Page 3 of 19 FirstFirst 1234567813 ... LastLast
Results 21 to 30 of 188

Thread: Jim's Update

  1. #21

    Default

    Dear Rose,

    It sucks that the patient has to fail at chemo first. My father died of lung cancer 17 years ago, 4 weeks after I had Jonathan. I was dealing with a very sick newborn and on top of that a dying parent. I had to fly home with my 3 children to say goodbye and it was simply awful. Immunotherapy was not around when my father had his chemo and radiation. The doctors were not upfront with him and how advance the cancer was once he was diagnosed. The chemo shortened his life considerably but he did pass peacefully without a tremendous amount of pain. If he knew that the chemo wasn't going to help I believe that he would have made different choices. He was 62 years old when he died.

    My father's family has a very strong genetic link to cancer. I have lost multiple members of my family to cancer. My uncle was just diagnosed and his daughter just went through chemo for stage 4 colon cancer and she is only 52 years old. Out of my fathers siblings 4 out of 5 have had some form of cancer. I hate it!

    I'm sorry that you have to go through this with Jim. I hope that the doctors can work with the both of you to find the best course of treatment for Jim to make him more comfortable and have a quality of life that works for him. You are his best advocate. Don't forget to take care of you in this battle. Unfortunately cancer is a horrible disease but I pray for You, Jim, and Jon for peace and answers that work for your family.

    Continued prayers and blessings going up for all of you.

  2. The following 6 users say "thanks"


  3. #22
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,199
    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)))))) ~

    Jim’s 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 Jim’s specific type of cancer ~ advanced non-small cell.

    This same protocol applies to tissue testing. Jim couldn’t qualify to have targeted tissue testing, until he failed chemo. That was specifically stated in the literature Jim received about the testing study.

    Jim’s oncologist said in our first visit, “I don’t think this is going to help you, but we have to try it.” She didn’t tell us why. In that same visit, she mentioned immunotherapy, specifically Keytruda. But she didn’t 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 Jim’s. Opdivo targets Jim’s 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. I’ve been an activist/advocate for nearly 50 years. I’ve 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 isn’t my first rodeo in advocacy, although I’m a rookie on the subject of cancer, but I am quickly learning more about it every day.

    Here are some of the articles I’ve 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. It’s 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. Jim’s infusion nurse referred to this as “disgusting.”

    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 “Cancer Moonshot” 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
    Hi Rose, Thanks for the clarification! Now I understand! This truly is disgusting. The entire system is designed to result in the patients dying it seems. I have always said cancer was big business and here is the proof. I think cancer would have been cured years ago if we lived in a society that valued individual human life over money. I bet the same goes for diabetes as insulin equals big dollars for drug companies. You know more about this then I do. Follow your instincts! Fight this! Prayers for success!

    btw saw this in the news today and thought it may interest you https://www.studyfinds.org/second-op...agnosis-study/
    Last edited by funnylegs4; 04-09-2017 at 05:04 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. The following 5 users say "thanks"


  5. #23
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,994
    Blog Entries
    1

    Default

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

    Thank you so much for your love, prayers and support.

    Ann ~

    Jim doesn't have a rheumatologist. Jim and I choose not to take RA drugs, as several of our friends with RA & PA have suffered very serious side effects: urethral cancer, bleeding ulcers, low platelets, repeated UTIs and respiratory infections. We manage our RA symptoms with Advil (although only if it is severe, as Advil has terrible side effects too ~ bleeding in particular), creams, Witch Hazel, diet, rest, and a good multivitamin and extra Vitamin D. Jim is also taking CBD oil now.

    I'm thrilled to report that Jim's RA has calmed down considerably. He was able to climb the stairs and have a hot shower, which helped. I'm praying that he sleeps better tonight.

    Marcie ~

    I'm so very sorry that you lost your father and other family members to cancer, and that your uncle and his daughter are battling it too. I hope that you are being checked regularly, and I will pray that you will never be afflicted with this dreadful disease. It is, as Jendi called it, an "insidious beast."

    funnylegs4 ~

    Thank you for the link about obtaining second opinions. We have thought about this also, but we'd likely just be referred to another oncologist in our system. We don't have the ability to seek help further than our close neighborhood, as we depend upon others for transportation. Jim's doctors and our hospital are 4 miles from our home.

    Plus all of the testing and support services with our hospital are incomparable to other hospitals in our region. Our hospital and physicians have very high ratings throughout the state and nationally. We can't go to Mayo or even a Cancer Center of America location ~ the nearest one is in Phoenix.

    Based upon the results of Jim's tests, his clinical representation (how he feels, looks, etc.), there is no doubt that he has Stage IV non small cell squamous carcinoma, which is spreading rapidly throughout his lungs and the lung field. And, based upon my research thus far, Opdivo is the last and only line of defense.

    His radiology oncologist said she couldn't do anything for him. Surgery was out of the question, as it would likely have caused the cancer to spread.

    If we were in the early stages, there might be a reason to seek a second opinion. At this juncture, we don't see the point or the purpose of a second opinion. Another oncologist would likely want to order new CT scans, another biopsy, an MRI, and Jim doesn't have time for all of that now.

    Jim reiterated today that he doesn't want to abandon Opdivo, and he plans to tell his oncologist that tomorrow. He will tolerate a few days of discomfort and pain, if it means that he can fight the cancer. It has worked for others, so why not have it work for Jim?

    The Wall St. Journal article link is about "Super Survivors." I want Jim to be in a "Super Survivor" profiled in a newspaper article, or medical journal, and all over the media.

    I cling to this hope. I pray for this outcome. I ask God to let Jim be a "Super Survivor."

    Every doctor and nurse, who has cared for Jim in the last 4 months, knows our love story and our family history. They know we lost our precious angel Michael. They know the extent of Jon's needs. They know that we work as a team to care for Jon. They know that Jim and I are profoundly in love and committed to each other. They want to help us, and I'm sure they'd be ecstatic if Jim became a "Super Survivor."

    There is no question that Jim has earned that title and that he deserves it. And so do Jon and I, because we love and need him.

    So let our mantra be: Jim The Super Survivor

    All together now in one loud voice:

    JIM THE SUPER SURVIVOR!

    Thank you all so much for joining us on our journey and for your support.

    We Love You!



    Love & Light,

    Rose, Jim, Jon,
    & Angel Michael
    Last edited by Earth Mother 2 Angels; 04-09-2017 at 07:57 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. #24
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    3,203

    Default

    Yes, Rose "JIM THE SUPER SURVIVOR". I Think of you and Jim so much. Having been where you are I know some of what you are going through. Though circumstances may be different the feelings of loosing someone you love so dearly is the same. I pray for you and Jim daily. Now, I will pray for Jim to be a super survivor!! You are strong and you know it, but you are even stronger than you realize.

    I pray for a good day today.
    Virginia

  8. The following 5 users say "thanks"


  9. #25
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,199
    Blog Entries
    16

    Default

    You're welcome! I wonder why surgery may have caused the cancer to spread…I'm sure Jim is in good hands. I read the "Super Survivor" article after you mentioned it here and I ABSOLUTELY LOVE IT! JIM THE SUPER SURVIVOR! I'm totally praying for "super survivor"! Jim's not dead yet, not by a long shot, you,Jim and Jon please hold onto that fact and keep on fighting! Don't let a medical system that devalues life act like Jim is already dead!
    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. #26
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    2,236

    Default

    I am thinking about you, Rose, and I am hoping that you and Jim are OK. Jon, too.

    Love and chocolate plus prayers.
    ANN
    There comes a time when silence is betrayal.- MLK

  12. The following 5 users say "thanks"


  13. #27
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,561
    Blog Entries
    11

    Default

    Rose, it sounds as if you've thoroughly explored every possible resource, and so this suggestion is probably one you thought of long ago, but might the Easter Seals Society be of help--for instance, in arranging transportation for medical care?

    I've known of quite a few people who have found them helpful.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  14. The following 5 users say "thanks"


  15. #28
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,994
    Blog Entries
    1

    Default The RA Factor

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

    Jim’s RA is worse. He can barely walk, and his right knee is terribly swollen and ultra painful. His neck and shoulders are also inflamed, so that moving his head is difficult. Everything hurts.

    ONCOLOGIST CHECKS IN FINALLY

    Dr. P finally called yesterday evening. Her timing was rotten. Our friend and I had just started Jon’s turn (and all that goes with it ~ changing his sheet, bathing his back, applying creams and wound pads). We have waited 4 days for her to reply to Jim. Gah! I wanted to listen in on this call.

    Jim recounted to us, after shuffling into Jon’s room, what Dr. P said. First, she said, “You didn’t tell me that you have RA! It’s not in your file!”

    Yeah. Let’s blame the victim here, eh?

    Did she ask him if he had RA before trying Opdivo? No. Did she include the RA Factor in any of his blood draws? No. Did she actually check his file for any indication of RA? Evidently not until she talked to Jim on the phone.

    She looked up his chart, and then she found the two blood test results confirming Rheumatoid Factor of major proportions. This was 2015, when Jim saw our family doctor, who referred Jim to a rheumatologist. Jim refused, because he doesn’t want to take any RA drugs, knowing how they affected several of our friends adversely (cancer, septic infections, death).

    Dr. P asked Jim how he has treated his RA, and he answered, “with diet, Vitamin D3, a good multivitamin, topical ointments and Witch Hazel, hot showers, a heating pad, and now a cold pack on my swollen knee.”

    When Jim told her that he’d have to cancel his appointment with her next Thursday and the next infusion of Opdivo, if he still cannot walk more than a few feet to the bathroom and back to the futon nest, she said, “I’m so sorry. I didn’t realize that you were in this much pain.”

    Really? Jim’s infusion nurse purportedly sent Dr. P an email after my call last Friday describing Jim’s pain. Jim called Dr. P Wednesday and left a message for her. I wrote her an email Weds. night, which described his pain and our treatments.

    IMMUNOTHERAPY AND RA

    Dr. P mentioned a study at Johns Hopkins about immunotherapy and RA, which I found on line:

    http://www.hopkinsmedicine.org/news/..._some_patients

    As this is a known potential problem with Opdivo, why isn’t it protocol to ask the patient if s/he has RA, or to test the patient’s blood for the RA Factor?

    On the 8 page medical history form, which I filled out for Jim, when we first saw Dr. P, nowhere was the question asked, “Do you have any kind of autoimmune disease?” The long list of diseases and illnesses to be checked did not include any autoimmune diseases. But it did ask what his parents’ medical history was and what caused their deaths. Is that more relevant?

    Jim told Dr. P that he didn’t want to give up on Opdivo, but that he couldn’t manage this pain through more treatments. She said, “Oh we can’t have that!” She told Jim that Opdivo is his best shot at survival, and she assured him that she would research every possible option for managing the inflammation during treatment. Well, thanks for that Dr. P, something you should have done at the very beginning in January. Now, Jim is in utter agony. Barn door closed after the horses escaped.

    She told Jim not to take Advil, and he said he stopped it after having a black tarry stool. He told her that he was taking Tylenol for pain, and she said, “That’s no good. It won’t help you.”

    Okay. What will help him?! It’s been a week of unrelenting pain throughout his entire body. She’s researching options. Shouldn’t she just know by now what those options are? Is this reaction that rare? No, it’s not.

    Right now it seems that the only way that Jim can get some decent sleep is taking a tsp. of codeine at night. Codeine has a warning for seniors/elderly folks.

    How do we balance all of these “It might help you, and it might also kill you” situations?

    BALANCING ACT AND BLAME


    I’m trying to keep an even keel right now, because we need to reduce our stress. But this has infuriated me and Jim, although he is much better at remaining calm, because I take on the anger. I see how much pain Jim is experiencing, and I feel it figuratively and literally (because I’m having an RA flare too).

    Jim has endured useless chemo and side effects, and now unbelievable pain from immunotherapy, because his doctor didn’t ask him about or test him for RA, before she ordered the Opdivo infusion. And prior to his infusion, she didn’t have a mitigating plan in place to reduce the inflammation during treatment.

    I vividly recall Dr. P saying to us in our first visit in January that immunotherapy would allow Jim to continue with his care providing for Jon. Now, Jim can’t move, and as much as he tries to help, he can’t. I’m staying up until 4:30 - 5:00 in the morning, so I can take Jon off of his food, give him his meds, and put his food back on. Of course, during that time, I’m also caring for Jim. Thankfully, Jon is going to sleep between 2 and 4 a.m., so that I can go to bed for a few hours.

    DOUBLE SHIFTS

    Double Shifts for us means that I’m working through Jim’s night shift, as well as doing everything else for our home and family. I’m doing things he used to do.

    This makes Jim sad and worried for me. He can see how tired I am (well, even Stevie Wonder could see how tired I am!), and he feels useless. I remind him that he’d be doing this for me, if the roles were reversed. “In sickness and in health.” We have lived by all of our vows for 25 years, and now that vow is being tested.

    Yesterday, I had to bring in the giant boxes from our Costco order, open the boxes, take out the supplies, although not heavy, still awkward, put them in the garage, and then take out the boxes to the garage. That may not sound like a big deal, but to me, it was exhausting. We have quite a collection of giant boxes of all shapes in our garage. I need to call the trash company for a private pick up, which means I have to drag all of those boxes out to the curb. They’ll ask me to break them down. I will laugh hysterically.

    Thankfully, our friend was here yesterday, when our 40 lb box of oranges arrived, and he brought them in for me.

    But Jon’s 9 cases of formula were supposed to be delivered yesterday, and they weren’t. Our friend was here and would have brought them in for me and stacked them in Jon’s closet. I called the pharmacy today, and they’ll be delivered Monday or Tuesday. Although our friend said, “Just text me, and I’ll be over in a few minutes to help you,” I feel like we are imposing on him. He has his own life and family. He had to take his Mom in for an MRI yesterday.

    TODAY

    Jim is feeling a bit better, but his neck is still quite sore, and his right knee is filled with fluid. Last night, I brought Jim a urine collection canister from Jon’s supplies. This allowed him to stay off of his feet (I worry about him falling) to give his knees a rest. He’s been able to make it to the bathroom a few times today, but it hasn’t been easy or pleasant for him.

    THANK YOU SO MUCH

    For reading my lengthy novellas! (I wrote this one in spurts over 2 days ~ constant interruptions with Jim’s and Jon’s needs.) For your love, prayers, support, compassion, kindness, caring, and friendship. We are forever grateful to you all.

    GOD BLESS YOU ON THIS GOOD FRIDAY~

    Love & Light,

    Roslyn, Jim, Jon,
    & Angel Michael
    xo xo xo xo
    Last edited by Earth Mother 2 Angels; 04-14-2017 at 07:49 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.

  16. The following 6 users say "thanks"


  17. #29
    Distinguished Community Member tic chick's Avatar
    Join Date
    Oct 2006
    Location
    Detroit, MI
    Posts
    697

    Default

    hey rose!

    i laughed at several parts of your post and i'm glad you can appreciate the absurdity of some parts of your problems.

    my younger brother was dx'ed with possible RA when he was around 3. i think the dx was later changed to some kind of synovial fluid disease in his knees, as he doesn't have anymore probs, although he did have surgery in his 30's on his knees. anyway, i'm just going to throw out some stuff that might help with pain.

    tramadol is a drug i take every so often, especially after a zumba class, as i have bone-on-bone arthritis and some pain in my left ankle, plus something similar to carpal tunnel syndrome on the top of my foot. tramadol ( https://en.wikipedia.org/wiki/Tramadol ) metabolizes into a stronger drug after ingestion. i have fleeting itching during the night. prolly the worst thing is that tramadol doesn't make me dopey. i feel like i have had a good night of painfree sleep, but my dreams are vivid and it feels like i am awake. i would say it makes me feel kind of high instead of drowsy down. the side effects are usually gone by morning. i also take it right before bed as it increases my tics to the point where i have a hard time falling asleep because of the tics if i take it 2-3 hours before bed.

    sometimes i use those "salonpas" capsaicin patches on my neck for pain. it seems to work. i also wear compression socks to keep down swelling. there are compression over-the-knee socks and tights (usually found at sporting goods stores for baseball players. they might even have compression knee sleeves). sometimes in the past, i would take an otc water pill for bloating. i dunno if that would work for ra swelling.

    the i herb health library says that fish oil has been shown to have good results for ra pain and possibly inflammation: http://healthlibrary.epnet.com/GetCo...chunkiid=21511

    you and your family are in the circle of people that i regularly pray for. i hope jim's pain subsides soon.

    may you all have a blessed Easter,
    jeannie

    p.s. do you use a box cutter to break down boxes? i find the tool indispensable for that purpose (i prolly have 20 around the house, i only know where about 3 of them are).

    i just came across this article in my facebook feed: http://theheartysoul.com/dangers-of-...hades/?t=SNHHL it talks about the effects of foods in the nightshade family and their possible effects on arthritis and inflammation in general. you've prolly come across similar articles, but in case not, it's a short interesting read. i have to say that i have tried several herbal and otc supplements and avoiding certain foods to achieve a certain effect. i've had good/negligible results. different bodies, different effects.
    Last edited by tic chick; 04-15-2017 at 11:59 AM.
    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

  18. The following 6 users say "thanks"


  19. #30
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,199
    Blog Entries
    16

    Default

    Hi Rose,

    I'm so so sorry Jim is in so much pain! I had hoped this would not happen. I hope the pain is at least a sign the cancer cells are being burned to hell by Jim's immune system. So no autoimmune diseases at all were on that form? Not even diabetes(type 1 diabetes is an autoimmune disease)?? Or MS?? If not that's really,really odd. My flu shot form from last year had a question about autoimmune disease for pete sake! Yes I would guess the family history etc usually helps docs figure out if autoimmune disease is a problem. This is NOT Jim's fault, but in my experience with Cerebral Palsy I have learned it is best for me to disclose every single thing about my body to my doctors even if they do not ask, because they often are so overloaded the doctors do not think to ask.
    It would be good for Jim to move even if it is painful because it prevents the joints from locking up and gives better blood flow.
    I hate how they make people break up boxes! I'm always like "disabled person here!" I would gladly break up boxes for you though! Praying you find a pain relief solution ASAP! I also pray you can rest so you don't get sick.
    Last edited by funnylegs4; 04-14-2017 at 09:19 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  20. The following 6 users say "thanks"


Page 3 of 19 FirstFirst 1234567813 ... 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.