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BB, I don't think it's a good idea for medical people to be telling us to wash our eyes out w anything when there's been no diagnosis made. I don't have blepharitis, no. Or that awful sounding virus that starts with conjunctivitis. I have Iritis, as diagnosed by my Opthamologist thankfully, after he looked inside my eyes with his equipment to see the inflammation. My eyes are swollen and red and look like little slits.
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Lea, (((hugs))). Scrubbing your eyes with baby shampoo is a treatment for marginal blepharitis. Probably not what you have.

It was recommended to me many years ago for my pre-teen daughter's crusty eyes.

I will say that there is an awful virus going around t he at starts with pretty severe conjunctivitis; it gen proceeds to put you in bed with total exhaustion for a week. My ex, one of my daughters and I all had it a few weeks back.
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Fawnby, did this person also ascribe to putting leeches on her skin to suck all that bad demonic blood out? 🙄 At least she wasn't an NP you were paying $$$ to for a consult! 😂🤣😑

Cx, unfortunately the dizziness is no better. I was praying for a miracle myself. But so far, nothing has worked to calm this down. I think it just has to run it's course, personally. I hope it has no other tricks up its sleeve, either.
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Oh, my gosh with that NP. What in the world could shampoo do to help your 👁️ situation? Does she not see all of your other side effects? 🤦🏻‍♀️

Good to hear about the treatment helping your neuropathy! SOMETHING good coming out of all this craziness! 😛

Still praying for the dizziness to leave already, so you don’t have to go back to those steroids. 😘
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I'm really sorry you're having this eye problem. I hope you'll find relief for it.

Someone also told me to wash my eyes out with baby shampoo! I was flabbergasted, but it seems that people think eyelashes need washing and that baby shampoo is beneficial for the follicles? (This suggestion came from someone who isn't known for good common sense, however. She believes that a demon inhabited her ex and that she'll never be able to use a computer because of her body magnetic fields being out of whack.) Note: I didn't wash my eyes with baby shampoo.

I think of you often, Lealonnie, and keep you in my prayers.

Love from Fawnby
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RD, well I have inflammation of my inner eyeballs known as Iritis:

Iritis is the inflammation of the colored part of your eye (iris). It can cause symptoms such as eye pain, light sensitivity, headache, and decreased vision. It can lead to serious problems such as severe vision loss and even blindness. Infection, injury, and autoimmune disease are major causes.

Maybe that's why I'm getting so many headaches. I have blurry vision, itchy eyes, and sensitivity to light along with crusty eyelids and gritty eyes. The idiotic NP told me to wash my eyes out with baby shampoo yesterday! I told her absolutely not until I got a diagnosis from the Opthamologist! Ridiculous. The Kaiser I Care team called me yesterday and got me an appointment today, The doc prescribed steroid eye drops 4x a day and I'll call him in a week for a follow up. This is probably coming from the inflammation of my central nervous system, the audiovestibular toxicity reaction I had to the immunotherapy. Yet another lovely side effect 🙄

I will email Dr C later and ask his opinion.
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Hope today's appointment went as well as possible
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Love the positivity from Dr. C.
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Lea,

I can’t imagine having to keep up with all of what you are going through.

You have done all that you possibly could to make this tolerable. I use the word tolerable very loosely, because I know that there are days when it isn’t very tolerable at all.

Our hearts are with you today and always.
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Riverdale, I get up out of bed and dressed every day. Today I'm going to see the Opthamologist about my eyes which have been bothering me for 2 months now. The poster you mention I STILL don't like and STILL leave comments for, yesterday was the last one in fact. We have to remember that comments are not anonymous for everyone....some people are able to see all avatars and don't have the issue the rest of us are having.

GrayGrammie, I forgot to thank you for the Aspercreme idea! I may give it a try myself on the soles of my feet but the huge headaches have greatly subsided, thank God.

The IVIG did nothing to improve my dizziness, unfortunately. I'll go back on 10mg of prednisone on Monday if there's no improvement by then. What I have noticed is the neuropathy in my hands and feet is gone......and IVIG is used for neuropathy which I did not know. So that's a good thing. The NP could not tell if the lump on my outer elbow is a lump or part of my anatomy so she said "keep an eye on it" as if I wasn't going to do that anyway.

Dr C came by to chat while I was having my infusion and said he had a couple patients w Myasthena Gravis as a result of immunotherapy. Both of them DID recover in time, about a year. So he's not going to consider my situation permanent at all. He wants to proceed with IVIG infusions every 4 weeks so I'm okay with that.
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Sending hugs, prayers and love your way!
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LL, thinking of you! ((hug du jour))
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I am so sorry you don't feel like your former self. There is a poster you didn't care for (very understandable) who is recently active with inane responses. I recall very humorous remarks you used to make regarding this situation. I feel as though AC has become this clandestine forum with all they claim to be attempting to fix yet most remains the same. It has become so easy to remain anonymous which is not really ideal but nothing else to do about it.

I have had many days in my life when I didn't want to get out of bed. Now I am as sick as a dog after spending time with grandkids and catching all they had yet I keep getting up. I think there is no longer the hopelessness regarding my mother. My wish for you is the desire to want to get out of bed and I realize the dizziness makes that very difficult but I hope you find ways or times to overcome it. You have so much to offer to those near you and to all of us far away. Please stay strong.
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Bm
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Cx, the hip pain is from arthritis and the need for replacement as I had with the right hip in 2017. Which is not going to happen now.

Today's IVIG is unlikely to bring me relief bc none of the others have done a darn thing to help me. The NP I met with today wants me to go back on 10mg of prednisone to counteract the negative reaction I'm having from getting off of them. I want to wait awhile which she thinks is a bad idea. Ugh. I just can't win here no how. The thought of taking that crap again gives me the Willie's, but the thought of hobbling around on a walker due to insane dizziness also gives me the Willie's 😑

Anyway, sitting here on the recliner in the cancer center getting my infusion right now which takes about 3.5 hours.

I hope you all have a good day. Thanks for the hugs and well wishes.
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Lealonnie, praying that your infusion today helps you feel at least some better and that the horrible side effects you're experiencing leave sooner than later.
I along with others on here are believing that they will, and we're thanking the Good Lord in advance for that.
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LL, thinking of you this morning, praying all goes as well as it can. ((hug du jour))
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"The infusions are ruining their lives and killing them, which they prefer over the thought of dying from cancer." Lea that is horrible and sad all at the same time.

Sending you happy thoughts for your IVG treatment today.
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Good morning Lea, I’m still keeping up with you. I hope we all can keep in mind the original post you made sharing your diagnosis and asking for prayers. You shouldn’t need to defend or explain repeatedly as you’ve quickly become so well versed in your medical situation. Can’t imagine after 30 years of us dealing with our adult son and his many complexities, not being knowledgeable about it all, and you’ve had a half year crash course in quickly learning so much. Prayers for IVIG going well today and for peace in the days to come❤️
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Praying you will get some relief by having the IVIF. Good luck today!
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Da*n cancer!
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Lea,
Thoughts and prayers, many hugs coming your way tonight and tomorrow.
🧸️
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Lea: Hugs. 💚💚
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Just checking in on you while I’m out of town for a loved one’s memorial service.

I’m so sorry about your hip pain! Is that new, or did it come with the toxic reaction/side effects?

Gentle hugs to you!
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Lea,

I am praying with you.

I understand how you feel. You know the facts about this particular type of cancer. I am sure that it is more than you ever wanted to know on the topic!

Unfortunately, you got your education on melanoma the hard way. No one wants to learn about cancer by experiencing it themselves.

You’re a realist, which is a healthy way of viewing your situation regarding the possibility of your cancer returning.

I very much admire your outlook on life in general, especially with how you are dealing with extremely complex and challenging health issues.

I know that everyone on this thread supports you on this journey. We are hoping for the best outcome and praying for you. We certainly wish you the very best in life.

I am so happy that you have a wonderful family who love and support you as well.

It’s terribly sad that some people have no one to support them during during their time of need.

I am glad that there are support groups for people to find comfort from those who are in the same boat or have family members that have been through this before.
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Sp, there aren't many people who "beat" stage 4 cancer that's spread all over the body. Especially not melanoma which is a VERY aggressive cancer that keeps coming back, over and over again, in New locations. I will have a PET scan every 3 months until more cancer appears. Then I'll be faced with trying a clinical trial or doing nothing, since I'm no longer a candidate for immunotherapy.

THe truth is, even those who have clean PET scans are recommended to continue with immunotherapy for between 1 to 3 years! That's how aggressive melanoma is. Even the people who have had serious side effects ( not as serious as mine) are urged to go on with treatments! It's mind boggling. What I read on my stage 4 melanoma FB group page is unbelievable, to say the least. People who are half dead from side effects are BEGGING for more immunotherapy. I don't bet it. The infusions are ruining their lives and killing them, which they prefer over the thought of dying from cancer.

Thank you. I wish I could enjoy this calm time where I'm cancer free BEFORE the PET scan says otherwise. Remission can last a year or more.....thats a possibility, so I'm praying this sh*t leaves me so I CAN enjoy my life.
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You don't read many if any stories about people who beat cancer like you did Lea only to have horrible and debilitating side effects from the treatment. It's all sunshine, rainbows and skittle pooping unicorns online it seems for many people.

But there is a dark side to cancer treatments as you have posted on here. I wish that you could just enjoy having survived your cancer without all this other crap.

Maybe doctors should do PET scans after each immunotherapy treatment to see where they are at with the cancer instead of just randomly having a four dose treatment since the side effects can be permanent and debilitating. But in the cancer world as long as they can say you have a clean scan you are a success story. What a crock.
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Bm
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Lea,

I am certainly hoping that future IVIG will help you.

I bet you feel like a pin cushion by now with all of the lab work that you’ve endured!

Hugs, love and prayers sent your way today and always!
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Send, as already discussed, rehab is not an option for me. This condition has no cure or way to fix it. It will either pass on its own or it won't. I'm exhausted tbh. I'm not giving up......I just wouldn't mind if I didn't wake up one morning. That's my reality, period.

Ccxmoody, I have lots of times to smile in a day. It just doesn't fix all that's broken or relieve the pain I've been dealing with for a long time now. W/o the prednisone, the hip pain alone is terrible. I guess the meds were camouflaging it. My whole body hurts these days.

Oldage, ty for your kind words. The closest I can get to surrounding myself w nature is sitting on my front stoop or looking out my back window. But I can meditate!

Going for a blood draw later for my outing of the month in prep for my IVIG tomorrow. None of the others have helped, let's hope this one does.
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