[CMLHope] visiting Allentown, PA
Dear CML Friends, I haven't posted in an age. But I do check every day to see what folks are saying and doing. Cheryl-Anne Simoneau will visit her sister in Whitehall, PA,(next to Allentown) for the Thanksgiving holiday. Cheryl-Anne and I will get together on Friday, the day after Thanksgiving. We haven't set a time yet. I have to plan around a lunch date with our home-from-college nephew. Since he doesn't wake at the crack of dawn I'm thinking to meet for coffee anytime between 9 am & 11:30 am. Another option would be late afternoon, say 3 or 4 pm. I will leave that determination up to Cheryl-Anne. So it's an open invitation to anyone who can meet us in Allentown. Please email me privately to give me your contact information. We'll pick a spot that's easy to find but not cluttered with Black Friday shoppers. Hope Cheryl-Anne and I will have company. Best regards, Ruth Marcon -- -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] NY Times OHSU ad
See the NY Times Sunday edition for May 11, 2014, for a 2-page ad placed by OHSU (Oregon Health & Science University. Druker is here.) Message: CANCER DOESN'T NEED ANOTHER RIBBON. IT NEEDS ANOTHER CURE. In case you don't find it, here is the text: At OHSU, we take a different approach to fighting cancer. We revolutionized the treatment of chronic myeloid leukemia with Gleevec. For hundreds of thousands of people, CML is no longer a death sentence. That's one cancer down. (Bold type) Cancer doesn't need more awareness. It needs more Gleevecs. We are going after cancer as aggressively as it goes after us. And because time is of the essence, Nike cofounder Phil Knight and his wife, Penny, have pledged $500 million if we can raise a matching route. Help us make cancer the victim. onedown.org Nancy Chando and I went to NYC in Jan. or Feb. to hear him speak: "The Cure for Cancer Is within Reach.) The talk was at the 92nd Street Y. We arrived, checked in at the main desk, and made our way through a couple of security guys. We were surprised that Drucker would need that. But then found out security was for Chelsea Handler. Didn't get to see her. My memory has faded regarding what he said. But talk was shaped by "Where we were, where we are, and where we're going. All is hopeful. New drugs in the pipeline and the promise of the genome to yield significant information for research. Nancy and I met a woman in the audience and sat 3 across with her. She had cml and was in remission. When it was time for questions I raised my hand and told Drucker that we were 3 people in remission from cml & that we were forever grateful and appreciative. And said we would like to shake his hand--and maybe hug and kiss him. We got resounding applause for our remission. We introduced ourselves to him after the lecture and had pictures taken with him. We didn't hug or kiss him. He was modest and unassuming, not formal or aloof. It was so satisfying to meet him. We felt lucky and privileged. My best regards to everyone. Hope you are well, or soon will be. Ruth Marcon -- -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] for Janet Hansen
Good to hear from you, Janet. And I remember the Fall Ball well. It was early in my cml life. And it was so wonderful to meet everyone--Zavi and Ida brought us all together. I haven't been in touch with any of the Fall Ball folks. I maintain some connection to the Spring Fling group that met in Treasure Island, FL, not too long after the Fall Ball. Hope we can stay in touch now. Would love to know if you hear from anyone from those good old days. Stay Well. Ruth -- -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Dr. Druker in NYC on March 4th
Hi All--If you can get to NYC on March 4th, Brian Druker is speaking at the 92nd Street Y at 7 pm. I live in Allentown, PA, so just an easy 2-hr. bus trip for me. If anyone can go we can make plans to meet beforehand & sit together. I think the Web site is 92y.org. But, not matter. You can pull it up easily. Tkts. are $22 or so. All is well on my side. Hope true for most if not all. Best regards, Ruth Marcon -- -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] for Millie
Hi Millie--Noticed in your message to Marty that you live close to me. I'm in Allentown. Sorry to miss your Wed. trip. Please e-mail me privately. I'll can give you my phone number & we'll try to meet. Looking forward to hearing from you. Ruth Marcon -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Dr. Mauro's talk 4-17-11
**Be your own advocate. **Be part of a cml community. **Find a cml expert, even for consultations. **Lab should use international scale. **Need more people in trials. Thinks drs. must do a better job educating people about trials. **Risk for relapse, toxicity or failure to achieve ccr is in the 1st 3 yrs. of taking a cml drug. **Fit the drug to the patient. All drugs are options. In the 1st 3-4 years want the drug that brings effects sooner. **Do not miss more that 3 doses per month. **Split dosages have not been tested & therefore are not recommended. **Over time, they are seeing less relapse & shift out of chronic phase. **Drs. are not ready to take people with long-term remission off gleevec as protocol. **Ponatinib: Ariad trial now in phase 2. Showing promising results in cml patients who lost their response or failed 2-3 drugs. **QT prolongation---my note here is incomplete because I didn't write down what QT stands for. Will probably feel really dumb when one of you says what it means. Mauro ended his presentation with a quote by Oscar Wilde: "I have the simplest of tastes. I am always satisfied with the best." I think I covered his bases. These drs. are amazing. Lucky for us. Ruth Marcon -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] leukemia & heredity
Hi Dorothy, Nice to see your post on the heredity topic. And as always, I appreciate your input. I'm doing well and trust you are, too. September marks my 10th year of remission. I still remember that my dr. called me on Sept. 4th to tell me the news. When I answered the phone he asked, "How is the person who had leukemia?" Wonderful words. I said I was surprised he called so soon after my blood work was done. And he said, "Good news should not wait a moment to be told." Trusting that you are doing well, also. Sorry I didn't get to Charlotte this year. I always enjoyed getting together. Take care. Ruth -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] leukemia & heredity
After I read the replies from Pat Elliott and Suzie Q I realized I needed to clarify my reason for going to a geneticist. It wasn't because of the family history of leukemia, but because of breast cancer history. My sister had breast cancer. I had the test for BRCA 1 and BRCA 2 , and the result was negative. As I recall, the geneticist was interested only in the medical history of my parents and siblings. Aunts, uncles, and cousins didn't seem to matter. I think I had this test about 3 yrs. ago. (About 4 years ago I joined The Sister Study. The study follows the sister of a sister who had breast cancer. It's a 10-year study, partly government funded. The study is a questionnaire that asks for medical history, and health, exercise, and dietary habits. The questionnaire is updated periodically.) Re the interview on Patient Power, I'll be sure to watch it myself. And I will pass it along to my brother. When 1st diagnosed he said he didn't want to read anything about MGUS. Whatever the dr. told him was enough. Now, about 6 months after dx, he is receptive to new information about MGUS and myeloma. So thank you, Pat, and thank you, Suzie Q, for your help and understanding. My best to you, Ruth Marcon -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] leukemia and heredity
Hi All--I think the question of heredity and leukemia in families is intriguing. There was a lot of cancer on my dad's side of the family. My dad's mother and 2 of his sisters had leukemia. My dad had cll. My sister & one cousin have cll. And my brother was recently diagnose with MGUS, a possible precursor to myeloma. When I saw a geneticist & asked him about heredity & leukemia, his answer was "We have no evidence at this time." So he left it open. But it's hard to believe there isn't some physiological connection when you see more than one occurrence in a family. Ruth Marcon -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Norma Beidleman
To All--Don't know how, but I forgot to name Susan Carrow as part of the Spring Fling group. I know Susan mentioned it her post. I'm sorry that I left her out of the list in my post. I think she'll forgive me. We're going to talk this week. Regards, Ruth Marcon -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Norma Beidleman
Dear Group--I was lucky enough to know Norma. She was a warm & friendly person, and she had a good sense of humor. I think Gina said that first. I met Norma on our "Spring Fling" to Treasure Island, FL. I believe Shelley, Lynne, Angie, Dorothy, Dawn & Capt. Bob, and Dane all attended. Hope I didn't forget anyone. It was the first time many of us had met. We were instant friends. We could talk about cml & have immediate understanding, sympathy, and compassion. One evening Dawn invited us(the women) to see a production of Beauty and the Beast. Angie and I went with Dawn. The others, including Norma, said they would go to dinner. When Angie & I got back to the apartment everyone was there. We asked what they did while we were gone. There was silence. Then they burst out laughing--and said they stayed in the apartment and talked about their problems. It was a great moment. At a later date, Dorothy & I met Norma & Gina in Chicago. Another fun and special time. Norma is someone to remember--a loyal and caring friend. Regards, Ruth Marcon -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Druker in Smithsonian Magazine
The May 2011 issue of Smithsonian Magazine features Dr. Druker & the cml research. Named in the article are cmlers Susan McNamara, Jerry Mayfield, and Jane Graham. The magazine Web site is smithsonian.com It's a great article. Hope you get to see it. Ruth Marcon -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] leukemia drug pioneer bio
To All Last week's(5/9) crossword puzzle in the Sunday NY Times had the theme "Ms. Conceptions." The theme within the puzzle was "Mothers of Invention." So--one of the clues was "Medical discovery of Gertrude Elion (1918-1999). Answer: drug for leukemia (I solved this puzzle--over a 4-day period.) Never heard of her so looked her up. Fascinating life of commitment and achievement. Developed a drug in 1951 to treat acute leukemia in children. Developed many other important drugs along with George Hitchings. They were awarded the Nobel Prize for Medicine in 1988. Hope you'll take a look. Ruth Marcon -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] for Judy and Margot
Hi Judy, Yes, I do remeber everyone from the Niagara Falls group. Nice to hear from you & Margot, too. I think I posted that I recently visited with Dorothy Emery from the original Spring Fling gathering. Also heard from Angie Esders not too long ago. I'm doing well. On 400mg Gleevec daily. In remission since Sept. '01. Thank you all for your concern about my son-in-law Charles. We spoke with him on Sun. He's tired and his mood, understandably, is low. Buffalo is about 4 hrs. from his home in Binghamton so there will be few visitors. And he's someone who needs to see people. When I had my sct in June 2000 I was lucky to be in NYC, only 2 hrs. from home. So I had frequent company & also had 1 daughter & 2 cousins living in the city. I wrote to Cathy Kramer. She knows the marrow registries & ins & outs. Her husband, Jeff, had cml & was cured with interferon. Cathy gave me helpful sites and suggestions for navigating the system that I can pass to Liza. I'm calling my Dr. Schuster tomorrow to talk with his bmt coordenator. Am always open to sound advice. And my sincere thanks for everyone's concern and good wishes. Ruth Marcon --~--~-~--~~~---~--~~ [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] to Jeannie re accelerated phase
Dear Jeannie, I too am sorry to hear that your status changed. It's a frightening thing but there are treatment options and I wish you the very best response. My son-in-law Charles was diagnosed with cml 2+ yrs. ago. Just this week he was told his cml changed to aml. He lives in Bingamton, NY, and was admitted today to a hospital in Buffalo and will begin 4 wks. of chemo. I will relay info as I get it from my daughter. I hope your fears will soon be in retreat. My best regards, Ruth Marcon --~--~-~--~~~---~--~~ [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] for Barb in AZ
Dear Barb, All was beautifully phrased. Congratulations and many more years of health and happiness. Best regards, Ruth Marcon --~--~-~--~~~---~--~~ [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] anniversary
To All It's been a long time since I posted--a sign that I am feeling "normal" now that I am 8 years from my cml diagnosis. I still subscribe to the lists and enjoy seeing the names of the oldies and "meeting" the newbies. I was diagnosed in the Spring of 2000 at age 57; had a mini sct that failed to bring remission; started Gleevec in November 2000; reached remission in September 2001. It took till my second year of remission to feel true relief. After reaching remission I still worried "What if it comes back?" I always thought this at bedtime & then had trouble falling asleep (even though I took ativan & ambien for a year). Then one night--for whatever reason--when I asked myself that same question, the answer was "If it comes back they'll do something about it." And so they have for those who cannot respond to Gleevec. Who could have imagined that the research would produce more options for treatment and better outcomes for sct's? The list was a lifeline for me in the beginning of my illness. And these many years later it remains a source of comfort and encouragement. No one needs to suffer in silence or be scared all their waking hours. My anniversary celebration: The Spring of 2001 I began marking my diagnosis by passing out carnations to family and friends, to vendors at the Farmers' Market, to the women at the coffee shop & at the bookstore where I get my NY Times. It makes us all happy & grateful that we've all marked another year. And it's a joy for me. I would love to hear from the first Spring Fling group and from the Niagara Falls group. If any one of you is reading this, please write me at [EMAIL PROTECTED] I hope that this note will be a source of hope for those not in remission and a confirmation for those who are. Please withhold any praise for me--I did what I was told & was lucky that the chemistry worked for me. There were lots of times I didn't have a great attitude & I can still be my gloomy self more than several days a year. I probably shouldn't end with this sentence, but that's my reality. Some people share that reality and some don't. But we are all joined by adversity and understand each others' frustrations and fears, sorrows and joys. We are in community. And that is a wondrous thing. My very best regards to those of you who know and to those who don't Ruth Marcon Allentow, PA --~--~-~--~~~---~--~~ [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] cll for Trey
Dear Trey, I've not done research on cll. But my father had it in his late 50's--1976. The treatment was no treatment. I have a sister, a cousin and a friend who have cll. My sister & friend receive no treatment as their protocol. But my cousin has been having iv chemo. Am in contact only with my sister in recent months. Will attempt to reach my cousin & friend to see what their status is. I've been meaning to call my cousin for weeks, so it's time that I do. When my dad died at age 59, the cause was lung cancer. The cll was under control. He never had treatment for the cll. Regards, Ruth Marcon --~--~-~--~~~---~--~~ [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] for Angie
Dear Angie, I'm stunned to hear of your recent ordeal! Hope it won't be too long before you can feel some normalcy & less fatigue. I may have lost your e-mail address. So would you please send it when you have a chance. And please do it at your convenience. Keep taking care of yourself My warmest regards, Ruth --~--~-~--~~~---~--~~ [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] bmt article from Zavie
Dear Zavie, I followed the link that you gave on the Mauro article assessing bmt's and noticed that it's dated 2003. Is there a recent update by this group? And do studies break down for differences in age & phase of the disease? I think you know that I had a mini allo(sibling match, no radiation, less toxic chemo) in July 2000 when I was 57. I was in good health & weathered it well. But it didn't give me remission/the cure. The percentage of leukemic cells was reduced to 20% from 100%. After a dli also failed I went on Gleevec(Phase III STI trial) in Nov. 2000 & reached remission August 2001. All has been well since then. My anxiety level lessened dramatically at remission date. But I think it took another year or more till I felt 'normal' again. I chose to have the bmt because I had a sibling match & because I was basically healthy. I also didn't want to wonder about what might have been. It's hard to know what I would do if I were diagnosed today at 57 or what I would do if I were much younger. The landscape is different today with the success of gleevec & other promising drugs. No matter what, our challenge is the same: to make an informed decision. Easy for me to say, now that I am comfortable & secure in my remission. But there is greater hope now than ever before; and the science just keeps getting better. And I have benefited from people like you on the list who share what they know with care and concern. It was also a great comfort to meet you and other cml-ers in the early days of Gleevec. I have priceless memories from our Niagara Falls gathering and from the Spring Flings in Florida. My warmest regards always Ruth --~--~-~--~~~---~--~~ [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] adult stem cells
I was amazed at the list of illnesses that have been treated with adult stem cells. Where could I find the documentation for these treatments? I'm serious. I'd really like to know. Ruth Marcon --~--~-~--~~~---~--~~ [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] retina problem
Someone posted about retina problems & "leaking." I saw my ophthalmologist recently & she noticed changes in my retina and mentioned the possiblility of leaking. She referred me to a retina specialist & I have an appt. on April 25. I'll report back after that. Regards to All Ruth Marcon --~--~-~--~~~---~--~~ [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] NY Times Op-Ed pages
Don't know if this was already mentioned: Last Sunday's edition of the NY Times had 2 pages of cancer-related articles. Date is April 1, 2007, pages 12 & 13. All the articles are of interest. The one titled "The Smart-Pill Solution" devotes a paragraph to Gleevec: "the first smart anti-cancer pill." Since I need a tutorial in how to send links you're on your own... Best regards, Ruth --~--~-~--~~~---~--~~ [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] INNO 406 trial
Does anyone know of someone in the INNO 406 trial? My friend Priscilla Kuster is at Anderson in her 1st week of the trial. She's having lots of EKG's & started the drug as a split dose--so she's on 120 mg twice a day. A different trial has people taking 240 mg once a day. Priscilla would like to hear about others who are on the trial & their experiences. I'll report on her progress as things proceed. Thanks Ruth Marcon --~--~-~--~~~---~--~~ [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] Ed Bradley NY Times article
To All I found the Ed Bradley article in the Friday, Nov. 10th issue of the NY Times. The article starts on the front page & is then continued in the B section. It quotes his dr. as saying Bradley had leukemia 'many years ago.' "...but it had not posed a threat to his life until recently, when he was overtaken by an infection." Don't know if there's anything else about his illness in the rest of the article since I can't find the B section... Ruth Marcon --~--~-~--~~~---~--~~ [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] Ed Bradley
I read that Ed Bradley had CLL. But I can't remember for how long. Article was in the NY Times. Ruth Marcon --~--~-~--~~~---~--~~ [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] bmt's
Dear Group, I haven't posted lately. But I feel I must respond to the great fear re bmt's. The decision is not one that anyone takes lightly--doctors included. Transplant is still an option worthy of consideration. Transplant procedures are improving. There's ongoing research to reduce the effects of gvhd & to lower the toxicity of the chemo. I'm not saying jump at the chance to have one. It's one thing to be afraid of having a bmt--it's another to be afraid of the discussion. My dr. is a cml specialist & head of the bmt unit at NY Presby. Hospital (Cornell-Weill). When I had my sct in July 2000, Gleevec was still in trial & I wasn't eligible. My brother was a match. I decided to go ahead for a few reasons: a) Gleevec was not an option b) I had a 'perfect' match c) I was basically healthy d) I didn't want to wonder 'what if...' I was 57 so had no radiation & less intense chemo because of the jump in mortality rate over 50. I did well overall with some dramatic short-lived physical reactions. The glitch was that there was no 'cure.' My brother's cells rose only to 30%. A susequent dli had no effect. But the % of ph+ cells went from 100% to 20%. It was a dramatic route to the Gleevec trial. And it was frightening. I started 600mg in Nov. '00 and reached remission by Aug. '01. I celebrate on Labor Day(US). Am now on 400mg. & stay in remission. (Gleevec was approved in May '01.) Each summer since 2000 my dr., his colleagues, & the hospital(and to be honest, Amgen in the past; not sure of their participation in '06) sponsor the 'Transplant Cruise'---lunch & dj on a boat up the Hudson River for patients, their families & friends. And each year the success stories grow. My understanding is that the statistics re mortality rates are for all cases, even the most dire. Perhaps someone here knows if the #'s are broken down according to age, stage of disease, type of disease, etc. I know that we have lost people on this list who have had bmt's. I am in no way minimizing their lives. I think we honor them by being as informed as we can be. And though we compare ourselves to others, each one's circustances are unique. So we're left deciding for ourselves as to what is the best option. This is all a long way of saying: be informed & know your options. A question re terminology: When to use bmt vs. sct? My understanding is that all transplants are sct's because stem cells are harvested either from bone marrow or from peripheral blood. So bmt seems to now be technically inaccurate but still widely used. Do the drs. use the terms interchangeablly? If anyone wants to e-mail me personally, I'm at [EMAIL PROTECTED] Best regards to all Ruth Marcon --~--~-~--~~~---~--~~ [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] For Germaine re 2nd opinion
Dear Germaine, Since my cml dx(Mar. '00) I decided I would have a 2nd opinion for a hangnail. I had a 2nd opinion & found it invaluable. Re Dr. Druker: Some time ago I researched clinical trials for a friend. I called Druker's office & explained the situation to the woman who answered the phone. These were her kind words said in a compassionate tone of voice: "Dr. Druker will see anyone with cml." Don't be afraid to seek a 2nd opinion. It's an important & reasonable & intelligent course of action. Best of luck Ruth Marcon --~--~-~--~~~---~--~~ [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] New York BMT Cruise
To All Sunday, August 6th was the 7th annual cruise on the Hudson River, with a buffet lunch & a deejay, to celebrate life. The boat was bigger & the attendance the largest to date--more than 300 people--bmt patients joined by family & friends. Dr. Michael Schuster, head of the bmt program at NY Presbyterian/Cornell-Weil, announced that there were 120 people aboard who had transplants. He asked us if we could pick them out of the crowd--no one could. He spoke briefly about new drugs for cml & the progress being made in reducing the effects of gvhd. The horizon is bright & promising. On the 2001 cruise I met Eleanor & George Soos. When Eleanor was diagnosed in '99, she was told to 'get her affairs in order.' Then she got to Dr. Schuster & she joined the Gleevec trial. She's alive & well. Has some fatigue but her life is rich & normal. So each year Eleanor & I meet; we phone each other a couple of times a year. It's a lovely 'consequence' of having cml in common. Another lovely consequence was seeing Cathy & Jeff Kramer; this was their 1st cruise. We 'met' on the list & arranged a lunch meeting with a couple of other cml'ers a about 5 years ago. Cathy works for one of the donor registries(I don't have my notes or I'd tell you which one.) Jeff is in remission, having been on interferon. He's also been off medication for about 3 yrs.--if I'm remembering correctly. Jeff was on interferon before Gleevec was approved; his dr. kept him on it because his response was good, though he did have some unpleasant side effects. So we see our old friends & meet some new ones. Seeing the nurses is always fun. They're so happy to see us. There are hugs & how-are-you's. It's a fabulous feeling. We all leave happy. Very best regards Ruth Marcon --~--~-~--~~~---~--~~ [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] BMS trial for Anjana
Dear Anjana, Thank you for replying to my question re the bms trial. I'll pass the info along to my friend Priscilla. I'll post again after she returns from Anderson. Ciao Ruth --~--~-~--~~~---~--~~ [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] questions re trials & son-in-law with cml
To anyone with up-to-date info on trials: My friend Priscilla had to stop the bms trial because she had to go on coumadin. She's been off medicine for 3 mos. She's still in remission but the percentage of PH has increased & is expected to gradually increase over time. She knows of other trials & will be going back to MD Anderson in 2 weeks. So can you give some help as to what questions she could/should ask about SKI 606 (in phase 2) INNO 406 (in phase 1) AMN Thanks for any info & insights here. Now for the truth-is-stranger-than-fiction dept.: My son-in-law was diagnosed with cml 2 wks. ago!! It was found on a routine check for his diabetes. His wbc was at 45 & he's started on 400 mg of Gleevec. He & my daughter aren't as scared as they could be because of my experience. I'm 6 yrs. from dx & 5 yrs. in remission. So hoping my luck will rub off on him. It should. Am going on the 6th annual(my 5th) BMT cruise on the Hudson this Sunday. Will meet up with Cathy & Jeff Kramer at this event. It's a happy time. Will report back next week. Ciao Ruth Marcon --~--~-~--~~~---~--~~ [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] cure magazine
Has anyone been getting the magazine cure: cancer updates, research & education? I've received about 3 issues to date. It's free for cancer patients, survivors & caregivers. The articles are interesting & well-written. The Website: www.curetoday.com Cover price is $4.99 us & $6.99 can, so it seems like a good deal. Cheers Ruth --~--~-~--~~~---~--~~ [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] for Ana re rash
Dear Ana, I was in NY on the 13th for a regular check-up. I've been on Gleevec for just over 5 yrs. One of the questions my dr. asked was did I have any rashes. And one of my friends had a rash as a reaction to Gleevec. So maybe it's Gleevec, maybe it isn't. My personal philosophy is that it never hurts to ask around and/or ask the dr. Best of luck Ruth Marcon --~--~-~--~~~---~--~~ [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] for Barb Stanley
Dear Barb I was struck by the item in your post that noted your mom had CLL. My dad had that also. It's an interesting coincidence. Not to be grim, but there was so much cance in my dad's family--a sister had CLL & another sister & probably his mother had acute leukemias. Family histories are fascinating. Glad I'm surviving mine. And thanks for all your helpful references. Let me add Hamilton Jordan's hopeful book 'There's No Such Thing as a Bad Day.' Best regards Ruth Marcon --~--~-~--~~~---~--~~ [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] second opinion/Drucker
Dear Lori, I think seeing Drucker is a great idea. About 1 yr. ago I did some research for a friend who was 'allergic' to Gleevec. I called all around looking for a BMS trial for her. At the time, only MD Anderson had one up & running. (She's in the trial.) One of the calls I made was to Drucker's office. I explained the situation to the person who answered the phone. The kind, female voice said, "Dr. Drucker will see anyone with cml." I think I'd run, not walk, to see him. Best of luck, Ruth Marcon --~--~-~--~~~---~--~~ [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] for Gayle re NYC cml specialist
Dear Gayle, I've been seeing Dr. Michael Schuster at NY Presbyterian/Cornell-Weill(68th & York) since being diagnosed in March '00. I love him & trust him. Let me know if you would like his #. Best regards, Ruth Marcon --~--~-~--~~~---~--~~ [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] for Sandy Johnson re transplant after 50
Dear Sandy---My cml dx was March '00. I was 57 & am now 62. I had what they call a 'mini-transplant': no radiation & less toxic chemo. I think the current practice still is to not radiate on patients 50 & over because of the increased mortality rate. My transplant in June '00 went well. But it only reduced the # of leukemic cells--from 100% to 20%. By Nov. '00 I went on Gleevec because my brother's cells reached only 30%. Even though my transplant didn't achieve remission, I'm not sorry that I had it. They get better & better at doing this stuff. I agree with everyone else about researching. You've got time to do it & more information makes you feel better. It's all scary but the anxiety level might go down a notch. Please write me if you would like to talk with me & I'll give you my phone #. Best regards Ruth Marcon [EMAIL PROTECTED] --~--~-~--~~~---~--~~ [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] for Tena re transplant
Dear Tena---I live in Allentown, PA & see Dr. Michael Schuster in NYC. He is a cml specialist at NY Presbyterian Hospital/Cornell located at 68th & York. Also in NY is Sloan Kettering. In fact, the 2 hospitals are in the same area. Other choices would be Penn in Phila & John Hopkins in Baltimore. All are places with fine reputations. I personally have had success in asking for referrals from the dr. I first consulted with. A good question to ask in place of 'What would you do if I were your mother' is 'What would you do if you were me'? (Grammatically it should be ..if you were I... but we rarely say that. I was an English major.) I recently had elective surgery on my ankle. I had 3 consults & chose the 3rd dr. I saw. I strongly recommend 2nd & 3rd opinions if you are able to do that. I had a transplant in July '05. It helped me but didn't get me 'the cure.' I'm now in remission since Sept. '01, having gone on Gleevec in Nov. '05. I was 57 when I had my transplant so I did not have radiation. Big difference between me & your son. For me, it was worth trying. When weighing my decision I was advised to ask about the statistics for my age group & status of the disease. The mortality rate is impacted by those varialbes. I would be happy to talk with you. If you would like to talk, e-mail me privately for my phone #. You've got time to do the research needed to make the decision that is best for your son. My best regards Ruth Marcon [EMAIL PROTECTED]
