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  1. Replies
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    Compromises will need to be made. The home health...

    Compromises will need to be made. The home health agency should be able to send an aide to do Jim’s personal care. The compromise would be that you two would need to be more flexible with your...
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    You’re on your way. Stock up on super moisturizer...

    You’re on your way. Stock up on super moisturizer like Aquafor, look into some aloe Vera leaves to apply to the skin afterward (groceries sell them), and remember to hydrate. You may want to...
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    A RAV4? Fentanyl patches? Wow! What a...

    A RAV4? Fentanyl patches? Wow! What a difference a few days makes.

    I’m on my second RAV4. I forgot about “Pearl” that I drove from 2002-2013. It was so great that’s why I got another and I...
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    My mom had a Corolla and loved it. I drove it...

    My mom had a Corolla and loved it. I drove it until someone rear ended me and destroyed it. At least that made the decision of whether or not to sell it.

    I had a 4 speed Corolla that I bought in...
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    That’s good to know, Jeanie. It never really made...

    That’s good to know, Jeanie. It never really made sense that the tiny dose of naltrexone could block a dose of opioids. Glad to know you put it into practice!

    C
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    Rose, what Jim was doing earlier was precise,...

    Rose, what Jim was doing earlier was precise, tumor targeted, extended radiation. 25 minutes per treatment is a long time. Radiation to address the “tumor bed” in general is less targeted, and gives...
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    Rose, I strongly suggest you contact your nurse....

    Rose, I strongly suggest you contact your nurse. Taking pain meds when only in agonizing pain is a game no one wins as the pain will return. It may be time to start regular pain control to stay ahead...
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    The only thing about frequent blood draws is just...

    The only thing about frequent blood draws is just that...you are removing precious blood. When I was hospitalized with neutropenia, they agonized about drawing even the smallest amount. Just a...
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    Well crap! Please know that you can bother the...

    Well crap! Please know that you can bother the dickens out of Dr K whenever you have questions. He works for you and his orders for today are not set in stone.

    Neupogen is very easy to give at...
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    It doesn’t matter what the dose. Steroids are...

    It doesn’t matter what the dose. Steroids are rough on the stomach.
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    View Post

    Nexium isnít just for reflex. Itís commonly given with steroids or other meds that may cause stomach irritation. It was recommended I use one while on steroids all those years.

    Sorry itís a...
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    View Post

    Rose, I donít think you need to worry too much about the Nexium. It is only a problem because it reduces the acidity in the stomach and acid is what allows us to absorb iron from our food. Since Jim...
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    My daughter and I went to Denver a few weeks ago....

    My daughter and I went to Denver a few weeks ago. Fave photo. 5293
  14. Replies
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    Chiming in on the iPhone. I would say a big nope...

    Chiming in on the iPhone. I would say a big nope to the iphone6. It is a very old model and will soon be obsolete. I am new to the iPhone world (from BlackBerry) and got a XR six weeks ago,...
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    The skull is Sheepie's. My parents' neighbor had...

    The skull is Sheepie's. My parents' neighbor had two barbado sheep that would not stay home, and kept escaping to live with my parents' cows. Eventually the neighbor quit trying to keep them home,...
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    Rose, Just use white vinegar for soaking...

    Rose,

    Just use white vinegar for soaking berries. 1 tablespoon or so per quart of water. Let them soak about 5-10 minutes and then drain and let them dry. This works for any berry.

    I have...
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    Rose, Yes, go for the veggies and fruit. I...

    Rose, Yes, go for the veggies and fruit. I would think ANYTHING would be OK if soaked in either a vinegar solution or a veggie wash solution and then rinsed well. I do my strawberries in a bowl of...
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    Rose, I think you should contact Dr K and ask him...

    Rose, I think you should contact Dr K and ask him what, if any, precautions you need to be taking. Of course any peeled fruit or veg is safe. Cooked restaurant food would be fine as well. I ate...
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    Rose, No, I have never had purpura, but plenty...

    Rose, No, I have never had purpura, but plenty of my patients, and Mom did. Treatment involves solving the reason it occurred in the first place. In Jim's case it will be difficult as the steroids...
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    I think Jim has purpura, which wouldn't be...

    I think Jim has purpura, which wouldn't be unexpected due to his low platelets and history of steroid use.
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    I am deeply sorry for your loss. Hugs to you and...

    I am deeply sorry for your loss. Hugs to you and Jim. Be easy on yourselves, as grief is very hard work.

    C
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    Platelets are no big deal, and can be life...

    Platelets are no big deal, and can be life saving. Jim is prone to bleeding if platelets get too low. My nose was spontaneously bleeding when I went into ER with neutropenia and a platelet count of...
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    ..........

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    Rose, Thanks for checking on me. I am doing...

    Rose,
    Thanks for checking on me. I am doing great. I was discharged by the podiatrist about 11 days ago. I am slowly regaining function. Today I walked 1.7 miles at 3.5 mph...the longest and...
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    Funnylegs, As therapists, we ask questions and...

    Funnylegs, As therapists, we ask questions and observe patients doing various ADL's. Often we can suggest things to help make things "easier" or to not expend as much energy. It may involve...
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    I do wish you'd reconsider. Jim's services would...

    I do wish you'd reconsider. Jim's services would be vastly different than Jon's, simply because he is on Medicare. Having someone come and do labs from the home would just be wonderful. PT and OT...
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    Rose, please consider having Jim's doc write an...

    Rose, please consider having Jim's doc write an order for home health for Jim. He could qualify for nursing, home health aides, and OT and PT for home safety evaluations, ADL assessments and energy...
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    I'm doing great! Thanks for checking.

    I'm doing great! Thanks for checking.
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    Rose, I am doing great. Lots less pain and...

    Rose, I am doing great. Lots less pain and swelling, I am off pain meds, ROM of my toe is coming along. I also did a one hour workout on the weight machines at the gym today. I worked everything that...
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    Rose, I am on the mend. The wound looks much...

    Rose, I am on the mend. The wound looks much happier today. I simply cleaned the incisions with sterile saline, applied steri strips and covered with gauze. I think there was more irritation and...
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    ................

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    Propofol is a wonderful, very safe drug. You just...

    Propofol is a wonderful, very safe drug. You just don't want to be doing it at home without proper supervision. Propofol and versed would be considered "sedation" rather than "anesthesia" so maybe...
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    Rose, they may not have used the port even if...

    Rose, they may not have used the port even if you'd known. Sometimes the available staff is not comfortable with using ports or it goes against policy. You SURE don't want some amateur screwing with...
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    There is a sweet lady on my BC group who recently...

    There is a sweet lady on my BC group who recently had a bone marrow biopsy. She made it through OK. Was sedated, and needed a few days of rest/ice after. Hers came out OK as well. Fingers crossed...
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    I also have Felix, a bicolor domestic short hair....

    I also have Felix, a bicolor domestic short hair. He was a rescue from 14 years ago, and was a former feral. He's a real special boy. 5144
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    I love talking about my cats! Both Ziggy and...

    I love talking about my cats! Both Ziggy and Brillo are American Wirehairs. My neighbor breeds them and they are quite expensive, but I got them as gifts as Ziggy has a defect on his tail and Brillo...
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    ...........

    ...........
  38. Replies
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    Rose, so sorry Jim is not rallying this time....

    Rose, so sorry Jim is not rallying this time. He's had such a good run, that I think that makes it harder to comprehend that alas, he is human.

    I am wondering why the bone marrow test is...
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    So sorry Kathleen has issues as well. I have a...

    So sorry Kathleen has issues as well. I have a teeny tiny one on the right as well, but it isn't bothersome.

    I was on prednisone for the better part of 20 years and it masked a lot of issues....
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    Today was a better day. Last night I covered my...

    Today was a better day. Last night I covered my incisions and re-wrapped my foot, iced behind my knee, used my squeeze machine and slept elevated. This morning I put on the boot to see how long I...
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    Rose, all those decisions are tough ones, but...

    Rose, all those decisions are tough ones, but necessary. My father wrote a handwritten note with his specifications and took a copy to the funeral home the day before he took his life. In his case he...
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    I had a lapidus bunionectomy. There are minimally...

    I had a lapidus bunionectomy. There are minimally invasive bunion surgeries around but my foot has problems further up and would render a regular surgery ineffective. The change in my gait was also...
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    Hi Rose, Thanks for the offer of help. I am kind...

    Hi Rose, Thanks for the offer of help. I am kind of like an old cow though (I grew up on a small ranch) and would just as soon hide out in the brush and recover alone. That said, my PT husband and...
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    Somehow I can't get this posted right. Must be...

    Somehow I can't get this posted right. Must be the pain meds.
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    I had the "unveiling" today. I am also a new...

    I had the "unveiling" today. I am also a new convert to the Orgain shakes. I need extra protein for bone healing. I love the vanilla blended with frozen banana or mango.5139
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    Thank you, Rose! Surgery went well and I am...

    Thank you, Rose!

    Surgery went well and I am recovering with the help of my "kitty nursing team" who couldn't be happier to share bed rest with me.

    It's so sweet for you to take time to check...
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    Hi Rose, I'm glad he's finally been admitted. ...

    Hi Rose,

    I'm glad he's finally been admitted. When I had neutropenic fever, I would also feel OK, but weak, in between the episodes of shivering. The way I understand it, the shivering is the...
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    Don't sweat the small stuff. The van, my friend,...

    Don't sweat the small stuff. The van, my friend, is miniscule. It will get sorted.

    Thanks for the well wishes for me. I really dread it. Two weeks in bed 23/7 await me. Sounds wonderful, until...
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    Big hugs. Chin up.

    Big hugs. Chin up.
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    Rose, I think I would demand that a wound care...

    Rose, I think I would demand that a wound care nurse come out. She needs to see the drainage in all its glory and not depend on photos and the word of the regular nurse.

    I also worry about the...
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    Whew! You dodged a bullet. See, I had...

    Whew! You dodged a bullet. See, I had neutropenic fever, and my fever of 100.6 soared to 104.3 in a matter of minutes accompanied by uncontrollable shaking chills. Thank goodness I had gone to ER....
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    https://chemocare.com/chemotherapy/side-effects/fe...

    https://chemocare.com/chemotherapy/side-effects/fever-neutropenic-fever-and-their-relationship-to-chemotherapy.aspx
  53. Replies
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    Darling! You need to call and call NOW!!!!!!! I...

    Darling! You need to call and call NOW!!!!!!! I don't mean to scare you, but he could have neutropenic fever and that is a life threatening emergency. Please call now! There is an on-call doc, I...
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    Rose, just give the Claritin 3 days in a row....

    Rose, just give the Claritin 3 days in a row. That's the best you can do.

    Wish I could take your greens. I just got a new cold press juicer and I would grind them right up in it! Tomorrow I am...
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    Rose, I am so sorry you are upset. Perhaps I can...

    Rose, I am so sorry you are upset. Perhaps I can help.

    When I did the immune system reboot in 2010 to fight the MG, the goal was to get to ZERO WBC. When I hit that point I injected neupogen...
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    No worries, Rose. It didn't upset me in the...

    No worries, Rose. It didn't upset me in the least!

    Those phone calls are tough! I think all of us remember "the call."
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    Today was the day three years ago that I got my...

    Today was the day three years ago that I got my diagnosis. I was anticipating it, and had told no one about the testing. I was lying in bed, paralyzed with fear, and at 9:12 am the radiologist called...
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    Rose, I hope the decaf will help. It's worth a...

    Rose, I hope the decaf will help. It's worth a try at least.

    My daughter got her first job! She interviewed at the university bookstore on Thursday and started on Friday. She even told her boss...
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    Decaf espresso (there IS such a thing) may...

    Decaf espresso (there IS such a thing) may decrease the peeing a bit while still letting him enjoy the coffee experience.
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    Get the wound care nurse regardless. I think it...

    Get the wound care nurse regardless. I think it will be a constant battle to get your regular nurse to do her job adequately as far as the wounds go.

    With pseudomonas in his urine and open...
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    Definitely wait to turn so the nurse can help as...

    Definitely wait to turn so the nurse can help as well as evaluate his wounds.

    Hang in there.
  62. Replies
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    Rose, those warnings pertain to dosages much...

    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...
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    LOL! Daisy! It's funny, because I won an online...

    LOL! Daisy! It's funny, because I won an online contest to name a baby giraffe at a nearby wildlife conservation center in September. In that case, the name I chose was Cornelius. He's a cute...
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    Rose, I had studied LDN a long time ago. When I...

    Rose, I had studied LDN a long time ago. When I began seeing a functional medicine MD, he recommended it for the MG and of course now I use it to hopefully prevent more cancer. My daughter uses it as...
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    I also take LDN, as does my daughter who has...

    I also take LDN, as does my daughter who has autism. My 3 mos supply costs $68.
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    I was thinking "Daisy" for your Roomba. It's a...

    I was thinking "Daisy" for your Roomba. It's a pretty flower name like Rose, and she will keep your home "fresh as a Daisy."

    Rose and Daisy...2019's Dream Team!
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    Merry Christmas to all of you! I hope you can...

    Merry Christmas to all of you! I hope you can enjoy a peaceful holiday.

    C
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    I would rule out a UTI with Jim. They have the...

    I would rule out a UTI with Jim. They have the same symptoms as prostate issues. Even the drugstore carries home UTI test kits. If he does have a UTI, quick action is needed as they can get bad fast...
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    Rose, has anyone considered that Jon may have...

    Rose, has anyone considered that Jon may have congestive heart failure? His symptoms are an exaggerated version of my mom's. She had swelling of legs and even trunk. Her clothes became snug, she...
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    Rose, the wounds are very concerning to me. May I...

    Rose, the wounds are very concerning to me. May I suggest you begin photographing them each time you tend to them? You can then email them to the nurse for input.

    My mom had MRSA on her leg the...
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    Rose, Here is a lovely recipe you might enjoy. I...

    Rose, Here is a lovely recipe you might enjoy. I love it with lots of avocado on top!
    https://vegetariangastronomy.com/vegan-tortilla-soup/
  72. Replies
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    Well, my mom had EMT's come out for an hour with...

    Well, my mom had EMT's come out for an hour with no transport when she had a nosebleed. They collected her from her home after a fall in an ice storm and provided transport to ER. A few days before...
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    Call the non-emergency number for EMT's and see...

    Call the non-emergency number for EMT's and see if they will help. After all, they come out to pick people off the floor, do welfare checks, etc.

    Take care.
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    I know we've discussed RSO before and you are...

    I know we've discussed RSO before and you are hesitant as a solvent is used to make it. However, the protocol of 60 grams over 90 days has produced some good results with dire cases. It might be...
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    It's hard to feel optimistic when there is an...

    It's hard to feel optimistic when there is an invader residing within your body. I wish Jim could comprehend how huge it is that he maintained the tumor size. Most lung cancers spread like wildfire. ...
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