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Thread: Jim's Update

  1. #11
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    Rose, I have been praying every night for Jim and strength for you. I had so hoped that things were moving along at a good clip now. I will continue to pray for a good outcome with this treatment.
    Virginia

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  3. #12
    Distinguished Community Member tic chick's Avatar
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    dear rose,

    it's unfair that people in the latter stages of cancer have to go through the protocol of failed treatment before they are allowed to be part of a drug study that seems to be helping others.

    my thoughts and prayers are with your family and i ask God to give you continued strength to deal with everything that you must and that He keeps you well in health and faith.

    bless you all!
    jeannie
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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  5. #13
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    Rose,
    My heart goes out to you and Jim. Cancer is an insidious beast.

    I'll be keeping you in my positive thoughts.

    Jendie
    I've been a member of this forum during its different incarnations since I was dx in 9/98


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  7. #14
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    ((((((Hugs to All)))))) ~

    The targeted biopsy testing is off the table as of yesterday. Jimís oncologist, Dr. P, said there isnít time for Jim to wait for the process of acceptance into the study and the testing. The cancer is spreading at a rapid rate.

    This afternoon, Jim had a CT scan. She wants to assess thoroughly what the x-ray revealed.

    On Thursday, Jim will start immunotherapy with Opdivo.

    http://www.opdivo.com/advanced-nsclc

    (For more information, click on ďFrequently Asked QuestionsĒ at the Opdivo site.)

    Along with several other new cancer drugs, Iíve seen Opdivo advertised on TV. Dr. P said that Keytruda hasnít been approved for treating Jimís type of lung cancer, but Opdivo has been, with good results.

    PROGNOSIS

    I was able to have a brief conversation with Dr. P on the phone yesterday. When I asked her what Jimís prognosis is, she replied, ďNot good.Ē

    Thatís when my entire being felt like I was free falling without a parachute or a safety net. Itís impossible to describe.

    I asked her about the tightness in his chest and intermittent pain. Is that the cancer spreading? ďYes.Ē

    I asked her about his sore foot, for which I gave him 2 Tylenol that morning before his appointment. Is that neuropathy from the Chemo? ďCould be. But give Ibuprofen, not Tylenol.Ē But Advil causes him to cough up blood. (She told us no Advil at our first appointment with her.) For neuropathy, she said, itís better than Tylenol. She also mentioned that she could prescribe a drug, ďBut he doesnít want to take it.Ē I asked which drug. ďGabapentin.Ē Neurontin, as I know it.

    Jim told me he didnít mention his foot pain, because it had subsided when he got to her office. That doesnít sound like neuropathy to me. Perhaps his RA acting up, and Tylenol helped.

    I finally connected with the Nurse Navigator. She was sweet and sensitive to my emotionally fragile state. When I told her that I was fearful of the side effects of Opdivo, she calmly said, ďThe majority of patients Iíve known, who have taken Opdivo, have done very well on it. They complain of less side effects, even say that they donít feel like theyíve been given anything, compared to Chemo. Much less nausea than Chemo. Less restrictions than Chemo (like not having to flush the toilet twice). Most patients tolerate it very well, and if Jim did well on Chemo, I think the odds are in his favor that he will do well on Opdivo.Ē

    All of Jimís vitals are excellent, and Dr. P commented that Jim is remarkably well, considering what is happening inside of his body.

    PAIN

    Last night, Jim had excruciating pain in his left lung, the location of the initial tumor. Along with the tightness in his chest wall, he was in agony. He took 2 Tylenol, and it began to subside to a tolerable level. He was able to sleep restfully and undisturbed for about 5 1/2 hours this morning. He managed the CT scan without too much discomfort or pain, and he says that his pain comes and goes and that heíd rather not take pain meds.

    When I tucked Jim in bed this evening, I told him that I didnít want him to have any pain nor to suffer in any way that can be lessened.

    During the past 4 months on this journey, every doctor, nurse, technician, etc. has asked him about his pain. And he always responds: ďWhat pain? I donít have any pain.Ē He told me several times that the way everyone goes on about pain, he was wondering what kind of pain he was eventually going to have. Now we know.

    We are hopeful that Opdivo will mitigate that pain, as his body works to kill off the cancer cells.

    JONíS PUMP & CIRCUMSTANCE

    Yesterday morning, at the same time that our dear friend and ďadopted son" pulled up to take Jim to see Dr. P., another car arrived, and the driver handed Jim, who was in the front yard, a box containing a new feeding pump for Jon. Why? Well at 2:00 a.m., Jonís feeding pump went berserk, and I spent 45 minutes trying to get it to work.

    Jon has had insomnia for 2 days, and he was ready to go to sleep, but I was messing with his broken pump, trying to eke out more nourishment for him.

    I gave up. Jim got up about 3:00, and we agreed that he would give Jon a bolus feed of 50 cc every hour, until I could get a new pump delivered before noon. I went to bed at 4:00, and Jim came in at 5:00 to tell me that Jon was asleep. When I got up at 8 to call the nursing service pharmacy about the pump, Jim said that the pump started working at 6:00. I still called, because I could not cope with another night of worrying about his pump going bonkers. Thankfully, this one works fine, and itís a newer version with better features.

    Additionally, while Jon is peeing very well, heís still peeing over his catheter, which means that a larger catheter wasnít the solution. Or he needs the next larger catheter. Or is it something else?

    DENIAL OR ACCEPTANCE?

    As I drove to the grocery store and got gas for our van today, I thought about how much everything has changed in 4 months. By all rights, I should be on the floor right now, sobbing, unable to move. But Iím not. I keep going each day, doing what is necessary, urgently needed, and I tend to as much as I possibly can with laundry and housekeeping, cooking, bills, and UGH! the taxes waiting for me to finish them. In addition to caring for Jim and Jon, of course.

    Maybe Iím running on adrenalin. But this how I roll now, after 47 years of nonstop crises. I do what has to be done, and I hold it together, so I donít cave.

    And when the grocery store cashier asked me, ďHow is your day going today?Ē I smiled and answered, ďNot too bad. Thanks. Howís your day going?Ē

    I put on my Mask in public. In a way, my answer was accurate, since Jim was feeling better and had slept, Jon slept, and we have a new working pump. Sometimes a miracle is simply having a better day than yesterday. And I cling to these miracles.

    Jim and I are hopeful about Opdivo, and while we canít really expect a cure, stopping the progression of the cancer would be a MAJOR MIRACLE. It has worked for others, and it's similar to Keytruda, which has worked for Jimmy Carterís brain and liver cancer so far.

    We arenít giving up. Weíre going to keep fighting the good fight, with your help and prayers.

    Let me leave you with this image:

    Before Jim went to bed last night, he watched ďThe Big Year,Ē with Jon, about bird watchers. When it concluded, Jim imitated bird calls and pranced around Jonís room flapping his arms like wings. I was in the garage doing laundry, and I could hear both of them laughing.

    Later, when I tucked Jim into bed, he held my hand, ďI donít know what Iíd do without you.Ē

    ďI donít want to know what Iíd do without you.Ē


    THANK YOU ALL

    For your love, prayers, support, concern, and for sharing our journey and reading my verbose updates. I love you all, and you are in my prayers too.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  9. #15
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    Rose, I'm so sorry to hear all of this... I come here always praying as I open the page for something positive and good. Even a miracle! I wish I could help! I feel so close ye so detached. I hope the new therapy helps and doesn't cause discomfort. Thank you always for the updates. I pray that you feel me sending positive energy, prayers and many many warm hugs.
    Mary Grace

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  11. #16
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    Hi Rose,

    I’m so so sorry things have gotten worse! I’m so sorry Jim has pain! It makes me feel awful to think of him in pain. I actually know a woman who survived a type of cancer in her leg. She said her leg pain was almost unbearable but that she did not want pain medication because the pain let her know she was still alive and therefore able to fight the disease. I think I remember in your other thread about Jim’s cancer you said that the doctor had mentioned she could use radiation to shrink the tumor and relieve pain? Is this still an option??? Why is the doctor not doing this??? Especially if the cancer is spreading rapidly?? I have heard very good things about Opdivo and I think Jim will do well on it. As for why you are not a crying wreck, I have a theory. You have simply gone into survival mode for your own sake and the sake of your family. You are living in the moment and doing exactly what you need to do right now. The emotion will likely come later when things have calmed down and you have a chance to slow down. In response to your other post you are completely right about "progressive discloser"! I am praying Jim gets pain relief and success with Opdivo! I am praying for your strength and comfort! Never give up! Please keep us updated and feel free to vent to me anytime. I'm also glad Jon got a new hopefully better pump.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  13. #17
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    ((((((Hugs to All)))))) ~

    Jimís Opdivo infusion went well on Thursday. His lovely nurse talked to me before Jim left to let me know that Jim had shared our life story with her, and she is deeply touched to know about us. She wanted to see photos of our family, which Jim didnít have with him. Next time.

    RA EXACERBATION

    Unfortunately about 2 hours after he came home, Jim began having excruciating joint pain. Neck and shoulders, elbows, wrists, fingers, knees, and ankles. Debilitating pain. He started taking Advil, which helped a little, and I applied Tiger Balm to the affected areas. When that didnít work, we switched to paper towels soaked in Witch Hazel taped to the areas. That seemed to help more. He kept up with the Advil. We increased his CBD oil.

    Yesterday, Friday, was a long day of managing the pain. I called Jimís infusion nurse, and she said that immunotherapy will cause an exacerbation of any autoimmune disorder. (Why havenít I read this in any of the Opdivo literature? Why didnít Jimís oncologist tell him this?)

    She advised that we continue with our treatment choices. She said she would email Jimís oncologist, and that we should call her on Monday to report progress or deterioration.

    Because every infusion of Opdivo could cause a worse exacerbation, she said the doctor may decide to stop the infusions.

    Holding back the tears, I said, ďBut this is his last chance.Ē

    ďI know,Ē she said softly. ďLetís just keep doing what youíre doing. Youíre a great nurse, and you know what to do. We will pray that the pain subsides.Ē

    Jim told me that he would rather tolerate this pain than give up on the Opdivo. He said, as he has many times, ďIím not afraid of dying. Iím afraid of leaving you and Jon.Ē

    IMPROVEMENTS

    Jimís appetite is excellent, and Iíve been feeding him his favorites ~ pancakes, mashed potatoes, Field Roast, fresh steamed veggies, eggs/veggie sausage/hash browns, yogurt with fresh berries and canned peaches/flax seed oil. Heís drinking 2 Orgain chocolate shakes/day, 16 grams of protein per shake.

    His temperature is normal, and his SATS and heart rate are stable and very good.

    This morning he was feeling better, but as the day waned, and the Advil and CBD oil wore off, he felt worse. We stopped Witch Hazel and started using Aspercreme. He is exercising his legs with lifts and bends in bed, as well as his fingers and wrists. He has developed a fondness for Organic Gatorade, but I keep pushing water, because it is the best choice to flush toxins out of the system.

    He is sleeping downstairs on the futon nest. Iím so thankful that we bought a new futon frame for our very sturdy futon mattress, before all of this came crashing down on us. We call it his ďnest,Ē because it has 3 blankets from very special loved ones. He has the living room BIG TV and remotes, heís snug and very comfortable. Itís also easier for me to care for Jim and Jon, when they are on the same floor. Less running up and down stairs for me.

    DAY INTO NIGHT INTO DAY

    None of us have normal sleeping patterns now.

    Iíve been staying up until 5 a.m., to care for Jim and do his shift work for Jon. I wake up about 7 (dawn), check on Jim and Jon and return to bed and my heating pad, where I offer my morning prayers. My day begins at 8, and if I can, I take my walk for about 20 minutes, my respite, where I can commune with nature, pause at the lake and take in the view, and get my body moving for whatever the day holds. Lots of prayers on my way.

    Jim either sleeps a lot in the day time or very little day or night now. The pain in his left side (tumor) has lessened, as has the tightness in his chest wall (metastasis), but itís been replaced by searing pain in his joints. Itís difficult to sleep and relax with that kind of pain.

    Thank you, funnylegs4 for mentioning radiation. Yes, that doctor did tell Jim that she'd "zap" him if he ever had pain. This is something for Jim to mention to his oncologist. Thank you!

    Jon seems to choose 2-4 a.m. as his time to fall asleep, but he isnít able to sleep longer than about 6 hours a day.

    THANK YOU ~

    For your love, prayers, support, positive thoughts and healing energy for Jim, Jon, and me. We are truly grateful for the blessing you all are in our lives.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  15. #18
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    Another thing that should have been disclosed, Rose. Maybe Jim and the rheumatologist could have had a plan in place to abate the trigger of the autoimmune reaction.

    Thank you for the updates.
    Blessings to the 3 of you,
    ANN
    There comes a time when silence is betrayal.- MLK

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  17. #19
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    You’re very welcome Rose! When you made the other thread about immunotherapy I was going to ask you about whether Jim’s doctor may have given him Chemo first because of fear of autoimmune response. Did Jim’s doc know he had RA??? If I remember correctly any medication or supplement or even change in diet that boosts the immune system will worsen an autoimmune disease. So it will worsen conditions like MS,RA,and type 1 diabetes. In patients with organ transplants it can trigger organ rejection. I think with immunotherapy some doctors are concerned it could trigger a new autoimmune disease or even a secondary autoimmune disease and/or damage organs which may be why the “Chemo first” situation exists. I’m not sure. I’m not a doctor. If I were you I would HIGHLY suggest you do extensive research on Opdivo and Chemo and the reasons for their use at certain times before writing any letters to make your argument solid. I find it much better to do research before opening my big mouth which is why I research any condition or disability I depict in my films as I do not want to give false information or hurt anyone by accident. Once you do write the letter I would suggest you post it and send it to anything cancer related like St Jude first then move onto sites that deal with medications and then sites about disability. If you fear the doctor may pull the Opdivo off the table I would suggest stressing anything positive to the doc about Opdivo more than the negatives as long as Jim can cope and endure the RA. I would also start researching to see if there are other options besides Opdivo just in case. I don't like how they are making the options seem so limited. The food and “nest” setup sound divine! Jim is so lucky! I’m glad you are able to get some respite. I’m praying for all of you! Keep us updated!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  19. #20
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    ((((((funnylegs4)))))) ~

    Jimís oncologist gave Jim chemo, because failing chemo with a platin drug + another chemo drug is a requirement to qualify for immunotherapy and for tissue testing. This applies to every patient with Jimís specific type of cancer ~ advanced non-small cell.

    This same protocol applies to tissue testing. Jim couldnít qualify to have targeted tissue testing, until he failed chemo. That was specifically stated in the literature Jim received about the testing study.

    Jimís oncologist said in our first visit, ďI donít think this is going to help you, but we have to try it.Ē She didnít tell us why. In that same visit, she mentioned immunotherapy, specifically Keytruda. But she didnít explain that Jim had to fail useless chemo to be eligible to receive immunotherapy. Keytruda is used for a different type of lung cancer than Jimís. Opdivo targets Jimís type of cancer.

    On the Opdivo website, it states that patients have to fail a platin+other chemo drug, before being allowed to try immunotherapy. The Opdivo literature given to Jim by his infusion nurse stated the same stipulation.

    http://www.opdivo.com/utm_source=goo...d_gateway_text

    Of course, I have been researching Opdivo, immunotherapy, lung cancer, etc. Iíve been an activist/advocate for nearly 50 years. Iíve written hundreds of letters to elected officials and agencies. I filed two fair hearings on behalf of my sons, one with the school district, and one with IHSS. I prevailed. This definitely isnít my first rodeo in advocacy, although Iím a rookie on the subject of cancer, but I am quickly learning more about it every day.

    Here are some of the articles Iíve found about immunotherapy and Opdivo.

    https://www.envita.com/cancer/a-stag...y-breakthrough

    http://www.lungcanceralliance.org/bl...is-a-big-deal/

    https://www.wsj.com/articles/cancers...ogy-1417714379

    Pharmaceutically, there are no other options for Jim. Natural alternatives are probably not going to help Jim, given the advanced stage of his cancer and the fact that it is spreading rapidly. He is following some of the Johanna Budwig protocol (yogurt & flax seed oil, Vitamin D, high protein diet). That may be one reason why Jim is doing as well as he is. But as far as medical treatment, Opdivo is the LAST RESORT.

    A highly plausible reason why immunotherapy is only given after failed chemo is MONEY. Itís unbelievably expensive. Big Pharma (and even hospitals and cancer centers) want to make as much money/profit as possible. Treating with chemo first brings in more money, because even if it fails, the bills have to be paid. Add to that the exorbitant cost of immunotherapy, and Big Pharma et al are making a nice pile of dough off of people dying from cancer. Jimís infusion nurse referred to this as ďdisgusting.Ē

    The first recipient of my letter will be Sen. Al Franken, who is attempting to pass a bill to prevent Big Pharma from keeping life-saving drugs from patients, because of the extraordinarily high costs of those drugs.

    Next, Vice President Joe Biden, who was designated by President Obama to head up the ďCancer MoonshotĒ program.

    I want to get to the people, who can actually do something about this horrid protocol of useless, harmful chemo, when immunotherapy is the ultimate goal with the best likelihood of efficacy.

    I never enter a battle without full armor and ammunition. This battle will be no exception.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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