CancerCompass message board discussion started by Frank W. on 10/15/2002 http://www.cancercompass.com/message-board/message/all,610,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been in remission for a year and went through 3 chemo treatments. I am still worried about future. Any information on this subject would be deeply appreciated. Frank W. Tue, 15 Oct 2002 00:00:00 GMT Hi, My name is Bobbie. AML? I think that is in the same group of disorders that my husband has. He has Myelofibrosis (bone marrow) if this is correct, please write, I'm very interested. He takes Gleevec and Thalidomide. Bobbie Y. Sat, 19 Oct 2002 00:00:00 GMT Dear Bobbie, Thanks for writing but my cancer (though bone marrow related) is a blood cancer and not the same as your husbands. I wish him all the luck in the world with his and hope he recovers. Tell him and you to to pray and have faith - it helped me get through some rough times. I'll pray for him also. BEST OF LUCK. May he do as well as I did. Frank W. Frank W. Sun, 20 Oct 2002 00:00:00 GMT Hi. The meds you mentioned are used for CML. Another type of leukemia. My best wishes, Paulette Paulette G. Sat, 02 Nov 2002 00:00:00 GMT From March of 2001 to October of 2001, I had 4 rounds of chemo for AML. Up until the 3rd of October, I was in remission. Then I begun feeling bad again and finally had the BMB. Confirmed I am out of remission. Now the game plan is chemo until a donor is found for a BMT. I am looking for alternatives. Hope to hear from you in the near future. Best wishes, Paulette Paulette G. Sat, 02 Nov 2002 00:00:00 GMT Paulette sorry to hear you are out of remissiom. I go for BMB tomorrow nov. 4th. It will be a year since I've had one and am very nervous about the outcome. Hope you get a donor. Please feel free to get in touch with me anytime. Sometimes it helps to talk about it. GOD BLESS YOU You'll be in my prayers, Frank Frank W. Sun, 03 Nov 2002 00:00:00 GMT Hi, My mother is the one with AML. She is in her first relapse right now. She was diagnosed in April 2002. She was able to do her induction therapy and 3 consolidation therapies until her marrow never recovered. Her platelets never raised above 74 to do a 4th. She was diagnosed on Feb 6, 2003 with a relapse. Unfortunately Mom doesn't want to know anything and believe that her Dr.'s know everything and can do no wrong. He was also the one that told her the entire last 6 months that she had beaten this and was going to be fine. Please don't take offense to my anger towards him. Paulette, she seems to be in the same position as you, waiting for a donor. I have taken the burden of knowing everything I possibly can about the disease. Sometimes I don't think the Dr.'s like me knowing as much as I do but since Mom doesn't want to I feel someone needs to question them. Frank, should you still be looking for answers feel free to contact me and I will do my best to guide you in the right direction. Best of wishes to both of you. Sincerely, Lori M. Lori M. Thu, 27 Feb 2003 00:00:00 GMT My wife is a three year survivor oct 25 ,very scary we try to take things one day at a time ,she is going through a lot more than me Im a caregiver and a husband to her but she has ups and downs try to stay positive do what you can for exercise and eat right and the sky is the limit there are some very encouraging and awesome stories out there and some scary ones hang in ther you are doing it!I know a friend of my dads a male who also had a tranplant over five years ago he exercises a lot and seems to be just like he was before but my wife has not been as active very important as hard as it may be do what you can every day hang in there and when feeling down try to think of something pleasant to get yopur mind off that stuff it does not help. Spider32 Mon, 12 Jul 2004 00:00:00 GMT I don't know much about this one because my wife had a bmt but I wish we had an opportunity to look at this the issels treatment check it out on the net Spider32 Mon, 12 Jul 2004 00:00:00 GMT I know the feeling lori I am a caregiver for my wife check out the issel treatment on the net don't know much about it but if my wife hadn't allready had a bmt I would be looking into this more ,they have been pretty helpful with other questions I have had on chronic graft versus host a side effect of the bmt . Spider32 Mon, 12 Jul 2004 00:00:00 GMT My son started treatments for AMML July 23rd, 2001 the same day as his baptism. He was almost 29 yrs old at the time, father of a 2 1/2 yr old girl and a 17 day old boy. Joe's positive strength & drive, wonderful doctors and nurses, supportive family members, unwaivering faith and prayer have all been important factors of his survival. He has gone on in his construction job continuing to work hard! Yes, he has checkups all the time and I always hold my breath and pray. It is such a thrill to hear of long term survivors! Now, I am going to go look up this issel treatment that you wrote about, thank you! I've never heard of it... Marsha M. Thu, 29 Jul 2004 00:00:00 GMT Hi Frank W. Be sure to look at message #11 - this AML survivor is my son. I hope you're doing well! Marsha Marsha M. Thu, 29 Jul 2004 00:00:00 GMT I know nothing about it either wish I could have checked it out before the BMT. Just be careful and talk to your doctor. I would like to know more. Also, let me know, I am also wondering about anyone experiencing chronic graft versus host? Spider32 Thu, 12 Aug 2004 00:00:00 GMT Hi Marsha M. I am very happy for your son. He is very blessed. I was diagnosed with AML in August of 2001 at the age of 32 and I had a heart attack the very same day due to a very low blood count. It was devastating. All I knew how to do was pray. Thank God I am healed of Leukemia and my heart is fine. I am very blessed to be alive and healed. I went into complete remission last January and had my stem cells harvested in February. After that I went into maint. therapy for a year (low-dose pill form chemotherapy). As of Decemeber 2003 I am off of all meds. The power of prayer! God is good! I'll pray for you and your son. Isaiah 53:5, always read it and pray. May God bless you and your family. Are you and your family participating in the Leukemia and Lymphoma Sociey's Light The Night Walk this year? Take care. April J. Tue, 31 Aug 2004 00:00:00 GMT Hi Frank W. God bless you. I am a Leukemia and survivor also. I had three rounds of chemotherapy for AML, and a year of maint. therapy. It's only natural to have anxiety about the future, I know I still do at times. I just pray. God will take care of you and everything will be alright. Are you participating in the Leukemia and Lymphoma Society's Light The Night Walk this year? I would like to hear more from you. Chat with you later. April J. Tue, 31 Aug 2004 00:00:00 GMT On Dec 3, 2004 I woke up with horrible aches in my back and my legs that could only be described as the after effects of preseason training with my basketball team. The pain, however, was worse then any type of sore muscle I have ever felt. After suffering for days I went to the doctor and was rushed to the ER without a diagnosis or even any clue what was going on I was rushed up to the city to a bigger, more advanced hospital. After 2 weeks of being heavily sedated to the point of unconsciousness, in tremendous pain- that I could somehow still feel- and visits from a countless amount of doctors, they decided I had cancer. Another 2 weeks went by without me eating, getting any better, or even any answers to our questions, and they finally diagnosed me. They said I was the 15th person in the world to ever have this type of cancer. It was a rare lymphoma and along with that I had a tumor the entire size of my stomach that was attached to my right ovary. Survival was looking good...and they had no answers for anything, no protocol, no clue what to do. I looked around the room at all these doctors and asked if I would live. They each took a turn assuring me they would do all they could, but nothing was promising, nor did anything look good. The last doctor, a new resident, young, and even attractive :) looked at me and promised me we would beat it. It was unbelievable. One day I was sitting on top of the world, a million friends, totally in love with the man of my dreams, a 3 time state championship winner, soccer standout, and totally in love with life...the next day I'm sitting there begging God to let me live. That week my room never had less then 20 people in it, the waiting room down the hall was filled at all times with about 30 people all there to support me. I was put on prayer chains in every country in the world. My info was sent to doctors around the world and my body was starting to slowly die. I remained on crazy amounts of meds, painkillers, morphine, and then they tried some type of chemo they weren't even sure would ever work. A few days after I finished the first round of chemo (about a month and a half into this whole thing-never being allowed out of my small room) the doctor that made me my promise walked into my room smiling. One of the best doctors in the nation had sent back my work. No longer was I number 15, the diagnosis was wrong! The tumor in my stomach caused everything to point to the odd cancer, but it was really AML with the rare tumor and not only that, the tumor had shrunk 50% of its original size!!! It is still an incredibly rare cancer, but at least we can't count the amount of people on our hands and feet. I just finished my second round of chemo and Monday I go to find out about the removal of my tumor and when I will get my bone marrow transplant. People say prayer doesn't work... explain who saved my life then. God answers prayers and is letting me fight for my life. I went from not being able to lift my head off a pillow and today I sit on this computer after a night of bowling and playing pool with my friends! Thank God for everything and no matter what happens, no matter how bad it gets FIGHT FIGHT FIGHT and NEVER GIVE UP. I turned 20 Monday and I made a promise to my best friend that not only were we going to Vegas for my 21st, but that everyday I wake up I will not only realize, but be thankful to God that I am a step closer to my recovery. I found something to live for, something to wakeup for every morning, and I know how bad it can get.and it gets BAD...but hold your head up, be POSITIVE (that is all my chemo dr says to me) and PRAY PRAY PRAY.it does more than anything thing else. Babyoney Sat, 26 Feb 2005 00:00:00 GMT did you ever find out anymore on that?Hope all is well merry christmas and happy holidays to all, one day at a time! Spider32 Fri, 23 Dec 2005 00:00:00 GMT hi frank i need your help .I'm 17 and was diagnosed with aml on 09/25/06 i have gone threw 1 chemo but i need some info on other treatments and what you do what to expect Flick_liz06 Sat, 30 Sep 2006 00:00:00 GMT Here is one of the best reviews on Leukemia I have found (select printer friendly and print it out) http://www.lef.org/protocols/cancer/leukemia_01.htm You should look into supplements which can support your treatment plan. Please research Curcumin http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed and green tea extract http://www.eurekalert.org/pub_releases/2004-03/mc-mcr033104.php Dad1215 Mon, 16 Oct 2006 00:00:00 GMT i am a caregiver for my husband. he has had AML for 1 yr as of march 3, 2006. he went through 8 sessions of chemo a shot every week plus blood transphusions every two weeks. nothing worked. he is now with Osyessy home health care. It was not soppose to go this way but God has his reasons. I try not ask, i just pray. good luck we are pray for u, kaye Peifferbackkaye Sun, 21 Jan 2007 00:00:00 GMT  On 1/21/2007 Peifferbackkaye wrote:i am a caregiver for my husband. he has had AML for 1 yr as of march 3, 2006. he went through 8 sessions of chemo a shot every week plus blood transphusions every two weeks. nothing worked. he is now with Osyessy home health care. It was not soppose to go this way but God has his reasons. I try not ask, i just pray. good luck we are pray for u, kayeKaye, I am very sorry about your husband.  My father-in-law was diagnosed with Myelodyspastic Leukemia about 7 months ago.  Today, they called the family in.  He is now in acute leukemia and not expected to survive much longer.  They said he will probably go into a coma and they eventually pass on.  I have so many questions.  Will he suffer being the number one.  My children, 14 & 11, will visit him tomorrow and this will probably be the last time they talk to him.  My questions are how will he pass?  Bre67357 Thu, 19 Apr 2007 00:00:00 GMT thank u for your response to my letter, sinc then he has gotten worse. just sleeps and they  have him on a large dosage of morphin now. hi sleeps a lot. i got diognose with mylo something, witch is bone cancer. it can not not be cured no chemo or radiation. just lots of prayers right now i have phnmonia, got over night, scared my husband todeath. thought i thought i was going to die got a shot and good meds and pain pills and doing better and trying to convence my husband i will be ok...... its been hard. just pray for us. and thank u Peifferbackkaye Thu, 19 Apr 2007 00:00:00 GMT i haqve mylofribosis-bone cancer and ther is no cure, i hate to break the ice on this, just lots of prayer and i do beleive prayer, good luck and we can pray for each other and stay in contack, kaye Peifferbackkaye Thu, 19 Apr 2007 00:00:00 GMT Hi. My wife got AML 2 years ago. (July 2006). Has done bone marrow transplant. (around 9 months ago..or November 2007. But, around 3 months ago (May 2007), the doctor told us that her AML cell come back. After that, she has done 2 chemotherapies. But now the doctor said, the cancer cell still alives in her bone marrow. How could this happen?How to find the best treatment for her? My wife is being cured in a Singaporean Hospital Sony please reply also to my email: --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- SonyR Tue, 12 Aug 2008 00:00:00 GMT AVEMAR is highly recommended by my medical doctor for his cancer patients. Please read the information here:http://www.avemar.com/library_press.php You can go to the contact page for avemar http://www.avemar.co.za/framework/contact.asp and ask them for the research results for your particular type of cancer. Best of luck to all. Shemay Tue, 12 Aug 2008 00:00:00 GMT  On 8/12/2008 SonyR wrote:Hi. My wife got AML 2 years ago. (July 2006). Has done bone marrow transplant. (around 9 months ago..or November 2007. But, around 3 months ago (May 2007), the doctor told us that her AML cell come back. After that, she has done 2 chemotherapies. But now the doctor said, the cancer cell still alives in her bone marrow. How could this happen?How to find the best treatment for her? My wife is being cured in a Singaporean Hospital Sony please reply also to my email: --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- The doctor recommende CLOFARABINE, anybody has experience with this treatment for AML? Thank youSony SonyR Wed, 13 Aug 2008 00:00:00 GMT