Scan results - New direction

cher76
cher76 Member Posts: 292
edited October 2011 in Esophageal Cancer #1
Today we went to the the oncologist at MD Anderson to hear the results of the CTScan. They only had the scan itself and preliminary report, as it was just done at 4:30 the day before, put they were able to match it up with the last scan in August and show us the comparison. Luckily the scans showed a clear liver and lungs and only the same marks in the spine that last time were pronounced "resolved" mets to the bones. However the area of the esophagus at the junction showed increased thickening and enlargement. This is the concern as the tumor is continuing to grow there. The doctor said we had two choices. One - continue with a new chemo regime administered at home, which he said would offer only 10% success rate, and 100% side effects, or two - be referred to another group of doctors there at MDAnderson who work with phase I clinical trials. These would involve biological drugs tailored to stopping Rickie's tumor's spread. (he had been on Irinotechan chemo and erbitux, which is a monoclonal antibody) and would entail us staying in Houston for several weeks at first, and probably having to return for the treatments. He said that Rickie's body has had too much chemo now and is concerned about the side effects of more. When asked what he would do, he said take the trials. So Rickie told him that was what he wanted to do. We have an appointment set up tomorrow to meet with Dr. David Hong who is the medical director of the Clinical Center for Targeted Therapy. We have been told to expect to meet with him and his team of doctors and scientists for several hours tomorrow as they investigate to see if Rickie will qualify to be in a targeted study. They say that they have over 250 protocols at MD Anderson to choose from and it is the largest center in the world for this. We were also told that he could withdraw at any time if he does not want to go through with it. I know all of this has been weighing on him quite a bit, but he seems determined to hear what they might have to offer. I was just so glad to hear it had not spread anywhere else, that I feel that is a positive. The scary thing about this however is they are phase I clinical trials which is where they try to determine how much of the medication to give and what the side effects are. I feel like he has weakened considerably in the last week, and going three days with eating very little because of all the testing has not helped. I will let you know what we find out tomorrow.
Cheryl
Wife of Rickie dx stage IV EC, Oct. 2010

Comments

  • chemosmoker
    chemosmoker Member Posts: 501
    #2
    WOW a LOT to take on now!
    Cheryl,

    You AND Rickie tread gently and SLOWLY please going here together. I am glad he has such a fight in him despite the side effects and what he has already been through. Also great to hear the nets have been controlled. Maddening to hear that the esophagus has thickened and gotten larger. All so much to take in a think through I know.
    Just go slow.....MD Anderson is a GREAT facility-one of the best. You're in good hands.

    HERE is my share:
    My sister-in-law did a phase 1 study, with breast cancer, and Vanderbilt University Ingram Cancer Center, 7 years ago. She had a 5% chance or the like if it hadn't been for this trial, so you/I can see the benefits.

    She IS alive, and she was like stage IV or late IIIb with BAD growth that was hugely visible by the time she finally went to the doctors and quit hiding it, so they CAN do amazing things, but because of the VERY points you made about Rickie's stage I trial methodology, they gave her SO much of some of the chemo drugs that she has permanent liver damage and permanent nerve damage to her legs (Neuropathy in a BIG BAD way from hell) due to the unknown dosing until she taught them what the safe limits and dosages are now with current cancer patients eligible for these chemo drugs, and for the rest of the phase 2 and 3-the rest of the trial participants.

    What SHE did was a great service to OTHERS as now they know what does it right and have it all the way to final trial stage now and etc etc, but the price SHE paid is she can't walk, the cancer is cured but she has liver failure and probably won't make it another 5 years now.

    Just take all this with a BIG HUGE grain of salt, and think think think pray pray pray and talk to each other and of course back him up, but go in INFORMED. They just DON'T KNOW what the phase I results or side effects will even BE until much later so remember that. We are ALL guinea pigs to some degree, with every chemo and every cancer, as it is such a delicate balance between kill the cancer, don't kill the patient. At Phase I they are learning where the road IS, much further before they even GET to the balance part, and paint those lines down the center of the road to healing.

    I am NOT trying to scare you or be negative, you sound well aware of what stage I trials are all about. Just had to share my fears with you as I care about you both.

    God bless and God speed to you and Rickie,
    -Eric
  • cher76
    cher76 Member Posts: 292
    #3
    chemosmoker said:

    WOW a LOT to take on now!
    Cheryl,

    You AND Rickie tread gently and SLOWLY please going here together. I am glad he has such a fight in him despite the side effects and what he has already been through. Also great to hear the nets have been controlled. Maddening to hear that the esophagus has thickened and gotten larger. All so much to take in a think through I know.
    Just go slow.....MD Anderson is a GREAT facility-one of the best. You're in good hands.

    HERE is my share:
    My sister-in-law did a phase 1 study, with breast cancer, and Vanderbilt University Ingram Cancer Center, 7 years ago. She had a 5% chance or the like if it hadn't been for this trial, so you/I can see the benefits.

    She IS alive, and she was like stage IV or late IIIb with BAD growth that was hugely visible by the time she finally went to the doctors and quit hiding it, so they CAN do amazing things, but because of the VERY points you made about Rickie's stage I trial methodology, they gave her SO much of some of the chemo drugs that she has permanent liver damage and permanent nerve damage to her legs (Neuropathy in a BIG BAD way from hell) due to the unknown dosing until she taught them what the safe limits and dosages are now with current cancer patients eligible for these chemo drugs, and for the rest of the phase 2 and 3-the rest of the trial participants.

    What SHE did was a great service to OTHERS as now they know what does it right and have it all the way to final trial stage now and etc etc, but the price SHE paid is she can't walk, the cancer is cured but she has liver failure and probably won't make it another 5 years now.

    Just take all this with a BIG HUGE grain of salt, and think think think pray pray pray and talk to each other and of course back him up, but go in INFORMED. They just DON'T KNOW what the phase I results or side effects will even BE until much later so remember that. We are ALL guinea pigs to some degree, with every chemo and every cancer, as it is such a delicate balance between kill the cancer, don't kill the patient. At Phase I they are learning where the road IS, much further before they even GET to the balance part, and paint those lines down the center of the road to healing.

    I am NOT trying to scare you or be negative, you sound well aware of what stage I trials are all about. Just had to share my fears with you as I care about you both.

    God bless and God speed to you and Rickie,
    -Eric

    Thanks, Eric for the reply.
    Yes, what you wrote are my concerns as well. He wants to at least meet with them and hear what they have to offer. The "human guinea pig" is exactly what I thought.
    Cheryl
  • Heeran
    Heeran Member Posts: 171
    #4
    Keep us updated
    Hi Cheryl,
    You and Rickie are very brave and I'm so happy to hear that despite his weak state, you are still fighting EC to the end. I will keep your family in my prayers.

    Heeran
  • oriontj
    oriontj Member Posts: 375
    #5
    dh did a phase 3 clincal trial at the U of Chicago
    It was with erbitux, cisplatin and taxol. It worked for over a year. Phase 1 is so different.
  • cher76
    cher76 Member Posts: 292
    #6
    Met with the clinical trial
    Met with the clinical trial doctor today, and he was very reassuring. In fact Eric, he used the words "human guinea pig" saying that he would not let that be the case. He was very nice and talked with us extensively questioning Rickie about how the cancer has progressed and how we feel about it. The phase I clinical trial that he is suggesting is the following: Phase I study of combination of Nab-[aclitaxel, Gemcitabine and Bevacozumab in Advanced malignancies. The Government id number is NCT01113476 The trial consists of 3 drugs, Nab-paclitaxel (Abraxane), Gemcitabine, and Bevacizumab (Avastin)taken once a week for a 28 day cycle. Rickie will have to be approved to participate and they are checking our insurance to see if it will cover any of it. If not then there is assistance from the drug companies that can be sought. Has anyone had any experience with any of these drugs? Would like to hear others experiences.
    Thanks,
    Cheryl
    wife of Rickie, dx stage IV EC, Oct. 2010
  • Unknown
    Unknown
    #7
    cher76 said:

    Met with the clinical trial
    Met with the clinical trial doctor today, and he was very reassuring. In fact Eric, he used the words "human guinea pig" saying that he would not let that be the case. He was very nice and talked with us extensively questioning Rickie about how the cancer has progressed and how we feel about it. The phase I clinical trial that he is suggesting is the following: Phase I study of combination of Nab-[aclitaxel, Gemcitabine and Bevacozumab in Advanced malignancies. The Government id number is NCT01113476 The trial consists of 3 drugs, Nab-paclitaxel (Abraxane), Gemcitabine, and Bevacizumab (Avastin)taken once a week for a 28 day cycle. Rickie will have to be approved to participate and they are checking our insurance to see if it will cover any of it. If not then there is assistance from the drug companies that can be sought. Has anyone had any experience with any of these drugs? Would like to hear others experiences.
    Thanks,
    Cheryl
    wife of Rickie, dx stage IV EC, Oct. 2010

    This comment has been removed by the Moderator
  • cher76
    cher76 Member Posts: 292
    #8
    unknown said:

    This comment has been removed by the Moderator

    Sherri,
    Thanks for the info.
    Sherri,
    Thanks for the info. I will definitely check it out. I myself am not sure how this is different other than two of these are biological drugs, so they attack the cancer differently. The oncologist again told us that the cancer is smart and and adapts. So I am thinking that 6 months on one chemo is pretty good, but can see how the cancer might stop responding. I am also concerned whether Rickie can withstand more chemo. This week that we have been here in Houston he has become very weak and that really concerns me. I hate how you have to fast for so many of the tests and then they are always running late, so he was lucky if he got a full meal once a day, let alone the fluids he needed, and so of course I think he is dehydrated again. We are going home today so I will get him into the dr. office Monday morning for some hydration. He always seems to perk up after that. We also discussed the fact that he can only seem to take 1 can through the feeding tube and then is full for hours. The doctor suggested that we use a pump and feed slowly throughout the night. Surprise, surprise, this is what I wanted to begin with, and instead they gave us a gravity fed tube. He said that he thought we could get a pump to hook up to it as well. I am not sure if that is possible but am going to call the nutritionist Monday and see if it can be done. Just hoping I can get the five hour drive done today without any problems. I really worry about driving home since it is just the two of us, but he never wants anyone to come with us, and for some reason doesn't want to fly. Of course by the time you get to the airport 2 hours early and then wait for the flight and everything, you can almost drive it in the same time! Thanks again,
    Cheryl
  • NikiMo
    NikiMo Member Posts: 342
    #9
    cher76 said:

    Sherri,
    Thanks for the info.
    Sherri,
    Thanks for the info. I will definitely check it out. I myself am not sure how this is different other than two of these are biological drugs, so they attack the cancer differently. The oncologist again told us that the cancer is smart and and adapts. So I am thinking that 6 months on one chemo is pretty good, but can see how the cancer might stop responding. I am also concerned whether Rickie can withstand more chemo. This week that we have been here in Houston he has become very weak and that really concerns me. I hate how you have to fast for so many of the tests and then they are always running late, so he was lucky if he got a full meal once a day, let alone the fluids he needed, and so of course I think he is dehydrated again. We are going home today so I will get him into the dr. office Monday morning for some hydration. He always seems to perk up after that. We also discussed the fact that he can only seem to take 1 can through the feeding tube and then is full for hours. The doctor suggested that we use a pump and feed slowly throughout the night. Surprise, surprise, this is what I wanted to begin with, and instead they gave us a gravity fed tube. He said that he thought we could get a pump to hook up to it as well. I am not sure if that is possible but am going to call the nutritionist Monday and see if it can be done. Just hoping I can get the five hour drive done today without any problems. I really worry about driving home since it is just the two of us, but he never wants anyone to come with us, and for some reason doesn't want to fly. Of course by the time you get to the airport 2 hours early and then wait for the flight and everything, you can almost drive it in the same time! Thanks again,
    Cheryl

    Did a little poking around
    Hi Cheryl,

    I have become somewhat of a research geek when it comes to EC, I have my undergraduate in Biology and I enjoy reading studies about new therapies. I googled this phrase "Nab-paclitaxel, Gemcitabine, Bevacizumab". If you do this you will see there have been phase two trials with these drugs for both first line and secondary line for metastatic breast cancer. Overall I see a link between the research that happens for breast cancer and for EC, probably due to the HER2 factor. I am not medically trained, just someone who likes research.

    Like Sherri said Bevacizumab can have some serious side effects, but like every drug not everyone reacts the same way. When Jeff was first diagnosed we were offered a clinical trial that included Avastin (bevacizumab). We declined the trial because we wanted the concurrent radiation and chemo, but have always said that if the cancer was to return our first reaction will be to look for clinical trials.

    I know this is a difficult decision, but it appears that you are going in with open minds and being cautious as you should. One last comment, I have seen a real shift in research from using the platinol drugs in favor of biologicals. It appears it is a new front in cancer research. We never know what may be waiting for us right around the corner....hopefully it is a CURE!!

    Niki
  • unclaw2002
    unclaw2002 Member Posts: 599
    #10
    Cheryl,
    Email me if you want
    Cheryl,

    Email me if you want to speak some more --- perhaps you want to get another opinion. I know when Dad was on a similar trial as Rickie, witht the Eribitux & Irinotican I asked Doctor Gibson at UPMC what would happen after the first course. He said if the cancer was stable or had been reduced then it Dad would have gone on Maintenance Erbitux indefinately until it no longer worked (the assumption being that the treatment was beneficial in helping keep the cancer stable --- I am unsure from your post if Rickie's cancer is stable). We all know that the cancer finds ways eventually around these types of drugs. So it was a continuation of the clinical trial but given the risks associated with Stage III trials Dad would only consider Stage II or III because of the risks associated with toxicity.

    Best,
    Cindy
  • cher76
    cher76 Member Posts: 292
    #11
    NikiMo said:

    Did a little poking around
    Hi Cheryl,

    I have become somewhat of a research geek when it comes to EC, I have my undergraduate in Biology and I enjoy reading studies about new therapies. I googled this phrase "Nab-paclitaxel, Gemcitabine, Bevacizumab". If you do this you will see there have been phase two trials with these drugs for both first line and secondary line for metastatic breast cancer. Overall I see a link between the research that happens for breast cancer and for EC, probably due to the HER2 factor. I am not medically trained, just someone who likes research.

    Like Sherri said Bevacizumab can have some serious side effects, but like every drug not everyone reacts the same way. When Jeff was first diagnosed we were offered a clinical trial that included Avastin (bevacizumab). We declined the trial because we wanted the concurrent radiation and chemo, but have always said that if the cancer was to return our first reaction will be to look for clinical trials.

    I know this is a difficult decision, but it appears that you are going in with open minds and being cautious as you should. One last comment, I have seen a real shift in research from using the platinol drugs in favor of biologicals. It appears it is a new front in cancer research. We never know what may be waiting for us right around the corner....hopefully it is a CURE!!

    Niki

    Thanks, Niki!
    Yes, I have noticed too that it seems like EC and breast cancer share a lot of the same treatments. As you said, not everyone reacts the same way to the different kinds of treatment, so you just never know. There are so many factors that play into any treatment, it seems nothing is for sure. Just as in surgery, some people sail through the MIE while others have nothing but problems, and the same goes for the Ivor Lewis. Nobody gets a guarantee one way or the other. At this point Rickie is just not ready to give up. His cancer is only at the junction and the bone mets have resolved. It is not in his liver or lungs or anywhere else that we know of at this time. He wants to do this, not only for what it may offer him, but to maybe help others. As he said to me "it's a crap shoot, what have I got to lose." If it were not for clinical trials none of us would benefit from any drugs. Someone has to have the courage to be willing to give it a try. We have been told we can pull out at any time if he does not feel that it is working or if he feels the side effects are too great. And yes, the biological drugs do seem to be what holds the most promise. Please keep us in your prayers,
    Cheryl
  • Wife of patient 50378
    Wife of patient 50378 Member Posts: 124
    #12
    Cheryl
    I hope this post finds you well, you guys have been through alot this year.The purpose of my post is two fold. First, how is Rickie? Are you still considering a clinical trial? I hope there some peace of mind there.
    Secondly, could you provide me with information regardng your experience with MD Anderson in Houston? Thank you so much in advance.
    My thoughts are with you, I hope you guys have come to terms with treatment options.

    Cherly, Have a Wonderful Day!
    best,
    Sal

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