[CMLHope] Re: Live at ASCO
Cheryl-Anne, I'm driving to Chicago on the 17th, I have a BMB on the 18th at Northwestern Memorial Hosp. Will stay in the area for a week so the wife can see her grand kids. Will drive back to Springfield, MO. on the 20th. I used to live in Crown Point, IN. Greenie **Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. (http://food.aol.com/tyler-florence?video=4?&NCID=aolfod000302) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Pat's Numbers Rising
Pat, May 28 is a bad day for me and a good day for me. My x-wife's birthday is on May 28th and my Son from my present wife is on May 28th. 365 days in a year and he's born on here birthday. I need to play the Lotto. I just had to get that off my chest. greenie **Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. (http://food.aol.com/tyler-florence?video=4?&NCID=aolfod000302) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Pat's Numbers Rising
Wow Pat that's an email! I'm speechless... So much stress!!! Its a wonder you are upright and typing! The amazing baptism and hope at the end is also a wonderful beginning. Losing people to cancer or anything sucks. However they are moved on to a new adventure and pain free. Its a new day for each of us and I so admire your bravery and honesty! Lots of hugs and love, Rhonda Sent from my Verizon Wireless BlackBerry -Original Message- From: pat reynolds <[EMAIL PROTECTED]> Date: Mon, 2 Jun 2008 13:47:05 To:CMLHope@googlegroups.com Subject: [CMLHope] Pat's Numbers Rising Thanks for all the responses giving me appetite ideas. Some of them I have tried. I have asked my doctor for marinol, I have been on marinol once back 3 years ago when I was seeing a different doctor. Let me tell you this story. When I got the marinol filled and started taking it, it had no effect on my appetite whatsoever. I kept taking it, even taking more than one pill at a time, just out of desperation. Still no hunger. Well, my husband was looking at the bottle, and just happened to notice that is was 5 months out of date, of course by this time I had taken most of the bottle. Just my luck. When I explained this to my (then) doctor he would not give me a refillwhy I will never know. I wasn't very happy with my lifelong pharmist and asked him to please call my doctor which he did but it did no good. He even faxed in for a refill. Needless to say I did not get it again. Even after changing doctors, my first one left for Michigan, I could not get him to give it to me. I talked to the pharamist this morning and he has persuaded me to try the peractin but I am going to take it during the day rather than at night so I can be monitored and see if I notice any side effects. I do not want to take it at bedtime at first. So please say a prayer for me that it works and does not add to my endless side effects. I am not ashamed to mention to the group that if I had a supply of weed I would eat everything I could get my hands on. I believe and I am a activist for legalizing marijuana for medical purposes. I do smoke occasionally when someone shares with me. It is not something I can afford to purchase and plus the fear of trying to get it since it is illegal is just not worth it to me. I do have problems smoking it as I have emphysema, but that part is worth the sacrifice because I can really eat up all I can find...but that is a rare occasion, not daily. I have also been under a tremendous amount of terrible stress this past month, so that might be playing a part in it. I lost 2 friends on Mother's Day due to cancer, and I must tell you that both these women were let to die by their insurance companies. The doctors did not listen to them for long periods of time, and then had to fight with the HMO's to get approval, one of them finally did and ran tests but it was too late. The other woman had needed a hystercomty , and her insurance would not ok it. Her parents spent their life savings, mortaged their home to get it done, she went thru chemo but it was too late by that time. I did 2 funerals in one day. I literally passed out at my girl Chasity visitation. She was only 29 and so beautiful and left behind her 10 year old son. Her mother and I had been friends for years and Chasity was like a daughter to me. I also had never ending issues with my son which involved him getting out of jail after 5 months, going back shortly after he got out for 5 days and is back in now for 30 daysand still has pending charges in upstairs court which may lead to prison time. I also had some issues myself in court, first time ever. My daughter's best friend of 11 years had gotten on drugs really bad and literally had a 58 yr old man just feeding it to her. We went to this man's house to try to get her away from there, and ended up getting arrested for trespassing, and a broken window which we were not guilty of that. I had never been in trouble before in my life or arrested so it was a terrifying experience and I did stress it a lot. We did not have to plead guilty to anything, it was dismissed on payment of court costs and restitution for a window we did not break...$350 that I just didn't have to spare. I could have fought it in trial but just wanted to end it as soon as possible. The most heartbreaking part of it was my daughter's friend signed as a witness on the complaint. However, when we found out what drug she was using, I immediately told my daughter she could not associate with her, and I would not allow my grandson to be around it so she was striking back at us. She had come to me before, and we took her in our home, and she got clean and got a job and then she relasped, left my house on a Friday, blew her whole check and never came back except to get her clothes. So she too is bringing a lot of stress on us as she is in jail for almost a year for drug related charges.
[CMLHope] Live at ASCO
Hello All, Arrived in Chicago rather late in the day, traveling was difficult due to bad weather conditions. This is my first time at ASCO, which is very patient friendly. The idea is to see how the patient tracks work and hopefully see if we can speak to ASH about making ASH more friendly to patients. There is a very good session on CML later this afternoon. Please check out the highlights and info later today here and at the CML Society Website: www.cmlsociety.org Cheers to all, Cheryl-Anne --~--~-~--~~~---~--~~ [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] Pat's Numbers Rising
Thanks for all the responses giving me appetite ideas. Some of them I have tried. I have asked my doctor for marinol, I have been on marinol once back 3 years ago when I was seeing a different doctor. Let me tell you this story. When I got the marinol filled and started taking it, it had no effect on my appetite whatsoever. I kept taking it, even taking more than one pill at a time, just out of desperation. Still no hunger. Well, my husband was looking at the bottle, and just happened to notice that is was 5 months out of date, of course by this time I had taken most of the bottle. Just my luck. When I explained this to my (then) doctor he would not give me a refillwhy I will never know. I wasn't very happy with my lifelong pharmist and asked him to please call my doctor which he did but it did no good. He even faxed in for a refill. Needless to say I did not get it again. Even after changing doctors, my first one left for Michigan, I could not get him to give it to me. I talked to the pharamist this morning and he has persuaded me to try the peractin but I am going to take it during the day rather than at night so I can be monitored and see if I notice any side effects. I do not want to take it at bedtime at first. So please say a prayer for me that it works and does not add to my endless side effects. I am not ashamed to mention to the group that if I had a supply of weed I would eat everything I could get my hands on. I believe and I am a activist for legalizing marijuana for medical purposes. I do smoke occasionally when someone shares with me. It is not something I can afford to purchase and plus the fear of trying to get it since it is illegal is just not worth it to me. I do have problems smoking it as I have emphysema, but that part is worth the sacrifice because I can really eat up all I can find...but that is a rare occasion, not daily. I have also been under a tremendous amount of terrible stress this past month, so that might be playing a part in it. I lost 2 friends on Mother's Day due to cancer, and I must tell you that both these women were let to die by their insurance companies. The doctors did not listen to them for long periods of time, and then had to fight with the HMO's to get approval, one of them finally did and ran tests but it was too late. The other woman had needed a hystercomty , and her insurance would not ok it. Her parents spent their life savings, mortaged their home to get it done, she went thru chemo but it was too late by that time. I did 2 funerals in one day. I literally passed out at my girl Chasity visitation. She was only 29 and so beautiful and left behind her 10 year old son. Her mother and I had been friends for years and Chasity was like a daughter to me. I also had never ending issues with my son which involved him getting out of jail after 5 months, going back shortly after he got out for 5 days and is back in now for 30 daysand still has pending charges in upstairs court which may lead to prison time. I also had some issues myself in court, first time ever. My daughter's best friend of 11 years had gotten on drugs really bad and literally had a 58 yr old man just feeding it to her. We went to this man's house to try to get her away from there, and ended up getting arrested for trespassing, and a broken window which we were not guilty of that. I had never been in trouble before in my life or arrested so it was a terrifying experience and I did stress it a lot. We did not have to plead guilty to anything, it was dismissed on payment of court costs and restitution for a window we did not break...$350 that I just didn't have to spare. I could have fought it in trial but just wanted to end it as soon as possible. The most heartbreaking part of it was my daughter's friend signed as a witness on the complaint. However, when we found out what drug she was using, I immediately told my daughter she could not associate with her, and I would not allow my grandson to be around it so she was striking back at us. She had come to me before, and we took her in our home, and she got clean and got a job and then she relasped, left my house on a Friday, blew her whole check and never came back except to get her clothes. So she too is bringing a lot of stress on us as she is in jail for almost a year for drug related charges. She lost 4 beautiful children, which her mother is now raising. So it has been a stressful month. But I still don't have a appetite and never have since starting Gleevec but it is just getting harder for me to force food down. Sorry to ramble on, but I guess I just needed to vent. Thank you for being there for me to do so. Please keep me in your prayers and thanks for the suggestions which some I will try. On a good note, my daughter and I were baptized on the same night, May 28th. I had been baptized at the age of 13 but felt perhaps I did not understand all I needed to. It was
[CMLHope] Re: depression
Hi Kelly, I'm so glad you're feeling better. I think keeping busy is the key. I have a hobby; genealogy. I use to love to garden, but these old knees just can't take it anymore. Yes, we all have to find our own way. What works for one might not work for someone else. We are in a fight for our lives, and let's keep on fighting the good fight. Love and blessings, Jeanie<3 In a message dated 6/2/2008 3:41:37 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: Thank you Jeanie for your advice. Actually, I am going into my second good week and feel more positive and hopeful. I have been writing poetry to get through the rough spots and that seems to help. I do need to get back on the fish oil. I bought flowers to plant yesterday and my husband rototilled the garden so I can get started on that (garden is imperative with the rising cost of gas and subsequent cost of food). I also have a rock garden with a waterfall that I need to get up and running - that area of the yard provides me with a lot of peace and serenity. I put that in when they thought my granddaughter had melanoma - I was just sick with worry and putting that garden in made a huge difference. It is now my "memory" garden and family/ friends have given me "special" rocks and seashells to add to it - as well as plants from their yards. My religious belief is that all religions are "right." Hence, I have a wide range of belief systems and do not subscribe to any one specific religion. I have studied many and found "truth" in every one and also things I do not agree with - so, I pick out what feels "right" to me and ignore the things that don't feel "right." To each his own. I do read "Daily Word" and feel that positive affirmations are important. Too bad those affirmations do little for me when I'm in the pit. But, I am trending upwards! I hope to maintain that trend by doing the things I love. Thank you so much for your blessings, prayers and love, Kelly **Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. (http://food.aol.com/tyler-florence?video=4?&NCID=aolfod000302) --~--~-~--~~~---~--~~ [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] depression
Thank you Jeanie for your advice. Actually, I am going into my second good week and feel more positive and hopeful. I have been writing poetry to get through the rough spots and that seems to help. I do need to get back on the fish oil. I bought flowers to plant yesterday and my husband rototilled the garden so I can get started on that (garden is imperative with the rising cost of gas and subsequent cost of food). I also have a rock garden with a waterfall that I need to get up and running - that area of the yard provides me with a lot of peace and serenity. I put that in when they thought my granddaughter had melanoma - I was just sick with worry and putting that garden in made a huge difference. It is now my "memory" garden and family/ friends have given me "special" rocks and seashells to add to it - as well as plants from their yards. My religious belief is that all religions are "right." Hence, I have a wide range of belief systems and do not subscribe to any one specific religion. I have studied many and found "truth" in every one and also things I do not agree with - so, I pick out what feels "right" to me and ignore the things that don't feel "right." To each his own. I do read "Daily Word" and feel that positive affirmations are important. Too bad those affirmations do little for me when I'm in the pit. But, I am trending upwards! I hope to maintain that trend by doing the things I love. Thank you so much for your blessings, prayers and love, Kelly --~--~-~--~~~---~--~~ [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] Nausea
Pat, For what it is worth, I tried taking Gleevec (600 mg) with my meals but got severe stomach aches leading to nausea on a regular basis. So I switched to taking it right before bedtime and I sleep thru the nausea. This has been my successful time to take Gleevec and I've been doing it this way for the last 4 years. From the very few times that I didn't fall asleep or woke up soon after taking it I can tell you that the nausea comes on about 45 - 60 minutes after taking it. Hope this helps, Rory dx Feb. 2004 In clinical remission --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: to Pat Numbers Rising
Jeanie: You have made my day after reading this, I'm still smiling over the "KILL, KILL, KILL"!!! That is just hilariousI will think of this every time I take my Gleevec from now on. (smile) I am sorry to all for not posting very much lately, but I have been reading them. I've been so busy trying to help get my mother settled from Florida up here to Missouri. We just returned after spending two weeks down there getting her house ready to put on the real estate market (which it finally is) plus going through some of her things and discarding & then boxing up what she wanted to keep. I told her she had way to many "doo-dads" and she laughed and said "You're a fine one to be talking". I told her that I got it from her. (smile) Anyway, I drove the whole way back after doing all the packing the car by myself. I don't trust mom lifting stuff or what not for fear she'll fall and break something (she's had one ankle broken twice and her wrist broken last fall). Needless to say after the trip, I've been exhausted and trying to "catch" up on rest. I don't think anyone without some type of blood disorder understands the fatigue..as my brother came in yesterday and asked what I was doing and I just said something about maybe taking a nap & he snapped and said "that's all you've been doing since you've come home!" They think since you are taking this "wonder" drug that works and keeps you in remission, you ought to be just "fine & dandy" 100% of the time. And, not only the fatigue from the CML, but the Gleevec causes fatigue, too. I can't make my family understand this. They think that you should be up and at it every single day like you were in the military or something. I think this is what bothers me the most..the fatigue. I haven't had any vomiting or nausea in a long while.I do have bouts of "queasiness" and I just fight it out. I've been taking all 400mgs. of my Gleevec at once after lunch &usually I will pray when it goes down that it "stays down" (smile). I was breaking it in half and taking it like that...sometimes I will still do that if I don't eat enough. The peanut butter and cracker works great as does cottage cheese and fruit. I have found, Pat, that Biscuits & Gravy work for me when I have no appetite. Sometimes, that's all I want (smile). And, your doctor leaves a lot to be desired as far as I am concerned and I would be finding a different one if I was not happy with him. And, for all of you mentioning the "weed" for medicinal purposes, I see nothing wrong with using it for something that works. I'm not a drinker either, but use whiskey when I am sick with cough or cold as do others that I know. People learn to use what works for them. Well, I need to get going now. Just wanted to say "hello" to all and let you know that I am still here & still enjoying hearing from everyone. Zavie, I love your pictures so much & thank you for posting them. And, Greenie, this is some Missouri weather we are having, isn't it? Love, Suzieq --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to 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 -~--~~~~--~~--~--~---
