md Anderson tips

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since my last post, DH has started chemo and is on his 2nd cycle. He is having some side effects, but for the most part he is doing well. He had the baseball size tumor removed in July a month later a liver ablation. Our oncologist is great and encouraged a 2nd opinion which we are in the process of setting up. Since chemo has been started we will have to wait until the 4th cycle and then we will fly down to MD Anderson and they will do all of the test, treatment plan etc. has anyone been there, any tips or suggestions. We know we want the to do the genetic testing since DH is only 38 with stage 4. i  don't have the date yet have to call back next week and schedule. We are feeling hopeful with this choice of a 2nd opinion, it's a 5 hour flight for us and I just want to prepare and do some research before hand to take a little of the stress out of it. Thank you all!!

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  • Lolly1001
    Lolly1001 Member Posts: 9
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    MD Anderson

    Sunnydeecat,

    I have to say that I am impressed your current oncologist recommended a 2nd opinion. He/she obviously wants the best for his/her patients. Our first oncologist seemed insulted that we would go to MD Anderson.

    My husband has been going to MDA for the past 3 years.  He is Stage IV with multiple mets to liver. He's currently, on Irinotecan/Cetuximab/Xeloda. We drive about 5 hours to get to MDA for each appointment, scan, or chemo infusion. While we get tired of the driving, we feel it is the best place for his care. We have been very impressed with all the staff there, and I have no doubt they have some of the best surgeons in the world. 

    As far as advice, you can expect to be somewhat overwhelmed on your first visit. The main campus is a small city and can be intimidating. All of the staff has been very nice and always willing to answer questions and give directions. Also, you can expect to wait fairly long times. Our very first visit, a gentleman told us the "MD" stands for most of the day...he was right. However, we feel it is worth the waits. Each specialist you see will be in a different office area, so you will likely have multiple waits at different parts of facility. Bring a good book. You may also want to bring a charger for your phone/tablet...just in case.

    If you can stay at the Rotary House International (Marriott ran hotel that is attached to the main MDA facility) it will be the most convenient location. You can keep your car parked in the hotel parking garage and walk (via skywalks) to any of your appointments. That will save much time and stress. You can even get your bloodwork done in the hotel lobby during certain times, which can save you some waiting time.

    If you are staying off campus, plan an extra 15 minutes to find a parking place in their often very crowded parking garages.  If I remember right, the parking is $12 per day, less if you stay less time.

    We now go to an MDA oncologist at one of their satellite locations (Sugar Land), which is outside of Houston and much less crowded. If liver surgery becomes an option again, we will use an outstanding liver surgeon, Dr. Claudius Conrad, from the main campus. His colon surgeon is Dr. Craig Messick, who is amazingly personable and an expert surgeon.

    As background, if interested: We initially went to MDA because DH was diagnosed with Stage II/III esophageal cancer, and we needed an extremely experienced surgeon and facility to perform the very tricky surgery (3/4 of his esophagus and 1/4 of his stomach was removed and then the stomach pulled up and reattached to the much shorter esophagus). During MDA's workup leading up to the surgery, they discovered he also had colon cancer (separate and unrelated to esophageal cancer). His original doctors in Dallas told us the spot on his colon was probably just a polyp that could be looked at a year or so after the esophagus was addressed. We are so grateful that MDA was so thorough and insisted on a colonoscopy before moving forward.

    They dealt with the esophagus first (he couldn't swallow food and EC is VERY aggressive). My husband started with radiology, chemo, and then surgery for the esophagus, which was very successful! Because they found the Colon Cancer, they gave him chemo that helped both the esophagus and colon early on. We feel that kept the colon cancer from spreading even more.

    For the past 2.5 years, the focus has been on his colon cancer. He's had a colectomy, which is when the surgeon found it had spread to his liver. The liver lesion didn't show up on the CT scan, but the surgeon found it by feeling the liver before closing up and removed it for biopsy. Since then, he's had a liver ablation and several different chemo cocktails. They also did genetic testing on the colon tumor, and he is Kras Wild, which gives us a couple more chemo options. We are still battling the liver mets. Chemos only seem to work for short periods, then the cancer progresses.

    Sorry for the long post. I wrote more than I intended. 

    I wish your husband, you and your family all the best as you go through this difficult time. I think you are heading in the right direction by going to MDA. 

    Best wishes....Lolly

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Lolly1001 said:

    MD Anderson

    Sunnydeecat,

    I have to say that I am impressed your current oncologist recommended a 2nd opinion. He/she obviously wants the best for his/her patients. Our first oncologist seemed insulted that we would go to MD Anderson.

    My husband has been going to MDA for the past 3 years.  He is Stage IV with multiple mets to liver. He's currently, on Irinotecan/Cetuximab/Xeloda. We drive about 5 hours to get to MDA for each appointment, scan, or chemo infusion. While we get tired of the driving, we feel it is the best place for his care. We have been very impressed with all the staff there, and I have no doubt they have some of the best surgeons in the world. 

    As far as advice, you can expect to be somewhat overwhelmed on your first visit. The main campus is a small city and can be intimidating. All of the staff has been very nice and always willing to answer questions and give directions. Also, you can expect to wait fairly long times. Our very first visit, a gentleman told us the "MD" stands for most of the day...he was right. However, we feel it is worth the waits. Each specialist you see will be in a different office area, so you will likely have multiple waits at different parts of facility. Bring a good book. You may also want to bring a charger for your phone/tablet...just in case.

    If you can stay at the Rotary House International (Marriott ran hotel that is attached to the main MDA facility) it will be the most convenient location. You can keep your car parked in the hotel parking garage and walk (via skywalks) to any of your appointments. That will save much time and stress. You can even get your bloodwork done in the hotel lobby during certain times, which can save you some waiting time.

    If you are staying off campus, plan an extra 15 minutes to find a parking place in their often very crowded parking garages.  If I remember right, the parking is $12 per day, less if you stay less time.

    We now go to an MDA oncologist at one of their satellite locations (Sugar Land), which is outside of Houston and much less crowded. If liver surgery becomes an option again, we will use an outstanding liver surgeon, Dr. Claudius Conrad, from the main campus. His colon surgeon is Dr. Craig Messick, who is amazingly personable and an expert surgeon.

    As background, if interested: We initially went to MDA because DH was diagnosed with Stage II/III esophageal cancer, and we needed an extremely experienced surgeon and facility to perform the very tricky surgery (3/4 of his esophagus and 1/4 of his stomach was removed and then the stomach pulled up and reattached to the much shorter esophagus). During MDA's workup leading up to the surgery, they discovered he also had colon cancer (separate and unrelated to esophageal cancer). His original doctors in Dallas told us the spot on his colon was probably just a polyp that could be looked at a year or so after the esophagus was addressed. We are so grateful that MDA was so thorough and insisted on a colonoscopy before moving forward.

    They dealt with the esophagus first (he couldn't swallow food and EC is VERY aggressive). My husband started with radiology, chemo, and then surgery for the esophagus, which was very successful! Because they found the Colon Cancer, they gave him chemo that helped both the esophagus and colon early on. We feel that kept the colon cancer from spreading even more.

    For the past 2.5 years, the focus has been on his colon cancer. He's had a colectomy, which is when the surgeon found it had spread to his liver. The liver lesion didn't show up on the CT scan, but the surgeon found it by feeling the liver before closing up and removed it for biopsy. Since then, he's had a liver ablation and several different chemo cocktails. They also did genetic testing on the colon tumor, and he is Kras Wild, which gives us a couple more chemo options. We are still battling the liver mets. Chemos only seem to work for short periods, then the cancer progresses.

    Sorry for the long post. I wrote more than I intended. 

    I wish your husband, you and your family all the best as you go through this difficult time. I think you are heading in the right direction by going to MDA. 

    Best wishes....Lolly

    'like' button

    If there were a Like button as they have on Facebook, this would definitely be used here. 

    What a fantastic reply, Lolly.  I thank you, and its not even my thread. 

    Tru

  • Lolly1001
    Lolly1001 Member Posts: 9
    edited September 2017 #4
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    Thanks Tru!

    I remember the first time we went to MDA.  The size alone was overwhelming...as if a cancer diagnosis wasn't overwhelming enough. It would have helped to have some insight into what to expect.

  • aoccc2015
    aoccc2015 Member Posts: 37
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    a sleeping bag:)

    I am lucky to live about an hour away from MD but yeah it is still a full day for just a test or two. But i will say I had two PET scans, one from the local mobile and one from MD. Both only about a week apart. After reading both of the reports, the one from MD is way more descriptive and just seemed more professional than the one from the local unit. So I guess the day wasn't wasted.:)

  • Sunnydeecat
    Sunnydeecat Member Posts: 16
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    Thank you so much for the

    Thank you so much for the information and tips. We don't have a scheduled date just yet, but will be there for the week of the 23. We plan to stay at the Hotel you suggested Lilly. Thank you for the info that was top on our list and after your info we knew that was the place. they told us to plan to stay 5 business days, so we will. We decided why not make it a mini vacatio...you know in between scans, test colon cancer talk. Hey that's how we roll! All kidding aside we did think why not have some fun while there. I can work most of the week on and off while waiting in between appointments. Thank you for the info about the campus, I think we will be more prepared and not as overwhelmed. Anyone have suggestions as to what to discuss ask about for a 2nd opinio? Our local oncologist is amazing and we feel very confident in his ability. we just want to make sure and he is weloming and almost as excited as we are for the trip down. thank you for the responses, the info and comfort youve provided is much appreciate. 

    Sorry for the typos...darn spell check 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry

    Sorry about your husband's diagnosis but I'm not able to give you any information about this facility.  Wishing him well and hope that he gets the care he deserves and they are helpful.  I've heard very good things about it though. 

    Kim

  • Sunnydeecat
    Sunnydeecat Member Posts: 16
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    We have the appointmen for 11

    We have the appointmen for 11/6/17. We are planning to stay until Friday as they requested. This will put DH completing cycle 5 of chemo. Today he completed the 3rd cycle today and this will be the first with the Avastin added so a little interested to see how this goes. So far he has done pretty well. Hope he is able to keep it up! His CEA started at 0.7the day they attempted the colonoscopy july 25 and has gone down each month and today was 0.3 I know this may not be a very good indicator, but we will take any positives to keep DH as positive as he can be!!