mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[Guinevere]

Wow, Jeanette! You've got a pretty brazen neighbor, don't you? Glad all you have is Tylenol at the house.

I, too, know what it's like to just let loved ones be glad for me that I don't look like the walking dead. Sometimes, I say, "You know what Fernando Lamas used to say according to Billy Crystal, "It's better to look good than to feel good." I think this lets them know that, as much as I'm glad to be looking better, that doesn't necessarily translate to feeling better. All that said, I sure am glad you felt up to getting out.

Guys, the stitch pain is back this morning and I'm dumping (2 pouchfuls already but not loose like diarrhea) and dry heaves which is something new. I've taken Ibuprofen and Flexeril and I have a heated lap robe draped over the site to see if that helps. Cancer truly does stink!

The Princess got her "official" 6 month pics taken on Saturday and I'll probably load one here when I can post from my computer instead of my Kindle.

God bless ~
Gwen

[Guinevere]

I posted to the ostomy board's Fickle Nasty Sneaky Disease thread my latest news. I'm copying and pasting here 'cause that's really about all I'm up to at the moment.

Talked on the phone to onc nurse yesterday and she played "go-between" between my onc and me. At any rate, she believes that the pain's caused from my tumors growing, swelling my liver and pressing it into my ribcage. Fun... At the risk of offending someone, Thank GOD I have Him to turn to and leave a lot of this at His door. Otherwise, I think I would be too overwhelmed to function. I have to say that I am disappointed that I probably won't get time without debilitating fatigue and the pain starting. I did go to Paris yesterday and stayed with Son and the Princess while Gary got the groceries and other stuff we needed to get. If you're looking at the time stamp on this post, your eyes aren't playing tricks. I thought it was a little after 5 a.m., got up, made coffee, got the food ready for the cats and thought I would see if I can sit up for a little while I'm checking my emails, etc. So, it seems I'm going to be on the Dilaudid train at least for a while. I'm still trying to do the stretch exercises when I think I can.

Here's the Princess pic I promised.


I'll check back in later. I'm trying to decide if I want to start a new thread so those who aren't stage 4 can also be informed. Advice would be welcomed!

God bless ~
Gwen

[coloradowalt]

What a lovely young lady!

[jeanette57]

Hi my faves

I talked to family about the slap/broken bones (bone cancer) and some of the other things. They will only slap when I don't get the air out. Not hard.

Wow - girl friend took me to movie. It was great- went to see LUCY. It was a very interesting concept of using 100 percent of the brain power. Its message on how everything is interconnected was fantastic. Some SiFi and violent (ok it is a movie) but the concept discussed were deep.

not sure what is going on today - tired is given but the cold - feel like a popsicle. so cold dressing warm winter in az desert.

happy weekend to all of ya! hugs and light

[Elizmed]

Hello, hope everyone is having a good day.
New to this forum, not brand new to cancer.
I was diagnosed with colon/pancreatic cancer stage IV August 22, my 15th wedding anniversary. We had driven to Miami to celebrate & quickly returned directly to ER near my home in Georgia.
Btw, BC (before cancer) I considered myself healthy, non smoker, gym 4-5 times a week, ate well. Months before diagnose were stomach upset, vomiting, but these episodes were far apart. PCP prescribed acid reflux meds. Then a week before our trip, got fever that would not go away.
PCP found protein in urine & blood, but told me to continue on my trip & she would do blood work once I got back.
Once we were at our destination, I felt worse, night sweats & very bad pain under my left rib cage.
Sept 4, 2013 surgeon removed spleen mass, partial pancreas tail, & partial left kidney.
October, oncologist put me on Gemzar & Abraxane while tests were done to determine which cancer was primary. Genetic test came back with 85% colon. Lost all my hair.
November, cocktail changed to Oxilipatin, Avastin, & 5-U pump. Was doing really well, side effects minimum.
February, saw GYN oncologist who recommended total hysterectomy to remove small ovary tumor not responding to chemo. Was taken off chemo 3 weeks before & 3 weeks after March surgery.
Good news, it was benign, no malignant cells found. I'm 57, so my baby making days were over long time ago.
MD put me on maintenance Xeloda & Avastin April thru June, but the numbers started climbing. Pet scan June 23 revealed new lymph nodes from my neck, chest, & liver spot.
Was put back on Oxi, Avastin, & Xeloda put the numbers keep climbing.
CEA is currently 17, CA-19 354. Did awful this time, from bad constipation to diarehea & extreme fatigue.
Starting Tuesday, will start Folfiri. I had CT scan last Wednesday, new mass growing along side what's left of my left kidney & lung nodes.
I'm not ready to give up, hoping this new treatment will keep the cancer at bay. Wish me luck!!

[Sophy]

Wishing you luck, Elizmed, you have had a pretty tough time with cancer and hoping the new treatment will improve things for you.

You have come to a good place here where people are very supporting and knowledgeable.

[Guinevere]

Elizmed, so glad you found us! The fact you're still here and will celebrate your first cancerversary is awesome considering the road you've been on.

Because of the referred pain, I've been on more pain meds and sleeping more. One of the constant things you deal with when on pain meds is constipation. Yesterday, it had been 4 days since my last movement and I was becoming concerned about a blockage forming. I had also noticed that the mucus that's ever present was becoming thicker and stickier and that made me wonder if I was having movements because the mucus had "glued" my stoma shut. Who do I contact? My onc? I know she deals with other patients that have them but does she know enough about them to help me? My surgeon? I know installs and and there's after care but, for something like this, would he know what to do? What about an enema? Wouldn't warm water could very well help loosen up the mucus. I talked to my husband and didn't think my thoughts were nutty or anything and took point on researching stomal enemas. It turns out that we had part of the equipment necessary but needed a nozzle. I told Gary I would call my ostomy supplier on Monday and get the needed items. Went to sleep last night before 10:30 and woke up at 11:00 a.m. Went to the bathroom and Lo! And Behold! Pillage in the pouch! Woohoo! My stoma wasn't sealed shut, praise the Lord, and I've had several movements today. I still think I'll call and get the needed enema supplies just in case.

Thank you guys for all the support and queries on how I'm doing. For where I am in this journey, I think I'm doing alright. My pain meds are working, thank God, and it looks like I've still got a lot to learn about my 3 year old stoma.

Hope everyone's having a good Sunday!

God bless ~
Gwen

[Sharona]

Welcome, Elizamed! You've been through a lot this past year. I hope the new treatment will help keep the beast at bay. Am keeping you in my prayers.

Gwen, I am so sorry to hear of the increased pain and need for meds. I understand your worry about a blockage, a thing to be avoided. Do you have an ostomy care nurse at the hospital? We are so fortunate to have a wonderful one here. If she cannot answer a stoma question, she can refer to one who will. Glad to hear things are flowing again!

Hope you feel better soon.
Sharon

[skypup]

Gwen, I'm sorry you are having such trouble with referred pain. Boy, I know what it's like; I had over a year of it, varying in intensity. Weird, though, I have gotten a break from it for the last month or so--no pain meds! I hope you get such a break. The pain wore me down worse than chemo...

Jeanette, hope you are breathing with some ease!

[Badass]

Gwen, your granddaughter is absolutely adorable!!! Glad you triumphed over your rough weekend and stoma fears.

Jane

[jeanette57]

Gwen - what is "referred" pain? not sure what it is!

my brain could be low - still having air issues. Bought the Oxygen reader machine. I got it up from 64 to 84 just now. I am doing deep breathing to get it to the 80's. mostly in the 60's - feel faint and headaches from hell. still good reason to stay in the day bed. Yesterday got company for the night and today still have them. Great- I hope they stay a week. Only problem is their dog and mine don't like each other. Mine is looking so sad.

well hope the weekend was good to everyone. I was lazy - watching all the re-runs of Roswell. Some Aliens are cute!

[Asterix]

Hi everyone, thought I'd drop by an update you guys. I haven't posted for a while, but do read most days. I've been on Mekinist now for almost a month. Felt rotten after the first 5 days so my onc said to try 3 days on 1 day off dosage. Seems to be ok, although I go from feeling crap to great, sometimes many times in a day. My back and abdominal pain seems to be gradually improving, hopefully from the Mekinist working. I'm still on oxycodone and have been playing around with Lyrica to help with my pain. My pain is worse when lying down so sleeping is hard. Luckily my brother-in-law is a pain specialist doc so I've been working with him. He also has me on low dose Endep that can help with pain and help to sleep. I was getting really tired so cut out the Lyrica and that seemed to help. With the pain stopping me sleeping I've tried Lyrica at bedtime for the last few nights and I seem to sleep better, but still getting very tired during the day. If I get started doing physical things, I seem to be ok, but if I don't I just want to sleep. Wife and I went out and bought a new recliner lounge suite to replace our sofa as this should be more comfortable for watching TV and also a place I can sleep upright, which is where the pain goes away. I'm meant to be going skiing with my brothers in 3 weeks, we've never skied together before so this may be our last chance. Hope I am up to it. I did manage to get away for a 6 night astronomy meeting. It was a bit confronting as I was away from my family and sleeping in my camper trailer, in near freezing conditions. I'm glad I did it though, even if it did wear me out a bit.

Well, sorry for rambling, but just wanted to touch base with everyone. I see my onc next week and will get my CEA results after 1 month of the Mekinist to see if it's helping. I hope it is

[jeanette57]

great news on Mekinist. an other chemo for me! Just not sure when or where. Sking - just go and drink hot chocolate and enjoy- take a few pictures and talk about times past. Hugs

[skypup]

Hi Asterix, thanks for your update. I'd never heard of Mekinist, had to go look it up. Sounds kinda rough, but will hopefully be effective. I'm right there with you about lying down exacerbating the pain. Makes sleeping difficult, even resting, to say the least. Hope you catch a break. WOW for you on going skiing! I can't even imagine trying that!! I could imagine sitting in the warming hut drinking hot spiced wine... Hope you get to go and enjoy your friends!

[Sophy]

Hi Folks. Arrived in London yesterday for my third thoracotomy this year.

On June scan the UK surgeon saw a 5x3mm nodule next to my aorta in left lung. Looking back at old scans he could trace it to 2mm in October but none of the other people who read the images had noticed it. German surgeon didn't notice it during the operation he did on my left lung in January so it has been sitting there quietly growing.

I go into hospital today with op on Thursday. In the meantime I am eating crackers, cheese and fruit salad in my hotel bed suffering from the middle of the night munchies as it is midday at home. Hope the cracker crumbs don't keep me awake all night.

I am trying not to be bitter resenting that I am having to spend so much money (foreigners have to pay cash for surgery here and my NZ insurance doesn't cover it) and endure so much pain whilst away from my family for weeks and all because a dozen medical professionals can't read a CT scan carefully. The nodule could have been removed in seconds during the January op.

However, that will make me waste energy on futile anger so instead I am trying to concentrate on the positive that it was picked up whilst still operable and that I can manage to have the operation.

I had thought getting prepared mentally for surgery would get easier with practice but I am finding that ignorance was bliss - I don't like knowing what will be happening in advance and having to go through with it even though I know it will be so unpleasant.

My 10 year old daughter was really upset when I told the kids I had to be away for a few weeks. She was crying saying 'Mummy, why does this have to happen to you? Why can't it happen to someone else? You have already done so much.' And of course all I can say is that I don't know and it is just chance but that the doctors are doing all they can to make me well again so that I can be with the family for a long time more.

Anyway, love to you all and thinking of you. I know that I am very very lucky to have this opportunity for surgery. Praying for pain-free comfortable days for all of us.