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  • MD Anderson HDC

    I have signed up for a HDC trial at MD Anderson in Houston. It includes the following regimen:
    Drug: Bevacizumab
    Drug: Gemcitabine
    Drug: Docetaxel
    Drug: Melphalan
    Drug: Carboplatin
    Drug: Mesna
    Drug: Ifosfamide
    Drug: Etoposide
    Procedure: Stem Cell Transplant

    Could you please recommend me some lodging options? I will be there for 3 months, and I need some place affordable. Also, please share your HDC experiences. What should I watch for? What should I ask the nurses? Overall, tips for survival. And, wish me luck!

    Selman
    Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
    Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
    4*BEP AFP 20 end of 4*BEP
    May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
    Surveillance (blood & X rays) and all clear for 24 months
    April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
    4xTIP - almost normal AFP, but started rising again
    2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
    Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
    2 Lung Wedge Resections -

  • #2
    Selman,

    Wishing you the best. Here's a page with accommodation info for the Texas medical center area. Hope it helps.

    http://www.mdanderson.org/patient-an...e/lodging.html

    I studied and worked at the UT school of public health across the street from md Anderson. The easiest place to stay is the rotary house. It's connected to md Anderson via sky-bridge but it might be pricey. Never hurts to ask for a discount though.

    Eric
    8/5/2013 - right I/O 8/20/2013 - classic seminoma (tumor size 5.5 cm confined to testis. No spermatic cord involvement. Lymph vascular invasion present.) 9/04/2013 - CT scan results - All clear http://www.tc-cancer.com/forum/core/...lies/smile.png 9/23/2013 - met with 2nd oncologist - stage 1B 9/26/2013 - dose 1 of 2 of carboplatin 10/17/2013 - dose 2 of 2 of carboplatin 11/15/2013 - follow up. Still anemic 11/27/2013 - thyroid ultrasound for pain in throat - all clear http://www.tc-cancer.com/forum/core/...lies/smile.png 12/2013 - throat pain dx as intubation injury and stomatitis

    Comment


    • #3
      Will you be an outpatient?
      Tips from my experience would be use the mouthwash often to prevent mouth sores. Stay on top of naseaua and diarrhea. The best thing I learned was to not be a tough guy that could deal with side effects or tough it out. There are lots of iv meds that can be given in a hospital to make it much more bearable so if need be don't hesitate to be admitted. I fealt so much better as an impatient.
      4x vip
      2xhdct
      2x cyber knife
      Oral etoposide
      2xCrainiotomy
      Brain radiation
      2xorchiectomy
      4xPVB

      Comment


      • #4
        I agree with jj- most important thing is don't be a tough guy, tell your doctors/nurses every single side effect/pain you are having.

        example: they wanted me to take all these pills to protect against different bacterial & fungal infections. Except every single time, the pills made me throw up whatever food I had eaten previously. So they ultimately just let me not take the pills.

        I also found being an inpatient to be far easier. I couldn't really drink during HDC, so being hooked up to the IV tree was kind of a necessity. It's also a pain to make the trip to the hospital everyday even if it's a 5 minute walk/ride, because you will feel like absolute ****.

        So being an inpatient you can stay in bed and have the doctors and nurses come to you.

        I recommend bringing entertainment (computer/tablet/video games/movies/music/books/Netflix subscription), because when you're feeling okay there is nothing to do in the hospital.

        One last tip- if you get diarrhea, ask them to test for C. Diff. Unfortunately it's very easy to catch in a hospital setting, especially when you have no immune system and your GI tract has been chemo'd.
        7/25/12 : dx stage IIIC- nonseminoma (yolk sac)
        7/30/12-10/15/12 : 4xBEP
        12/12/12 - 12/16/12: 1X TIP
        1/10/13 - 2/21/13: 2X HDC @ IU
        https://www.caringbridge.org/visit/Bryantlook

        Comment


        • #5
          Originally posted by Tarc79 View Post
          I have signed up for a HDC trial at MD Anderson in Houston. It includes the following regimen:
          Drug: Bevacizumab
          Drug: Gemcitabine
          Drug: Docetaxel
          Drug: Melphalan
          Drug: Carboplatin
          Drug: Mesna
          Drug: Ifosfamide
          Drug: Etoposide
          Procedure: Stem Cell Transplant

          Could you please recommend me some lodging options? I will be there for 3 months, and I need some place affordable. Also, please share your HDC experiences. What should I watch for? What should I ask the nurses? Overall, tips for survival. And, wish me luck!

          Selman
          Hi Selman,

          I was at MDA last week and I saw Dr. Pagliaro. I stayed at the Houston Marriott at the Texas Medical Center which is very close and have reasonable rates. I wish you all the best.

          Jamal

          Comment


          • #6
            If you can get/afford a room at the rotary house then get it. Nothing will be that convenient. Whenever my grandfather was spending a lot of time down here for his prostate cancer he rented a condo in the medical center area. That'll run you about $1,000/month.

            If you're inpatient you may not even need to get a hotel. I was inpatient for the EP days of my BEP and was able to have one person stay with me overnight.

            I'm getting my RPLND there Monday morning. I don't know how mobile I'll be, but if I can walk off my floor I'll show you around next week.
            Back pain Nov 2012
            Got Engaged 4/27/13
            Swollen neck lymph node 5/13
            Diagnosed with stage IIIB non-seminoma 6/13/13
            AFP 3,511
            Beta HCG 19,482
            Lung and lymph node metastasis
            Large tumor in abdomen caused my back pain
            Testicular tumor could only be seen with ultrasound
            4xBEP 6/25/13-9/10/13
            Graduated college 8/15/13
            Markers normalized
            RPLND and Orchiectomy 11/11/13
            Beta HCG: 38.5 on 12/17/13
            Start 4x TIP 12/17/13
            Got Married on 12/27/13
            Neuropathy: plans change. 3x TIP + 2x ATP

            Comment


            • #7
              Just checking in here, haven't been on the board too much lately.

              Good luck Selman. Keep us posted.
              Young Adult Cancer Survivorship by Steve Pake
              April is Testicular Cancer Awareness Month!
              www.stevepake.com
              Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
              My Survivorship Thread | All of my Blogs
              C
              ONTACT ME ANYTIME!

              Comment


              • #8
                Thank you all. I am going to be in Houston on Wednesday. I rented a suite at Candlewood Suites for 3 months, carrying the tradition from Indiana! My AFP is up to 194. I may do another round of CisCA (cispla., cyclopo., azitrom.) to reset bone marrow so that stem cell collection is more effective. Go figure... This is not third line therapy; it buys us time to keep cancer at bay until insurance approval. It also helps with the stem cell collection.

                I am ready to destroy some DNA. Telling my body not to fix it all.
                Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                4*BEP AFP 20 end of 4*BEP
                May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                Surveillance (blood & X rays) and all clear for 24 months
                April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                4xTIP - almost normal AFP, but started rising again
                2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                2 Lung Wedge Resections -

                Comment


                • #9
                  Hi Selman,

                  My husband is also being treated at MD Anderson. He had 3 rounds of TIP and is now on POMB/ACE but his doctor, DR. Tu has had us start the process for HDC & stem cell transplant. However, we just found out our insurance does not cover it because its considered experimental. When you said you were waiting on "insurance approval" I was curious if you were having the same problem.

                  Also they gave us a packet that included places to stay. there is a church ministry that rents apartments and lets people receiving long term treatment stay there for cheap. Let me know if you need more info about it.

                  Jen
                  Jen, wife of Sam, 33 years old

                  primary mediastinal pure yoke sac tumor
                  diagnosed Aug 2013
                  AFP - 24,000
                  3X- TIP regimen Aug 27
                  2x- POMB/ACE Oct 28 **first mention of HDC
                  AFP 136 Oct 28
                  AFP 12,000 Jan 14
                  2x VIP
                  **after three month battle with insurance, we are changing insurances
                  HDC and stem cell transplant march 1

                  Comment


                  • #10
                    Hi Jen,

                    I have had a very busy schedule running from test to test, and I was dealing with insurance and hospital. It took about 6 weeks for the whole insurance process to go through. In the meantime, I was on a single cycle of CisCA to manage tumor burden as much as possible and to kill the bone marrow so that stem cell collection is faster/better. I am sure it could have been faster. I felt both the hospital and the insurance people should have stayed on top of it better, but it went through eventually. I never got declined by insurance. There are a bunch of tests, and paper work that need to clear. That said, I believe my insurance covers High Dose Chemo by default. It may cover trials by default as well, but I am not sure. Sorry, I couldn't answer your question. Do you happen to have an advocacy company on your behalf through your or your husband's job? I had one, and they were very nice/helpful.

                    I got my Avastin injection yesterday. I go in patient to start HDC on 12/11. I am sure we saw each other in the corridors. I have been all over the place. I'd love to stop by and say hello.

                    I rented an apartment at the Equinox. It's OK. They have a shuttle to the hospital, which is great. I also needed a two bedroom as I live with my parents here. They seemed to have the best option when I searched it, and I went with that.

                    AFP is stable at 175 since last week. Negative CT scan. I am very anxious because this is HDC, and a trial, but I can't wait to start.
                    Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                    Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                    4*BEP AFP 20 end of 4*BEP
                    May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                    Surveillance (blood & X rays) and all clear for 24 months
                    April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                    4xTIP - almost normal AFP, but started rising again
                    2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                    Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                    2 Lung Wedge Resections -

                    Comment


                    • #11
                      Hi Selman,
                      Hang in there bud. The worst is yet to come, but I know you can get through it.
                      7/25/12 : dx stage IIIC- nonseminoma (yolk sac)
                      7/30/12-10/15/12 : 4xBEP
                      12/12/12 - 12/16/12: 1X TIP
                      1/10/13 - 2/21/13: 2X HDC @ IU
                      https://www.caringbridge.org/visit/Bryantlook

                      Comment


                      • #12
                        Before I forget, Indiana University's or MSK's HDC treatment is NOT considered trial, and I'd like to think most insurances would cover standard treatment. Just an FYI.

                        Also, there may be other venues that I am not aware of to help you financially. Livestrong could be one of these. I know they get some money through Movember, which raises tens of millions of dollars every year. I have no idea how they allocate the money, but they may be able to help you. I am sure others will chime in with more knowledge regarding Livestrong.

                        I apologize I have difficulty remembering people's posts, especially since the relapse. I was curious how you started with TIP initially as opposed to BEP, as I recall most people on the forums do. I think they have very similar outcomes at any rate. I will read through your posts now. So, don't reply if you already answered this elsewhere.
                        Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                        Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                        4*BEP AFP 20 end of 4*BEP
                        May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                        Surveillance (blood & X rays) and all clear for 24 months
                        April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                        4xTIP - almost normal AFP, but started rising again
                        2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                        Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                        2 Lung Wedge Resections -

                        Comment


                        • #13
                          Thanks, dude! I know the worst is yet to come. I don't want to jinx myself by writing all my concerns here. I know it will be TERRIBLE!!!
                          Originally posted by BJL View Post
                          Hi Selman,
                          Hang in there bud. The worst is yet to come, but I know you can get through it.
                          Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                          Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                          4*BEP AFP 20 end of 4*BEP
                          May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                          Surveillance (blood & X rays) and all clear for 24 months
                          April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                          4xTIP - almost normal AFP, but started rising again
                          2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                          Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                          2 Lung Wedge Resections -

                          Comment


                          • #14
                            Selman,

                            Thank you so much for your info about the insurance, other facilities and Livestrong. It is very reassuring to know that there are other options. We are still working with the insurance to see if they will cover it, but MD Anderson would be considered out of network for the HDC. Anyways, we will just wait and see..... something we are used to now.

                            Sam's doctor started him on TIP 1) because his lung has some compression from the tumor and 2) because he said BEP had never been that effective for the type of tumor Sam has.

                            My husband will be back for treatment on Monday, Dec 16th. It would be great to meet you if you are feeling up to it at that point.

                            We will keep you in our prayers.

                            Jen
                            Jen, wife of Sam, 33 years old

                            primary mediastinal pure yoke sac tumor
                            diagnosed Aug 2013
                            AFP - 24,000
                            3X- TIP regimen Aug 27
                            2x- POMB/ACE Oct 28 **first mention of HDC
                            AFP 136 Oct 28
                            AFP 12,000 Jan 14
                            2x VIP
                            **after three month battle with insurance, we are changing insurances
                            HDC and stem cell transplant march 1

                            Comment


                            • #15
                              Thanks, Jen. I will be inpatient at that point. I will be free to have visitors, although I don't know how I will be feeling like. I will message my room number when I know and we can try to meet.
                              Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                              Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                              4*BEP AFP 20 end of 4*BEP
                              May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                              Surveillance (blood & X rays) and all clear for 24 months
                              April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                              4xTIP - almost normal AFP, but started rising again
                              2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                              Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                              2 Lung Wedge Resections -

                              Comment

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