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Thread: When Waves Collide

  1. #76
    In Memoriam Shadowself's Avatar
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    Well that was fun....NOT!

    Yes Kathy you and NAP are correct it should not be such a big deal to get the Opdivo...but it's the best I've got right now and I understand why because this is the way of it for medical care in the United States. Sad to say but true non the less. Imaging if I had nothing it the way of medical insurance. Imagine if I did not pay for the Part B and Part G which is now deducted from my Social Security disability I have now. Best yet imagine if I did not qualify for the Disability!

    Well of course I did qualify as I'm pretty sick which again I've tried to mask the best I can with a bit of humor from time to time and just in the reporting of facts that others might someday gain if this they should incur this god awful disease.

    As I said before and reiterate: Be your best advocate! Ask questions, and find out what they are indeed doing to you and why.

    Today they added more meds to my pre meds. Totaling 8 different meds in one day. It took from 9AM until a bit after 3PM today to complete all the IV meds they put in my body....

    They added a new premed for nausea included with the Aloxi and one more which I can't remember at the moment. I'm sort of out of it as I just woke up about a half hour ago.

    They added two other things to the mix which at the moment I can't remember as again I'm sort of out of it.

    When I get in there tomorrow I will ask and write it down. I know tomorrow they are adding magnesium to the mix. Now I do take already 600 mgs of Magnesium a day already but for some reason they want to add more as my levels were down last week.

    Came home with a needle again in my chest so again I have to be careful sleeping so I don't disturb the dressing and dislodge the needle with a tube on the end that is capped off. It does make it easier as I don't have to get stuck three times in a row!

    Anyhow I'll let you know what the added meds were sometime tomorrow. I do know they are okay because I asked what they all were and were find based on general overall health. One was in fact today a vitamin supplement I just can't remember what it was right now. Based on that alone you can probably guess that my mind is not quite straight right now so I'm going to stop now and relax for the rest of the night that is left.

    I've decided to try St. John's wort for the depression as it's been recommended now a few times...it's herbal and does not have the physical side effects that concern me. If it does not work I will still talk to the staff of doctors that supply my meds. I may even mention to them that I've started it before my next appointment. I don't think they will object to me trying it for depression. We'll see....I'm doing it anyhow. Just thought I'd let you all know.

    On to day two tomorrow...by far the harder day in what I've experienced so far. It certainly was the last time that's for sure!

    Oh wait...I remembered what one of the things they gave me was...a big bag of fluid with potassium was added today as one of the things they added.

    The other thing they added today was Mannitol ...

    The adverse effect profile of cisplatin is well documented, but the prevention strategies to alleviate renal impairment due to treatment are less understood. Mannitol plus hydration has been used for several years to alleviate toxicity associated with cisplatin therapy.
    https://www.ncbi.nlm.nih.gov/pubmed/22298599

    The chemo meds I take are Cisplatin and Vp-16

    VP-16:
    Generic name: Etoposide
    Other trade names: Toposar, VePesid, Etopophos
    Other name: Etoposide Phosphate

    http://chemocare.com/chemotherapy/drug-info/VP-16.aspx

    http://chemocare.com/chemotherapy/dr...cisplatin.aspx



    And here's song that fits the occasion...No social crisis....just another tricky day for you!

    Last edited by Shadowself, 5th September 2018 at 23:18.

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  3. #77
    In Memoriam Shadowself's Avatar
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    Ah...now I know why they are adding the magnesium tomorrow:

    Effect of mannitol and magnesium on cisplatin-induced nephrotoxicity: A retrospective evaluation.

    Conclusions: Mannitol resulted in a statistically significant reduction in incidence and delayed the onset of CDDP nephrotoxicity.

    http://ascopubs.org/doi/abs/10.1200/...5_suppl.e20706

    Nephrotoxicity
    is toxicity in the kidneys. It is a poisonous effect of some substances, both toxic chemicals and medications, on renal function. There are various forms, and some drugs may affect renal function in more than one way. Nephrotoxins are substances displaying nephrotoxicity.


    Man I can't wait to get off this chemo!
    Last edited by Shadowself, 5th September 2018 at 23:28.

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  5. #78
    In Memoriam Shadowself's Avatar
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    Good Morning,

    Just touching base. Had a rough day and night but at least I walked out of the infusion center on my own.

    Lots of pain in the liver area...some in the right lung. Due to that I've been taking my pain meds an hour (sometimes two hours) earlier than prescribed. It helped with no bad side effects but at least it stopped the pain.

    Started the St John's wort yesterday at 2 every four hours...to coincide with my regularly scheduled meds. Hard to tell if it's doing anything yet as I'm going through the chemo and that supersedes anything else right at the moment.

    Last day of chemo ahead and hopefully this will be the last. The vp-16 chemo is not as bad as the cisplatin which carries over to the second day but it's not as strong. Yesterday I only got Ativan and Decadron with the magnesium and VP-16. It only took two hours and I was outta there.

    The stuff I could not remember yesterday was Emend....for nausea along with the Aloxi and Decadron. All three ar for nausea but the Decadron is a steroid and also used as an anti-inflammatory. Then of course was all the other stuff that added up to a day of sheer crap!

    http://chemocare.com/chemotherapy/dr.../decadron.aspx

    http://www.cancernetwork.com/nausea-...chemo-patients

    today should be easier....much easier as I get the Aloxi with the Decadron and vp=-16 then I'm done! Yeah!

    One reason I'm telling you all of these anti nausea drugs is if you know anybody that is getting chemo they do not need to go home and start vomiting. I get three in some of the treatments....I go home and can eat and hold my food down just fine. You need to eat for nourishment. That is just as important as the chemo.

    Okay ...later and just know I'm hanging in there!
    Last edited by Shadowself, 7th September 2018 at 13:22.

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  7. #79
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    Have a good meal and some good sleep, Brook. Bless you for continuing to share and fight.

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  9. #80
    In Memoriam Shadowself's Avatar
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    Good Morning,

    Wow...what a night. Thought I was going to cough my brains out! It's subsided now and believe it or not I'm still not wheezing. I was last night...all night long in fact. My neighbor recommended for the liver pain to put a heating pad on the area and so last night I slept with the heating pad on under that area and I think it helped.

    Today is a big day for me...the big 65! Let's hope it's the birth of the last day I have to do chemo ever again! That is what I wish for my birthday today!

    Lionhawk is going to make me some french toast this morning...my favorite treat!


    Later today I will start my frequencies again as I was not doing it during the chemo. Aside from shaky and weak...I'm not too bad this morning....hoping and praying this is the last of the chemo coma hangover!

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  11. #81
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    Happy Birthday!

    May all your wishes come true!


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  13. #82
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    Quote Originally posted by Melidae View Post
    Happy Birthday!

    May all your wishes come true!

    BUMP!!!!!!!

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  15. #83
    Administrator Aragorn's Avatar
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    Quote Originally posted by Kathy View Post
    Quote Originally posted by Melidae View Post
    Quote Originally posted by Shadowself View Post
    Today is a big day for me...the big 65! Let's hope it's the birth of the last day I have to do chemo ever again! That is what I wish for my birthday today!
    Happy Birthday!

    May all your wishes come true!

    BUMP!!!!!!!

    May your day be filled with the greatest of joys, dear Brook!


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    = DEATH BEFORE DISHONOR =

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    Wow. Happy day indeed. I hope the frequencies work well for you.


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    Happy Birthday Brook!! May Mr Tambourine Man play the song of your desire...

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  21. #86
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    Quote Originally posted by Aragorn View Post
    May your day be filled with the greatest of joys, dear Brook!


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    I second the motion for DAYS of continued celebration


    Source: https://www.youtube.com/watch?v=-GLrDrhHUew


    translation

    https://lyricstranslate.com/en/wie-s...were-born.html

    How Beautiful That You Were Born
    It can rain today,
    Be stormy or snowing,
    Because you shine
    Like the sunshine.
    Today is your birthday,
    So we celebrate,
    All your friends
    Are happy with you

    How beautiful that you were born,
    Otherwise we would have really missed you.
    How beautiful that we're together
    We congratulate you, birthday child!

    Our good wishes
    Have their reason:

    Please stay
    Happy and healthy for even longer.
    Seeing you so happy,
    Is what pleases us,
    There are already enough tears
    In this world.

    How beautiful that you were born,
    Otherwise we would have really missed you.
    How beautiful that we're together,
    We congratulate you, birthday child!

    Monday, Tuesday, Wednesday,
    It doesn't matter at all,
    Your birthday comes around
    Only once a year.
    So let's celebrate,
    The crackling pork,1
    Today there will be dancing,
    Singing and laughing.

    How beautiful that you were born,
    We would have really missed you otherwise.
    How beautiful that we're together,
    We congratulate you, birthday child!

    1. This is a loose translation. Literally means "that the rind (of bacon) cracks"

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  23. #87
    In Memoriam Shadowself's Avatar
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    Completely off topic:

    But Finally after three nominations my good friend Terry who is Director of Photography for Life Below Zero up in Alaska who's hard work just paid off won his Emmy! I'm so proud of him. He and my son worked together on many projects and they were great friends.

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    Here's a sample of his work over the years


    That made my day!!!



    This will always be the best of Terry however....this was about ten years ago atop the Great Pyramid!

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    Last edited by Shadowself, 10th September 2018 at 09:58.

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  25. #88
    In Memoriam Shadowself's Avatar
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    Well...Imagine my surprise...when I just found out the very next video in the que to the video I just posted of Terry's is an interview with my son!

    They did that interview about the Mystical Misfits camp at Burning man...I had no idea he did that interview until ten minutes ago.


    Not sure if anybody knows this but my son's ashes were in the head of the burning man in 2012 and released on the playa.
    Last edited by Shadowself, 10th September 2018 at 11:07.

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  27. #89
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    Wow, Brook. What a wonderful find. I didn't know that about your son and what a way to spread your ashes. We spread my mom's into the Irish Sea as the tide came in.

    I researched Burning Man a couple years ago. What an event. If things were different, esp. the hubby, I might go. What an experience it would be.

    Your son had quite a life. Made possible by you. I'm sure you were incredibly proud.

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  29. #90
    In Memoriam Shadowself's Avatar
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    I'll share a video of he and Terry and the crew including my youngest son who I gifted a ticket to when I figured he was old enough to appreciate it....I was there in 2005. John insisted I come and see what it was all about.

    I am a Mystikal Misfit and this is my camp.


    Source: https://www.youtube.com/watch?v=7NO3aiOfRow


    I know this is seriously off topic...but it's cathartic for sure.

    Here is the interview I just found today...

    Last edited by Shadowself, 10th September 2018 at 11:33.

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