New....but not to EC

BigJim64
BigJim64 Member Posts: 2
edited March 2014 in Esophageal Cancer #1
Hi All....I'm the daughter of BigJim64. He doesn't know that I even logged him in to this amazing website. He'll find out later today.
Dad is 64. He was diagnosed with EC on October 16, 2009. He did radiation. He did chemotherapy. He had his esophagectomy on February 24, 2010. Yesterday, he was told that the cancer has shown up now in his lymphnodes...one in his chest and also in his pelvis. He goes for his PET Scan on Monday and starts chemotherapy via IV on Tuesday. He'll get chemo every three weeks as long as he can tolerate it. He has lost close to 10 pounds in the last couple of weeks and is in pain from the large lymphnodes pressing on his nerves etc. He is rail thin (170 lbs at 6'3")...one of the biggest concerns we have right now is keeping up his energy levels in order to take the treatments.

I've been reading about natural therapies/remedies and I'm wondering what if any experience any of you have had with them? What have you tried and what has worked? I understand that everyone is different but I refuse to leave any stone unturned.

Any and all information is appreciated.

I've read on this site for a while now and taken the information to my Mom and Dad....and now I need all the help I can get.
For your reference....they did not give my father a stage. We know that when he was diagnosed, the tumor sat at the bottom of his esophagus and there was no spread to any other organs or lymphnodes. Post surgery...we were told that all of the cancer was removed....his follow up tests showed the same thing....they showed concern for one lymphnode and kept an eye on it...that lymphnode now is cancerous.

Thanks again in advance for sharing your knowledge with me.

Lisa, daughter of BigJim64

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • cfight
    cfight Member Posts: 69
    #3
    Hi Lisa,
    I'm a big proponent
    Hi Lisa,

    I'm a big proponent of alternative medicine. It's been helpful in some of my health ailments over the years. He is wonderful and a well educated doctor on naturopathic medicines. I'm not sure if he consults over the phone, but he may be able to guide you on other options that are available. His website is below:

    http://www.lexingtonnaturalhealth.com/pages/Conditions/Cancer.html

    I'm sorry to hear about your father. I'm a daughter also. My father is 63 and was diagnosed in December with Stage IV EC.

    This is a wonderful site. I've found it to be extremely helpful and supportive in this journey! Your father is in my thoughts.

    Carolyn
  • tb7
    tb7 Member Posts: 52
    #4
    Clinical Trial . . .
    I would encourage you to check out clinical trials at

    http://www.cancer.gov/clinicaltrials

    My husband participated in a trial at Case Comprehensive Cancer Center, Ireland Cancer Center, University Hospitals, Cleveland, OH. The trial is still accepting participants, and you can check the trial specifics at

    http://www.cancer.gov/clinicaltrials/CASE-6507
    http://clinicaltrials.gov/show/NCT00732745

    My husband experienced a recurrence in a lymph node and in a lung nodule in December 2009. He was treated within the trial from January 2010 through May 2010. We are happy to report that he is now NED! The trial is very narrowly defined in terms of participants . . . the patient cannot have been previously treated for a metastases. There are several inclusion and exclusion criteria. We liked this trial because it had the benefit of including two generally accepted chemo agents as well as the investigational chemo agent. We felt the combination of existing drugs along with a new drug might bring good results, which, at least for now, has been the case!

    Having just recommended a trial, the big problem is that trials are mostly conducted at major cancer centers, which is great if you live by one, but not so great if you have to travel to get there. When we were looking in December, many of the trials were either for a single agent study and/or for patients who had previously been treated for a recurrence, but were experiencing another recurrence. Only a few of the trials were for patients who had not previously been treated for a recurrence. It sounds like your Dad is in the same situation that my husband faced, so it might be worth exploring a trial at this point, before he starts chemo again. We felt comfortable that we could try this trial and, if it did not achieve remission, we could try a different trial or use some of the normally used chemo agents.

    Hope some of this helps. Regards and best wishes for your Dad and your family,

    Trisha
  • BigJim64
    BigJim64 Member Posts: 2
    #5
    tb7 said:

    Clinical Trial . . .
    I would encourage you to check out clinical trials at

    http://www.cancer.gov/clinicaltrials

    My husband participated in a trial at Case Comprehensive Cancer Center, Ireland Cancer Center, University Hospitals, Cleveland, OH. The trial is still accepting participants, and you can check the trial specifics at

    http://www.cancer.gov/clinicaltrials/CASE-6507
    http://clinicaltrials.gov/show/NCT00732745

    My husband experienced a recurrence in a lymph node and in a lung nodule in December 2009. He was treated within the trial from January 2010 through May 2010. We are happy to report that he is now NED! The trial is very narrowly defined in terms of participants . . . the patient cannot have been previously treated for a metastases. There are several inclusion and exclusion criteria. We liked this trial because it had the benefit of including two generally accepted chemo agents as well as the investigational chemo agent. We felt the combination of existing drugs along with a new drug might bring good results, which, at least for now, has been the case!

    Having just recommended a trial, the big problem is that trials are mostly conducted at major cancer centers, which is great if you live by one, but not so great if you have to travel to get there. When we were looking in December, many of the trials were either for a single agent study and/or for patients who had previously been treated for a recurrence, but were experiencing another recurrence. Only a few of the trials were for patients who had not previously been treated for a recurrence. It sounds like your Dad is in the same situation that my husband faced, so it might be worth exploring a trial at this point, before he starts chemo again. We felt comfortable that we could try this trial and, if it did not achieve remission, we could try a different trial or use some of the normally used chemo agents.

    Hope some of this helps. Regards and best wishes for your Dad and your family,

    Trisha

    Thanks for the information!!
    Everyone....thank you for the warm welcome and for the information. I'll be printing out and giving to my Mom and Dad. I will be meeting them today at 12:30...Dad's PET Scan.

    Trisha. — forgive me, but what is NED?

    Dad is scheduled to start chemo tomorrow, which doesn't really leave us time to get into clinical trials. We live near Rochester, NY and I'm not sure if there are any going on around here.

    I will definitely look in to the links you all sent.

    Thanks again for everything!

    Lisa
  • tb7
    tb7 Member Posts: 52
    #6
    BigJim64 said:

    Thanks for the information!!
    Everyone....thank you for the warm welcome and for the information. I'll be printing out and giving to my Mom and Dad. I will be meeting them today at 12:30...Dad's PET Scan.

    Trisha. — forgive me, but what is NED?

    Dad is scheduled to start chemo tomorrow, which doesn't really leave us time to get into clinical trials. We live near Rochester, NY and I'm not sure if there are any going on around here.

    I will definitely look in to the links you all sent.

    Thanks again for everything!

    Lisa

    NED is a good thing!
    Sorry to have used the letters only. NED stands for "no evidence of disease!" It is a good thing, and what we want to see following treatment. It is what we all hope for and seek on this site. Good luck during treatment! I continue to hope the best for your dad and your family . . .

    Trisha
  • K_ann1015
    K_ann1015 Member Posts: 500
    #7
    tb7 said:

    NED is a good thing!
    Sorry to have used the letters only. NED stands for "no evidence of disease!" It is a good thing, and what we want to see following treatment. It is what we all hope for and seek on this site. Good luck during treatment! I continue to hope the best for your dad and your family . . .

    Trisha

    speaking of NED,
    speaking of NED,
    there is a wonderful couple in here battling this disease as we are Betty & Layne (Betty in Vegas). They have a neat site with positive cancer "wear"---the name is ClubNEDWear.com
    I just got my mom a a "caregiver Extraordinaire" T-shirt-she got it today loves it.

    Whenever I hear NED, I think of them---I can't wait until my dad hears NED form his doctors!!!!
    Kim

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