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Thread: When Waves Collide

  1. #136
    Senior Member Emil El Zapato's Avatar
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    nice Shadowself...I like it...


    don't want to derail the thread...Palooka...check out the lounge thread I put up a video by John Prine and one by Shawn Phillips...wild shot you're a fan...
    “El revolucionario: te meteré la bota en el culo"

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  3. #137
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    Quote Originally posted by NotAPretender View Post
    nice Shadowself...I like it...


    don't want to derail the thread...Palooka...check out the lounge thread I put up a video by John Prine and one by Shawn Phillips...wild shot you're a fan...
    Yup. Both excellent but eons apart the way I hear 'em. I was a lightfoot fan and put phillips on a similar page along with crosby. Then prine came along 'n wrote a whole new book!! I probably got 20 names on my top ten list of singer/songwriters but prine is def in the top 5...

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  5. #138
    In Memoriam Shadowself's Avatar
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    Good Morning,

    Well today is the day I hopefully hear I'm changing to the Opdivo. While I know I have the approval I've not officially heard that I'm changing to it this week. I'm pretty sure I will be however.

    Great sighs of relief here as even now this last round has left its effects and I have just been so weak. I went to an event at my last job where they invited me to join in and while it was nice getting outdoors for the gathering it completely wore me out. Finding myself a place to sit down when I was just too dizzy to stand.

    I'll find out today but I've been wondering if they intentionally gave me a stronger dose knowing it would probably be my last to give me a little more umph before changing to the Opdivo. I do know it takes a little longer for the Opdivo to get started and have heard that when beginning the immunotherapy sometimes tumors can grow until it takes hold....so that might be the reason they gave me a stronger dose. But I'm just guessing at this point and will find out more later this morning.

    I'll be back later today to let you know what the outcome is.

    Have a great day!

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  7. #139
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    Well, if it wasn't a mistake that's good. But they should have told you! Good luck with the immunotherapy. I'm wishing you the best.

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  9. #140
    Administrator Aragorn's Avatar
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    Quote Originally posted by Dreamtimer View Post
    Quote Originally posted by Shadowself View Post
    Good Morning,

    Well today is the day I hopefully hear I'm changing to the Opdivo. While I know I have the approval I've not officially heard that I'm changing to it this week. I'm pretty sure I will be however.

    Great sighs of relief here as even now this last round has left its effects and I have just been so weak. I went to an event at my last job where they invited me to join in and while it was nice getting outdoors for the gathering it completely wore me out. Finding myself a place to sit down when I was just too dizzy to stand.

    I'll find out today but I've been wondering if they intentionally gave me a stronger dose knowing it would probably be my last to give me a little more umph before changing to the Opdivo. I do know it takes a little longer for the Opdivo to get started and have heard that when beginning the immunotherapy sometimes tumors can grow until it takes hold....so that might be the reason they gave me a stronger dose. But I'm just guessing at this point and will find out more later this morning.

    I'll be back later today to let you know what the outcome is.

    Have a great day!
    Well, if it wasn't a mistake that's good. But they should have told you! Good luck with the immunotherapy. I'm wishing you the best.

    = DEATH BEFORE DISHONOR =

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  11. #141
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    Quote Originally posted by Aragorn View Post
    Ditto from me too, Brook.

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  13. #142
    In Memoriam Shadowself's Avatar
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    Opdivo starts Wednesday!

    I spoke to them about the amount of chemo they gave me and she showed me it was the same amount as the last one. What she did explain to me was I was having what they call an "accumulative" chemo effect. What that is is a carry over of the chemo from the time before and is not out of my system and it accumulates...so it was like I already had some chemo in my system and added the new stuff to it making it stronger....thus the effect I was having of being overdosed.

    Fortunately I don't have to worry about that again. I'm even still having the effect of the chemo that is making me tired as hell. I came home and again slept till just now.

    So they gave me a pamphlet with all the statistics of Opdivo vs chemo but it's for Non Small Cell Lung Cancer because they have not made one yet for SCLC. Therefore the statistics don't apply to me. I'd share it but it makes no sense to as it's a totally different kind of cancer. It does have more information such as things to watch out for. If I get any of those symptoms they have to give me prednisone to calm down my immune system as it might get overloaded which is a common effect when you first start it. Apparently this stuff turns your immune system to full bore on and causes some side effects. But they have a fix for that. Eventually that calms down and your body adjusts.

    Anyhow I'm about to embark on a whole new experience and am just grateful I do not have to go through the absolute poisoning of my system to shrink some tumors.

    So Wednesday they give me an hour of education then the Opdivo. On Friday I get another scan to gauge where I'm at so they can gauge what the Opdivo is doing. It will also tell me what the chemo that was accumulating was doing. I'm quite interested in that as the reaction I just had should tell me if it was working or it stopped working.

    Friday after the scan I get to see my new grandson as that is when his c section is scheduled! Overall a good week ahead!
    Last edited by Shadowself, 25th September 2018 at 03:50.

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  15. #143
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    What great timing. Good luck!

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  17. #144
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    Quote Originally posted by Elen View Post
    Ditto from me too, Brook.
    And ME!!!!!!

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  19. #145
    In Memoriam Shadowself's Avatar
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    Well that was easy! The actual time it took was about 30 minutes. Most of the time was spent doing a questionnaire which I will have to do each time to monitor my health and any possible reactions to it. The rest of the time was spent letting me know what to possibly expect and what to do if anything strange arises.

    So far no reactions other than being tired. They did say that was the most reported effect but I've been awake since I got home.

    No adverse reactions yet....but they told me it could take up to three days for anything to arise.


    How nice that was to get out of there without that chemo hangover that starts as soon as you walk out! What a relief!.

    I actually feel pretty human. I have been experiencing some pretty severe pain in my right lung and am hoping that is from a healing/shrinking? Anyhow they increased my pain meds to two pills every four hours because I had to call them as I was in some pretty severe pain and told them I took an extra half pill which worked but did not last but two hours. So far the two pills every four hours seems to be working without wearing off.

    overall everything is good and I'm happy to be off the chemo!

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  21. #146
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    Quote Originally posted by Dreamtimer View Post
    What great timing. Good luck!
    Best to you.

    I have been watching GlobalBEM presentations.
    This is interesting and about frequencies.


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

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  23. #147
    In Memoriam Shadowself's Avatar
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    Well...to me...this is what it's all about! FAMILY!!!!

    Meet Zayden born this morning at 9:38 AM C section. 5 LB 15 OZ. Tomorrow afternoon I will be going back to see Finnegan meet his new brother.

    Zayden is totally his dad! Dark hair and he even has hair on his back...LOL Just like his dad! His little ears are so cute. They won't stay that way of course but both of them are squished the same way on both sides, and of course the hairy back will fall out and come back when he gets older. Has his dad's eyes which of course we have no idea yet what color they will be, but I'm betting brown like his dad. I'll take some pics of Finn and Baby Z tomorrow and share. I had a hard time letting him go when I had to leave. I'm nuts about these two boys!

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    He has more hair than I do! LOL

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    Last edited by Shadowself, 29th September 2018 at 00:50.

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  25. #148
    Senior Member Aianawa's Avatar
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    Beautifullll

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  27. #149
    In Memoriam Shadowself's Avatar
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    Good morning,

    Well, This is the third day and I suppose it's time to share this. It's going to come out anyhow in the next few weeks and there are some changes I'm having to deal with that are not quite on the bright side. I've been spending the last three days working very hard to keep anything negative from anybody I come across...My son, his wife, Lionhawk and friends in general. Lionhawk is aware of some of it and probably more aware than I'm giving him credit for but I've been working so hard not to worry him especially.

    Friday when the baby was born, about an hour after his birth I started to have a pretty severe allergic reaction to the Opdivo. It started on my neck and spread to my chest, back and face. Redness, itching, and welts. Even spread down my arms a bit.

    I was supposed to get my CT scan at 1PM so at about 10:30 I called the doctor's office and spoke to a nurse there. She said come in and I told her I had the CT scan to do. So she told me to keep it and let them know the rash is from the opdivo otherwise they might think it's from the dye and keep me there for tests and so on. So I did. She told me to take some Claritin I had from a reaction I had in the beginning of the year for something different and I did. It took away the redness, itching and all that was left was some welts and some left over scratches I had from the itching.

    At the radiology department they would not do the scan because they said the dye might cause a reaction from the dye to be worse...even though I've never had a reaction from the dye before.

    So I went to the doctors office. The doctor prescribed me some prednisone and then made me an appointment for Tuesday to see how I'm doing..if there were any changes to call and he let me know that I might have to stop the Opdivo. I asked what then? He said back on the chemo. Needless to say I was in shock about that time.

    He left me with the nurse who called in the prescription who was a new one for me I'd never met her before....and I asked her what would happen if I stayed on the opdivo....that the claritin pretty much cleared it all up anyhow...and she said the claritin would probably stop working but to keep taking it and I said well if it works why quit the opdivo? She said and I quote "it would eventually cause my skin to come off". I swear that is exactly what she said! I wish the doctor had been there when she said that!

    So I left, and proceeded to go see the new baby. Had a bit of a cry in the car then to the birthing center I went. While there I tried to keep my head up and just told the kids that I might have to stop the opdivo...and go back on the chemo. I told them then we'll cross that bridge when we get there.

    Next in walks this nurse who came in to check mama and baby and I said what a cool job taking care of new babies. She said yes it beat working in oncology down stairs as she had a hard time watching the patients choking and complaining that they felt like they were drowning....it was too hard for her and she transferred to the nursery and birthing center. I just looked at her and thought does she not see that I'm a cancer patient? I walk on the street and complete strangers come up to me and ask what kind of cancer do I have and how they beat whatever kind they have....or say they will pray for me or some such thing. I swear that is true. Complete strangers do that because the cap I wear is a dead give away. Not to mention I look sick most of the time. My face and neck were so swollen that day how could that nurse miss it? That was the last thing I needed to hear! Drowning?!? Crap!

    So I finally left the kid and the baby while I was trying to keep my chin up and went to pick up the prescription. I had to stop to pick up something to eat first before I could take it so I went to get something to fill my stomach then spent the next half hour crying in the parking lot. Last thing I wanted to do was upset Lionhawk with this at this time after the morning when it started and he has seen the rash at it's full break out.

    So the rash and itching went away. But my cough and pain has started to increase. I'm not sure this is from healing or not because I did not get the scan. So I went to see the baby again yesterday and even took a nap there on the couch they provide for the new dads with Finnegan who was tired too and we both slept on the couch for about half an hour. Then I awoke and realized I had missed taking my pain meds and spent the rest of the day readjusting the pain meds to accommodate the pain until later last night it finally went away. I tried a heating pad on the area of my liver which is painful as well as the right lung. I finally got the pain meds to adjust later last night and am okay again on the pain levels.

    So what could possibly happen next?

    My cat (who is an outdoor cat) and has been spayed so there are no male cats hanging around had vanished! This is not like her. She has been especially careful to go out and ask to come in regularly as she knows I'm sick and spends all her time inside with me on the bed or couch to be near me. In fact she has been spending more time inside with me than she usually does. I'm so worried something bad has happened to her! I've had a bad few couple of day and just am pretty much a wreck right now and have to keep up appearances so as not to worry Lionhawk...who knows there is something wrong anyhow.

    So I figured I'd share this as in the next few weeks there are going to be some decisions made that may not be to my best advantage afterall. My cat disappearing is like a sign of things to come in my mind and just really I suppose need some prayers things turn around and fast. I'm not going to ask what next...Because I might just get an answer that is not what I'd hoped for...and speaking of hope...it's starting to run low right now. I'm still fighting...but this is getting serious. Options are running low and I'm hoping the frequencies I've been getting take hold really soon!

    Sorry to share the bad news here. Who knows....it may turn around ...again I'm hoping...
    Last edited by Shadowself, 30th September 2018 at 14:37.

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  29. #150
    Senior Member Emil El Zapato's Avatar
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    that's tough...it seems the prednisone would be a better approach. I think your body will adjust...have faith...I am always praying for you...Nearly every day. Don't be too concerned about your cat. Cats will bug out if they sense illness, in your case it seems the kitty is sensing a change in your illness...perhaps the allergic reaction freaked it out a bit...it will return after things stabilize for you again.

    God Bless!
    “El revolucionario: te meteré la bota en el culo"

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