Chronic Myelogenous Leukemia (CML) Support Group

I am glad that I could give you a little boost! The day I got my diagnosis (Jan 11, 1995), my (then) husband and I went out for Chinese food. My fortune said, "You will be the recipient of many awards." I snorted, "Yeah, posthumously." And then we laughed, and I've been laughing ever since, through divorce, treatments, side effects, jaundice, mouth ulcers, stem cell collections, platelet infusions, bone marrow biopsies--you name it. I understand that you must cry; I encourage you also to laugh. One other thing helped me so much, too. When I was diagnosed, an elderly woman in my church told me that she had lost her mother when she was 11 years old, and she took my hands and looked into my eyes and told me that she was and is all right, and that no matter what happens to me, my children will be all right. That gave me such comfort. Of course I did not want to leave them and I fought like hell not to, but something about her message stayed with me and allowed me to focus on whatever life I had left. I know it's hard in the beginning;you must believe that whatever happens to you, your children will be all right. Once I got past that hurdle--and it was a high one--I could stop grieving and start living. I did not take Gleevec because it was not available in 1995, so my choices were Interferon injections or a BMT. My sister was not a match for me and I decided against a donor match from the registry. The doctor told me flat out that I had a 10% chance of remission without a transplant, and after three years of therapy I went into remission. Had one small setback about nine years ago but I have been clear ever since. I just read an article about a 17 year survivor and I plan to beat his record! You hang in there!!

One more thing--I don't want to hog your list! You asked me about telling your children. I told mine right away, and they cried and were afraid, and I am glad that I told them. It's not like they won't know that something is wrong--they will. And it's okay for you to cry when you tell them. Just be sure to tell them that you are going to do your very best to be here for a good long time, and reassure them that there will always be someone to take care of them. Mine asked me if I was going to die, and I said that I would die eventually but I didn't know when and I didn't know of what, and that the important thing is that we live a full and loving life as long as we're here. They can understand a lot, even if they are small.

Thanks for the info. Just a question so you say for the past 9 years you have been in the clear, is that because you now take Gleevc or did you have a transplant? One other question, I am concerned that my insurance will meet its max out for the lifetime if I take theis medicine for several years. When I picked up the pills at the pharmacy it said my insurance paid 4,200 dollars for 30 pills. Do you have any ideas on a cheaper way to get the pills or do people go on disability when they get sick. I am not sick now nor do I wanna ever be but reading everyone's info seems like at sometime I might be. I am sorry I have so many questions but you are the only person that has responded and truley knows how it feels to get this same diagnosis.

Hi, I have signed on to this site but haven't used it really. I was in September 08, I have been on the gleevec my Dr told me it was expensive but I went to pick it up and they told me after my insurance my part was $1700 I thought she was talking about a year but she said no that is for one months worth I walked out of the thinking what am I going to do, I talked to the Dr office and they helped me get set up with help from Novartis to take care of what the insurance didn't cover. I am approved for a year and I will then have to reapply for the aid. I was scared of the side effects after reading on this site and I feel very lucky, I have had not side effects other than maybe a little fatigue (which I already have some, I have also had Addisons for 20 years which gives me some fatigue) I have not had nausea taking the pills. My WBC went down to low so the Dr cut my dose down to 300mg instead of 400mg. I am not sure what else I can tell you so if you have any questions please ask.

That's great the company helped you out. That's also great to know that you did not have any side effects. I guess the only other question I would have is how is the Gleevc working for you and have they discussed any other treatments like bone marrow transplant or other drugs right now? I think I have a millon questions for anyone that would listen or may have answers.LOL. I am very confused as to why us few get this and others don't? What did I do wrong and how can others prevent themselves from getting it. And no one can answer it those questions yet.

Hi, Krissy, I am happy to help you however I can. I am not on Gleevec, I was on it for about one month during my relapse a few years ago, but I had an allergic reaction to it, so essentially I have been on nothing for the last several years and the remission is still holding. There was some discussion about leaving me on a low dose of Interferon but that was not possible because of what it did to my cholesterol, triglycerides, and pancreas--big mess, more threatening than the cancer itself. Small world: my next door neighbor also has CML, could not tolerate Interferon so when Gleevec came out they put him on that and he is now in remission and taking a maintenance dose (whatever that is). I believe they intend to leave him on it for quite a while. I have no idea how expensive it is because I only took it for a month and can't remember. The Interferon was about $400 a month, but still, I have some insurance money left. As to that, I think you are getting waaaaay ahead of yourself. One day at a time, Krissy. You are here today, and okay, and tomorrow will bring what it will. I was very fortunate to have friends help our family financially and though it is hard to ask, if you have a best friend who is ringing her hands and not knowing what to do, ask her to help you in that regard. My friends were happy to solicit donations from the church and community and it helped so much--you will find that there are expenses other than medicine and maybe not working for a while. We travelled for clinical trials and consultations. No transplant, no Gleevec, just Interferon and a lot of prayers. I am currently enrolled in a clinical trial at the U of Maryland BMT program. They take CML patients currently in remission, harvest stem cells and save them in an ice cube tray (or wherever), and will do a transplant if and when I relapse again. When I was diagnosed, autologous transplants were not successful for CML patients since the marrow is the problem. But progress is being made in that regard. My first oncologist told me that we are all guinea pigs.:-( Hopefully something I have already been through will help you in some way. If you are not a computer geek, that is something else a friend can do for you: research!! Find clinical trials, read articles about treatment--you must be your own advocate, even if you have a wonderful doctor, as I do. Go to your appts armed with questions, and if your doc won't take time to answer them, move on. You and your doctor are a team now. You are definitely not alone! And things look more promising all the time!

Hi Krissy!

My name is Amy, and I was dx in October 08. I started on Gleevec on the 25th of Oct. and for me it has been a ride! I had extreme nausea, LOTS of joint pain, but within three weeks my blood counts were normal. I had additional bloodwork done Jan. 9th and 90% of the chromosome is gone. So it's working!! Everyone tolerates is differently, and as a nurse, I'm sure you know that. I have anxiety and panic attacks, and OMGosh, did I have such high anxiety with the dx!! I have three kids, (13,7 and soon to be 5) and I was worried that I wasn't going to be around. Not to mention I had only turned 30 in August. I kept thinking I was too young, why did this happen to me, OMGosh I'm going to die...etc. I lost my mom to breast cancer when I was 18, and it was devastating. I did not want my kids to go through that too. We sat down and had a family talk. I told them, we cried, but I promised them that I would do whatever I had to to be here. I wasn't sure what kind of leukemia I had, so we talked about me losing my hair, being tired, and other things. I told them we would go to a wig shop and they could each pick out a wig for me and name it, so whenever I wore that wig, I would be that person. LOL! They thought that was terrific! My middle son was a little disappointed when he found out I wasn't going to lose my hair! lol! He really wanted to get that wig. Here I'm thinking "Thanks for the support buddy...geez!" lol! I know my Dr. is keeping me on it for 10 years. They recently started to take pts. off of Gleevec, who've been on it for 10 years and there is an 83% effective rate for remission. So that's a good sign! Who knows what they'll find out in another five years! Trust me though, I have cried, thrown NUMEROUS pity parties, and have wanted to go hide somewhere. It's only been a couple of months, but sometimes I feel like I don't have CML, and other days I do. More of my energy is back, the joint pain finally went away (although it does sometimes come back if I exert myself for too long), and the nausea is okay. From what I've heard from others, sometimes the side effects go away, and then they come back for a while. So enjoy the time you get w/out the side effects! lol! Be gentle on yourself! That has been a hard one for me. I am so much more understanding when it comes to my family and friends. I sometimes forget to give that same understanding to myself! Someone sent me this link, and I'm posting it for you. I hope you find it useful!
http://aoic.net/cancersyspagesnb/t...
Good luck, and if you ever want to chat, I'm available!

Hi Krissy!

My name is Amy, and I was dx in October 08. I started on Gleevec on the 25th of Oct. and for me it has been a ride! I had extreme nausea, LOTS of joint pain, but within three weeks my blood counts were normal. I had additional bloodwork done Jan. 9th and 90% of the chromosome is gone. So it's working!! Everyone tolerates is differently, and as a nurse, I'm sure you know that. I have anxiety and panic attacks, and OMGosh, did I have such high anxiety with the dx!! I have three kids, (13,7 and soon to be 5) and I was worried that I wasn't going to be around. Not to mention I had only turned 30 in August. I kept thinking I was too young, why did this happen to me, OMGosh I'm going to die...etc. I lost my mom to breast cancer when I was 18, and it was devastating. I did not want my kids to go through that too. We sat down and had a family talk. I told them, we cried, but I promised them that I would do whatever I had to to be here. I wasn't sure what kind of leukemia I had, so we talked about me losing my hair, being tired, and other things. I told them we would go to a wig shop and they could each pick out a wig for me and name it, so whenever I wore that wig, I would be that person. LOL! They thought that was terrific! My middle son was a little disappointed when he found out I wasn't going to lose my hair! lol! He really wanted to get that wig. Here I'm thinking "Thanks for the support buddy...geez!" lol! I know my Dr. is keeping me on it for 10 years. They recently started to take pts. off of Gleevec, who've been on it for 10 years and there is an 83% effective rate for remission. So that's a good sign! Who knows what they'll find out in another five years! Trust me though, I have cried, thrown NUMEROUS pity parties, and have wanted to go hide somewhere. It's only been a couple of months, but sometimes I feel like I don't have CML, and other days I do. More of my energy is back, the joint pain finally went away (although it does sometimes come back if I exert myself for too long), and the nausea is okay. From what I've heard from others, sometimes the side effects go away, and then they come back for a while. So enjoy the time you get w/out the side effects! lol! Be gentle on yourself! That has been a hard one for me. I am so much more understanding when it comes to my family and friends. I sometimes forget to give that same understanding to myself! Someone sent me this link, and I'm posting it for you. I hope you find it useful!
http://aoic.net/cancersyspagesnb/t...
Good luck, and if you ever want to chat, I'm available!

Hi again Krissy, the Gleevec is working good for me, my Dr is very happy with the results. I started out with my white count over 100,000 and I am now down about 6,000 I did get to low and and he cut my dose down to 300mg right now I am getting blood tests once a month, I started every week for about 6 or 7 weeks then every two weeks for a month or two and I am now at once a month. My numbers are staying pretty steady now, I am just a little anemic but not enough that the dr thinks I need to do anything about. I go in again on the 24th and at some point the blood tests will go to every three months and then 6 months but I think they will stay at every six months. I did have some joint pain for awhile I forgot about that, I think I walked a little funny for awhile because of the dull ache but that has gone away.
My Dr told me that it is rare to do a transplant for CML and that he thinks I will just need to stay on the Gleevec forever and should have a fairly normal life.
Don't try to think what you did wrong to cause this, I was told it is not genetic but they don't know what causes it. You didn't do anything wrong don't get yourself down trying to figure what caused this. Just take each day as it comes.
When I first got diagnosed and got on this site it really depressed me to read all the side effects people have and I did not get on very much since then, I think it is good to get support but you have to be carfeful to not get yourself down. I have only read on here until yesterday when I saw your questions and just felt that I need to get more involved on here.
Well I think I have written enough for this time, I hope some of this can help you.

Hi Everyone , This is the first time that I have actually added a reply to an entry, although I do read the updates regularly. I am coming up on the 5 year anniversary of my diagnosis. I was 50 years old with a wonderful husband and 3 incredible kids. Like the rest of you - telling my children was the hardest thing I have ever done. We survived it, infact, oddly enough, it brought us all even closer. My original wbc was 140,000. A total shock, I was feeling great, just went in for a regular check up. I went on gleevec immediatly and my counts dropped to normal in less than 3 months and have remained normal since. I consider myself very blessed. I have never experienced any real side effects from the meds except, sometimes mild indigestion. My advice is to take your pill with LOTS of carbs.. I take it midday with a big lunch, and have had very little trouble. Like you the pricetag for the pills scared me to death. We have Bluecross Blueshield with the federal government, so I was able to mailorder the meds for about $35 dollars every 3 months. Once again I feel very blessed. My heart truly goes out to those of you that are so young with very young children. Please let me tell you that you will survive this, and support groups like these are a blessing. Shortly after my diagnosis, I found a book entitled My So-Called Normal Life by Erin Zammett. She was 23 when she first discovered she had cml. So following her journey helped me with mine. She worked for Glamour Magazine and started a daily blog about her experiences, also a great find. She has been on gleevec longer than me. She has gotten married and even went off the gleevec, for a while, to have a beautiful healthy baby. Life will go on. God Bless