Has anyone seen this MDA Specialist?

[CaCo82]

I hope that you all are enjoying your Monday!!!

My husband got the call this morning to schedule an appt for him at MD Anderson. They want to schedule him with Dr. Jan Burger. Has anyone who has gone there seen this doctor, by chance?

I looked him up and he has quite a few publications on CLL, but was just curious if anyone here has had experience with him. Thank you in advance!!! 🤗

[JR1964]

CaCo82, I have not had any personal dealings with him. But I heard he was great. He is part of MDA. That itself should assure you. STAY STRONG J.R

[CaCo82 in reply to JR1964]

Awesome, thank you so much, JR!!! I searched this group for any posts with his name and found a few postings by Dr. Brian Koffman, where he shared some of Dr. Burger’s articles, so that was reassuring. It looks like my husband will be getting in to see Dr. Burger by the end of next month, which is GREAT news. ☺️

[JR1964 in reply to CaCo82]

That is wonderful. MDA is great. Please read my post I just put on the site. It may brighten y'alls day. Have FAITH AND BELIEVE!!!STAY STRONG J.R

[CaCo82 in reply to JR1964]

Going to find it and read it right now. 😁

[baq724]

I was told by one of my friends who works in pharmaceutical oncology and is also a friend of Dr. Wierda that MDA doctors often confer with each other about their patients. You actually have a team of specialists who see your case even though you are only seeing one doctor.

[CaCo82 in reply to baq724]

Oh wow, that is good to know. I am just so thankful that we were able to get the referral from his PCP and that we live close enough for him to be able to go. They told him today to expect to be down there for 3-5 days. I’m sure it’s for them to be able to rerun all of the tests, etc.

[baq724 in reply to CaCo82]

I was told the same thing, but I was only there for one day. Labs and about a 30 minute visit with Dr. Wierda. I gave about 15 tubes of blood, so have something to eat prior to labs. I was a little light headed afterwards. No bone marrow for me because I was early stage. MDA has a travel assistant hotline where you can get discount hotels and such. I believe that info is on their website. You’re in good hands and I’m sure you will feel better when you leave just because you know you’re getting the best care.

[CaCo82 in reply to baq724]

Thank you so much for the tips!!! And you’re right - I’m sure I’ll leave there feeling on top of the world, knowing my husband is getting exceptional care. ☺️

[amberhead]

May I ask how long it took you to get an appointment at MD Anderson? I live in San Antonio and I took part in the CLL Societies free CLL consult program yesterday via phone with a CLL specialist in California. They recommended to see a CLL specialist occasionally/regularly even though my normal hematologist/oncologist is pretty much on track and MD Anderson is the closest. I was just wondering if it took months to get in....

[CaCo82 in reply to amberhead]

We got the referral from his PCP this past Friday. On Saturday, I filled out the online request for an appointment for my husband on the MD Anderson website. Then, yesterday, MDA called to gather all of his information. They told him that once they received the referral (we scanned it into them last night), his appointment would be within the next 4 weeks. 😃 The wait is definitely not as long as I expected. ☺️

[misterbee]

Hello,

I saw Dr. Burger in April. He did an elaborate workup on me. You are correct, he's done his homework and is well respected in the community. I do not live in Houston and did not schedule a one-on-one return visit. I was told that Dr. Burger would explain my test results when they came in and continue to observe afterwards. He also agreed to consult with my local doc. Unfortunately I had to prod for test result information. There was not explanation of Notch1 prognosis, but I googled it.

I am Tri12+,Notch1,Unmutated,ZAP+, lots of bad markers. Dr. Burger recommended Btk inhibitor (Ibrutinib, BGB3111). He also answered questions about my local's CLL doc's analysis. He's not quite a Dr Keating, whom I requested, but he's certainly one of the best. Good luck with everything.

[CaCo82 in reply to misterbee]

Thank you so much for your response!!! I’m so glad to hear of someone who has seen him as a patient and had such a positive experience. My husband is Trisomy 12, but we are not sure what his mutation status is yet. I’m sure we will find all of that out once he gets seen at MDA.

[ladyprescott]

It sounds like you're in good hands. It's been eight months since your post. How are you feeling about the doctor now and how is your husband doing?