Page 6 of 16 FirstFirst 1234567891011 ... LastLast
Results 51 to 60 of 151

Thread: Jim's Update

  1. #51
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,173
    Blog Entries
    15

    Default

    Quote Originally Posted by tic chick View Post
    This quote is hidden because you are ignoring this member. Show Quote
    (((((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.



    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
    Thanks tic chick! I do certainly believe in people doing what they feel is best for their bodies and I think you made the right choice. I was ranting there in my outrage,so it's not meant entirely literally, but I was referring to very,very,very rare cases from the Netherlands were people with certain medical conditions were euthanized against their will for financial reasons by hospitals there. I researched this in 2016 and the way Jim was not taken care of reminded me of this in a very small way because cancer is big business etc. Sorry!

    A good documentary for both you and Rose right now would be a documentary called "Being Mortal" from PBS which deals very well with end of life type decisions and chronicles stories similar to Jim's. Check it out! It handles end of life and other choice decisions about one's body the way I wish the media would!!!
    Last edited by funnylegs4; 04-19-2017 at 08:29 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  2. The following 4 users say "thanks"


  3. #52
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,916
    Blog Entries
    1

    Default

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

    Thank you all so much for your suggestions, your advice, your understanding, compassion and support, and for praying for us.

    funnylegs4 ~

    I also wish that Jon could un-see his dad's anguish and pain. But now that Jim has been on steroids a few days, he is free of his pain (still some residual aching), and he is seeing his dad up, cheerful, and doing things for him.

    So that I could sleep in a bit this morning, Jim took Jon off of his formula and gave Jon his meds. Jim just helped me pull Jon up in bed, using his bottom sheet. I've been doing this by myself for 11 days, and I don't have the upper body strength or the hand strength to get him all the way up to the headboard. With Jim's help, Jon is fully up in his bed, which is, of course, much better for Jon.

    Jon is all smiles and so happy to be with his dad. I can only pray that this will erase those moments, when Jon saw Jim in so much pain.

    Tomorrow, Jim will tell Dr. P "how the cow ate the cabbage" (one of my mom's favorite expressions). Jim is quite angry, rightly so, and he told me that he hopes he can keep it civil so that they don't call security to cart him away. He has a RIGHT to express his anger with her and her lack of caring about and for him.

    I am going to write my feelings and distress about everything that she hasn't done for Jim in the past 4 months for Jim to take with him, so she can read and know how her failure to acknowledge Jim's RA and ignoring Jim's pain impacted all 3 of us. I don't want to talk to her, because the last time she deigned to give me a 3 minute phone call about Opdivo, I could detect clearly from her demeanor that she didn't like being quizzed. Perhaps that's why she always schedules his visits in the morning, when she knows that I have to care for Jon and cannot accompany Jim.

    It is quite upsetting to be this cynical, but we're living the reality of the poor care Jim has received. I mean, our dentist calls us after she's performed extensive dental surgery on us to make sure that we're okay. You'd think an oncologist (or her extensive staff ~ NP, Nurse Navigator, assistant, or anyone else) would do the same, since this is life and death.

    Right now, we're just giving thanks that Jim's pain is significantly reduced and that he is mobile and sleeping well. He also has a great appetite, a well known side effect of steroids. He needs to gain weight, so this is a good thing.

    Ann ~

    Yes, you did figure out why steroids and Opdivo are incompatible. Just think of how many people (millions, I reckon) with cancer, who have an autoimmune disease as well, who will be denied this life-saving (or life extending) treatment. And I would include MS in that category, whether is is truly an autoimmune disorder or it isn't. But until a study of MS patients, who have cancer, and have been given immunotherapy is released, that is an unknown.

    "Why is this not an emergency to get him on something fast?"

    I don't know. Maybe because Dr. P realizes that Jim's cancer is so aggressive and that she's throwing darts in the dark with a blindfold on just to appease him or give him false hope? Or practice on him as a guinea pig to see what works? Or she's raking in his Medicare/Supplemental benefits to line her pockets?

    As I've said before, and as I told our Family Doc's assistant today, "What kind of doctor allows a patient to suffer unbearable pain for 10 days?" She was appalled, as everyone is, who hears our story. She promised to share all of this with our family doc, who loves us and has moved Heaven and Earth to help us in the last 17 years.

    (Reason for the convo with the assistant: Apria is trying to deny Jon authorization for his O2 concentrator ~ more life and death ~ and it has outsourced it's customer service to India. It's been downhill since for 3 years. Of course, I have to deal with this now urgently. Assistant suggested that I call Medi-cal to get another vendor for O2. That's a bureaucratic nightmare. I won't expound.)

    agate ~

    I haven't explored pharmacy delivery services, and that's a great suggestion. Our pharmacy is really only a couple of minutes from our home, and if they had had the steroids, I would have been there and back home in 15 minutes. The transition from the pharmacy we'd used for 40 years has been very tumultuous. Every month there is an issue with one or more of Jon's seizure meds.

    Jim suggested that we transfer our meds to the CVS, where our former pharmacist now works (but only 2 days a week, as he's about to retire). I had to remind Jim that this is not in a safe neighborhood, and that the couple of times I've been there, unsavory characters are hanging out in front of the liquor store and the cigarette/cigar store. I'm terrified to go there day or night, but particularly at night.

    I did learn a few days ago that one of our grocery stores (we use 4 different stores to get what we need/eat/want) does deliver groceries. So that is a great option for us, which I will explore.

    tic chick ~

    Thank you for your links.

    Dr. P did seem enthusiastic about giving Jim Opdivo (on our initial visit, she mentioned immunotherapy). But every oncologist should test patients for autoimmune diseases before giving this treatment. Many people have autoimmune diseases and don't know it or are misdiagnosed. In Jim's case, all she had to do was look a couple of years back in his blood work to see the RA Factor results. Or call our family doctor. Or ASK JIM straight up: "Do you have an autoimmune disease?"

    While Jim spent 10 days in agony, he wondered whether this would kill him, instead of the cancer. So, it's interesting that Opdivo can contribute to death, its opposite intent, by exacerbating an underlying condition, like RA or other autoimmune diseases.

    Jim and I want straight forward answers. Such as: How much time does he have? Will this cancer metasticize to his brain, causing strokes and seizures? (Several years ago, a friend who had lung cancer, had metastisis to her brain.) What can we expect to happen next? And after that? And will you, and all of the cadre of "cancer care professionals" be available to Jim, Jon and me during this process? Or are we just going to be left to our own devices to suffer together without your support?

    Jim is already designated as a Palliative Care patient (hence the Nurse Practitioner). Hospice is next. Fortunately, Jon's nurse will be Jim's nurse, and she's a "member of our family." She doesn't work hospice, but she will be here for us without hesitation. She will ensure that Jim, Jon and I get everything we need, working closely with the Hospice nurses.

    I cannot describe how difficult it is to even think about Hospice.

    We are praying for miracles, small ones, BIG GIGANTIC ONES, and just the ability for us to be together in peace and love for as long as possible, in the most positive, life-affirming ways possible, with laughter, with tears, with honesty, with devotion and never-ending love.

    Once again, please know how very grateful we are for your love and support, and be assured that our prayers are with all of you ~

    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.

  4. The following 4 users say "thanks"


  5. #53
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    313

    Default

    Your situation breaks my heart Rose. So unneeded and made worse by an indifferent medical professional. Is the Keytruda out of the picture? Seems like that doctor would be bending over backward to get Jim the help he so desperately needs. Continuing to pray for a miracle for all three of you.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  6. The following 4 users say "thanks"


  7. #54
    Distinguished Community Member Jeanie Z's Avatar
    Join Date
    Dec 2006
    Location
    WPB,FL
    Posts
    1,284

    Smile

    :) I am so sorry the doctor has been so non supportive. I too am praying for a miracle for all of you. Jeanie :)

  8. The following 3 users say "thanks"


  9. #55
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,916
    Blog Entries
    1

    Default

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

    As Dr. P’s assistant was weighing Jim yesterday morning, she asked, “How are you feeling today?”

    Jim replied, “I’m better than I was, but I am very, VERY, angry.”

    The NP exited her office and came up to Jim to ask if the steroids helped his pain, and he said it had. She overheard him say that he’s angry, so she just said, “Good” to his pain lessening, then walked away.

    Jim’s blood pressure is normally perfect (really, PERFECT), but yesterday it was 150/78.

    MEETING WITH DR. P

    With Dr. P., he unloaded his list of complaints, describing his pain and debilitation for 10 days, how this impacted me, as I waited on him literally hand and foot non stop, and how it upset Jon and caused Jim to be unable to spend time with Jon in Jon’s room. He asked her why she let him suffer and didn’t prescribe steroids to help him.

    She responded, “You told me you don’t like to take any kind of drugs.”

    Again, blaming Jim.

    Jim explained, “I said that regarding taking RA drugs. And generally, if I can find a natural way to solve the pain or discomfort I am having, I will always take that route over pharmaceuticals. But I was in horrid pain, and if you had asked me, ‘Do you want a prescription for steroids?’, I would have absolutely said ‘YES!’” Obviously. He said “yes" to the NP’s prescription for steroids.

    Then, he reminded her that many times, when asked by her or nurses, if he had pain, he always replied, “No, and I’m amazed that I don’t have any RA pain during all of this.” She then confessed that she remembers him saying that.

    Moreover, she did find the 2015 RA Factor results in his chart, when she spoke to Jim last Thursday. “Oh, yes. There it is,” she said to him on the phone.

    Beyond that, it is her duty as a physician to ask her patients critical questions like, “Do you have an autoimmune disorder?”, before prescribing an immunotherapy drug. I still and always will say that every oncologist should test their patients for autoimmune disorders pro forma.

    While Dr. P apologized, “I’m very sorry,” she never actually admitted that she’d messed up, nor did Jim feel satisfied that she was contrite.

    But, Jim was satisfied that he had aired his issues with her, and that she knows now where he stands, and that he’s felt neglected.

    Oh, and he met the Nurse Navigator in the hallway. She gave him her card and told him to call her with any needs. I guess she’s just too busy to call to check up on Jim and ASK if we need anything. Must not be her job. It’s our job.

    NEW CHEMO DRUG/ROUND ONE STARTS ON MONDAY

    Dr. P offered up another chemo drug, Navelbine, which is used to treat Jim's type of cancer. I couldn’t read her handwriting, and I tried every variation, but I couldn’t find the drug on the internet. So I called Dr. P’s assistant and left a message. She returned the call, while John and I were turning Jon, of course.

    While Dr. P told Jim that this doesn’t have all of the other nasty side effects of the other Chemo drugs he had with the exception of fatigue, what I read on line indicates that it has all of the warnings of every other chemo drug. Even immunotherapy drugs have potential adverse, even fatal, side effects.

    The course of this chemo is once a week for 3 months.

    Jim wants to drive Monday, but he is still having RA pain, even with the steroids. He just doesn’t feel up to it, and I worry about his knees climbing into/out of our van. I’m going to have to figure something out for long term transportation for Jim. At this point, it looks like I’ll be calling a cab.

    THE PROGNOSIS

    Okay. Here it is.

    Jim asked Dr. P, “How long have I got?”

    “Six months.”

    Of course, Jim and I ran through a gamut of emotions, as we talked and cried together. We aren’t giving up hope, and we won’t be ruled by a calendar. Jim wisely observed that we have to continue to “be ourselves,” to live and love as we always have, to be as “normal” as possible in this most abnormal situation. It’s the only way that we can cope. We also have to plan and prepare for the future. It’s a delicate balance.

    THANK YOU ALL

    For your prayers, healing, positive energy, support, suggestions and friendship.

    Love & Light,

    Rose

    P.S. Tamie ~ Keytruda is an immunotherapy drug, like Opdivo, and it treats a different type of lung cancer than the one Jim has. It would do the same thing to Jim, exacerbate his RA.
    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.

  10. The following 6 users say "thanks"


  11. #56
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,173
    Blog Entries
    15

    Default

    Hi Rose,

    I'm SO SO SORRY!!! Dr P kind of sounds like an uncaring (bleep) if you don't mind my saying so. If there was another Chemo drug Dr P thought would work better than the first one that failed why didn't she put him on that FIRST?? I'm heartbroken at the 6 month estimate but I have heard of many people with cancer living well beyond these estimates and that is what I am praying for. I also pray the new Chemo works. At least the immune suppressant nature of Chemo may relieve the RA pain. I would highly suggest you and Jim and Jon spend as much quality time together as possible and try to enjoy life and thrive as much as possible! Keep every part of Jim as healthy as possible during Chemo. I would drive Jim myself if I could! Is there a service like Access-A-Ride over there? I know cancer patients can often get special transports for Chemo depending on the state.
    Last edited by funnylegs4; 04-21-2017 at 10:30 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  12. The following 4 users say "thanks"


  13. #57
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,191
    Blog Entries
    12

    Default

    Hi Rose,
    At least the air has been cleared with Dr. P somewhat, and it sounds to me as if her "I'm sorry" is probably her way of apologizing and admitting she was wrong. Maybe now she'll try harder. Some doctors seem to be too stubborn to admit they made a mistake or to apologize. I think it's good that Dr. P isn't that type of doctor.

    I thought of you and Jim when I read about this. In case you don't know about it. I hadn't heard of Cimavax but this woman has traveled to Cuba to get it for Stage IV lung cancer--though it costs $15,000:

    http://www.bbc.com/news/magazine-396...42017_magazine
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  14. The following 3 users say "thanks"


  15. #58
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    3,012

    Default

    Rose, you, Jim and Jon have been in my daily prayers. Sometime there is just not much anyone can say other than "I am sorry and I care". As you know, I have been there. I was from the beginning told 3 months and it ended up being 6 months. I thought, just as you do right now, that I could not bare it. Somehow we do and we keep going. Reading your story has taken me back to so many days and nights, and still there is nothing I can say that will make it any better. I am going to be praying about this new cancer drug and what it will do for Jim.

    I am thankful you have good friends and someone who, when it is deemed to be the appropriate time, will come in and help care for Jim as well as Jon. Someone you know - who cares about all of you.
    Virginia

  16. The following 5 users say "thanks"


  17. #59
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,916
    Blog Entries
    1

    Default

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

    funnylegs4 ~

    Dr. P gave Jim cisplatin and another chemo drug initially, because that was what was required to qualify for Opdivo. She was lining him up for immunotherapy, which was her original goal. Of course, that should have never been a goal for Jim, because of his RA. In so doing, she gave us false hope, and we feel very crushed about this. We were lining Jim up to be a Super Survivor.

    The Navelbine chemo drug is just the next attempt at slowing down the cancer from metastasis. She told Jim that she was going to continue to look for options. Meanwhile, she wants him to try the Navelbine once a week for 3 months.

    There are assorted transportation options, some of which have poor Yelp reviews, and many of which Jim doesn't qualify for due to the fact that we aren't retired; we're still working and have an income as Jon's careproviders. Thankfully, Jon's nurse has offered to transport Jim on Monday. But I've looked up the local Yellow Cab, and they have a good reputation, so that's our back up option.

    Thank you for your prayers!

    agate ~

    Thank you for the article about Cimavax. It sounds quite promising. However, people with autoimmune diseases, particularly RA, are excluded from taking it. I read in another article that 50% of patients with non small cell squamous carcinoma (Jim's cancer type) have RA. That's half of the patients, who will be denied this option.

    Regarding cost, $15,000 is really cheap, all things considered. Jim's chemo port placement cost $9,000. His biopsy cost $10k. A full course of Opdivo can run $150,000! And look at the costs of the MS drugs ~ it's outrageous!

    Jim wouldn't want to leave Jon and me to go to Cuba, but I told him that if it was an option to help him, and he could have the drug, I might just put him on a plane to Havana.

    I think Dr. P knows that she messed up with Jim, and she does feel badly about it. Maybe she's worried we'll file a malpractice suit against her, so she's reserving her admissions of complicity. Jim said that everyone in her office (the cancer center) was all over him, asking how he was and if he was better. They know. And suddenly, after 3 months, the Nurse Navigator magically appeared! Yeah, they know.

    We have a great lawyer, and if he thought we had a malpractice suit, I know he would tell us. But he's told us before that those are the most difficult suits to win. I don't have the energy to pursue a lawsuit. I need to keep my focus on Jim and Jon.

    But at some point, I am going to advocate for a change in protocol to allow Stage IV patients access to immunotherapy, without useless chemo failure trials first. And I'm going to advocate for all oncologists to ask patients if they have autoimmune disorders and to test them prior to immunotherapy. Or even chemo. It should be standard practice with cancer.

    I don't want money. I want CHANGE.

    Virginia ~

    I'm so sorry that our journey is bringing back all of these memories for you. I do know what you're going through, as I have experienced the same when supporting parents, who have lost their children. There is a thin veil over the past, but it doesn't completely cover or erase our memories.

    Just knowing that you understand, pray for and care about us is a blessing. Thank you.

    While losing Jim will devastate me, Jon will suffer more than I will, and I will have to find a well of strength to console and comfort him. Among Jim's many reasons for not wanting to leave us is that he wants to be here with me, when Jon passes. And the tragedy is that we both pray that Jon passes before I do, because without us and his beloved brother, Jon will deteriorate rapidly. This is what planning for the future means for us.

    Thank you all for your prayers, support, positive, healing energy, and friendship ~

    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.

  18. The following 5 users say "thanks"


  19. #60
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,191
    Blog Entries
    12

    Default

    We have a great lawyer, and if he thought we had a malpractice suit, I know he would tell us. But he's told us before that those are the most difficult suits to win. I don't have the energy to pursue a lawsuit. I need to keep my focus on Jim and Jon.

    But at some point, I am going to advocate for a change in protocol to allow Stage IV patients access to immunotherapy, without useless chemo failure trials first. And I'm going to advocate for all oncologists to ask patients if they have autoimmune disorders and to test them prior to immunotherapy. Or even chemo. It should be standard practice with cancer.

    I don't want money. I want CHANGE.
    Rose, your selfless attitude will surely help to see you through this crisis. So many people get carried away with their zeal for making someone pay, and it's just sad. They get all wound up in legal gobbledygook and their time and energy gets wasted on lawyers and paperwork and court appearances.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.


Page 6 of 16 FirstFirst 1234567891011 ... 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.