Jump to content

Leaderboard

Popular Content

Showing content with the highest reputation on 05/27/2020 in all areas

  1. jack14

    Keytruda

    Thanks May! Your comments are so encouraging! Surprisingly, I am feeling much better at the moment, no discomfort at all. Hopefully this is not UC but a temp thing, maybe a basic colitis flareup? If there is such a thing...... Anyway, I am scheduled to get my second infusion on Friday. Not sure if I won't ask for a delay yet...I began hurting throughout my entire abdomen last night, which was a new development, just before bedtime. The intensity told me that I sure wasn't going to be getting any sleep! So, after an hour of wondering if I needed to go to the ER or something, I reluctantly, took a 5mg tab of plain oxycodone without tylenol, and a zofran. I followed that with water and a couple of saltines. I had taken two tylenol an hour earlier. Anyway, I hate taking any opiod because they always lock me up, and I have a few that I didn't need from my lymph node surgery. Well, I was painfree within a half hour and was able to get to sleep. I awoke later, itching on my nose. It was a bit annoying for awhile, but bearable. I was worried that I might be having an allergic reaction, but didn't have any other symptoms. I finally fell back asleep. I have googled that since and learned something interesting about why opioids cause itching. Apparently the itching is related to the interaction with the immune system, and I know mine is supposedly in full force with this immunotherapy. That is basically why I was experiencing the itching, and it isn't an anaphylaxis thing, thankfully. I was tempted for awhile, to take some benadryl but didnt need to. Less drugs = better. Anyway, when I got up six hours later, my abdomen remained pain free, but that spot in my left side was back, tender and sharp! I walked (slightly bent over) around the house some and suddenly the pain was gone! No pain or soreness what so ever. That had to be gas! Which suggests to me, based on what I have researched, that I must have an area of colon that has a "pocket" where the gas accumulates? Anyway I don't know if that is something that will be an issue down the road or not. Here I sit two hours later and all is well. Two coffees and my meds with a couple of saltines and all is still well. Fingers crossed. Thanks again.
    2 points
  2. Welcome to the club Cathy, that no one wanted to join. I am new too, and I have found so many wonderful and kind souls here to confide in and learn from. It has been a blessing for me. I try my best to share as much about my treatment and experience as I can, to maybe help someone else, as they have helped me. Paying it forward, always. I am a member of several othe clubs which no one wanted to join too. I have been with Inspire (hope that's ok to mention) as a cardiac bypass survivor since 2011. I also belong to an abdominal aortic aneurysm club. I am a humpty dumpty six million dollar man I guess. My basic story here, is related a bit to yours I think. I was being followed for some lung nodules that were picked up on a scan after I had my aneurysm fixed. They failed to show any growth and then one showed up that was small but irregular at the top of my right lung (apex). A subsequent scan a few months later revealed some growth along with an enlarged lymph node on the opposite side of my chest in my arm pit. So, I was sent to confer with a thoracic surgeon. I saw one who is well known and experienced and he said the lung lesion was something that he could handle with minimal invasive surgery through what is known as VATS (video - assisted thoracic surgery). You might have experienced this yourself. He said he had done this a "zillion times" and he would take a slice of the lung out with the nodule (tumor or lesion) and have it quickly checked there in the hospital and if malignant, remove the upper lobe all together. He added that he was confident that it would result in a cure for me. But, the lymph node opposite side that needed to be evaluated and if malignant then I would not be getting the lung surgery. And that is what happened, it was a cancer that had migrated (metastisized) from the lung nodule. Point being, I was hoping to be where you are, but it wasn't meant to be. Although I am in a better place than many others, we all have hope here. The immunological drugs and the newer gene mutational targeting therapies are truly inspiring. I had the Foundation One Gene Panel and it offers some possible benefits for me down the road. There is always the chance that some new drug will come along that might attack my cancer through one of the identified mutations. If the Keytruda (Imunotherapy) is unsuccessful. My advice to you is to learn all that you can and become your own advocate and never ever give up! Those are the traits of a survivor and a hero. Share all you know because as a patient or as a clinician we have a duty to educate those around us, because we are stronger together. Someone else can have my soapbox.Pardon me for my poor grammer
    2 points
  3. May2

    Keytruda

    Glad to hear things calmed down. πŸ‘πŸ»
    1 point
  4. Hi Cathy and welcome here. I had a lobectomy in November 2016 and am well today, no evidence of disease (NED). If you feel comfortable, tell us about yourself. How can we support you? Bridget O
    1 point
  5. May2

    Keytruda

    Sorry to hear your having a hard time. That is scary 😟. Unfortunatly these drugs can have some bad side effects, but they can be temporary. I noticed My side effects varied after each treatment. I don’t know if ulcerative colitis can be one of the temporary side effects. When do you see your doctor next? Do you happen to know what mutation you have? this is good site for finding a trial in case you need to https://app.emergingmed.com/lcctacc/home I hope all goes well.
    1 point
  6. jack14

    Keytruda

    Well, after studying today, I fear I may be right about this abdominal pain being a Keytruda associated colitis. It is reported to be a side effect in a third of patients. I am going to ask my Onc about holding the infusion Friday unless it resolves. But it has been getting bad again. I am going to ask her about following the Cleveland Clinics algorhytm which I just downloaded to investigate. I sure hope I don't end up with ulcerative colitis or worse. It can lead to sepsis and death. Any prayers or thoughts are welcome
    0 points
×
×
  • Create New...