Yet another update. My mind and emotions are all over the place.. (M.D. Anderson)

mom2greatkids
mom2greatkids Member Posts: 528
in Ovarian Cancer #1
Hi Ladies,

I just learned that my insurance will pay for my visiting M.D. Anderson. A friend (retired chemo nurse) has offered to make the 10 hr. drive with me. Has anyone been there? What advice? What dr. did you see? The earliest appt. is the week of August 13.

Thanks,

Carla

Comments

  • jadav1956
    jadav1956 Member Posts: 95 Member
    #2
    Hey Carla, I am going to
    Hey Carla, I am going to M.D. Anderson in Orlando July 19..I cant keep platelets up to get my chemo of gemzar and avastin. My platelets have been 40, 32,45 for the last 3 weeks. Just had bloodwork today, so will know thursday because of holiday. I am 3c,dxed 4/11.I had 9 txs, off for a 2 month break,started a maintenance chemo of taxotere and avastin in March...ca125 went from 22..to 30..to 70..and 340..changed to gemzar and avastin in June and have only been able to do one tx due to platelets. Onc cancelled my tx for july 5 cause I am driving to Orlando, bout a 14 hr drive for me. I think he was afraid to give me a tx even if platelets came up to normal. I believe the onc there is a Dr. Victoria Shimp in Fla. Jackie
  • mom2greatkids
    mom2greatkids Member Posts: 528
    #3
    jadav1956 said:

    Hey Carla, I am going to
    Hey Carla, I am going to M.D. Anderson in Orlando July 19..I cant keep platelets up to get my chemo of gemzar and avastin. My platelets have been 40, 32,45 for the last 3 weeks. Just had bloodwork today, so will know thursday because of holiday. I am 3c,dxed 4/11.I had 9 txs, off for a 2 month break,started a maintenance chemo of taxotere and avastin in March...ca125 went from 22..to 30..to 70..and 340..changed to gemzar and avastin in June and have only been able to do one tx due to platelets. Onc cancelled my tx for july 5 cause I am driving to Orlando, bout a 14 hr drive for me. I think he was afraid to give me a tx even if platelets came up to normal. I believe the onc there is a Dr. Victoria Shimp in Fla. Jackie

    Hey Jackie,
    I'm going to the
    Hey Jackie,

    I'm going to the one in Houston, TX. Let me know how you like things. Everyone says "they're the best, so we'll see." :) Best wishes!!

    Carla
  • jadav1956
    jadav1956 Member Posts: 95 Member
    #4
    mom2greatkids said:

    Hey Jackie,
    I'm going to the
    Hey Jackie,

    I'm going to the one in Houston, TX. Let me know how you like things. Everyone says "they're the best, so we'll see." :) Best wishes!!

    Carla

    Thanks Carla... you too..
    Thanks Carla... you too.. will post as soon as I can after appt..
  • debrajo
    debrajo Member Posts: 1,095 Member
    #5
    mom2greatkids said:

    Hey Jackie,
    I'm going to the
    Hey Jackie,

    I'm going to the one in Houston, TX. Let me know how you like things. Everyone says "they're the best, so we'll see." :) Best wishes!!

    Carla

    Hey Carla, I go to MD in
    Hey Carla, I go to MD in Houston for UPSC! It's only 90 minutes from where I live and it has been great for me! Will you be at main building or at Mays clinic? The Mayes is pretty much across the street and catty-corner to MD main hospital and is a whole lot easier to get around. My Dr. is Kathleen Schmeler..I think she is really good, a little young, but everyone under 50 is young to me! Have a good trip, watch that Houston traffic! It can be brutal...let me know if I can help! best, debrajo
  • mom2greatkids
    mom2greatkids Member Posts: 528
    #6
    debrajo said:

    Hey Carla, I go to MD in
    Hey Carla, I go to MD in Houston for UPSC! It's only 90 minutes from where I live and it has been great for me! Will you be at main building or at Mays clinic? The Mayes is pretty much across the street and catty-corner to MD main hospital and is a whole lot easier to get around. My Dr. is Kathleen Schmeler..I think she is really good, a little young, but everyone under 50 is young to me! Have a good trip, watch that Houston traffic! It can be brutal...let me know if I can help! best, debrajo

    Thanks debrajo
    I'm not sure where will I be going. My dr. is probably going to give me a referal. I've never been to TX. My friend Linda will do the driving in Houston. She used to be a travel nurse, so she's used to large city driving. :) I'm just a country girl. If I do go there, my treatment will still be here in Mississippi.

    Carla
  • debrajo
    debrajo Member Posts: 1,095 Member
    #7
    mom2greatkids said:

    Thanks debrajo
    I'm not sure where will I be going. My dr. is probably going to give me a referal. I've never been to TX. My friend Linda will do the driving in Houston. She used to be a travel nurse, so she's used to large city driving. :) I'm just a country girl. If I do go there, my treatment will still be here in Mississippi.

    Carla

    You'll probably be comming
    You'll probably be comming in on I10 which will be pretty much a straight shot into Houston and MD. Let me know if I can help. best debrajo
  • mom2greatkids
    mom2greatkids Member Posts: 528
    #8
    debrajo said:

    You'll probably be comming
    You'll probably be comming in on I10 which will be pretty much a straight shot into Houston and MD. Let me know if I can help. best debrajo

    I'll let you know. Maybe it
    I'll let you know. Maybe it would work out to where we could meet "in person." Thanks so much.
  • zenisthou
    zenisthou Member Posts: 26
    #9
    MD Anderson
    Hi, Clara,

    I went to MD Anderson Houston for consultation in Dec. 2011. If you read my profile, you can see my ovararian cancer journey updated to that time. I need to update it when I get chance.

    I always tell my friends that MD Anderson for cancer patient is like Jerusalem to Christian, a place you will try your best to go at least for once. My consulation session with Dr. David Gershenson was very informative and helpful. Dr. Gershenson spent plenty of time to answer my questions. I sent all my medical record a week before the appointment, and Dr. G. has went through all of the data before he met me. Then Dr. G. will bring up my case to a discussion panel that they con call daily to get as much as input from a group of gynocology oncologist. I went back to meet with Dr. G. the following day, and he gave me the suggestion based on their discussion.

    When my CA125 double every month and reached 1600 after HIPEC surgery last winter, my oncologist thinks that I am carbo-resistant case and wants to put me on Topotecan. MD Anderson don't think that my cancer is carbo-resistant and suggest me to do Carboplatum+Gemzar+Avastin. I started treatment with that regimen from end of Dec. 2011, and my CA125 went down from 1600 to 35 within 3 months. But unfortunately I started to allergic to Carbo from March, and I have to stop Carbo and continue on Gemzar/Avastin up to now. I just had a PET scan on 6/25, and it shows no cancer activity. All the 8 spots from previous PET scan are gone. I will say the treatment is a successful treatment to control the desease, and I give the credit to MD Anderson.

    I am going to meet with Dr. Gershenson again on 7/17 for another consultation. My oncologist thinks I should be on current chemo indefintely until it doesn't work, and then I should switch to another regimen. He said that a recurrance Ovarian Cancer is stage 4 cancer, no matter what the original staging was. And his standard practice to treat stage 4 ovarian cancer is put the patient on chemo as long as she live... I want to discuss this with MD Anderson and I know there are clinical trial with attemp to extend the remission, I want to ask for their opinions too.

    To make the most out of your visit to MD Anderson, make a list of questions before meeting. Collect as much as information before you meet the doctor. Bring a recorder and ask for doctor's permission if you can record the conversation. If he doesn't agree with recording, make sure you make as much note as possible.

    Please let me know if I can be more helpful to you.

    Take care.

    Tracy
  • mom2greatkids
    mom2greatkids Member Posts: 528
    #10
    zenisthou said:

    MD Anderson
    Hi, Clara,

    I went to MD Anderson Houston for consultation in Dec. 2011. If you read my profile, you can see my ovararian cancer journey updated to that time. I need to update it when I get chance.

    I always tell my friends that MD Anderson for cancer patient is like Jerusalem to Christian, a place you will try your best to go at least for once. My consulation session with Dr. David Gershenson was very informative and helpful. Dr. Gershenson spent plenty of time to answer my questions. I sent all my medical record a week before the appointment, and Dr. G. has went through all of the data before he met me. Then Dr. G. will bring up my case to a discussion panel that they con call daily to get as much as input from a group of gynocology oncologist. I went back to meet with Dr. G. the following day, and he gave me the suggestion based on their discussion.

    When my CA125 double every month and reached 1600 after HIPEC surgery last winter, my oncologist thinks that I am carbo-resistant case and wants to put me on Topotecan. MD Anderson don't think that my cancer is carbo-resistant and suggest me to do Carboplatum+Gemzar+Avastin. I started treatment with that regimen from end of Dec. 2011, and my CA125 went down from 1600 to 35 within 3 months. But unfortunately I started to allergic to Carbo from March, and I have to stop Carbo and continue on Gemzar/Avastin up to now. I just had a PET scan on 6/25, and it shows no cancer activity. All the 8 spots from previous PET scan are gone. I will say the treatment is a successful treatment to control the desease, and I give the credit to MD Anderson.

    I am going to meet with Dr. Gershenson again on 7/17 for another consultation. My oncologist thinks I should be on current chemo indefintely until it doesn't work, and then I should switch to another regimen. He said that a recurrance Ovarian Cancer is stage 4 cancer, no matter what the original staging was. And his standard practice to treat stage 4 ovarian cancer is put the patient on chemo as long as she live... I want to discuss this with MD Anderson and I know there are clinical trial with attemp to extend the remission, I want to ask for their opinions too.

    To make the most out of your visit to MD Anderson, make a list of questions before meeting. Collect as much as information before you meet the doctor. Bring a recorder and ask for doctor's permission if you can record the conversation. If he doesn't agree with recording, make sure you make as much note as possible.

    Please let me know if I can be more helpful to you.

    Take care.

    Tracy

    Thanks Tracy,
    I had my
    Thanks Tracy,

    I had my surgery May 18, 2011. I had 9 months of complete remission. I had six rounds of carbo/taxol last year, last 5 with avastin, then I have been on avastin for maintenance since November of '11.

    My petscan in early May lit up 3 very small places near my diaphram (too small to even biopsy). So one place lit up in my neck, near my thyroid. My medical oncologist was worried about lymphoma, so he sent me for a needle biopsy. It came back suspicious for ovca. He isn't convinced that it is ovarian since my ca-125 has been normal for nearly a year now. The last one just two weeks ago was 14. I think 9 is the lowest mine has ever been. Anyway, he's having the node removed surgically to see where the cancer is coming from.

    My surgeon is 150 miles away, so I have been receiving treatment from a medical oncologist.

    I really want to go to M.D. Anderson, because of all the reading, etc. I have done, it is the very best cancer center available.

    I have a friend who has been off and on chemo for the past five years. She had two yrs. complete remission after first line treatment. (it will be 7 yrs. for her in December). This recurrence has been more upsetting than the first diagnosis I believe.

    I may have more questions for you later.

    Best wishes to you.

    Carla
  • Felicia_205
    Felicia_205 Member Posts: 79 Member
    #11
    I saw Dr Gerschensen(sp?) at
    I saw Dr Gerschensen(sp?) at MD Anderson in houston. He was very nice and helpful. The hospital is great there were people that came from all over the world to go there.
  • mom2greatkids
    mom2greatkids Member Posts: 528
    #12
    Felicia_205 said:

    I saw Dr Gerschensen(sp?) at
    I saw Dr Gerschensen(sp?) at MD Anderson in houston. He was very nice and helpful. The hospital is great there were people that came from all over the world to go there.

    My dr. told his nurse to
    My dr. told his nurse to facilitate my appt. I told her I wanted to hear some suggestions of names. Two for this one doc. Sounds good. :)

    I have never been to Texas before. Might also be an adventure. :)

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