 months. The sooner after diagnosis you get one, the better-as you will have a better idea of baseline numbers (in my opinion). There are also a few drugs on the horizon that may prove to be just what we need to either take alone or combine with Gleevec for a long term durable remission. What hospital or BMT center are you affiliated with? I would also seek a second opinion before moving on towards BMT, if that is what you both decide. I'm glad for him that he is experiencing so few side effects. Geri Sehnert Rochester, NY [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 8 Date: Mon, 11 Oct 2004 17:52:12 -0000 From: "maymay194" <[EMAIL PROTECTED]> Subject: UPDATE ON GLORIA bone marrow transplant CAN I HEAR A ""OH YEAH"" THANK YOU LORD,,, GOD IS GOOD... Gloria's white blood count went up to 1.8 today, thank you everyone so much for putting my sister in your prayers, please dont stop... The BMT doctor told Gloria that she may be able to come home this weekend because her vitals are right on track, isnt that wonderful.... I am just so excited right now I cannot even think, if there is any more info, I will post today. Please continue to pray for my sister, and keep them supporting messages coming in, thank you. Love & bless to all, baby sis ________________________________________________________________________ ________________________________________________________________________ Message: 9 Date: Mon, 11 Oct 2004 17:54:33 -0000 From: "maymay194" <[EMAIL PROTECTED]> Subject: UPDATE ON GLORIA'S BONE MARROW TRANSPLANT CAN I HEAR A ""OH YEAH"" THANK YOU LORD,,, GOD IS GOOD... Gloria's white blood count went up to 1.8 today, thank you everyone so much for putting my sister in your prayers, please dont stop... The BMT doctor told Gloria that she may be able to come home this weekend because her vitals are right on track, isnt that wonderful.... I am just so excited right now I cannot even think, if there is any more info, I will post today. Please continue to pray for my sister, and keep them supporting messages coming in, thank you. Love & bless to all, baby sis http://www2.caringbridge.org/mi/gloriadunford/index.htm ________________________________________________________________________ ________________________________________________________________________ Message: 10 Date: Mon, 11 Oct 2004 18:13:01 -0000 From: "mpetersen123" <[EMAIL PROTECTED]> Subject: Re: Article on Cancer Cheryl-Anne, Thanks for posting this article. I don't know why anyone would give you flak for posting it. One thing that I found interesting is that it mentions Endostatin which was developed by Dr. Judah Folkman. Dr. Folkman's pioneering work with both Angiogenesis and Endostatin is perhaps one of the most interesting basic science stories I've ever read. I remember reading about Dr. Folkman in the L.A. Times several years ago (before being diagnosed with CML). I was amazed by his maverick approach then and even more so now. If anyone is curious about Dr. Folkman's work and what I'm talking about, I recommend watching one of the best Nova episodes ever (Cancer Warrior): DVD: http://www.amazon.com/exec/obidos/tg/detail/-/B00005NSY4/002-2259182- 3177669?v=glance Episode available online: http://www.pbs.org/wgbh/nova/cancer/ I found the Nova DVD to be great at explaining the background to Dr. Folkman's work, but one thing it only eludes to is the fact that he really became a pariah in the medical field because of his maverick beliefs about solid tumors. His work is universally accepted now but at the time he really put his reputation and career on the line. Because his theories about Angiogenesis were completely dismissed by the medical establishment, Dr. Folkman was placed in the unenviable position of having to prove to everyone that he was right. This is a tall order for someone with a surgical background who is not a molecular biologist. Amazingly, not only did Dr. Folkman prove that Angiogenesis is real, but he also came up with Endostatin one of the first break through drugs to reduce tumors by reversing the process of Angiogenesis. Today there are many new drugs that target solid tumors by attempting to reverse the process of Angiogenesis... None of them would be possible if not for Dr. Folkman's perseverance. Regards, Mark --- In [EMAIL PROTECTED], "Cheryl-Anne Simoneau" <[EMAIL PROTECTED]> wrote: > 1st off - Happy Thanksgiving to the Canadians on the list and Happy Columbus > Day to all the Americans on this list! > > I just uploaded a file from a news article that talks about the high cost of > cancer research. Some may think it has political undertones to it, but I do > not, I think it is good article with interesting information. I will not > accept any flack from anyone for uploading or posting this message > announcing it. There are only 95 people on the CMLTalk list and over 1700 > here, so I felt this article should be shared by us all. > > Dr. Druker is quoted a few times in the article and it is interesting to > hear what he has to say about cancer research. > > Have a great day - I am off on a hike to work off the turkey, stuffing and > cranberry maple sauce - yummy! Just think I am the lucky one that gets to > do this all over again in November! Better make that a long hike! > > Cheers, > Cheryl-Anne ________________________________________________________________________ ________________________________________________________________________ Message: 11 Date: Mon, 11 Oct 2004 18:14:32 -0000 From: "mpetersen123" <[EMAIL PROTECTED]> Subject: Re: UPDATE ON GLORIA'S BONE MARROW TRANSPLANT This is *Great* news! Thanks for keeping us posted, Mary. --- In [EMAIL PROTECTED], "maymay194" <[EMAIL PROTECTED]> wrote: > > CAN I HEAR A ""OH YEAH"" THANK YOU LORD,,, GOD IS GOOD... > Gloria's white blood count went up to 1.8 today, thank you everyone > so much for putting my sister in your prayers, please dont stop... > The BMT doctor told Gloria that she may be able to come home this > weekend because her vitals are right on track, isnt that wonderful.... > I am just so excited right now I cannot even think, if there is any > more info, I will post today. > Please continue to pray for my sister, and keep them supporting > messages coming in, thank you. > Love & bless to all, > baby sis > > http://www2.caringbridge.org/mi/gloriadunford/index.htm ________________________________________________________________________ ________________________________________________________________________ Message: 12 Date: Mon, 11 Oct 2004 13:24:49 -0500 From: "Jeannine" <[EMAIL PROTECTED]> Subject: Re: UPDATE ON GLORIA'S BONE MARROW TRANSPLANT Thanks baby sis, What great news. And you are so right "GOD IS GOOD". Will be saying more prayers in hopes that she'll be home come the weekend. ----- Original Message ----- From: maymay194 To: [EMAIL PROTECTED] Sent: Monday, October 11, 2004 12:54 PM Subject: [CML] UPDATE ON GLORIA'S BONE MARROW TRANSPLANT CAN I HEAR A ""OH YEAH"" THANK YOU LORD,,, GOD IS GOOD... Gloria's white blood count went up to 1.8 today, thank you everyone so much for putting my sister in your prayers, please dont stop... The BMT doctor told Gloria that she may be able to come home this weekend because her vitals are right on track, isnt that wonderful.... I am just so excited right now I cannot even think, if there is any more info, I will post today. Please continue to pray for my sister, and keep them supporting messages coming in, thank you. Love & bless to all, baby sis http://www2.caringbridge.org/mi/gloriadunford/index.htm New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [EMAIL PROTECTED] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups Sponsor ADVERTISEMENT ---------------------------------------------------------------------------- -- Yahoo! Groups Links a.. To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ b.. To unsubscribe from this group, send an email to: [EMAIL PROTECTED] c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 13 Date: Mon, 11 Oct 2004 18:31:23 -0000 From: "traceyincanada" <[EMAIL PROTECTED]> Subject: Re: transplant vs. Gleevec for a pediatric patient Hi Barb, Your decision won't be an easy one given your son's age. Some of us were in our twenties or early thirties when diagnosed so we also want to look beyond a 15 year survial rate. One thing I did want to point out though, is that while it's true in the past, survival rates for BMT's were better if the transplant occured within a year of diagnosis, it's unclear if that will continue to be the case with Gleevec. The old treatment of Interferon had long term effects on the body which influenced BMT survival rates so it was proven that the faster the patient had the transplant, and the shorter time they were exposed to Interferon, the better. This will likely change with Gleevec being the front line drug of choice since it's action is very different than Interferon. Another thought you may want to keep in mind is that the mini- transplants are usually reserved for weakened or elderly patients because while it's true that they are easier to survive, they also carry a higher rate of relapse so if the patient is strong enough and young enough to go through a regular BMT, doctors will usually advise to go that route. Many places now are taking the attitude that Gleevec should be front line treatment for at least 6 months to gauge progress and then the decision to proceed to BMT be evaluated in relation to the response received from Gleevec. Keep reading and researching and hopefully you will feel more confortable with either decision you make. Take care, Tracey dx Jan 2002 (age 31) 400mg Gleevec Feb 2002 CCR July 2002 PCR neg Nov 2002 --- In [EMAIL PROTECTED], Neddo Family <[EMAIL PROTECTED]> wrote: However, it does state that chances > of survival increase if the transplant is done within a year of > diagnosis. It also mentions Reduced Intensity Conditioning Allografts > (RIC) which is a marrow transplant with less intensive chemotherapy > beforehand. I am interested in information on this. I am trying to > gather up the pros and the cons for a transplant. Any input or other > research references would be greatly appreciated. I have been watching > the list since early Sept. and have learned a lot. > > Barb Neddo, > Eagle River, WI ________________________________________________________________________ ________________________________________________________________________ Message: 14 Date: Mon, 11 Oct 2004 18:36:51 -0000 From: "John M" <[EMAIL PROTECTED]> Subject: Re: Article on Cancer Cheryl-Anne, The article you posted in the file section is interesting. Do you know who wrote it? Thanks, John --- In [EMAIL PROTECTED], "Cheryl-Anne Simoneau" <[EMAIL PROTECTED]> wrote: > 1st off - Happy Thanksgiving to the Canadians on the list and Happy Columbus > Day to all the Americans on this list! > > I just uploaded a file from a news article that talks about the high cost of > cancer research. Some may think it has political undertones to it, but I do > not, I think it is good article with interesting information. I will not > accept any flack from anyone for uploading or posting this message > announcing it. There are only 95 people on the CMLTalk list and over 1700 > here, so I felt this article should be shared by us all. > > Dr. Druker is quoted a few times in the article and it is interesting to > hear what he has to say about cancer research. > > Have a great day - I am off on a hike to work off the turkey, stuffing and > cranberry maple sauce - yummy! Just think I am the lucky one that gets to > do this all over again in November! Better make that a long hike! > > Cheers, > Cheryl-Anne ________________________________________________________________________ ________________________________________________________________________ Message: 15 Date: Mon, 11 Oct 2004 18:59:15 -0000 From: "cher111376" <[EMAIL PROTECTED]> Subject: Re: Article on Cancer The article was written by Greg Barrett at www.salon.com which is a San Francisco web based news site. Cheers, Cheryl --- In [EMAIL PROTECTED], "John M" <[EMAIL PROTECTED]> wrote: > > Cheryl-Anne, > The article you posted in the file section is interesting. Do you > know who wrote it? > Thanks, > John > > > --- In [EMAIL PROTECTED], "Cheryl-Anne Simoneau" > <[EMAIL PROTECTED]> wrote: > > 1st off - Happy Thanksgiving to the Canadians on the list and > Happy Columbus > > Day to all the Americans on this list! > > > > I just uploaded a file from a news article that talks about the > high cost of > > cancer research. Some may think it has political undertones to > it, but I do > > not, I think it is good article with interesting information. I > will not > > accept any flack from anyone for uploading or posting this message > > announcing it. There are only 95 people on the CMLTalk list and > over 1700 > > here, so I felt this article should be shared by us all. > > > > Dr. Druker is quoted a few times in the article and it is > interesting to > > hear what he has to say about cancer research. > > > > Have a great day - I am off on a hike to work off the turkey, > stuffing and > > cranberry maple sauce - yummy! Just think I am the lucky one that > gets to > > do this all over again in November! Better make that a long hike! > > > > Cheers, > > Cheryl-Anne ________________________________________________________________________ ________________________________________________________________________ Message: 16 Date: Mon, 11 Oct 2004 12:30:59 -0700 (PDT) From: Ann Jessup <[EMAIL PROTECTED]> Subject: Recommended dosage of Gleevec Dan, My boyfriend (now fiance) was diagnosed with CML on June 30 of this year. He started 400mg of Gleevec on July 5. On August 16 we went for a consultation at MD Anderson in Houston. David's local onc. thought the docs at MDACC might recommend a higher dosage for him (like the 800mg you mentioned) but they did not. There wasn't even a mention of changing his current regimen. David has done well on 400mg. After just five weeks his white blood cells were back to normal. MDACC failed to send his FISH and PCR results to the local doc so we don't know those results. We are going to re-run those test when we go back to the doc on the 20th. Hopefully we will see a positive trend, if not complete cytogenetic remission. Just our experience regarding dosage amounts. Certainly we are not experts here! Best wishes to you. Ann J Birmingham, AL P.S. I am thrilled to report that David asked me to marry him on August 25 and I happily accepted. The wedding will be on May 7 of next year. We are moving on with our lives and our plans, despite CML! --------------------------------- Do you Yahoo!? vote.yahoo.com - Register online to vote today! [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 17 Date: Mon, 11 Oct 2004 16:20:13 -0500 From: "Rob" <[EMAIL PROTECTED]> Subject: Re: Recommended dosage of Gleevec Congratulations. Rob ----- Original Message ----- From: Ann Jessup P.S. I am thrilled to report that David asked me to marry him on August 25 and I happily accepted. The wedding will be on May 7 of next year. We are moving on with our lives and our plans, despite CML! [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 18 Date: Mon, 11 Oct 2004 21:21:25 -0000 From: "skink1100" <[EMAIL PROTECTED]> Subject: Re: Recommended dosage of Gleevec Thanks for the response...and congratulations on your engagement! Dan --- In [EMAIL PROTECTED], Ann Jessup <[EMAIL PROTECTED]> wrote: > Dan, > > My boyfriend (now fiance) was diagnosed with CML on June 30 of this year. He started 400mg of Gleevec on July 5. On August 16 we went for a consultation at MD Anderson in Houston. David's local onc. thought the docs at MDACC might recommend a higher dosage for him (like the 800mg you mentioned) but they did not. There wasn't even a mention of changing his current regimen. > > David has done well on 400mg. After just five weeks his white blood cells were back to normal. MDACC failed to send his FISH and PCR results to the local doc so we don't know those results. We are going to re-run those test when we go back to the doc on the 20th. Hopefully we will see a positive trend, if not complete cytogenetic remission. > > Just our experience regarding dosage amounts. Certainly we are not experts here! Best wishes to you. > > Ann J > Birmingham, AL > > P.S. I am thrilled to report that David asked me to marry him on August 25 and I happily accepted. The wedding will be on May 7 of next year. We are moving on with our lives and our plans, despite CML! > > > --------------------------------- > Do you Yahoo!? > vote.yahoo.com - Register online to vote today! ________________________________________________________________________ ________________________________________________________________________ Message: 19 Date: Mon, 11 Oct 2004 21:37:23 -0000 From: "kanneharless" <[EMAIL PROTECTED]> Subject: Re: transplant vs. Gleevec for a pediatric patient Dear Barb, Tracey brings up some good points with the lower intensity chemo regimen (mini transplant). I just want to point out that the low dose chemo is intended mostly for those older or sicker patients who may not withstand the fully ablative (full dose chemo plus radiation or bisulfan). There is greater risk of relapse with mini and there is still risk of GVHD with the mini which is a significant cause of mortality in transplant patients. I am not saying this at all to dissuade you from the transplant option. That is a very personal decision and you are doing the right thing by collecting all the data. Be sure you rely on good sources and get more than one opinion no matter which way you are leaning. My husband had a transplant due to Gleevec resistance. He has done very well and we consider ourselves extremely fortunate. Your decision is a difficult one. Have you sought a consult with a doc at OHSU (Druker or Mauro)? Perhaps it would be worthwhile to also get an opinion from a top-notch transplant center such as the Hutch in Seattle. Now that there are no blasts, you will want to watch the percentage of Philadelphia Chromosome in the marrow and peripheral blood. For my husband, the marrow was a better indicator of disease status than the peripheral blood, although for most people they correlate fairly well. Warmest regards, Kelly --- In [EMAIL PROTECTED], Neddo Family <[EMAIL PROTECTED]> wrote: > Hi all, > > My name is Barb and my son was dx 8/16/04. He is 15. He was diagnosed > while in the chronic phase. He is on 400 mg of Gleevec and takes it at > night with dinner. He shows few side effects - some knee pain but this > could be growing pains, low iron. His WBC count is down to "normal" and > there was no detectable Ph in his blood at last check (PCR). > > I know the Gleevec vs. transplant issue has been covered before, but I > am approaching it as a mother who wants to see her son live beyond 15 > more years. No one in the immediate family is a good marrow match (mom, > dad, sister). His onc. says to stick with the Gleevec and sent a > research article to back up her idea. Treatment of CML in Pediatric > Patients: Should Imatinib Mesylate (STI-571, Gleevec) or Allogeneic > Hematopoietic Cell Transplant Be Front-Line Therapy? (Pediatr Blood > Cancer 2004;43:523-533, http://www.interscience.wiley.com). This > research isn't conclusive for pediatric patients since there aren't a > lot of pediatric CML cases to study. However, it does state that chances > of survival increase if the transplant is done within a year of > diagnosis. It also mentions Reduced Intensity Conditioning Allografts > (RIC) which is a marrow transplant with less intensive chemotherapy > beforehand. I am interested in information on this. I am trying to > gather up the pros and the cons for a transplant. Any input or other > research references would be greatly appreciated. I have been watching > the list since early Sept. and have learned a lot. > > Barb Neddo, > Eagle River, WI ________________________________________________________________________ ________________________________________________________________________ Message: 20 Date: Mon, 11 Oct 2004 21:57:40 -0000 From: "mpetersen123" <[EMAIL PROTECTED]> Subject: Re: Recommended dosage of Gleevec --- In [EMAIL PROTECTED], Ann Jessup <[EMAIL PROTECTED]> wrote: > On August 16 we went for a consultation at MD Anderson in Houston. David's local onc. thought the docs at MDACC might recommend a higher dosage for him (like the 800mg you mentioned) but they did not. There wasn't even a mention of changing his current regimen. Interesting. This sort of confirms my belief that high dose Gleevec treatment in the newly diagnosed is no longer needed now that the BMS and AMN drugs are in trials. Last time I checked MDACC was still offering it as an option though (but I don't know if that is still the case). Here is a link that describes it: http://www.mdanderson.org/diseases/adultleukemia/display.cfm/? id=c4b9a717-ea3e-4cf4-b23b9c38ab10af42&method=displayfull&pn=033766c5- 832a-11d4-aec800508bdcce3a Incidentally, one other thing that I forgot to mention about the Kantarjian high dose IM study published in Blood magazine was that it was flawed because it wasn't truly randomized. It compared patients on high dose IM vs. the cohort of patients treated in the earlier Gleevec Stage II trials. A proper comparison should have been to compare the results of newly diagnosed patients on 400mg vs newly diagnosed patients on 800mg. Gleevec has proven itself to be even more effective in newly diagnosed than the earlier trials most likely because they haven't been treated with Interferon... ________________________________________________________________________ ________________________________________________________________________ Message: 21 Date: Mon, 11 Oct 2004 17:41:15 -0500 From: "jennifer g" <[EMAIL PROTECTED]> Subject: RE: Re: Recommended dosage of Gleevec Sorry, but I can't imagine that doctors are making decisions about treatment with Gleevec now based on *possibilities* for new drugs that are *years* away from market. That's a tremendous leap to make. And no patient should be doing that either right now. It would be simply foolish. jennifer g. ======================================= Get comprehensive information about CML: http://www.cmlsupport.com <http://www.cmlsupport.com/> ======================================= -----Original Message----- From: mpetersen123 [mailto:[EMAIL PROTECTED] Sent: Monday, October 11, 2004 3:58 PM To: [EMAIL PROTECTED] Subject: [CML] Re: Recommended dosage of Gleevec Interesting. This sort of confirms my belief that high dose Gleevec treatment in the newly diagnosed is no longer needed now that the BMS and AMN drugs are in trials. Last time I checked MDACC was still <snip> [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 22 Date: Mon, 11 Oct 2004 23:09:19 -0000 From: [EMAIL PROTECTED] Subject: Re: Bruising--and i don't know why thanks for responding---everyone. Dave--I get really cold too. I was in Arizona this weekend and I still wore a sweatshirt. Go figure. It does help to know I am not alone. T --- In [EMAIL PROTECTED], "David Schulz" <[EMAIL PROTECTED]> wrote: > I also bruise easily, but break the skin when I touch a sharp object. I > don't get a bruise. It takes a few weeks to heal ("Band-aid Man"). I think > the outer layer of skin does not work, since I am always freezing. Even a > slight draft or being in an air conditioned room feels cold on the skin. It > needs to be about 74 degrees for me to wear a short sleeved shirt. Platelets > are on the low side, but in the low range that the oncs like. Go figure. > Dave > > >From: [EMAIL PROTECTED] > >Reply-To: [EMAIL PROTECTED] > >To: [EMAIL PROTECTED] > >Subject: [CML] Bruising--and i don't know why > >Date: Fri, 08 Oct 2004 20:36:31 -0000 > > > > > >I just noticed that I have quite a few > >bruises. Very odd. > >Does anybody have any input? > > > > > > ________________________________________________________________________ ________________________________________________________________________ Message: 23 Date: Mon, 11 Oct 2004 23:31:27 -0000 From: "mpetersen123" <[EMAIL PROTECTED]> Subject: Re: Recommended dosage of Gleevec Jennifer, perhaps you should tell this to both my Onc. and Dr. Sawyers (neither of whom I would consider "foolish"). I specifically asked Dr. Sawyers about Gleevec high dose therapy in newly diagnosed when I consulted with him in May because that was the course of treatment I had started. He told me that he is not a fan of it and he told me, "rest assured that there is now a safety net if Gleevec fails". Recall that at the time a BMT was the only other option if someone fails Gleevec. That is no longer the case as the trials for both BMS and AMN are expanding and accepting anyone in blast crises phase. The point of my post is that the science behind high dose IM therapy in newly diagnosed has not been proven. It's certainly no more of a stretch for a patient to accept this course of treatment than it is for them to assume that an alternative to Gleevec is on the horizon... Cheers, Mark --- In [EMAIL PROTECTED], "jennifer g" <[EMAIL PROTECTED]> wrote: > Sorry, but I can't imagine that doctors are making decisions about > treatment with Gleevec now based on *possibilities* for new drugs that > are *years* away from market. That's a tremendous leap to make. And no > patient should be doing that either right now. It would be simply > foolish. > > jennifer g. > ======================================= > > > Get comprehensive information about CML: > > http://www.cmlsupport.com <http://www.cmlsupport.com/> > > ======================================= > > -----Original Message----- > From: mpetersen123 [mailto:[EMAIL PROTECTED] > Sent: Monday, October 11, 2004 3:58 PM > To: [EMAIL PROTECTED] > Subject: [CML] Re: Recommended dosage of Gleevec > > > > > Interesting. This sort of confirms my belief that high dose Gleevec > treatment in the newly diagnosed is no longer needed now that the BMS > and AMN drugs are in trials. Last time I checked MDACC was still > <snip> ________________________________________________________________________ ________________________________________________________________________ Message: 24 Date: Mon, 11 Oct 2004 12:39:51 -0700 (PDT) From: Dana Bonistalli <[EMAIL PROTECTED]> Subject: Re: Recommended dosage of Gleevec Ann and David, Congratulations! Both on the engagement and the wonderful response David has had to Gleevec. I wish you both much happiness!!! Dana Wife to John, dx 4/4/03 Ann Jessup <[EMAIL PROTECTED]> wrote: Dan, My boyfriend (now fiance) was diagnosed with CML on June 30 of this year. He started 400mg of Gleevec on July 5. On August 16 we went for a consultation at MD Anderson in Houston. David's local onc. thought the docs at MDACC might recommend a higher dosage for him (like the 800mg you mentioned) but they did not. There wasn't even a mention of changing his current regimen. David has done well on 400mg. After just five weeks his white blood cells were back to normal. MDACC failed to send his FISH and PCR results to the local doc so we don't know those results. We are going to re-run those test when we go back to the doc on the 20th. Hopefully we will see a positive trend, if not complete cytogenetic remission. Just our experience regarding dosage amounts. Certainly we are not experts here! Best wishes to you. Ann J Birmingham, AL P.S. I am thrilled to report that David asked me to marry him on August 25 and I happily accepted. The wedding will be on May 7 of next year. We are moving on with our lives and our plans, despite CML! --------------------------------- Do you Yahoo!? vote.yahoo.com - Register online to vote today! New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [EMAIL PROTECTED] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups SponsorADVERTISEMENT --------------------------------- Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ To unsubscribe from this group, send an email to: [EMAIL PROTECTED] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ Message: 25 Date: Mon, 11 Oct 2004 16:38:54 -0700 (PDT) From: Kathy Finnegan <[EMAIL PROTECTED]> Subject: Re: Re: Skin Bumps/Marty Hi Marty, Thanks for your response. 17 years post transplant & doing well -- wow! I am so very pleased for you. And your suggestion re Bag Balm is a winner! I had some in the house -- I think I bought it for dry hands some time ago -- well, I tried it on one shoulder last evening -- smeared it on good -- and on 1 eyebrow! -- and I've got to say, it helps. The treated sides are much improved -- and after just one application. Thank you! God bless you -- and best wishes always. love, Kathy wa2yyx1 <[EMAIL PROTECTED]> wrote: Hi My name is Marty, and I had CML almost seventeen years ago. Eventually I had a Bone Marrow Transplant, and have done well for all of these years, except for the dry skin and bumps. I had Total Body Irradiation, as well as high dose Chemothrapy, and do have a bit of GVHD. In all of this time I have tried just about everything to get rid of these particular skin problems but nothing really helped until I finally found something that did! You are not going to believe this but it is a product that is used on cow's utters when they are chapped or irritated. It can be purchased at any local farm or feed store and some pharmacy's carry it as well. BAG BALM, it comes in a small square green tin, not expensive at all, usually less then $5.00, and it really helpes me when I have any problems. It is like a thick yellowish Vasoline, and greasy as well, but it sure helps me. I used to use Kerri Lotion when I had my radiation and it sort of helped with the burns, but that was before I tried BAG BALM. The think about when you are receiving the radiation treatments you can not use any type of lotion or cream because it deflects the beam somewhat, so I had to wait until it was all over. If you ever need any help with any questions that you may have then please feel free to contact me at [EMAIL PROTECTED] GOD bless you. Marty New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [EMAIL PROTECTED] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups SponsorADVERTISEMENT --------------------------------- Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ To unsubscribe from this group, send an email to: [EMAIL PROTECTED] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. --------------------------------- Do you Yahoo!? vote.yahoo.com - Register online to vote today! [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. 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Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [EMAIL PROTECTED] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ <*> To unsubscribe from this group, send an email to: [EMAIL PROTECTED] <*> Your use of Yahoo! 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