mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[CanadianGirl]

Hi Everyone.

I forgot that this thread was here when I posted in the general forum. It was great to hear from people but I thought I'd repost on this thread as I assume that the people who follow this one are more apt to be in my position and may or may not follow the general board postings. I know some people saw my last post and responded and it was really great to hear from you. I guess my "do nothing" days are going to come to a halt for abit. I can't complain, I have had a great run for a couple of years now and have had a great quality of life except for the 3 month check ups that are a constant reminder that I am never going to be done dealing with this. Last week I had my regular CT and it showed that the tumour on my vena cava has grown significantly since the last scan (2.5 to 3cm). It isn't huge and my CEA still hasn't started to rise but past experience had shown me that these suckers can grow in a hurry. I am now awaiting a PET scan, hopefully some time this week and have been referred back to a radiologist on Monday. Our last plan of action was to radiate if the tumours grew significantly or try chemo again if there were more significant growths, so I suspect the plan of action will be to radiate. I was wondering if anyone else here with a similar path to me has had radiation? I always have a million questions by the time of my appointment, but right now I'm not even sure where to start asking. Any info or advice is greatly appreciated!

Thanks
Lynn

[Guinevere]

I don't have experience with the kind of tumor you're dealing with but wanted to commiserate that you're back on the merry-go-'round. Sucks on a stick! Don't be a stranger here. You can whine all you want and get support without all the "it's gonna be alright" stuff.

God Bless ~
Gwen

[Kathryn in MN]

I've been MIA for a week - out of town for my son's Army AIT graduation followed by 6 nights with my sister's family and some time with an old high school friend. I'm glad I was able to spend time with them.

Overall I have not been feeling too well. I have nausea a lot, and I am not on any treatment right now. I expected that to go away, but it doesn't. I've never had it stay more than a couple weeks after stopping treatment. My BP had settled down after stopping Zaltrap, so I quit my BP meds and stopped checking BP twice per day. Before I left for my trip, I almost didn't go. I felt so horrible. I told my husband that I thought this was the end coming - that I am on my downhill slide and don't know how long I will live. Then I decided no matter what, I had to go see my son graduate, as it might be the last big event in his life that I am alive for.

Before heading to the airport, my head and chest hurt so badly, my tinitus got really awful, my heart was racing, and I felt like vomiting. I decided to check my BP. Sky high! After taking BP meds again, I did feel quite a bit better (although not good). It made enough difference for me to get through things without worrying I am dying. Whew! I am having trouble controlling BP - one day it is ok, and the next it won't stay controlled, even with my max allowed BP meds and diuretics. Somehow either the Zaltrap really messed me up permanently, or I have tumors pressing on something that is causing BP issues.

My core feels like it wants to explode - I feel like I have quadruplets growing in me or something. It is really weird. The pressure is extreme, pushing out on my ribs, and out on my abdomen. I'm guessing it is the double pleural effusion mixed with the ascites. It seems that I only got about 5 good days after having my lung drained. I've finally started to have a little appetite, and once I start eating it is great, but if I eat much at all, I do not feel well. No matter what I eat or drink, I get severe gas (mostly trapped and burping, but also passing out the other end). Sometimes I think I need to have a bowel movement, and then it is all just gas - lots of it. Does this happen to anyone else? It seems to be ongoing since I had the CT colonography. I can't lie flat or I can't breath and the pain is severe. I have a very hard time finding a comfortable position. So trying to sleep at my sister's was tough. I REALLY missed my adjustable bed while I was gone for the week. I got home last night and actually slept for more than 15-20 minutes at a time!

I wonder if others had these weird issues as disease progressed? I hate to be such a whiner, but I am mostly miserable. I push myself for the sake of friends and family, but my pain levels are a bit high and I am completely uncomfortable all the time, and have no energy. I can't walk far or stand long - I can't get enough air, my heart rate climbs, and I come close to passing out. Even with cancer and chemo fatigue, I've always managed to be pretty active when I am off treatment. Not this time. I am really frustrated. Anyone else extremely fatigued even off treatment?

Usually I am "out there" with my feelings and facts, but find that I am not telling most family and friends how bad I feel now. I just try to smile and push on when I am around people, and collapse when I am not. They all expect me to be doing well since I am off treatment, and so do I. There is nothing anyone can do for me, so I wonder if there is any point in letting them know how miserable I am? I do think I am getting much closer to the end...

I read through postings, but I was so far behind that I am not remembering them all right now. Yeah for the person turning 50! A big milestone for those of us with cancer - especially if we weren't expected to make it that far. I had two primary cancers prior to 50 and was not expected to live past 48 or 49, so 50 was a big one! And I'm now 51! My friends all piss & moan about turning "old" and 50 and I want to slap them up. CELEBRATE!!!! Old is better than the alternative (especially for those in relatively good health)!

I hope you are all able to spend some time with family and/or friends through the holidays, and have enough quality of life to be thankful and appreciative for Thanksgiving and beyond.

[Burrito]

Kathryn,
I'm right there with you. I mostly feel miserable, too. Not too much energy for anything, have chornic digestive upset, gas, bloating, diarrhea, fatigue, get out of breath easily. I find that curtailing my activity and taking regular pain meds the only thing that seems to really help at all. It sucks, but there it is.

[jeanette57]

oh - how I wish I knew how the end feels. I was feeling terrible, then out of the blue got to feeling great, - I posted the experience on how hair growth and feeling good was bad - means I need more chemo. had a great 3 weeks with chemo and feeling great -

I wonder if they can use a sonogram and pull some of that water off of you???? You need to talk to doctor and palliative (spelling) care. YOU should never be in pain... they can give you things to not drug you sleepy, but to ease some of the discomfort. My love and prayers are with you.

I agree DON'T TELL THEM --- IMO because they stress, hover, lay their fears on you--- Lay this here on us, we understand, we love and cry ,-beg you to get some relief. At 51 - you got a chance to live, have children, married, friends and family - good memories - but darn to young. My heart goes out to anyone suffering-

For me I just wish I knew when or how death feels. The hospice place would not allow me to observe - so I am left wondering- I hear good stories and then terrible stories. Day by day, I am alive and grateful.

[skypup]

Kathryn, my heart hurts for you. When I joined CC you were one of the strongest voices, knowledgable and experienced. You have been one of my mentors. If it is Death tapping you on the shoulder, I and many others here want to be strong and caring for you. Although you'll still be my mentor in this path.

There is a Native American ceremony that involves stepping on Decision Road when they knew they were going to die. At that point the negotiating, the prevaricating were done, it was acceptance. I thought I knew what this felt like from some work I had done with an incredible group of nature guides, but until I actually stepped on the Road for real a few weeks ago (pushed ahead by pain and acceptance of a cancer death that is inevitable), I had no idea of the strength and courage it takes to truly accept Death. When death then comes very near, they build a Death Lodge, a place where people come for the first few days to say what needs to be said. Then the person is left alone to die. I offer this as a reminder to myself of a ritual that seems worthwhile for my death process, and as an offer to you, Kathryn, in case you might feel something worthwhile in it.

My best to you, strong one!

[Becmac]

Hello I was diagnosed last January 2013 with stage 4 colon cancer. I have been in treatment for most of this time with a few weeks off in the summer. I just found the Colon Club and up until now I haven't really felt like joining in or contributing. I am not sure how this all works and I don't want to do anything that is wrong so I will mostly read your entries and learn.
Becky

[skypup]

Hi Becky, welcome and don't worry about doing anything "wrong" as long as you stay in the areas of information and support. Please join in, it's wonderful to have another voice supporting each other.

[scattered edge]

welcome Becky. Great group you've discovered..... best ever

Roise

[scattered edge]

A dear friend died a couple days ago. His wife had just got a hospital bed in for him. He began sweating early that morning... Finally home health nurse arrived (at her scheduled time)) and bathed him, changed pjs and sheets... a few minutes later, right after she left, he passed. This is just how I want to go. Easy and peaceful.

Roise

[Becmac]

Thanks very much for your replies. I have a scattering of metastatic tumors in my liver and a small place I'm my lungs. I never had any symptoms except fatigue. I still don't. The chemo has not been easy but didn't expect that it would. I have had a lot of anger but i am trying to deal with that every day. I have taken one infusion shy of a full run of folfox and slightly more than half of the Folfiri regimen. I did really good on the folfox and knocked the tumors way back and then I took a break for about 6 weeks to get ready for radial ablation and possibly surgery. The tumors started growing again so my doc decided to put me on Folfiri but the last CT scan showed that they were growing again. So now I will start Cetuximab Dec. the 2nd. I am also going to do a trial with something called PGG, possibly. I am not sure what it does but i think it enhances the Cetuximab. I know there are lots of side effects with the Cetuximab but I will try anything, as long as I can take it, that might give me time. I am loving everyday that I have even with the steroids which I think make me nervous and sometimes a little bit angrier but I am working on it. I also have a problem with people telling me about others who have miraculously survived colon cancer but they dont know anything about stages i dont think. I want this whole thing to be as stressless as possible and leave my family with as little scarring as possible. I have a great and supportive family including an 86 year old mother who still thinks I will get well soon. I have talked with her about it but she insists it will happen. The only thing I can tell her is that I don't know how much or how little time I have because no one knows. She doesn't want to hear that. Maybe with the right treatment I can extend my days, maybe not. My doc is a great doctor and I have lots of faith in him and his expertise. I know there are lots of unknowns looming in the distance. I don't feel all that great about any unknowns LOOMING in the distance but I can't do anything about it. Thank goodness for the sleeping pills that give me a good nights sleep. My main goal is to get my house clean and my closets clean before I can't do it any more and to enjoy my family and friends forever, however long forever is for me. I am not afraid but a little apprehensive about future pain so I will try to work on that too. So far so good. My doc say he can keep me from having a lot of pain. i hope that he can.

I also want to learn how to put my specifics on this page. Like my treatments and dates and all that other stuff but I haven't found a way yet.
Becky

[DogMom]

Hi Becky... Welcome! With respect to your question about the information it the bottom of people's posts, it's called a signature. To add one to your profile, when signed in, go to the user control panel. If you see the tabs at the top of the page, go to the one marked Profile. From there you can edit your signature or profile.

I think we all understand about the feelings that go along with this diagnosis. I think we can also relate to being on the receiving end of well meaning but misguided advice. For some true horror stories look for a thread from awhile back entitled something like " rant-things people say" . Wow, when you think you have your own stories to tell, the stories other people can tell on that subject will curl your hair. In that thread are also ideas about responses to some of those well meaning people to shut them up.

Best wishes to you.

Bonnie

[jeanette57]

Hi Becky
My mom ia 89 and she is helping me through this, drives me 2 miles to apts, sits with me all the time. She is responsible for all medications to be warmed up -(they are use to us sticking them on our body).. She supports me but gets tearful when I talk to others about this journey. You can vent here anytime. we know what is happening.

I am on Iretecan (can't spell it) and Erbitux and the worst is the IV of magnesium I have to have weekly. These drugs stripped it out of my system, so my heart doesn't stop. Hum the side effects are ok.

[Kathryn in MN]

Hello I was diagnosed last January 2013 with stage 4 colon cancer. I have been in treatment for most of this time with a few weeks off in the summer. I just found the Colon Club and up until now I haven't really felt like joining in or contributing. I am not sure how this all works and I don't want to do anything that is wrong so I will mostly read your entries and learn.
Becky

Welcome Becky! You can't do or say anything wrong here! (As long as you don't attack someone personally, or use a string of real curse words - those are about the only two rules to follow.) This posting thread has patients living with metastatic disease for a long time and others newly diagnosed. So sorry you have a need to join us, but glad you found us. Feel free to ask questions, share your thoughts, or just vent if you need to.

[Guinevere]

Kathryn,
You're always in my prayers. As far as being truthful with the folks in your life about how you're feeling, I can understand where you're coming from. However, I chose to tell those close to me how very bad I'm feeling so, if things so south quickly, it's not such a shock. This comes after my SisIL was diagnosed in Jan 2000 with colon cancer but she didn't want her 92 year old to know how dire it was. Mom went on thinking that her daughter would be cured and was shocked (as we all were) when she died on 17 Mar 2000. My mother-in-law, of course, was devastated, especially when she found out that we all knew my SisIL was terminal and wouldn't get any better. She also felt it robbed her of precious time with her daughter and I can understand that as well. Family dynamics are tricky though so whatever helps you be able to rest without folks hovering (and getting on your last nerve), that's what's right for you.

My infusion this week was weird. The actual infusion of the Leucovoran and Irinotecan was fine. The clear plastic barrier they put over my port and the tubing for the 46 hour infusion came loose the first night. I rebandaged it the next morning but forgot to stabilize the needle and that hurt after a while. I bandaged it again, putting gauze under the wings to stabilize the needle but the damage was done. I'm very bruised around the port access. It's good that I have almost two weeks before my next infusion. She wanted to have a scan done before my next appointment but I told her that I didn't want to have the scan done on Wednesday before Thanksgiving and then wait until Tuesday for the results. So, it was agreed that I would have the scan after the next infusion. My blood counts were better. Still lowish but not anything to be concerned about and she, too, thought, the fatigue was the cumulative effect of the chemo rather than from "crappy blood". So that's the good news. Yesterday and today have been crud for me. This is the first time, since Wednesday, I thought I felt up to sitting at the computer. Tomorrow's a Dr. Who day with my nephew & brother so I'm hoping I'll feel much better then.

God bless ~
Gwen