Page 5 of 19 FirstFirst 1234567891015 ... LastLast
Results 41 to 50 of 181

Thread: Jim's Update

  1. #41
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,960
    Blog Entries
    1

    Default

    ((((((funnylegs4)))))) ~

    Thank you for your suggestions.

    We don't use an ice pack. We use a long cotton "sleeve" filled with lavender and flax seeds, which we keep in the freezer. The sleeve wraps all the way around the knee. It stays cold for a long time; however, Jon's nurse told us that ice/cold pack should be applied for only 20 minutes at a time, every 2-4 hours.

    I found this regarding Nopalea:

    https://www.ftc.gov/news-events/pres...mers-deceptive

    So, I don't think we'll be buying it.

    ((((((callyflower)))))) ~

    Thank you for your suggestions.

    Through the oncology department, Jim has a Nurse Navigator and a Nurse Practitioner, who works directly with Jim's doctor. In fact, Jim left a message for the NP this afternoon. We're both quite upset that he's been allowed to be in so much pain for a week and a half now.

    Jim isn't on any medications other than a tsp of codeine at bedtime to prevent coughing and help him sleep. He can't take Advil, and Tylenol does nothing for him.

    Jon's home health nurse, who would be Jim's nurse, if he had home health, will probably tell us when she thinks he will qualify for home health nursing services.

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  2. The following 5 users say "thanks"


  3. #42
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,193
    Blog Entries
    16

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    Thank you for your suggestions.

    We don't use an ice pack. We use a long cotton "sleeve" filled with lavender and flax seeds, which we keep in the freezer. The sleeve wraps all the way around the knee. It stays cold for a long time; however, Jon's nurse told us that ice/cold pack should be applied for only 20 minutes at a time, every 2-4 hours.

    I found this regarding Nopalea:

    https://www.ftc.gov/news-events/pres...mers-deceptive

    So, I don't think we'll be buying it.

    ((((((callyflower)))))) ~

    Thank you for your suggestions.

    Through the oncology department, Jim has a Nurse Navigator and a Nurse Practitioner, who works directly with Jim's doctor. In fact, Jim left a message for the NP this afternoon. We're both quite upset that he's been allowed to be in so much pain for a week and a half now.

    Jim isn't on any medications other than a tsp of codeine at bedtime to prevent coughing and help him sleep. He can't take Advil, and Tylenol does nothing for him.

    Jon's home health nurse, who would be Jim's nurse, if he had home health, will probably tell us when she thinks he will qualify for home health nursing services.

    Love & Light,

    Rose
    You're welcome. Thanks. I saw that awhile back but I think the charges were dropped and my family and I have had success with it. Use your own judgement of course.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. The following 3 users say "thanks"


  5. #43
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,960
    Blog Entries
    1

    Unhappy How The System Has Failed Jim

    ((((((Hugs to All)))))) ~

    ~~ The latest installment in our saga ~~

    When Jim didn’t hear from Dr. P yesterday morning, he called the Nurse Practitioner. She finally returned his call at 5 p.m.

    He told her that he’s had unrelenting RA pain for 10 days now and recounted for her all that he’s enduring. Then, he said that the way he’s feeling, he doesn’t think he’ll be able to come in on Thursday for his pre-infusion appt. with Dr. P, nor to have his Opdivo infusion at 11 that day.

    The NP said, “Oh, that’s off. You’re no longer going to be getting Opdivo.”

    Well, how nice of them to inform Jim of this change. And if he hadn’t called, he still wouldn’t know that it’s been dropped as his treatment.

    She prescribed prednisolone (steroid) for his RA pain. She immediately sent in the prescription to our pharmacy, which is only about 2 miles from our home.


    SCORING STEROIDS

    After John and I had turned Jon, at 7:00, I called the pharmacy to ensure that they had the script and that it was filled. "Give us 30 minutes," I was told. I arrived at 7:30, stood in line for 8 minutes, while an elderly gentleman got about 6 prescriptions and had a social visit with the pharmacist. While nothing to compare with Jim’s agony, I am having a major RA flare right now too. Primarily in my hips, ankles and hands. Standing, after all of the work I’d done, was the last thing I needed.

    Finally, it’s my turn. The pharmacist said to me, “We’re out of it. We don’t have any. Can you come back tomorrow?”

    I’ve made friends with this pharmacist, and she’s very nice. She knows Jim’s diagnosis, and she knows about Jon. Fighting back tears, I said, “Jim is in excruciating pain. He had Opdivo, and now he has an RA flare. He can barely walk. He needs this and should have had it a week ago. He’s home with Jon right now, and I thought this would only take me 15 minutes. Now what?”

    When she saw the steam coming out of my ears, as I described Jim’s pain, she said she’d call CVS to fill the script. I waited. CVS had the steroid. She asked me, “Is it on your way home?” No, it’s the opposite direction from our home, but he needs it, so off I go. Now, it’s dark, and I have a visual problem with night driving.

    I get to CVS, and I wait through 2 other patients getting their scripts. Standing, because I won’t sit down on their germy chairs. Jim, Jon and I are all vulnerable to germs right now.

    I recognized the pharmacist in the back, who was our pharmacist for 40 years, before his CVS closed last October. We chose the Savon, because it is so close to us, and I knew I was going to be the med pick up person now.

    I called out to him when I got to the counter, and he came to the counter to explain the dosing to me. Six tablets last night with food (supposed to be spread out through the day, but now it’s night time), and he said, “It will help his pain. It may make him nauseous, and it might give him insomnia, but it will help the pain, so try to give him all 6 tablets with food tonight. You can space them out if you want to over several hours.”

    Then I told him Jim’s diagnosis, and his expression was crestfallen. “Oh, I’m so sorry, Rose. He is such a great guy, and you must be exhausted. I can see you are. Be strong, Rose. I know you are incredibly strong. I’m so sorry.”

    Tears welled up and dripped down my cheeks. “He’s the love of my life. I’m trying to be strong, but this is so hard.”

    He patted my arm, “I know. It must be. I’m so sorry. I will be thinking of you all and praying.”

    NOW WHAT?

    So, Jim had leftover veggies with a Quorn cutlet. I gave him Zofran and CBD for nausea before his meal. Followed by the steroids. The steroids worked, and Jim’s pain has been significantly reduced. He slept well for several hours, woke up to go to the bathroom, then took the rest of the steroids, and returned to peaceful sleep. Today he actually walked upstairs! Took a shower!

    What is next? The NP said that Dr. P is looking at options. Well, that’s great! Jim has Stage IV cancer, and it’s spreading like a California wildfire.

    Before his first Opdivo infusion, I asked her Jim’s prognosis, and her reply was “Not good.” Then she told us that Opdivo was his best chance at survival, the last resort. So what other options are there? And why does he have to wait until Thursday to find out?

    She allowed him to suffer with excruciating, unrelenting pain for a week and a half, and couldn’t take the time to call him, to prescribe this steroid last week. And she knows about our family and our situation. So her delaying helping Jim has now caused me pain and loss of sleep, and anguish. Jim was able to do some things, he could walk, he could go into Jon’s room, he could sit on the toilet without slamming down and risking breaking a bone from the impact. But for the past week and a half, I have been literally waiting on him constantly for 24 hours every day. Along with caring for Jon.

    Compassion? How about some compassion?

    I have no words to adequately describe how furious and frightened I am right now. And I have to hold it together for Jim and especially for Jon. But last night, I let it all out with Jim, as he did with me. Today, we are coping better, because he isn't in horrid pain.

    Every time Jim was asked by Dr. P or a nurse or other medical professional about his pain, he told them that he has RA and that was his only source of pain. No one wrote that down in his file. No one took notice. No one checked his previous blood work in 2015, where the RA Factor was off the charts. No one asked him prior to the Opdivo infusion if he had RA. Dr. P didn’t test him for the RA factor. So is this all Jim’s fault now? Or theirs?

    We all know the answer to that.

    WE EXPECTED MUCH MORE

    Dr. P has failed Jim. He didn’t get a “chemo class,” so that he’d know what he was facing. I had to call the Nurse Navigator, who was promised to us as a go-between on Jim’s birthday and our first visit with Dr. P, because she never called us. No one calls Jim to follow up and see how he is doing. We have to call them and beg for help, then wait days or a week for a response.

    Every step of the way, it has been progressive disclosure. Dr. P doesn’t seem to know what she wants to do next, or she’s not willing to tell Jim, whose life is in her hands, what she is planning to do next. She was so sorry about his pain last Thursday, but she did nothing to help him. She could have prescribed steroids then. Why didn’t she? If she knew then that she would be denying him Opdivo now, why did she allow Jim to continue to suffer?

    I’m not being overly dramatic here, my friends. Jim’s pain has been horrific. His knees were 4 times their normal size. His neck and shoulders ache. His throat is sore. His hands were often clawed. He is frail, fragile, pale and weak.

    I am absolutely appalled and outraged that these “cancer care center” people would allow this to happen to Jim. Or to anyone, but this is my beloved.

    Jim and I wondered if maybe she was affronted by our questions and our medical knowledge, which is more extensive than the average patient. We ask questions about everything. We do research. We don’t take anything at face value, and we advocate. We don’t see doctors as gods, who know everything. We have far too much experience with our boys to know that this is folly.

    Jim plans to tell Dr. P exactly how we both feel about her distance and lack of concern for his pain, for his desire to live, for his bravery, for his commitment to me and Jon and the pain he feels in leaving us and in our losing him.

    And she will hear from me. Why didn’t she fight for him? Why didn’t she do everything she could think of to do for Jim? Why does she need 2 weeks to find another option for his treatment? Why didn’t she protect him from this RA flare, by testing him for RA before the Opdivo infusion? At least then, if no other alternatives were available to him, he wouldn’t have suffered this incapacitating pain for 10 days. And now has to take 6 days of steroids to overcome the pain, which will lower his immunity.

    Thank you for listening and sharing our journey. And for your love, prayers, healing energy and positive thoughts. You are a blessing to us, and we give thanks for you.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 04-18-2017 at 06:28 PM.
    Mom to Jon, 47, (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.

  6. The following 7 users say "thanks"


  7. #44
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    2,190

    Default

    I'm outraged with you, Sister.

    (((((rose)))))
    There comes a time when silence is betrayal.- MLK

  8. The following 5 users say "thanks"


  9. #45
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,193
    Blog Entries
    16

    Default

    Hi Rose,
    Oh no,no,no! I'M SO SO SORRY!!! I don't want this for you,or Jon or Jim. I don't want to see your beautiful family torn apart! This makes me cry. I am utterly enraged! Now after hearing this I am starting to think it is not cancer that kills people,but the medical system. Doc P did indeed fail you! It is possible this Doc P was waiting to see if Jim's pain would stop on its own so she would have an excuse to keep him on Opdivo. Then it seems when she realized this would not happen she simply did not have the guts(and that's my nice way of saying it) to tell you the truth about pulling Opdivo. I am really puzzled she did not give steroids before, I see no reason why he should not have been on them. I had this nagging feeling Dr P was going to take away the Opdivo anyway. Welcome to a medical system that values death over life and is often very dishonest for the sake of "supposedly" sparing feelings. Please, let me know if there is ANYTHING I can do for you?? I pray that there is SOMETHING, ANYTHING THAT CAN BE DONE to slow the cancer down!!!! Don't give up yet. Jim is still here. There may still be a way that Doc P has not told you about yet. Please,please keep us updated!!!
    Last edited by funnylegs4; 04-18-2017 at 07:00 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. The following 4 users say "thanks"


  11. #46
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,960
    Blog Entries
    1

    Default

    ((((((Ann)))))) ~

    Thank you so much.

    As I said to Jim today, "this is obscene."

    What kind of doctor allows a dying cancer patient to suffer unbearable incapacitating pain for 10 days? What's next? Denying Jim Hospice?

    Today, we're trying to offset this stress with humor. When Jim was in the shower, he called out to me, "Rose, where's the shampoo?"

    (He's bald, of course, thanks to chemo.)

    It was just amazing to see him climb the stairs and go down them twice today. He made his own tea! He kept telling me to "sit down."

    Imagine what life would have been like for the past 10 days, if Jim had been given steroids the day after his Opdivo infusion.

    He missed 10 days with Jon, only able to call out to Jon from the living room futon nest. They need to be together. And Jon witnessed Jim hobbling, hunched over, and grimacing in pain as he sat on the toilet, because Jim had to use the door handle on the bathroom door to Jon's room for stability. Jon's expression of dismay and concern for his dad is etched forever in my memory.

    I feel that the lack of attention Jim has received is absolutely cruel to him, me and Jon, and to all of our loved ones, who are praying for us.

    And yes, outraged is the best word for how we feel now. Along with helpless. What do we do now? How do we proceed? What awaits Jim?

    Love & Light,



    Rose
    Mom to Jon, 47, (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.

  12. The following 6 users say "thanks"


  13. #47
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,193
    Blog Entries
    16

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Ann)))))) ~

    Thank you so much.

    As I said to Jim today, "this is obscene."

    What kind of doctor allows a dying cancer patient to suffer unbearable incapacitating pain for 10 days? What's next? Denying Jim Hospice?

    Today, we're trying to offset this stress with humor. When Jim was in the shower, he called out to me, "Rose, where's the shampoo?"

    (He's bald, of course, thanks to chemo.)

    It was just amazing to see him climb the stairs and go down them twice today. He made his own tea! He kept telling me to "sit down."

    Imagine what life would have been like for the past 10 days, if Jim had been given steroids the day after his Opdivo infusion.

    He missed 10 days with Jon, only able to call out to Jon from the living room futon nest. They need to be together. And Jon witnessed Jim hobbling, hunched over, and grimacing in pain as he sat on the toilet, because Jim had to use the door handle on the bathroom door to Jon's room for stability. Jon's expression of dismay and concern for his dad is etched forever in my memory.

    I feel that the lack of attention Jim has received is absolutely cruel to him, me and Jon, and to all of our loved ones, who are praying for us.

    And yes, outraged is the best word for how we feel now. Along with helpless. What do we do now? How do we proceed? What awaits Jim?

    Love & Light,



    Rose
    I'm so so sorry Jon had to see Jim like that. It reminds me of when I saw my friend/teacher with the stroke have dizzy spells and the sight of it horrified me. I wish I could make Jon un-see that. I agree Jim's pain was just downright cruel! Make sure Jon and Jim spend a lot of time together now.
    Last edited by funnylegs4; 04-18-2017 at 08:07 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  14. The following 4 users say "thanks"


  15. #48
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    2,190

    Default

    Is there no protocol to pretreat w steroids and give the Opdivo? I am thinking no. It just hit me. One revs up the immune system and one calms it.

    Why is this not an emergency to get him on something fast?
    ANN
    Last edited by stillstANNding; 04-19-2017 at 11:37 AM. Reason: Spelling
    There comes a time when silence is betrayal.- MLK

  16. The following 4 users say "thanks"


  17. #49
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,403
    Blog Entries
    12

    Default

    Rose, what you're going through must be stressful in the extreme.

    Addressing just one of the problems, I wonder if there's no pharmacy that will deliver rx's to your home?

    I've lived in 3 different towns where I had the problem of getting rx's without going to the pharmacy to wait for them, and each time I combed through the phone directory or online directory of all possible pharmacies and called and called until I found one that would deliver.

    They don't always put that service in their ads or phone listings but they may have it anyway. It might be worth looking into if you have any energy left for that kind of search....
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  18. The following 4 users say "thanks"


  19. #50
    Distinguished Community Member tic chick's Avatar
    Join Date
    Oct 2006
    Location
    Detroit, MI
    Posts
    695

    Default

    (((((rose))))),

    i came across a bookmark in my list whilst tidying it up. i don't remember why i bookmarked it, but it deals with palliative care, which is not the same as hospice. here is the article: http://www.nextavenue.org/confusion-...-hospice-care/ it's a short read.

    i also specifically googled about the use of steroids while undergoing immunotherapy. here is the article on that: http://www.curetoday.com/journey/del...o-treat-cancer the yellow box in the article deals with 3 reasons immunotherapy might not work; if you have an autoimmune disease (it mentioned ra, lupus and crohn's specifically), if you are taking steroids and if your cancer is aggressive. the article states that giving immunotherapy when a patient has an autoimmune disease might increase morbidity and mortality. i am sorry your doctor failed you by not recognizing that jim had ra. i am sure she wanted to give jim the chance of trying opdivo.

    i feel such compassion for you while you tackle your current problems. i once told my therapist that i disliked the axiom, "God never gives you more than you can handle." she gave me an alternative explanation for it, which made sense at the time, but which i have since forgotten. writing it again, i find i still dislike it.

    Quote Originally Posted by funnylegs4 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Welcome to a medical system that values death over life and is often very dishonest for the sake of "supposedly" sparing feelings.
    i don't think the medical system values death, i think that sometimes there is nothing that can be done to cure a disease or prolong a good quality of life. i do agree that doctors don't talk honestly with patients about end-of-life issues. my heart is always sad around Easter because my mom, who had end-stage dementia, broke her hip during this time 3 years ago. it eventually led to her death. i knew my mom's wishes and i declined the surgery to fix her hip. the physician who was assigned to my mom (it was a teaching hospital), said my decision was "reasonable". i wanted to hug her because my decision went against the opinions of my brother and sister, who didn't know her wishes. she lived with her pain well controlled until she died almost 4 months later. how wonderful if doctors could say, "the treatment we are giving you might give you an extra 3 to 6 months of life, but you will spend that time sick and recovering from the treatment. we will do what you want, but the quality of your remaining life would be better spent with your loved ones and doing what you want." having said that, i do believe in miracles...but mostly i believe in people being able to do what they want with their lives and bodies.

    thank you for sharing and caring, rose ...
    jeannie
    Last edited by tic chick; 04-19-2017 at 04:33 PM.
    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

  20. The following 6 users say "thanks"


Page 5 of 19 FirstFirst 1234567891015 ... LastLast

Similar Threads

  1. little update...
    By mg12061 in forum Child Neurology
    Replies: 4
    Last Post: 03-01-2014, 08:46 AM
  2. Update...
    By mg12061 in forum Child Neurology
    Replies: 3
    Last Post: 01-15-2014, 09:27 PM
  3. update
    By mg12061 in forum Child Neurology
    Replies: 3
    Last Post: 12-03-2013, 07:20 PM
  4. A little update
    By mg12061 in forum Child Neurology
    Replies: 6
    Last Post: 11-16-2013, 09:08 PM
  5. update...
    By mg12061 in forum Child Neurology
    Replies: 8
    Last Post: 09-16-2013, 09:12 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.