I live in New Jersey, too. If the weather permits, and I'm not too zonked out from chemo, I will try and make it. I've never been to a bingo event before. Please update us on the details as soon as you have them hammered down.
Re: Organizing a Fundraiser in Memory of My Grandmother (6 replies, posted in Events & Fundraising)
It's been a very long time since I posted here. I'll be honest, after the initial comfort this site gave me, I couldn't get past the posts of those that had passed away. So I kept my distance. I always seemed to gravitate towards that link, probably indulging in my own self-pity.
But here is an update.
-I'm still stage 4...YAY! (Can I ever go down?)
-I made it to my 28th birthday.
-I had an emergency hip replacement on 9/10 because one of the tumors had eaten away most of my hip and when it shrank, so did the support for my hip. It was either...replace it now...or blow it out and we can reconstruct it later. I opted for the replacement. I'm doing well. I finally ditched the walker last week in favor of one crutch. It suits me just fine and is less cumbersome than that stupid walker.
-I've been taken off of Gem/Cis and put on Oxaliplatin/5FU with horrible new side effects. Cold aversion. Neuropathy in my fingers and mouth. Tunnel vision. Increased painful Neulasta related side effect (I actually just posted a question about it - it causes me to have a fybromyalgia flare up for a few days)
-A new tumor had been found on my back. Its being radiated, and really...for the first time I can say that radiation has helped with the pain.
-My mother-in-law has finally pulled her head out of her a** and realized that I'm dying after making some really inappropriate comments at dinner a few nights ago. In her penance, she has donated her winter bonus to my husband and I for a once in a lifetime trip. We chose a 21 day cruise on the Mediterranean in December. It truly will be my one and only chance to travel with my husband since we always plan for it but can never afford it. Planning this trip has given me new purpose and a desire to stick around for a bit longer.
-Speaking of my husband, he was fired from his job because I cost too much on their health insurance. We hired a lawyer and got a relatively small settlement that includes them paying for COBRA, which is the most important thing. It was kind of a blessing in disguise because now I get to spend so much quality time with him. He's not stressed about work. He drives me to my teaching jobs. Its been really great. We also renewed our vows in August. 5 years we've been married. We wanted to celebrate with our friends and family in case...well...you know.
Ok that's enough. Sorry to take up your time.
My grandmother and mother both have varying degrees of fybro. I've never had a problem with it until I started Neulasta. The very first time I got it was when I started Gem/Cis in May for the very first round of chemo ever. I had bone aches, but nothing to write home about. However, after a few more shots, I developed a searing sensation in my skin when it was touched. It ran from the bottom of the hairline on my head down to my hips.
I have recently been switched to the Oxaliplatin/5FU regimen. I had my second Neulasta shot on Thursday after the switch and last night I couldn't sleep because my skin hurt so bad to lay on it. I've never had it this bad. Just having my skin rub against my shirt is unnerving. I can't be touched or get dressed without crying out in pain. Has anyone ever had the same side effect? Trust me, I would rather go back to the simple bone aches any day over this strange fybro flare up. If it gets worse, I don't know what I'll do.
For pain management, I take a 50mg Fentynol patch, an Aleve in the morning and night for inflammation, and 10mg oxycontin in the morning and at night. None of this is helping.
I just started the same regimen. I was on Gemzar/Cisplat for 5 rounds and did very well. But my Onc said that it doesn't work forever and he switched me to the 5-fu pump. I had my second round on Tuesday (removed on Thursday) and am really starting to see the side effects. I did so well on Gem/Cis...no hair loss...no vomiting...little fatigue...but this is different. Just in time for winter here in NJ, I get the aversion to cold side effect. The wind on my face makes my lips twitch and lock up. Same thing with my fingers. They just don't want to move the way I need them too and its a little scary. I can't swallow anything cold for a few days after too. Feels like glass. I'm also getting tunnel vision. My ophthalmologist isn't concerned. She says its just a loss of blood flow and that if it continues to clear itself up within a few seconds, than everything is fine.
I hope this works for both you and me. I was so satisfied with Gem/Cis that it broke my heart to switch. The stupid fanny pack forced me to tell my college students that I had cancer. Granted, the class discussions were worth the effort, but I wish I could have hidden it a bit longer. The biggest issue for me is when I go to teach and my mouth doesn't work and I need to drink something hot, ASAP. Keep your scarf and gloves near and good luck.
Thank you all for your warm welcome and great advice. I love that this is the club no-one wants to belong to! I'll be looking forward to speaking with you guys as I progress through my treatment.
My name is Erica and I was diagnosed with Stage IV Bile Duct Cancer on May 10th of this year. I am 27. Would have never known if it hadn't metastasized to my hip and caused me great hip pain, that the doctor's couldn't figure out what was wrong with me. Why would they ever suspect a young healthy woman of having Stage IV cancer. I have tumors on my left hip, sternum, lung, 5-6 vertebrae, liver, bile duct (duh), and lymph nodes. I expect my PET scan looked like a Christmas Tree.
I've been through 10 rounds of radiation to my hip and sternum, targeting tumors that were causing me immediate pain. My skin has been burned but it seems to finally be healing like a sunburn.
I've also been through 4 rounds of Chemo so far. Seems I'm on what everyone else is on, Cisplat and Gemzar. My doctor is great and I am responding well to the therapy. Haven't lost my hair. Megestron helps me keep my appetite going strong. The steroids make me a pacing anxious let's-get-this-over-with wreck during all 6 hrs of chemo. My weeks off from chemo are great but because I had to quit my job, I'm stuck at home, bored, being watched by my super helpful husband and dropped-everything-ran-to-her-daughter mother (handlers).
Found this site reluctantly, searching for more information on just what the heck Bile Duct Cancer is. So far it seems just like me: Rare (I'm a special one-of-a-kind kinda person; Invasive; Complicated.
As far as my mortality is concerned, my doctor can't give me a definitive expiration date because I'm so young. My CA 19.9 started at 51,000 and after 3 treatments was down to 4,000. He seemed very happy about it and said it was great news. If anyone can really explain why this is great news to me, I would be grateful. Seems like a bunch of numbers to me. My tumors are still there. All over my body. I'm more like, "Let me know when my tumors have disappeared and then I'll celebrate." Call me pessimistic. I feel more realistic.
My life had just begun. I'm a teacher and professor and I love what I do. Had a relatively late in life career change and just finished getting my Bachelor's and Master's in 4 years while working. I'm a go-getter. I want my Ph.D. This is ruining all of my plans and I hate it. I need plans. I can't just say, well I'll keep working because I've accomplished most of what I wanted in my life and everything will be great until I die. I'm more the kind of person that would say, "Oh, I have 6 years to live? I can get my Ph.D. in 5, 4 if I kill myself, so yes, let's go for it."
Alright. That's all I've got. ^_^
I wish the best for everyone out there. If anyone knows of any support groups in South Jersey/Philadelphia for Stage IV people, let me know please. Or a Spousal Support Group for my husband at least. He needs it more than I do.
Have a great week!