YOU CAN SURVIVE WITH CML

CML or Chronic Myelogenous Leukemia is something that you do not want to have, but it is treatable. Sharing your experiences with others can make all the difference in the world as to how you will live with this disease.
I am an 11 year survivor without a Bone Marrow Transplant. Would like to encourage anyone who especially has just been diagnosed and not knowing what to expect.

Edited September 7, 2009 at 1:23 pm

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Hello Sue,

I have AML Leukemia and had a stem cell transplant in Dec of 08. The symptoms are so close between CML and AML. My brother was my donor. The doctors told me the same thing it is not curable but treatable. God Bless that you have been in remission 11 yrs. My counts are still low mostly due to the medications I must take so I do not get Graf versus Host Disease. I go weekly for hemoglobin IV treatments. The doctors want the range to be 10-12 mg, however, the blood level has not gone past 9.3. The doctors want me to start taking a shot every two weeks to boost my hemoglobin level. It takes 4 to 6 weeks to kick in while still taking my treatments. We are still waiting for the medical insurance co. to approve the shot. I never really had any of the symptoms. What I had was stabbing pain in my shoulder blade plus chills. It turned out the Leukemia had given me an infection which collasped my lung thus giving me pneumonia. Without checking this out, I might have died as AML grows rapidly. It hasn't been an easy year. I have suffered too many infections plus I now have CMV and Vertigo. I was diagnosed early last Sept. I am in a high risk category as I am missing a chromsome #5.

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Hi: I started this discussion, because someone told me about this website, but they did not see much on Leukemia. Even with your problems, you are holding your own. That is fantastic. I had no symptoms, except I was tired all the time. My job was very hectic, and I just kept blaming it on the job.
I just went for my routine blood work, and my WBC was slightly elevated. They repeated it, and it went up a little bit more. My primary doctor told me to see the Oncologist who I was working for. He immediately scheduled the BMB for me, and there it was CML.
I started out with Interferon treatments, but they were destroying my liver.
I was on Hydrea for awhile, until we could see what I was going to do. I went all over the place for consults on a transplant. Every doctor told me I was not a good candidate. I had no sibling match. Just then they were doing the clinical trials in NY for STI-571, which is now Gleevec. I have been on Gleevec 400mg. since Oct. 2000, and went into a hematological remission by July of 2001, and then into remission with no cancer cells at the present. I am PCRU now.
I am glad I started this conversation. You can contact me anytime. There is so much help out there now for Leukemia Treatments. God Bless You

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Hi Sue,
Actually you are correct. There are not too many folks on this support site that has had a stem cell transplant for Leukemia. There is a section on this site for Leukemia/Lymphoma/Myloma. Are you in the correct group? I met a nice gal who has been in remission with Leukemia for 7 years. She never had a stem cell transplant. While I was in the hospital last week, I met a man who said he tried this site and had the same issues. He is now on the Leukemia /Lymphoma site. I will see him again on Sept 15 and ask him to give me the address. He went back to work. I can't work. What is PCRU? I just do not know all the terminology. Now my husband said that our doctor told us this disease is curable. I don't believe that. What I believe is your CML is curable and treatable. Is it hard for you to be on Gleevec 400 mg? Do you take this as a pill or IV treatment?. Do you go weekly or monthly? Are there bad side effects? How is your liver now? Every doctor said you were not a good candidate for a transplant. You were in your early 50's? I go to Robert Wood Johnson University Hospital and they told me right from the start I needed the transplant. AML is acute where CML is Chronic. Acute is rare which I have been told.

The other reason I am on this site is I have Sarcoidosis too in my lung. There are over 5,000 members with this disease. Plus I have Asthma too. May I ask is your hair all grown back in now? I am starting my 9th month and my hair has grown back down my neck and sides except for the top of my crown. I am going to my hairdresser to ask her to shape it up. I have hardly anything up top which saddens me and my entire hair is so thin. I remember my hair used to grow so fast within 3 weeks. Those days are gone. I am still wearing a wig which I happen to like the color and cut. I went from being a blonde to having brown hair. I was reading about AML yesterday and probably dying my hair all these years certainly did not help. My niece lives in the same town as you.

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Hi: I just checked further, and if you click on Topics, then you will see many other Leukemia patients postings. I did not see it when I started my discussion,therefore, my topic is in with all the others.
I will have to read them, and see if I can answer some of them with my progress.
Let me see if I can cover some of your questions to me. I never lost my hair, as a matter of fact the Gleevec caused my poker straight hair to get curly. It also got thicker. PCRU is when you get tested, and they do not see any cancer cells in your blood. They check Millions of cells.
I did go to the Cancer Institute at Robert Wood, and saw a Dr. Strair, if I am spelling it correct. That was back in 1999. Then I saw a Dr. Goldberg in Hackensack at Hackensack Hospital, and then when Gleevec was in trial, everyone decided I should try that first. Like I said I had no match for a transplant, and nobody thought my chances would be good with my other medical issues, and a unrelated donor.
It is a 400mg. pill that I take everyday. It does have side effects, but its been worth it. Fatigue, joint pain, weight gain, cramping in legs and feet severely, eyebleeds ( I get a rupture inside the eye and it fills with blood all around the white of the eye) I have only gotten a few in all this time. You do nothing for it, but just wait for it to clear up. It is very ugly though. Everybody experiences different side effects. Some have lost their hair. I did lose my eyelashes, which were so tiny anyhow.
If you had not found your Leukemia at the Chronic Stage you can go into AML, and some just get hit with the AML.
Are you in total remission now since your transplant, and how does that missing Chromosome effect you? If I missed any of your questions, please ask again.
You can go onto Leukemia & Lymphoma Society, and get into their discussion boards which is L&L Community. Then you just scroll down to Living with AML, and you can talk to others who are going through what you have.
As for a cure, they still have not found one. They say they are very close to finding one. Since they found out what causes it in the first place,which they did not know for years they have so much to work with. I would love to see it happen in our lifetime.
Take Care
Sue

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Hi Sue,
I have been in the community boards at L&L and there isn't much discussion for Leukemia. Mainly Lymphoma. No I am not in total remission. In fact I am in Dr. Straier's group and seen by Dr. Gharibo. It takes 3 years to be in total remission. I thought it was only a year. Everyday I learn something new. They caught my cancer very early. The missing chromsome can grow back at any time undetected. So my last bone marrow biopsy was June 29th. I will have my 10th one in December. I lost count. It could be my 11th. The lab takes an additional 3 more days to check for the hidden cells. My chances of getting a relapse of cancer is only 50%. So I pray allot. Statistics say it will come back within 5 years or sooner. My intitution tells me it will be sooner. I was also told I could not be able to have a second transplant as my body could not handle it. Having extra chemo for another 6 months just to keep me alive to me is not worth it when I have to struggle with all the bad side effects. It will be just my time to go. I have come to terms with this. You know I have always exercised, never smoked a day in my life, ate a good nutritious diet and due to back luck I got cancer. Yes I have floaters now that I didn't have before. I know floaters comes with age too. The medications I must take also has bad side effects. I think my system is finally getting used to them. I still get cramping in my stomach, tire easily, some diarrhea and nausea. Living with side effects becomes part of you in order to keep us alive. I am sorry to learn of your eye problems. I wish there was a cure for all cancers. Thanks for speaking to me.
Patti

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Hi Patti: That is amazing that you see Dr. Strair also. If you should relapse, can you start on Gleevec or one of the other treatments to get you into remission?
Please keep in touch with me anytime. You can e-mail me direct also at suzzienovember@yahoo.com I will keep you in my prayers.
Do not ever give up on this disease. They have come so far with knowing how to treat it.
My faith in God has gotten me through so much, and has made me stronger.

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I was diagnosed with CML in June 2009. Don't really know what to expect. I went today to switch from an oncologist to a hematologist because my oncologist was not giving me what I needed. Did you have strong side effects from the Gleevec. I'm into my 4 month on G-400mg and my face looks swollen including my eyes, watery eyes, skin is changing colors, and I keep a low grade fever. Hopefully, next week when I visit the hematologist for the first time, I will get some clear answers.

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Hi Faith: So glad you sent me a e-mail. This is all new to you, and believe me it gets better. I see a Oncologist /Hematologist, and I could share so much with you with regard to Gleevec and CML.
If you would like to send me a personal e-mail I would be glad to keep in touch with you to get you through all this. It is suzzienovember@yahoo.com
The swelling in the eyes is very common. I still get it, and depending on what side I sleep on thats the eye that fills with the edema. I put a ice pack on my eyes in the morning, and it brings it right down.
Just tell this doctor everything, and about the fever too. Hope to keep in touch with you.

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my father in law was dignoised with mds . He also has reab lukemia that might go to acute lukemia. he just started chemo yesterday,. they say is is not a canidate for a marrow, or stem cell. he is so very weak. The doctors said that this probably started 4 yaers ago.MY HUSBAND IS DEVISTATED.

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my father in law was dignoised with mds . He also has reab lukemia that might go to acute lukemia. he just started chemo yesterday,. they say is is not a canidate for a marrow, or stem cell. he is so very weak. The doctors said that this probably started 4 yaers ago.MY HUSBAND IS DEVISTATED.

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Hi: I am trying to follow your message here. Are you saying that your father-in-law has had Chronic Leukemia that is possibly going into Acute Leukemia?
You said he is getting Chemo. Could you please tell me a little bit more with more clear information. Their are different types of Leukemia. Does he have CML or CLL?
I can tell you that they are doing so much for Leukemia now, even if it has gone into acute stage.

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The doctors first told us that he had mds.He had to get blood and platlets. his body destroyed all 6 bags of platlets. They did a bone marrow, thats when we found out about the mds. he is age 63. Then we he went back to the doctor they had recieved some additional blood work and said that he also has raeb lukemia- that will probably turn the acute lukemia. He is taking chemo every day.

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Hi: I do not know what RAEB Leukemia is? The MDS.
Do you mean Muscular Dystrophy or Multiple Sclerosis?

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Hello,

I am trying to gain some insight into the types of information patients and/or loved ones struggling with Chronic Myelogenous Leukemia may be looking for when they are initially diagnosed and where they turn to for information. Specifically, how did you initially find out you (or your loved one) had CML? Did your physician adequately explain the condition to you and what to expect, as far as treatment? Did you turn to any support groups, the internet, etc. for additional information? What type of information do you feel may be lacking for CML patients and their loved ones?

If you wouldn't mind, I would greatly appreciate any information you could share about your experience. Feel free to share your experience within the boards, or if you prefer to keep your experience anonymous, I have put a survey online for your to share your experience(s).

http://rosetta.checkboxonline.com/Survey.aspx?s=9b2829cf05174ed697f54cb826e d9519

Thank you.

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