MD Anderson Doctor recommendation CMML

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MD Anderson Doctor recommendation CMML

by kdeloia on Wed Aug 15, 2012 06:49 PM

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Can anyone recommend a good Dr. at MD Anderson to treat CMML?

My Dad has been treated at the Mayo clinic for 6 months since his diagnosis and has run out of options there. It has progressed in his skin (leukemia cutis) and I guess the chemo treatments just aren't helping.

Thank you for any input you may have!

RE: MD Anderson Doctor recommendation CMML

by dgudau on Sat Sep 01, 2012 12:36 PM

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my husband was diagnosed with AML back in jan 2011, he has gone thru chemotherapy since then and also has had 5 bone marrow biopsy the last one was done 2 weeks ago and the md indicated that it was not bad, but is counts have been down for 8 weeks and with no chemptherapy being done. Dr's are baffled as to why the counts are still down and we have run out of options.  He known has a blood cloth in his leg legs that requires that he has injections every day for the 6 months or the rest of his life.  We are considering getting a different option at the MD Anderson in Houston tx. any ideas

RE: MD Anderson Doctor recommendation CMML

by SusanLB_1 on Tue Sep 04, 2012 12:14 AM

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Definitely go to MD Anderson. You can make a referral on their website, which is faster than a doctor referral. I am being treated there for CMML. My doctor is Elias Jabbour, but Dr. Manero is probably the best. I have been in remission fo 3 years and still doing well. I see my doctor monthly and travel from Illinois to Texas, but it is well worth the travel to be seen by the best.

RE: MD Anderson Doctor recommendation CMML

by rsendler on Mon Dec 03, 2012 10:55 PM

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I would recommend that you see Dr. Garcia-Manero. He is a specialist in the treatment of CMML. I have been out to Houston to consult with him once thus far and I was very impressed with him and the thoroughness of the entire staff in the MD Anderson Leukemia Center. He made recommendations to my oncologists modifying my treatment. It is too early to tell if I will respond as well as I hope I will, but I feel better now than I did before and I feel like I'm in good hands with Dr. Manero and MD Anderson.

RE: MD Anderson Doctor recommendation CMML

by Txlinda on Sat Nov 09, 2013 06:29 PM

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I live in TX and have just been diagnosed. Are you considering a transplant? My dr wants to send me to Baylor, but I'm considering MD Anderson. I'm 67 with few symptoms... Any info you have is appreciated!

RE: MD Anderson Doctor recommendation CMML

by SusanLB_1 on Sun Nov 10, 2013 12:40 AM

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I am having a bone marrow transplant after successful treatment with Vidaza. After 4 1/2 years the Vidaza quit working and I was on Arie 614 but it was not working. It was decided by Dr. Jabbour from leukemia and Dr. Bashier from transplant that this is the time for a transplant. My diagnosis is MDS/CMML. I am 64 years old. I live in Illinois and have been going to MD Anderson for almost 5 years. I have been going through intense testing and will start chemo this week to delete my cancerous marrow. I have an unrelated bone marrow donor who is a 12 out of 12 match. I will have my transplant on Nov. 20. I have all the confidence in the world that I will win this battle. My biggest problem has been severe anemia. I have iron overload (high ferritin) due to my frequent transfusions. MD Anderson is #1 in the US. If I can answer or be of help or encouragement to anyone, please ask. If I cannot answer, someone should be able to help. I know this is no "walk in the park" and I am going to be very ill for a while, but I can offer encouragement. I know I am in God's hands and pray he gives my doctors and team the power to heal me of this dreadful disease.

RE: MD Anderson Doctor recommendation CMML

by johnwc on Wed Dec 11, 2013 12:51 AM

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Susan,

I just got diagnosed last Thursday with CMML.  Did you only do drugs or did you get a bone marrow transplant?

RE: MD Anderson Doctor recommendation CMML

by Txlinda on Wed Dec 11, 2013 01:28 AM

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Hi! This is Linda. I am a friend of Susan. She is in the hospital and had the transplant. I doubt she will be able to talk for a couple of weeks as she recovers. Susan did drugs, then when they quit working went for the bone marrow transplant. I was diagnosed with CMML also and set up 2 appointments, one for a first opinion at MD Anderson and another for a second opinion at Baylor. Have you had a bone marrow biopsy? Where do you live? I have some great information I will post. If you go to a transplant center they will determine your course of treatment based on your stage of disease. I have a great list I will forward. Thanks, Linda

RE: MD Anderson Doctor recommendation CMML

by johnwc on Thu Dec 12, 2013 09:42 PM

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Linda,

I did get a biopsy and confirmed CMML.  I'm in Portland, Or and have an appt in 3 weeks with the transplant team at OHSU.  My disease is new, after my routine physical in August, went back a month later to see if white count was still high and it was.  I finally got the diagnosis last Thursday.  Yes, please forward anything you have to johnwc98 at yahoo dot com.

Blessings,  JOHN

RE: MD Anderson Doctor recommendation CMML

by Txlinda on Thu Dec 12, 2013 10:04 PM

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Im in the same situation, though they don't like my original biopsy so I had another done at MDA and am going back for results in Jan. I have normal white count and high platelets, so they aren't sure. I am a wait and see case right now, but at 67 I'm sure they would want to do a transplant by 70. Just for info, The Hutchinson Center in Seattle, like MDA, is one of the largest transplant centers in the US. A friend of mine went there from Pennsylvania with AML in 2001 for a transplant and is now cancer free. Travel is a pain (we drive 4 hours to MDA) but sometimes worth it. This is a list of info on how many transplants have been done for CMML listed at the bottom... It is listed under myelodysplastic and myeloproliferative diseases. This is how many transplants for each hospital... This whole transplant site is great... http://bethematch.org/For-Patients-and-Families/Getting-a-tr Blessings to you too!
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