The Un-known Here we go Again

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  • depressed63
    depressed63 Member Posts: 61 Member
    #22
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    https://csn.cancer.org/discussion/comment/1709487#Comment_1709487

    I believe it's this trial. https://www.clinicaltrials.gov/search?intr=Testing%20the%20Addition%20of%20Duvelisib%20or%20CC-486%20to%20the%20Usual%20Treatment%20for%20Peripheral%20T-Cell%20Lymphoma

  • po18guy
    po18guy Member Posts: 1,474 Member
    #23
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    https://csn.cancer.org/discussion/comment/1709489#Comment_1709489

    Much of the progress being made is through the re-purposing of existing drugs. Increased knowledge of cellular division and interrupting the cell division of cancer cells has opened doors to the use of drugs originally intended for other conditions. In every case, there is considerable laboratory research which show the promise of the 'new' drug.

  • depressed63
    depressed63 Member Posts: 61 Member
    #24
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    https://csn.cancer.org/discussion/comment/1709478#Comment_1709478

    My husband was randomly selected in the clinical trial to the Group C that is the normal treatment (CHOEP). He had his first cycle in the hospital. He's also had a total of 4 blood transfusions and pleural effusion (750 cc) drained from his lung. He's at home and doing well far after having round 1. What symptoms got worse on each round. He still has an appetite. Eats and eats and is losing weight. Is that normal? He still has a lot of abdominal and groin swelling. Still taking the Lasix and 7 other meds. What helped everyone track the appointments and meds? Also, did you keep all the paper work. Over whelming when you include the billing.

  • po18guy
    po18guy Member Posts: 1,474 Member
    #25
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    Some numbered points, if this will help in all of the confusion.

    1. The high doses of Prednisone - a corticosteroid - are what provides the appetite.
    2. Swelling is frequent and can be serious during treatment. Elevation of legs and compression hosiery can help to prevent blood clots in the legs.
    3. Everything will start off slowly, as the treatment first has to halt the cancer's advance, then begin pushing it back.
    4. Weight loss is normal, with much of it being muscle loss from the steroids. The Prednisone is a necessary evil and will cause mood swings. But, cancer cells develop rapidly in inflamed tissue, so the anti-inflammatory aspect of steroids is needed in the battle.
    5. A good calendar or event reminder on your phone can help keep appointments and medical dosing in order.
    6. The pharmacy will have weekly pill organizers - which I have used now for 15 years.
    7. You might consider purchasing a small Rubbermaid or similar container to hold the various creams, lotions and other supplies that are necessary.
    8. A side note: He may have some odd immune system reactions, as lymphomas are cancers of the immune system. And to top that off, chemotherapy further suppresses as well as triggers the immune system, if that sounds possible.
    9. Keep the phone and email of the medical team at the read,as "things happen which cannot be predicted.
    10. Arrange for family, friends, neighbors or even co-workers to sit with him from time to time. This is a connection to "normal life" for him. In doing this, you might be surprised at who steps up, and who steps back. Sadly, this is normal human behavior.
    11. Use this time to get away, even for short periods - with family, friends etc. You need the psychological R&R to keep yourself going during all of this. Caregiver burnout is real and only makes the situation worse.
    12. He may be grumpy from feeling 'smothered' by the attention he is receiving, and want to spend time alone. This is a psychological manifestation which is pretty much unavoidable - possibly worse in men, who did not want to see doctor in the foist place.
    13. Understand that others will make uncomfortable or unfortunate comments, as they simply do not know what to say. The best friends will simply listen.
    14. You should soon see improvement, but it is a war and some skirmishes will be setbacks while others will be triumphs.

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