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The irony of your statement, funky, is the great news of the immunotherapy working is that it's also CAUSED the audiovestibular toxicity reaction that's made me so sick the past 13 weeks. What took the cancer away has also taken my life away with it. And Chucks life too. Hopefully the toxicity will work it's way out of my body eventually and is not permanent....that is my prayer. Otherwise, it all seems like a cruel joke to be cancer free for now w/o the ability to live a life. I'm trying to put my expectations of how things "should be going" aside and let things play out as they will, it just gets hard sometimes.

Sp, I took 2 extra D3s today. I'm not feeling as horrid today, so who knows, right? 😁

Golden......I've had doctors assure me of all sorts of things that never happened! Who's ever heard of losing weight while nursing? Or sleeping while on steroids? 😂 I'm definitely going to taper down by 5mgs moving forward though...I think that's the prudent thing to do here.
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It sure does SUCK that you can't properly enjoy the great news of the immunotherapy working because of the horrific side effects of some of the other treatments.
Something has to give soon, and that is our prayer for you, as you and Chuck both deserve to be able to enjoy both your second leases on life.
I'm keeping you both lifted up in front of the ONLY One who can help you.
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((((Lea)))))) tapering off by 5 mg sounds good. I have had to taper off my antid a couple of times and have needed to go very slowly even though I am taking a very small dose. Right now I am down from 25 mg daily then 12.5 mg daily and now to 12.5 mg alternate days. and maybe I will try to cut the pills up more and go for 6.25 (good luck) if I need to. I'm doing it in about 10 day steps. I figure a week isn't quite enough for me to adjust. This is slower than I have been recommended by a dr.

I hear you as to how frustrating the weight gain is, especially if you know someone who has lost weight on the same meds. For me if 10% of people on the drug gain weight I am one of them - or get insomnia. When I delivered my third child -an 8 lb baby and the placenta and all, I weighed only 4 lbs less when I left hospital than when I went in 9 months pregnant. The doc was surprised and said, "You will lose that once you start nursing" Oh, yeah??? Not a chance!!! I had to diet every extra pound off, never mind nursing him for 6 months, having 2 other kids and a dh to care for. It's very hard work and discouraging. I know that. 💛

Hope the extra D3 helps.
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Sp.....I do take D3. Maybe I'll take more. I'm also going to taper by 5 mgs instead of 10 beginning Saturday bc this chit is INSANE. I feel like I've entered The Twilight Zone or something where everything feels OFF. I hate prednisone and still wonder if it's done a single thing to help me thus far? Nothing else has, thats for sure. Feeling irritable and po'ed today. Chuck told me to have a good cry and I said BUD, I'M ALL CRIED OUT AFTER MONTHS OF STEROID USE. UGH. Now I'm just annoyed. 😑 And seriously bloated. My bff lost weight while on this med, me, it'll take God knows how long to get rid of these chins.

Geaton, I'm not sick of posting.....just sick of my life as it stands right now. Shrunken down to the size of a nickel and lived within the confines of a few hundred square feet for the past few months.

Thank you for the prayers Ladies.....I can surely use them.
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Ongoing prayers from this end too. God knows your needs.

"...your Father knows what you need before you ask Him." Matt 6:8

Father God, we pray that you touch Lea, even this day, and ease her suffering. Lift her spirits as only you can and comfort her in her trials. I ask this in Jesus name.

"But unto you that fear my name shall the Sun of righteousness arise with healing in his wings; and ye shall go forth, and grow up as calves of the stall." Malachi 4:2
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LL, so frustrating (understatement). Don't get sick of posting as this guides our prayers so they can be specific. Matthew 20:29-34 is the story of the blind men who called out to Jesus as He was passing, "Lord, have mercy on us!". Jesus responded by asking, "*What* do you want me to do for you?� (my emphasis). Faith was not enough. Persistence was not enough. Specifics is what Jesus wanted (not needed). Even the example of The Lord's Prayer is only specific requests. Praying for specific needs: 1)��clarifies our minds. 2)��helps us define�our needs. 3)� emphasizes our dependence on and intimacy with God. 4)��makes us more alert to answers. 5)��increases our faith when God answers them specifically (so it cannot be counted as coincidental and therefore we give God the glory He deserves). LL, I am still praying that your dizziness will be completely healed! Any other requests, please let us know or PM someone. xoxo
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Lea: Hugs to you, dear lady.
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HI Lea I hate to be part of the have you "tried this" peanut gallery but if you are not already you may want to consider taking D3 to help with the prednisone tapering. Apparently prednisone can deplete D3. Just a thought.

I agree with graygrammie you may want to taper slower some even recommend alternating tapering. Prednisone is some bad stuff. I think aliens invented it.
🚀👾👽
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The titration has gone by 10 mgs per WEEK from 80 down to 40.
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I know you are following your doctor's directions, but gosh, what I see online about reducing prednisone dosage is not nearly as drastic. And the reason for tapering more slowly (reducing 5 mg at a time) is to avoid all the symptoms you are having. Can you talk to your doctor and see if he can adjust how you taper?
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Lea, sorry to hear about new negative symptoms. We love Costco but only buy what we really like or need. It probably helps that we don't have tons of storage space although ever since the pandemic we are overstocked on toilet paper and paper towels. I don't get carried away with something I might want one or two of but can only buy 2 x 8. Anyway just bringing up a subject to help you think about something other than what you are enduring if at all possible.
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Lea,

Praying that your withdrawal symptoms will ease up soon and that you will begin to feel better soon.

Sending love to you today and always.
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Ty, yeah. I was thinkin that.
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Hhere's a stupid question: 80 mg to 40 mg sounds like a huge jump, couldn't the titration be more gradual? Maybe 80 to 60 mg, then 60 to 40mg?
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Amen and amen!!!

Hang in there super sparkler woman! 🌟✨🎇🎆💖

"The darkest hour is always before dawn" Thomas Fuller
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Lealonnie, I am so sorry that you're having such a hard time tapering off of the prednisone.
I pray in the mighty name of Jesus that these horrible side effects leave you sooner than later so you can start to enjoy your life once again.
And all God's people say Amen and Amen!!!
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The prednisone withdrawal symptoms I've been having since Saturday (down from 80 to 40mgs) are HORRENDOUS. It's unfortunate that the taper coincided with the IVIG on Thursday so I only had 2 days to enjoy feeling pretty good before the chit hit the fan AGAIN. It's really depressing, tbh. The shakes, the overwhelming dizziness (an 8 or 9), splitting headaches, total exhaustion.......just mind boggling. I made it till 2 pm in my recliner the past 2 days, then off to bed. Today I'm hoping for a better day but Idk. I'm sick of reporting this stuff and can't wait to be past it all, please God.

Geaton, if your grandson has an RFID gizmo that allows him access to other people's private things, how's that NOT something that shouldn't be confiscated? The world has gone berserk 😑 I believe those radio frequency id readers are illegal and wallets are sold to house them so that they can't be read or transmit signals.

Golden, I agree with buying frivolous things once in a while. And leaving the List up on the WM+ app so I can delete from it when Chuck stops off at Safeway for a few things. I'm afraid to join Costco bc I let our membership lapse due to spending too much! 😂🤣 I miss their giant rotisserie chickens though.
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Good morning, everyone!

Praying for that pesky taper to ease off on its symptoms, already!
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LL, praying today is less dizzy for you. And tomorrow. And the next day... Regarding stores and minimums... Before we got a Costco, I couldn't leave a Target without spending $80. Now if I go to Costco, It's about $230 every time (mostly food). Now that Amazon lets you use your cc rewards points to pay for things, I buy all dry goods online that way. Even if the items cost slightly more, I've saved on gas and time so it's a wash in my mind. My corporate CapOne card gives me 2 points for every purchase... it's awesome. Signs of the times: Remember when teens were rascals whose mischief was things like TP-ing your trees or lighting Black Cats under your window on 4th of July? My 13-yr old grandson spent the night with us and brought his latest "toy"... an RFID scanner (which he assured me was "ok" to use???) barely bigger than a car key FOB. Then proceded to show me how he could turn on and off any electronic device in my home, unlock the neighbors' cars, get in to my neighbor's smart home, control things in the grocery store... yikes. Today I'm researching to see if his Dad needs to confiscate this thing. Oh, and same kid confessed that he wrote a school essay using Chat GPT and got 100% on it (and another "discussion" ensued). Sixth grade. I'm no tech slouch but he's taxing my neurons already. And his baby sister is even smarter. People, hold on to your hats... these coming years are going to be a wild ride.
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Good morning, Lea, Prayers for a blessed day!

“The LORD says, ‘I will rescue those who love me. I will protect those who trust in my name.’”—Psalm 91:14

Praying God's will be done - thank you. There are times I need to pray that as I have no sense/leading of what else to pray. I know praying scripture is also good.

Online ordering - oh my goodness. I often start an order and then leave it a few days to be sure. I order my supplements on line and my groceries so we are not talking frivolities here, but still...

I do believe that an occasional frivolity is good for the soul, even if not for the pocketbook!!!😁😁😁
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Lea: Prayers for the evening's dizzy spells to be lessened.
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Good idea Barb!!!
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Lea, if you know the village where your family's deli was, write to the Town Hall. Most small villages have town historians these days.

Was there a local paper your deli advertised in? Write to them.
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Lea, mono will definitely knock a person out - years ago, it was like having covid. And it certainly seems like we've all made our share of unwise decisions in life - my unwise decisions came a little later! 

Very interesting about your dad using outside distributors also - the Long Island deli's were a favorite of my father's to follow up with and visit at that time. For the first seventeen yrs of my life until I moved out, all that I lived on was deli food!
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Lealonnie,
I pray that same thing, thy will be done, after asking for your complete healing.
Because I don't want to demand things from God, but still asking Him anything.

Do you love the verse that Golden provided?
Romans 8:37.

Here is Romans 8:37, 8:38, and 8:39.

37 Yet in all these things we are more than conquerors through Him who loved us. 38 For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, 39 nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Have a happy Sunday!

Oh, and adding this:
Yesterday, my Costco order started at $235.00! Of course, I wasn't going to spend all that at the end of the month. So, I cut back the order to $65.00.
Then, clicked 'Place your order'. Later, I thought more about it, and rescheduled the order 4 days from now. Then, after some time passes, I am going to cancel it. I tell you this because you may be new to ordering online.
Knowing all the possible choices will help you to stop ordering too much stuff.
It happens! But my May budget is spent.
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ITRR: Ugh. Reminds me of the time I found a tiny eyeball in a can of Spaghetti-Os I'd opened to feed my son! Everyone was at my house from all sorts of agencies to examine that eyeball which was later determined to be "mold" HA-RIDICULOUS. 🙄 But a finger in a can of Pepsi wins the internet for today.

Ty gg and llama and NHWM. Yesterday deteriorated into a dizzy-fest in late afternoon w the taper but that's ok. I hung out in bed and feel better this morning. I am expecting setbacks.

Hope.....I went to Nassau Community College for awhile. Getting knocked out w mono for 6 weeks set me back a lot and contributed to me dropping out and making other unwise decisions in life. I'm still trying to think of dad's deli name.....there's nobody left to ask! Idk why Old Spice keeps popping into my head. I'm sure dad also used outside food distributors bc it was just he and my uncle running the deli. They did a lot of cooking, but not all of it.

Golden, what I usually pray for is "Thy will be done" bc I'm never sure what God's will is for me. That's the hard part: waiting and wondering. I also pray for Acceptance. If this is my new norm, I have to accept it. If it's temporary, same thing. One way or another, even w the state of the cancer, Acceptance of what IS is at the core of everything. Which leads to the one day at a time mentality. If you told me 3+ months ago I'd STILL be dizzy as chit today, I'd have freaked out and been depressed. Thank God we don't have crystal balls 😏

What's on your agenda for this Memorial day weekend? Nothing much for us ....same old same old. After signing up for the WM+ app, I'm ordering way too much stuff online. 😑. My goal for today and tomorrow: order NOTHING ONLINE FRIM ANYWHERE 😂🤣
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Ahhh, itrr - I found the tip of a latex glove finger in a Pepsi bottle. I had taken a mouthful and then spit it out pretty fast. I contacted them and the Canadian govt consumer branch with no satisfaction. Fortunately I had no ill effects.

Good morning, Lea. Prayers for a good day for you!

"Yet in all these things we are more than conquerors through Him who loved us."
Romans 8:37
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Fingers in food doesn't stop with meat. My mom, I saw it, found a finger in a can of Pepsi back in the 70s, they gave her a free case of Pepsi when she called to tell them. They were quick to come retrieve the can and finger, now I understand why, back then I thought they must have been in the neighborhood. I can't drink Pepsi to this day, trauma!
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Geaton, my grandma lost part of a finger in a hotdog processing plant way back in the 50s. Yep, it probably got processed with the rest of the meat and filler.

Now y'all will be thinking about that this weekend-of-many-cookouts, lol.

Lea, so glad to hear of positive steps in the right direction each day.
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Lea: Thank goodness that the dizzy feeling is at least somewhat less today.
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