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Viewing 15 posts - 16 through 30 (of 50 total)
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  • in reply to: University of Chicago Trial FOLFIRINOX. #75126
    ladylinden
    Participant

    Hi Mark, I had the power port put in last Tuesday and I have a very large bruise, swelling and a large lump. I think the lump is the port. Maybe I should have the doctor check mine out. You said yours was immediately ready for use. Yikes, I can’t imagine mine being used. I was extremely sore the first three days but it’s a little better this 4th day. Thanks for the info and perhaps I need to get to the doctor for a check up.

    in reply to: University of Chicago Trial FOLFIRINOX. #75124
    ladylinden
    Participant

    Hi Ceci, Merci beaucoup to you! I love New Orleans and the people. I am thinking of going to Mardi Gras!

    I want to let you know I had the power port placed this past Tuesday. I am allergic to some metals so they had a plastic one in inventory. The doctor asked me what I was allergic to and he said a port made of titanium may cause a reaction. So, please discuss with Allison’s doctors if she has allergies to metal. It’s been five days since the power port placement and I have a large bruise and swelling. It is the size of a coffee cup plate. It was stitched and glued and the first three days there was a pulling sensation when I moved my upper right body, bent, laid on my right side. But that is getting better. The hospital gave me no other options except the power port. I understand that the port is definitely the way to go to avoid all the probing and picking time after time. I am happy to hear Alison has tolerated the Gem/Cis! I am starting the same chemo treatment on Thursday (if the port heals). A friend of my is a hospice nurse and we are going to visit them tomorrow and she will take a look at it.

    You mention that Alison will have the port placed one day before chemo? Truth be told, it’s been four days for me and I am so bruised and sore that there is absolutely no way I could accept a needle or anything in that area for chemo. Perhaps the doctor did not do mine correctly? You may want to discuss with Alison’s doctor as soon as possible. I am not even sure if my first chemo appointment on Thursday is going to happen.

    May I ask you one question: Alison had steroids.Did she have any swelling?

    This is a great site! It’s so nice to exchange information with people who have knowledge and experience on what we are going through. If you get a change, please let me know about the steroids. Thank you. Patricia from Michigan

    in reply to: My Friend Martha Leyva Has Passed #76971
    ladylinden
    Participant

    Dear Willow, Your memory of Martha will be a great tribute to her. You are a good friend. I still think of my Mother, Father and sister Kathryn who have all passed away. Not only have their bodies left the earth, my husband died on June 16, 2011. He was a wonderful man and a good example of what people should be. He was joyful, cool and kind. He will never never die as long as people who knew him continue to remember him and talk about him. I think of my dearly departed family each day and sometimes I feel their strong presence is with me, especially since my diagnosis. I wish you peace. Patricia Avery a/k/a LadyLinden

    in reply to: University of Chicago Trial FOLFIRINOX. #75112
    ladylinden
    Participant

    Hi, Thanks to all who posted what a person needs when going to chemo. Your information will make my first chemo not so worrisome. There is nothing like valuable advice! I’ve also received a lot of encouragement from the many members on this site. You have helped ease the sadness I have been carrying around. The hospital has been vague. They do not want to commit to answers because each individual is different (so they say). Turning to our members has been more helpful than anything I’ve read or been told at the hospital. Many Thanks! Patricia Avery a/k/a Linden, MI

    in reply to: I need advice on decision to do chemo. Pls. Help #76930
    ladylinden
    Participant

    Dear Marion, Lainy, , Kris V, Shelley, Dorien (Bompie), Kris00J,, Porter, Mary, PLC,

    Just a note to thank you all for your thoughtful advice and wisdom based on your own personal experiences. My husband died on June 16, 2011. He and I were in business together. I am use to making hard decisions and trusting my judgment and instincts. I realize now that he played a very important part in my decision making. We worked well together. Thank you very much for “stepping in” for him. He would appreciate you being there for me. Sincerely, Patricia from Michigan a/k/a LadyLinden

    in reply to: Met with my OBGYN #76492
    ladylinden
    Participant

    That is wonderful news! I am so happy for you.

    in reply to: Options for clogged stents #76555
    ladylinden
    Participant

    Dear Peggy, Thank you for your support. This is the 6th day since the stent and I am extremely sore and soooo tired! It’s almost like this last ERCP triggered some kind of reaction. Prior to placement I was feeling quite well. My energy is zapped and I have started chemo. I didn’t have a chance to talk to Dr. Khan about what’s next. I must admit that I am feeling better because I’m up and typing. So your brother responded well to chemo. I am glad to hear something positive. I’ve been dragging my feet about taking it. It seems like I need to talk with my oncologist because the way I feel now, after the ERCP procedure, the thought of chemo doesn’t sound like a good idea.

    in reply to: Options for clogged stents #76552
    ladylinden
    Participant

    Dear Marions, Thank you for your post. Yes, an abdominal x-ray was done to make sure the stents had not shifted. If I continue to have pain, I will definitely have to go back to the doctors. I have someone who will go with me to chemo. I have great friend who has been by my side all the way. I am fortunate to have him in my life. He has been an angel on earth. I have been a business owner (transportation and warehousing of products) but am retired. While being in business, I rescued several animals (including a goat!) from the streets of Detroit. I once had a large kennel, 2000 square feet. I have downsized now and have a home with a 1000 foot kennel; indoor runs, a/c, all the comforts of a home. I had hoped to outlive the 8 dogs and 6 cats I have. I once cared for 27 dogs. Now I have eight elderly dogs who still have quality of life. All my animals have been neutered/spayed and have lived to be seniors, just like me. They are a big concern for me. I would not want them euthanized, so I’ve hired a caretaker to care for them at my home. It would be great to see if the chemo would shrink the tumor and buy me some more time. Dying isn’t just about me but about the things I love, the animals being a very important part of my life. I hope for less pain tomorrow. I really am truly amazed at this website and all the exceptionally brave people facing cancer. I pray for that type of bravery.

    in reply to: Options for clogged stents #76551
    ladylinden
    Participant

    Dear KVolland. Thank you for your encouraging e-mail. I will print a copy for future reference. I may choose chemo because I am beginning to feel so much pressure even with the little food I consume. I am not quite ready to go to the peaceful place yet. I have paperwork to do. I just hope by tomorrow, my stomach achiness will be gone. I had no problem with the plastic stents. In fact, I couldn’t believe I felt so good, but these metal ones are giving me a hard time. Thanks again for your e-mail.

    in reply to: Pain in liver during chemo? #75858
    ladylinden
    Participant

    I know for a fact that the liver feels pain. On my first ERCP in June, 2013, shifted and I felt I had been stabbed. This caused the liver to spaz out! Also got the chills. I was back in the operating room the next week with jaundice, too. Yes, the liver does react to pain. They replaced the plastic stent with two longer plastic stents and was very comfortable for weeks.

    in reply to: Intro..mother of 47 yr old daughter with cc #76323
    ladylinden
    Participant

    Dear Betsy, Please accept my sincere condolences on the loss of your daughter, Paula. Sincerely, Patricia

    in reply to: My dad – CC survivor of 5+ years and counting #70803
    ladylinden
    Participant

    Hello Danny, I wish your Father days of better health so that he may continue his golf outings! I was diagnosed May, 2013 with Stage IV inoperable cholangiocarcinoma with metastasis to nearby lymph nodes. I have refused chemo because I am very afraid of the possible side effects. I am scheduled next week for the Gem/Cisp treatment. I wish I had your Father’s courage to fight. He has been through so much, what a great warrior! Your Dad is fortunate to have a son like you.

    in reply to: Options for clogged stents #76548
    ladylinden
    Participant

    From Plastic to Metal Stents: Late May, 2013, diagnosed with Stage IV cholangiocarcinoma, non-operable, metastasis in the nearby lymph nodes. ERCP from Plastic to Metal Stents….On 10/15 I posted that I had no problems with the placing of the stents. My 4th ERCP was scheduled for 10/16….Yikes! I spoke too soon! Two plastic stents replaced with two metal on 10/16. As day progressed, experienced nausea, could not even take a tsp. of liquid without vomiting green liquid, chills, extreme soreness, sharp pains throughout abdomen. Same evening went to emergency per doctor’s orders. My gastro doctor said to run a blood test to check for pancreatitis and administer fluids immediately. Morphine shot given and indigestion followed. Given shot to relieve burning. I also had an abdominal and chest x-ray. All blood work appeared normal except for one, which was not alarming. Sent home with anti nausea meds and Xanax. I have tossed and turned for the last 4 days, stomach extremely sore every where. Do not know why this happened. Today is a better day. Things can change so suddenly, in the blink of an eye. I am afraid of Chemo and just don’t know if I could stand the side effects. I’ve always been so healthy and independent. Scheduled for chemo next week, no port at this time, which I heard is the way to go to prevent infection. Between us, I wish for a quick death. Perhaps a blood clot. I cannot handle a slow painful death. My hats off to those who have the courage to fight because I do not….I just want it to be over with.

    in reply to: Options for clogged stents #76537
    ladylinden
    Participant

    I agree with Lainy. Tomorrow is my 4th ERCP since June 2013. Sad to say, sometimes it is the gastroenterologist who is placing the stent that is the problem. I have mine done about every 8 weeks with no infection or complications at all. I have had no chemo at all. I’ll keep you posted about tomorrow’s procedure. If I don’t write again, lol, you’ll know things did not work out. (smile)

    in reply to: Options for clogged stents #76536
    ladylinden
    Participant

    Peggy, There is a member on here named Lisa. Her last post was August, 2011. Go to her posts and read her blog. She is an inspiration to me and I am so happy that this organization has not erased her posts. Even though she is gone, she lives on…….

Viewing 15 posts - 16 through 30 (of 50 total)