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Lea: Hugs to you AND Chuck.
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I am crying for you and for Chuck. Maybe that sounds crazy because we don’t really know each other. But, I would feel EXACTLY as you do seeing my DH’s pain.

I am thanking God that you had time in your chair with the ever faithful Honey with you.
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Lea,

So glad that you are able to get a video appointment. A long car ride would be awful right now.
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I understand, Lea. About it being the one thing that shatters you.
I am so glad you have scheduled the talk and it seems to me so preferrable to go to the office where the only other things, other than tests, he can do THERE is say "follow my finger".

My love to you woman.
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Ok.....I rescheduled a VIDEO appt w the neurologist on Fri afternoon telling him I couldn't sit in the car for a 120 mile roundtrip due to dizziness. I said I need help bc maybe something was missed at the hospital, I'm no better after 4 days on prednisone, please look over my chart etc. If he determines more tests are in order then so be it.

Of course Chuck can have his tears Alva, we all are entitled to our valid emotions. It just kills me to witness that, was my point. It's the one thing that shatters me 😟
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Lea, Thanks for your note to us.

Please let Chuck have his tears.
Honestly they wash us clean, give us strength, renew us. If they build in our hearts and head without release it's impossible. Let him express all he is feeling.

I remember after a year of my chemo I had a scary chest xray and had to have a scan. I pretty much had myself all dead and buried. After the scan I wouldn't leave the place until they had someone read it. As I was a nurse employee they got the radiologist who came out and said "Well, I don't know what that shadow was, but there's not a thing there NOW".

N. and I made it into the hall where he caved, grabbed me and began weeping, holding me and saying "We have more time; we have more time" over and over. His weeping made me weep.

It's just a release. A release of all the stuff jamming our heads up.

You made me laugh with "more follow my finger".................the neuro exam.
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Bandy, 6 days in hospital was not wasted.....they had to eliminate everything else from being an issue in order to point to immunotherapy as being the cause of my issues. I HAD a head and neck CT scan w and w/o contrast and an MRI w contrast. Nothing of note was missed, I don't believe, and I'm not interested in spinal taps etc. If this chaos doesn't resolve by thurs or get much better, I'll ask oncology what's next.
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Pleading my case for going all "NURSEY " on you below.

When my Mom was in her last days she had an indwelling catheter pullling on her, causing pain. I went to the desk for "good" tape, came back, and was with her in the bathroom, knelt down between her legs in my best skirt and shawl (I NEVER EVER wear skirts) and her sitting on the toilet, Late 90s, so ill, so reduced, and I am just taping away when I hear from over my head......
"Just STOP treating me like a NURSE!!!!!!!".
in her best "Francy-is-fighting-mad voice".
Will never forget it. The pain of it. And the beauty of her strength.. Her FURY!

But the truth is, as Eric Liddell said in Chariots of Fire:
"..thanks for reminding me that I AM..............and shall ever be whilst I breathe..................................a NURSE".
(Wait. Changed that last a bit. He actually said "A SCOT".
Favorite film after Zeferelli's Romeo and Juliet. Know every word in the script by heart by now, I think.)
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Sp, ty. My doctor says he's aware of these rare side effects from mainly the Obdivo, but they're so hard to diagnose and so rare, which seems to be true. The only sane path is to stop the therapy that's causing such terrible issues. Which I agree with. But it's a bitter pill, that's for sure. I'm praying to be in remission right now after the 2 infusions....or hear there's some other "answer" for me to extend my life. Judging by Dr Cs blathering yesterday, I doubt it.

Alva, I read the whole article out loud to Chuck. I take no offense at ALL with everyone trying to help me or you acting nursey. I appreciate it in fact. I see no reason to visit a neurologist unless my oncologist cannot get rid of these symptoms in time. Truth is, it's all guesswork w/o empirical evidence to point to this being A B C or D. More "follow my finger" and all that chit has been done 100x. Dr C made it clear a neurologists eyes on me does not hurt unless he had ideas on treatments they'd disagree with. Oncology prevails. Pointless and this old lady's tired and worn out.

I've had all those tests mentioned while in the hospital and am obviously having some sort of irAE from the Obdiva and Yervoy duo treatments. No brain swelling showed up on MRI or ct scan. Which doesn't mean inflammation is NOT the issue. What I've not had is hi dose IV steroids or antiviral or an EEG. I will speak to Dr C on Thurs.

Im not really better from prednisone yet, just up at 330am each morn now even with Xanax. I can hold my head up about 2" higher now where I haven't been able to before; it just hung down. Head still swimming like I'm dead drunk, still needing walker 100% of the time. Hearing improved from 10 to 8, I'd say, after 3rd day on steroids. He also said me taking 6 pills on Sat by mistake was no big deal, in the scheme of things.

The main takeaway from that article was no more treatments for me, it's too risky. Which I agree with. Scary stuff. So again I'll leave this in God's hands bc that's the only sane option today. What's wrong at this very moment? Nothing. I'm sitting on my recliner w Honey on my lap and I'm not dizzy if I don't move my head.

Except I caught Chuck crying this morning and THAT is what seriously kills me here. In 18 years together, he's been my rock, or at least it's felt that way. God give us the strength we need to face all this together, that's my prayer. I wish I could drive bc there's a beautiful old church nearby that I'd love to go visit, alone. It's what I did many years ago when I was trying to get sober. I visited that church and got down on my knees and asked God to help me w something bigger than me. And He sent me to AA the next day to humble myself and admit that I was powerless over alcohol, and that's the moment when I began to heal.
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Lealonnie, I am praying that the Lord of the universe makes Himself known to you in a way that you've never experienced before, and that He will give your doctors the wisdom and discernment needed to ensure that you're receiving the best care and treatments possible.
It is now ALL in Gods hands(as it always has been.) "And we know that in ALL(my emphasis added)things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28.
May you see Gods goodness even on your darkest days and hopefully you can feel all the love coming from us on this forum,
And may heaven be overflowing with all the prayers being sent up on your behalf from the good folks on here.
We will try our best to be strong for you on days when you can't be.
May God bless you and keep you, and make His face to shine on you and give you His peace.
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Just a Good morning and a ((HUG)) 💞
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Morning, Lea. Quick check in to see how you slept, with help of the "good drug".

I just read SP19690 post from nih.gov - article on encephalitis as a rare side effect of the immunotherapy drugs. Bandy made me read it, and asked if I thought you should consider keeping that neuro appointment.
Truth is that at this point, what do I know, given the researchers themselves are only beginning to have a clue on this one.

I just want to make sure that you speed read this one if you feel up to it, Lea. Or ask DD to check it out for you and let you know what she thinks. Trust you to make decisions best for you.

SP's post: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469590/

You must forgive us if we are all out here scrambling through the internet trying to find "THE ANSWER".
But I promise you THIS! The best folk in medicine know each patient is a mystery, a puzzle they MUST solve, and this is what they do, exhausted they may be, for patients they love.
So I am saying--I am ASKING--that you look on this as a manifestation of the love this entire Forum has for you. Whether it is an article or celery juice, we are simply desperate to help.
I swear, if you tell me to, I will NEVER go "all nursey" on you again.
And wondering, too, what DID the doc tell you to do about the pred now? Are you still on it? (Speaking of going all nursey).
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Scripture du jour: "When the cares of my heart are many, your consolations cheer my soul." - Psalm 94:19 "If�God�hadn�t been there for me, ����I never would have made it. The minute I said, 'I�m slipping, I�m falling,' ����your love,�God, took hold and held me fast. When I was upset and beside myself, ����you calmed me down and cheered me up." - Psalm 94:17-19 (The Message) LL, in spite of everything...may your soul be cheered today! xoxo
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Starting today’s posts with the prayer that never fails:

Thy good will be done, Lord.
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Lea: Hugs sent, dear lady.
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I won’t write a long post because what I would say exactly echoes Alva.

Wishing you a night a peace and deep rest.
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Lea- my stomach just dropped after reading the latest news in your post. I felt numb. I wish I had words to write that make you feel better. Many hugs to you tonight. Just know you are loved and cared for by many in this forum.
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Sending prayers this evening. Sleep well and hope there is some improvement tomorrow.
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Lea i found a study done about the side effects you have because of the 2 drugs you were on for the immune therapy. The opdivo is specifically mentioned more for this but keytruda also causes it. Basically what I got was your brain inflammation is a form of encephalitis and it is rare. Might be something to have your daughter or Chuck read and maybe print out for the doctor.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469590/
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Lea, {{{{{{hugs}}}}}}. Know that lots of us are holding you in our hearts.
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Way2tired, ty. Thats what I'm hoping for too. First PET was mid Jan and very bad. Blood numbers after #1 treatment showed liver function back to normal, and bone lesions improving. Treatment #2 was 2/23 and set this toxic reaction in motion.
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Hugs, prayers continue…may you have good rest, and peace that passes all understanding
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Lea, I’ve not been following your time line , so I don’t know if this is your first scan after therapy , but when my Dad had immunotherapy , some tumors disappeared and all the others shrunk and became dormant for 6 years .

Also , the immunotherapy kept working for awhile. So like his second and third scans were better than the first set of scans taken after therapy was given . I’m not sure but I think it was somewhere like over 3-6 months that each scan showed improvement from the previous one . So maybe that can be the case for you too .
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Lea I am sorry to hear that they are stopping the immune therapy. Hopefully your scans show a remission for your cancer.
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My friend. Oh, I wish I could hug you tonight.

In lieu of that, I offer you this song. It’s the one that Cwillie references below.

Abide with me:

https://youtu.be/GnagUvvpGjw

Much love to you and Chuck.
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Hope, per your link, "TIL therapy is also still likely years away from being approved for use outside clinical trials, which would open it up to many more patients with metastatic melanoma." It's also used in conjunction with chemo.

I will speak to Dr C on Thurs to see if they even offer such trials or if I'd be a candidate.

Thank you.
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Lea, I wanted to send you the below link...

https://www.google.com/url?esrc=s&q=&rct=j&sa=U&url=https://www.nbcnews.com/health/cancer/new-cell-based-therapy-melanoma-effective-existing-treatment-trial-fin-rcna46935&ved=2ahUKEwi6wqnKzev9AhWNjYkEHUX7B3oQFnoECAoQAg&usg=AOvVaw3GyD1fb9PKFumi0Y-KG9Um
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Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.
🤗🤗🤗
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Lea - I'm so very sorry to hear about the findings from immunotherapy - but I hope you find that the two treatments you've had has had great results for you.

I'm not in the medical field, but I just quickly looked up if there are other alternatives to immunotherapy and I'm just copying the below response....

"Alternative options of cancer immunotherapy such as CAR T cell therapy, oncolytic virus therapy, cancer vaccine provide new avenues in the direction of targeted killing tumor cells and provide better strategies to deal with toxic side effects of conventional therapy."

Lea, perhaps there are other better options for you - they're always coming up with new trials and methods - and nowadays, it's even feasible for doctors in other states to partner with cancer hospitals in other cities, like Sloan Kettering in NYC - certain hospitals are on the cutting edge of new treatments and trials. I just wanted to share that if it's of any help.

Sending you tons of prayers and blessings for more promising results and a most positive outcome.
XO
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Gentle hugs, lea and prayers. We don't know what the future holds but we know who holds the future.

Proverbs 18:24 “A man of many companions may come to ruin, but there is a friend who sticks closer than a brother.” Jesus is that friend.
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