• BoiseB's Avatar

    BoiseB wrote on BILLY22's wall

    Hi Billy, How is your wife. as I remember she had the same kind of cancer I have. As I remember you posted a picture of the two of you at a cancer event awhile ago.

    2 Comments
    • BILLY22's Avatar
      BILLY22

      Hey, this is Loretta. I happen to be right beside Billy when he pulled up this message. As he has probably told you, I was diagnosed with Peritoneal Carcinomatosis, a Stage IV cancer, and then when I went to the University of Pittsburgh Med. Ctr. where Billy had his Esophagectomy, I was also diagnosed with Ovarian Cancer, Stage IV. That was in November of 2012. Well since then it's been chemo, Cytoreductive Surgery in July of 2013, then targeted radiation by Cyberknife in 2014, then two more regimens of chemo consisting of Carboplatin/Taxol in years 2015, and 2016. Now my tumor markers are rising again, but I'm taking the summer off even though the cancer isn't! So far I've been platin sensitive so it has served to knock back the cancer for a time. However, my markers began to rise again, in 4 month's time. But I've talked it over with our oncologist. I don't know what I will do. I am a Christian and I know that my times are in His (the Lord's hands) I have peace in my soul even though cancer is at war in my physical body. So my long-distance vision assures me that when I depart this life, I'll wake up in Heaven. Only the body will be placed in the grave, but my spirit is eternal.

      Billy takes me every place I need to go. We work here at home all the time. I just finished making some grape and strawberry jellies last week. We had a tomato patch that has given me a bunch of tomatoes so I'm planning to make salsa. I love to cook. Billy helps me around the house, and it now takes two of us to do what I used to do all by myself. You know about fatigue--I'm constantly tired, but I don't stop. I just go till I can't go anymore, then I sit down.

      I correspond with a lot of people on CSN. org, the American Cancer link (Cancer Survivor's network) I answer on Peritoneal, Ovarian and Esophageal links. It takes a lot of time for me to compile my answers which for the most part are very lengthy. I do a lot of research and try to inform the people of what to expect. I'm not on there for my health, I'm on there for them. Ever since Billy was diagnosed with EC, I said, "If we live through this, we're going to help as many people as possible." We are committed to at least making something good come from this cancer.

      Incidentally, my last CT scan showed a node near the trachea, and who knows what will show up next. Billy tells me that you are Stage IV as well, so I don't have to tell you anything! We just have to thank the Lord for the time He has given us, and remember that a better day awaits. Of course, there's no ideal time to leave those we love, but I can't dictate to the Lord what my future here on Earth will be like. Wouldn't we all just like to go to sleep, feeling good, and in our "right mind", and wake up in Heaven? But we'll just make the most of the days we feel good, and hope that the little quirks, aches, etc. will subside and we will have a long period of "progression free survival!" We are both "realists" and that makes life more bearable.

      I do believe that God wrote the song, "I beg your pardon, I didn't promise you a rose garden!" And if we keep that in mind, we can sing even when it's raining. There is a saying though not original with me that goes like this:

      "Life isn't about waiting for the storm to pass--it's about learning how to dance in the rain."

      So God wants us to seek His face in the storms of life and on the good days. I feel blessed to have lived so long before I came down with something terminal. And because my "long-distance" vision allows me to see Heaven, I'll just settle for what the Lord allows while I'm still on this earth. Now I'd rather be on a cruise, or some far away vacation but for right now I'll settle for getting all the dust off my furniture here at home. I did see a sign once, I should put it at my door. It said, "You can touch the dust, but PLEASE DON'T WRITE IN IT!" :)

      Okay, am glad you wrote, and if you want to write to me and chat send me a message at: [email redacted].

      I write on the CSN board as Loretta Marshall. Now even though I'm old, I'm still young in my mind. We can always thank God for being in our right mind. As you well know, we stop taking things for granted when we get diagnosed with some illness we can't control. Simple things like a sunrise and a sunset, used to be a given, but now I realize that each day I see another one is another day the Lord has given me.

      Mark Twain wrote, "Wouldn't it be nice if we could be born at age 80 and work our way back to age 18?" I don't want to part with all the wisdom my years have given me, but I would like a younger body--don't we all?

      Okay, Billy and I are going to the store. Seems I'm always doing "one more thing and finally when rush-hour traffic comes", I'm ready to go. Finally, I'll say goodbye for now. Thanks for asking about me. It's good to know that the women Billy is talking to on the web want to know how I'm doing. I don't look over his shoulder, so I never know what he's saying. But he's a "keeper". We've been married for 55 years now and can pretty much read each other's minds. He's one of a kind and I love him. So bye for now.

      May God's peace and blessing rest on you as well,

      Love Loretta

      about 1 month ago
    • BoiseB's Avatar
      BoiseB

      Hi Loretta, It was so good to here about you. Billy does talk about you? I will keep you in my prayers. Oh dear, I would never want to do the Merlin thing and youthen. Cancer has really been one of the least difficult times in my life. I am stage IV for esophageal cancer my girly cancer is only stage II but it is grade 3 which is very aggressive, but it looks like I will make the five year benchmark. I attribute it to the prayers of many people. I thank God for the eleventh inning. Thank you so much for responding you are as lovely as your picture

      about 1 month ago
  • BILLY22's Avatar
  • BILLY22's Avatar

    BILLY22 wrote on SisterWarrior's wall

    Sisterwarrior

    Check this out it is in your neck of the woods (UCSD).
    Something you should be familiar with.

    https://health.ucsd.edu/specialties/cancer/programs/gastrointestinal/Pages/Esophageal.aspx

    1 Comment
    • SisterWarrior's Avatar
      SisterWarrior

      Actually a couple of weeks ago we met Dr. Kelly and she told us all about that procedure and at the time had said that more than likely my brother would be a candidate as long as the spot on his liver was not cancerous meaning he would still be stage 3. It turned out as I told you that his liver spot was not cancerous, but there is a lot of lymph node involvement. I'm going to have to ask his team of docs as to why they no longer think that he is a candidate for surgery. I very much liked Dr. Kelly, she was the only one that said confidently that she didn't believe his cancer had spread to the liver yet (both his Radiologist Dr. Murphy and medical oncologist Dr. Patel were fully convinced it was cancer and so therefore were being kinda doomy). I just have to keep asking questions, demanding the best care and get all the information I can get my hands on so I can continue helping my brother fight for his life. Thank you for sharing this link :).

      about 1 month ago
  • BILLY22's Avatar

    BILLY22 wrote on SisterWarrior's wall

    Hello, I like it you must be your own advocate in this battle you need to make demands of your Drs.

    Nausea, my lovey wife who is going on 4 years of stage IV Ovarian cancer used KYTRIL (Granisetrn) but she took 1 when her feet hit the floor each morning regardless of the feelings and it worked for her and no side effects.
    .
    A port is a must for chemo(I had 2 - 96 hour infusions of 5FU/ CARBOPLATIN, and 25 radiations treatments).
    I had no side effects to speak of from my treatments.

    I suggest a j-tube over a g-tube for getting the nutrition, where it belongs, you can throw up what goes in a g-tube.

    I had local lymph nodes effected (T3N1M0) and 22 removed during the esophagectomy. What is his complete staging numbers?

    You need to keep good records and copies of all scans in case you want to go somewhere else, these are always accessible only if you ask for them. I am sure you will get more suggestions as you go along this EC journey. You need to know as much as you can about your diagnoses Keep up the good work..

    Wishing you and your brother the best, you are already making progress that is good. Is there a support group in the area?

    A 14 year survivor Billy22

    1 Comment
    • SisterWarrior's Avatar
      SisterWarrior

      I definitely think the J-tube would be the way to go so we wouldn't risk him throwing anything up and losing nutrients since that has been a problem. We just talked to a radiologist today who said they would refer us to a nutritionist but I still think the J-tube should be done so I will voice that. I don't know exactly how many lymph nodes are involved because the medical oncologist didn't say he just said "late stage 3". I need to ask for copies of the reports and records so I can look at them and go over them with our social worker so I can have a clearer understanding of his diagnosis and what not. Again I appreciate all of the help, support and kind words :).

      about 1 month ago
  • BILLY22's Avatar

    BILLY22 wrote on SisterWarrior's wall

    Hi Folks
    Glad you got on board, we need some info from you, you should be staged by now? Do you have a oncologist, radiologist? What type of symptoms are you having? Are you currently in good health? You can be of help to others also going down this road to recovery.

    Get a second opinion by all means, and you should be aggressive in dealing with EC.

    Billy an 80 year old, 14 year survivor, stage T3N1M0, had MIE at UPMC May 17, 2003.

    There is life after EC, lets talk, time is moving on.

    3 Comments
    • SisterWarrior's Avatar
      SisterWarrior

      Thank you for posting on my wall, it means so much to me to have support from other people going through this or having been through this and it gives me so much hope. So he just got fully diagnosed yesterday as late stage 3 and they've already started him on radiation but told us that surgery is not an option and that currently my brother is too weak to take the chemo. He's not been able to eat much and has a hard time getting things down and keeping them down. He's 6'4 and now weighs 150lbs. He's otherwise healthy and also young (he just turned 35 right before finding out about the cancer). The doctor seems to have a negative outlook and I don't feel like he's fighting hard for my brother's life. We don't want to just give up but I'm not sure how to properly proceed so any advice you can give would be greatly appreciated

      about 1 month ago
    • BILLY22's Avatar
      BILLY22

      Hi Folks

      Number one on the agenda is a second opinion, find you a surgeon and facility that are familiar with EC. You need to demand a j-tube to supplement his diet.
      I think when he gets his energy back he will be able to tolerate chemo and radiation.

      He could be dehydrated see if you can get him a hydration routine going. He is young and will bounce back with some suggestions from his Drs.
      Maybe you need to change Drs. I say if he is stage 3 he should be doing chemo and radiation and then an esophagectomy if he has no metastasis. Stage III is normally a ok to go trimodal .

      Did they say why no surgery? He needs food and hydration for energy.

      .A stage III (T3N1M0), 14 year survivor, MIE at UPMC.

      about 1 month ago
    • SisterWarrior's Avatar
      SisterWarrior

      Thank you for replying to me and also congratulations on being a long term survivor of this horrific beast :)! He actually got an IV infusion for hydration yesterday and they gave us a new anti-nausea to try called Reglan but it actually just made his nausea worse, so I'm not giving him that anymore. He was taking Zofran for nausea, but that was making his already terrible constipation problem worse, so I think I'm going to try marijuana oil for his nausea (I live in California so it won't be hard to get). They said that surgery is not on the table right now because of how many lymph nodes are involved, but we did find out this morning that the doctor changed his mind about going forward with chemo, so he will have a port placed in his chest on Wednesday. If in the next couple days his nausea doesn't improve and he continues to not really take in any nutrition then I am going to definitely demand that they give him a Jtube so that he can receive proper nutrition and hydration moving forward in his radiation and chemo treatments. Right now he has only 14 total radiation treatments scheduled and I'm not sure about his chemo schedule yet because we just found out his doc changed his mind. I also asked his medical oncologist to test him for HER2 positivity so if he is he can take Herceptin (someone else told me to ask that), so that's being done. He's actually going to UCSD and has a team of docs that specialize in this type of cancer and his medical oncologist has great credentials, but a terrible bedside manner and I feel like we had to push him to fight. If going forward in the near future he continues to prove to be negative though I will look elsewhere for another opinion because I do not want to mess around with my brother's life. Thank you again for any and all advice :).

      about 1 month ago
  • BILLY22's Avatar