First, the good news: Chuck is doing very well with his liver transplant. April 29 will mark the one year anniversary of his transplant at the Mayo Clinic. He's showing no signs of rejection, is off 80% of his medications, and his follow up tests and visits show him to be a super star. He's back to photographing birds every morning with my son, even in minus 5 degree weather, so that pretty much says it all. My avatar pics are of his birds.
Now for the bad news: I've mentioned before having a surface melanoma on my arm removed in October of 2021. An "in situ" mole of no consequence where all the melanoma 'was removed successfully'. This was a result of having a dozen beauty marks on both arms blow up like balloons after the 2nd Covid shot, grow scabs on them, and when the scab fell off, the beauty mark disappeared entirely. Except for the one. And all of it was not successfully removed after all, as a few cells must've escaped into my body and caused metastatic stage 4 cancer in my lymph nodes, liver, and bones. I went to the ER 3 weeks ago for excruciating pain in my left side where a CT scan with contrast was ordered. The cancer was discovered at that time, and I've spent the last 2 weeks in testing. The cancer is not in my brain, thank God.
The Oncologist told me there is immunotherapy available now for malignant melanoma. 2 types at once, administered via IV (no port) every 3 weeks x4. That's the goal. To turn on my immune system to kill off this cancer. 50% of immunotherapy patients are alive 2 years later. Idk what the percentage is at the 5 year mark. I've avoided doing research bc I'm overwhelmed enough already.
I'm having tremendous pain in my spine, ribs and liver, where the cancer is the worst. The Oncologist gave me some heavy duty pain meds and told me to wait it out until the IV starts kicking in to relieve my pain. He said I would live less than 2 months without treatment so my first treatment is tomorrow morning. The side effects can be gnarly and these infusions WILL kick my butt, he said. I'm ready, I think. Ain't no beauty mark gonna take ME down at 65! 😑
I'm useless at home, so Chuck is doing everything. Laundry, cooking, grocery shopping, driving to appointments. I have a housekeeper coming in to do the heavy cleaning and my stepson and his wife are cooking 7 dinners for us and bringing them by on Saturday. I have to make sure HE'S not overworked during this treatment process to where he gets sick. He's already overcome with worry and shock over all this as it is. I'll ask my stepson to repeat that meal making plan, too...they want to help & we need help.
We've had a lot to deal with the past year, and now my issues, which were there all along, just not apparent until recently. We wouldn't have been able to handle TWO of us sick at once anyway, so this is how it had to play out, I suppose.
The one bright spot I hold onto here is the dime I found on the floor of the ER room I'd been in ALL DAY where there was no dime on the floor. And when the gal was wheeling me back into the room from the CT scan, there it was. I kicked it across the floor to Chuck and he said, "what's that?" I said, "it's a dime from dad, telling me everything will be alright." He was speechless. Dad used to send me dimes all the time after he died in 2015, but stopped the past few years. I have a whole piggy bank full of them.
We can use all the prayers we can get right now, friends. I believe in prayers, in miracles and in signs from our deceased loved ones that they are with us in tough times. If you do too, please send up some prayers for Chuck and I right now.
Many thanks.
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.
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.
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. 😘
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
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.
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.
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.
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.
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.
I along with others on here are believing that they will, and we're thanking the Good Lord in advance for that.
Sending you happy thoughts for your IVG treatment today.
Thoughts and prayers, many hugs coming your way tonight and tomorrow.
🧸️
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!
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.
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.
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.
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!
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.