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Thread: Jim's Update

  1. #741
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I'm so very sorry that your daughter had a setback. I can't even begin to imagine what you're going through. Many prayers are on their way for your daughter and you.

    I just looked up Naltrexone on our Drug Info link:

    https://medlineplus.gov/druginfo/meds/a685041.html

    The boxed warning regarding liver involvement: Jim has polyps on his liver, and Dr. K is keeping an eye on them.

    This part of the warning also concerned me:

    "If you experience any of the following symptoms, stop taking naltrexone and call your doctor immediately: excessive tiredness,unusual bleeding or bruising, loss of appetite, pain in the upper right part of your stomach that lasts more than a few days, light-colored bowel movements,dark urine, or yellowing of the skin or eyes."

    Jim already has fatigue, not helped by our erratic schedule in meeting Jon's needs, and he's at risk for bleeding given his low RBC, hematocrit, and hemoglobin. He can't take Ibuprofen for that reason. We definitely cannot risk loss of appetite.

    I know from what seems like hundreds of years of researching drugs that a boxed warning is giant red flag. (Before the internet, I had the Physician's Desk Reference for research.) Numerous physicians have told me that a boxed warning on a potential drug for my sons precluded prescribing it for them.

    I fear tempting fate. We are comfortable with MMJ, because there aren't dangerous potential side effects.

    Jim can still inquire, but if Dr. K says that he doesn't know about it, he won't prescribe it. Then, where would Jim go for an RX?

    I just think it sounds too risky for Jim. I feel pretty certain that he will agree, when I tell him about the potential side effects.

    Unless there are studies about Opdivo and Naltrexone interactions, I wouldn't feel safe about Jim taking it. Opdivo is immunotherapy, not chemotherapy. I just don't feel comfortable with it at this point.

    I truly do appreciate your advice and experiences, callyflower and Jeanie, and I'm very glad that it is helping you.

    I'm just a cautious Nervous Nellie about using it with Jim.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  3. #742
    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    :) I take LDN to keep cancer at bay and to improve my immune system for my MS. The dosage is 3.0 mg or 4.5 mg nightly and that is such a low dose it can't cause harm. In it's normal dosage it is 200 to 600 mg daily.

    I order mine by mail from www.thecompounder.com. Callyflower gets a cheaper one and may have a pharmacy.

    Go to the website www.lowdosenaltrexone.org and click on the cancer link and print that out for Jim to take to the Dr. That is how I got my doctor to RX it.Continued prayers. Jeanie :)
    Last edited by Jeanie Z; 12-30-2018 at 08:44 PM. Reason: typo

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  5. #743
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    Rose, I'm so glad to hear some good news. Thank you for the little reminder of what the past 2 years journey has been! Amazing what has been your reality for the past couple years on this cancer journey. I truly believe that your healthy eating and all that goes with meeting Jons daily needs which obviously keeps you moving. has really been a key factor. My daughter was reading a book called How Not to Die and I picked it up skimming some chapters and bottom line is eating fruits and vegetables and whole food is crucial to our health. No red meats. We don't eat any red meat haven't for a very long time. I do eat some chicken and ground turkey.
    I have a friend who also has a daughter with Down syndrome. She is in the hospital and has been over the holidays fighting for her life. She is battling Leukemia for the second time in her 13 years of life. It's awful to see what the treatments are doing ot her poor little body. She is looking at at least 2 years of treatments. Just and awful disease. Keeping the healing prayers going for your beautiful family!
    Mary Grace

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  7. #744
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    Rose, those warnings pertain to dosages much higher than what is in LDN. Naltrexone tablets come in 50 mg tablets and I believe multiple doses are used daily. LDN is a micro dose...anywhere from 1.5 mg to a max of 4.5 mg daily.

    For me, I get the most beautiful, vivid dreams with it at night. It's like going to the movies all night every night. Giving my brain a break from stress is really helpful and if cancer prevention is happening, too...all the better.

    There are LDN groups around where you can find an LDN friendly doc in your area.

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  9. #745
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    Quote Originally Posted by mg12061 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Rose, I'm so glad to hear some good news. Thank you for the little reminder of what the past 2 years journey has been! Amazing what has been your reality for the past couple years on this cancer journey. I truly believe that your healthy eating and all that goes with meeting Jons daily needs which obviously keeps you moving. has really been a key factor. My daughter was reading a book called How Not to Die and I picked it up skimming some chapters and bottom line is eating fruits and vegetables and whole food is crucial to our health. No red meats. We don't eat any red meat haven't for a very long time. I do eat some chicken and ground turkey.
    I have a friend who also has a daughter with Down syndrome. She is in the hospital and has been over the holidays fighting for her life. She is battling Leukemia for the second time in her 13 years of life. It's awful to see what the treatments are doing ot her poor little body. She is looking at at least 2 years of treatments. Just and awful disease. Keeping the healing prayers going for your beautiful family!
    Mary Grace
    Mary, I'm so sorry to hear of your friend's daughter's cancer! I pray she survives it and lives a long healthy life. Just like I have been praying for Jim. My friends who are Hindu and study nutrition say red meat is one of the most unclean, fattening things you can put into the human body. Turkey,Chicken and Fish are way better and actually have health benefits.

    Rose, I understand the memories of Dr P are painful. Maybe Jim would have less side effects if the radiation is blasted at the lung since its not so darn close to the vital organ of the brain? Maybe he can be given a smaller dose of radiation?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #746
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    Rose, overall it is good news and I celebrate with you. The fact that it is not in any lymph nodes I would think would be a good thing.

    It is so wonderful that the two of you have had these two years. Knowing you and Jim you will just keep fighting. If it comes to radiation, I would try not to panic too much. I have known some people who have done fairly well on it, with the only side effect being fatigue. Let's hope and pray that Jim can keep on going as he is. I am still praying for the tumor to get smaller.
    Virginia

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  13. #747
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    Rose - I admire your courage. As many responsibilities as you have, to take the time to respond and offer advice toother people is amazing, God Bless you and your family. I do hope things get better for both Jon and Jim. Your problems make mine seem trivial in comparison. I will not go into the many issues I am facing, except that I HATE street drugs more then ever, I do MMJ Once in a great while but haveing seen what it has done to a major component of my support network, UGH. I am here for them but when they are ready. Hope that you had a happy holiday and a better new year, of all people, you and your family deserve if.
    Blessings
    Alex44 AKA skypilot Steve

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  15. #748
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    ((((((Hugs to All))))))~

    Jeanie and callyflower ~

    I found this when I searched for Naltrexone and Opdivo:

    No chemotherapy agents are currently contraindicated assum-
    ing standard tests are done, howevert LDN should not be taken
    during treatment with Opdivo or Keytruda (or PD1 inhibitors)

    https://www.ldnresearchtrust.org/sit...-Sheet-USA.pdf

    I had a strong feeling that LDN would be contraindicated with immunotherapy.

    I'm very happy for you both that it is working well for you. Callyflower ~ Jim already has vivid dreams, however, they usually aren't beautiful. That would probably be an adverse side effect for him.

    Mary Grace ~

    I'm so sorry that your friend's daughter is battling leukemia. It's just so cruel that children get cancer. I will keep them in my prayers.

    Red meat is very hard to digest. It stays in your system for an extremely long time. For men, it's associated with prostate cancer. We're trying to convince John to cut down (cut out) his red meat consumption. He even admits that he has digestive problems with it, but still orders steaks and prime rib, when they go out. He cooked a prime rib for Christmas dinner! His brother in law had a stent placed this year, when a 90% blockage was found. He's now vegan. But that doesn't stop the red meat eating in the family.

    funnylegs4 and Virginia ~

    Thank you for your thoughts about radiation. We hope that it won't be needed, but we trust Dr. K, and we believe he will suggest the best options for Jim. He also listens to Jim, and he does conform to meet Jim's concerns.

    Alex ~

    I read your post, but haven't had a chance to reply. I think Chris gave you excellent advice. You can lead a horse to water, but you can't make it drink.

    You are always in my prayers too, and I wish for you a better, happier, healthier year in 2019.

    Thank you all for your love, prayers, support, and friendship.

    We love you and you and your loved ones are in our prayers.

    HAPPY HEALTHY NEW YEAR!

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  17. #749
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    :) A lot of people have had their cancer disappear after being on LDN. I was hoping that would happen for Jim.

    The side effects listed are for the large doses. My doctor said this (4.5 mg) was such a low dose he had no qualms about prescribing it as it likely would do nothing. He still writes my scripts 18 years later.

    Happy New Year! Jeanie :)

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  19. #750
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    ((((((Jeanie)))))) ~

    It's unfortunate that Jim can't try LDN, but we can't stop Opdivo. Jim can ask Dr. K, but I suspect he would advise Jim to stay on Opdivo. It might be different, if the tumor was shrinking, or the core was still dissipating, or if Jim was in remission. We are at the point where we need to trust and rely on Dr. K.

    We thank you so much for telling us about LDN, and we'll remember it for future reference. We also give thanks that it works so well for you.

    HAPPY NEW YEAR TO YOU TOO!

    You're always in our prayers!

    Love & Light,



    Rose
    Mom to Jon, 49, (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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