mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[skypup]

Gwen, just wanted to check in and tell you how sorry I am you are having to deal with the pain and the nausea. I hope you do get meds that work for you!

[Guinevere]

Thanks, Skypup! This constant pain is wearing. I had forgotten that. In fact a lot of what's going physically is taking me back to what I've termed as the summer of hell - 2011. At the beginnings of summer, I was having 5 doses of radiation a week and daily doses of Xeloda. Then, I had the lovely "carryover cooking" time (as I called it because it was easier to explain to family & friends about why I was having to wait for surgery.) Then my 5 hour surgery turned into 7 1/2 hours - APR, rectumectomy (or more properly a proctocolectomy), colostomy placement, vaginal cuff repair, lighted stents placed in my ureters so they didn't accidentally get cut and what amounted to an omenectomy (the surgeon took my omomentum and moved it down in the pelvic cavity so all my organs wouldn't drop down) and the recovery from that. All that is to say that I'm dreading things getting worse now. I never want to go through anything that painful again!

Of course I know that there's a lot I'm not going to be able to do anything about. Nature of the beast, it seems. Butt, thanks to this board and Colontown on FB, I'm a lot better informed about what can help mitigate some of the pain and I'll be forever grateful that I was sent here by a fellow ostomate on the ostomy board.

Man! I was rereading what I wrote above and found myself thanking God again that I've come through so much and that, all things considered, I've still had a fairly good life!

Truly God bless all y'all ~
Gwen

[Sharona]

Christine,
I am so sorry to hear your news. It looks like you are in good hands and am praying that all goes well.

Gwen,
I sure hope the meds can resolve the issues and that you get to feeling better soon! Yuck days are no fun! Know that you are in my thoughts and prayers. Princess Audrey needs some Time with Queen Gwen!

Hugs to all,
Sharon

[jacekica]

Christine, I am so sorry to hear the News, yes cancer is the beast, sneaky and painful and so quick to spred - I had such spread. But with USA medicine and dr K you will be fine.
Gwen, it is horrible to read about pain and I can just empathy with you and pray regularly as I do...hope God will ease the pain and regular constiaption/diarrhea

I am at stronger fentanyl and there is no pain but I have nausea, vertigo and tremor...

[Frenchie's Wife]

Gwen

Emend worked wonders for me. I NEVER had nausea while on it. It cost 100 dollars for the three pill combo here in Alberta Canada.(no cost to us). You poor sweetheart, I wish that somehow I could shoulder your pain. I admire your fortitude during your difficult journey.

[skypup]

With Kathryn, Ashlee and Jeanette gone, I'm not sure how this thread will evolve, but figure we "owe" it to them to give it a chance.

Good news for me: after a month on erbitux, my CEA went from 127 (all-time high for me) to 23. In another month I'll have scans, and that will tell the real story. But it looks like it is stabilizing me, and I am grateful. Awfully sick lately, but grateful.

Off this afternoon to see my younger brother who is poisoning his life with alcohol. How I wish I could transfer some of the understanding of how precious life is to him! Yet we all have our journeys.

Gwen, I hope today is a good day, a real princess of a day!

[raym]

Off this afternoon to see my younger brother who is poisoning his life with alcohol. How I wish I could transfer some of the understanding of how precious life is to him! Yet we all have our journeys.

Just remember that it is a disease (or something underlying that the alcohol is numbing) and some people don't have the willpower to stop. I can't understand it either but after watching my niece (who passed at age 32 in 2012 of alcohol poisoning) I know it's not any easy thing. She went through numerous rehab stints but still could not stop drinking. It still tears me up. In 2012 I was going a bad time with having been diagnosed with a re-occurrence (eventually Hipec 2 months later) and a few days before she was found dead, she IM'd me on Facebook. She asked me to give her a call but it was very late at night and I was really wiped out and said I would get back to her. Never had the chance

I feel bad for my sister. She has lost our dad in 1997, her Husband in 2000 when he was 50 (heart attack), her daughter when she was 32 and perhaps me due to this disease.

[jacekica]

DearGwen, i hope you are better. Skypup, my dear friend, i wish we can transfer our experiences and wisdom, but as you say we all have our own journrys to travel. And i wish you have good scans.
I have no nausea and just a little pain, but i am so weak, I slept all day and still am tired, I don t know if i will be able for Mass tomorrow or work on tuesday. And I must work because I have credits, sick leva more than a week are not for me.

[pollo65]

Hi everyone,
I have missed you. Lost my password and can't seem to get over our recent losses. I believe that Ashley,Dick and myself shared the same anniversary and now I am the only one left... It is getting lonely here in the 5+year group. At times I am consumed with guilt and at other times just plain scared. I guess it comes with the territory.
Pity party over.
Pollo 65

[skypup]

Ray, Jasminka, pollo, you beautiful people!
Ray, what you say about covering something underneath the alcohol abuse is true. I am sorry to read of your niece. Just like our disease, it hits harder when we lose such a young person. Fortunately today was a really good visit with my baby brother. Hope it helps him, too.
Jasminka, I wish you some strength. How I wish you didn't have to be so strong! Retire and come live with me in Texas! It's hot and crazy weird here, but kind of easy and entertaining.
Pollo65, I know what you mean about our disappearing numbers. I was thinking of the people who welcomed me and gave me such good advice when I joined, and way too many have gone. Please keep posting as you can, though...
Gwen, hoping you had a good (enough) day!
Love me some Bev...

[Bev G]

Skypuppy, and the rest of you awesome crowd, love you all so much. My family, my friends, my soul mates.

Now...go to sleep and sleep well (warm milk first---optional) Go on, go get some rest now. Dream of lovely, peaceful and beautiful things.

[jacekica]

Gwen, how I hope you are better, and as you don't post I think it is just a wish and you suffer so much - my prayers are with you.

My dear Skypup, how can someone so nice with golden heart can have such terrible illness, I wish all of you are aware how beautiful is in USA, you don't have an idea how difficult is in most of the world, you have difficulties, recesion and many hard things to battle, but still your governemt is more than any one of us can imagine and we Know we will not have it for at least three generations time. If it is possible, believe me I will be with you and your dog in a blink of an eye.

It is very hard here with so many loses, with time we are really like a family and it is so painful and sad, scarry also when our pillars go away..........

[Frenchie's Wife]

My 5 year cancerversery is coming up next month. I have been stage 4 for 5 years. According to google, I had a 5 % chance of surviving 5 years when I was DX. As most of you know, I am a gambler. My all time lucky numbers are 555. My car's personalized plates read: LKY 555!! See a pattern here guys ? The oncologist from this centre told me last year that most people do not survive lung mets for longer than 5 years. (Are there any in our group who survived this long or longer?) I feel a challenge coming on!! What if I got our local cancer centre involved with my challenge ? If they would promote colon cancer more during the time that I was in treatment for lung mets, I would give them a financial donation on each anniversary of my original Lung met DX.until the new 5 year mark. They are in the middle of an expansion project and could use all the support they can get. My brothers and children are well off financially and would support this as well. The biggest hurdle for me would be getting back into treatment. I have had such an awesome summer that I would not mind another. I have an apt. With the onc on Sept 10 for my nasal passage tumor. Probably make some decisions then. Need to know if it is operable first. Sorry for the long post, can' t sleep these days. Too much on my mind. I wonder if this could be the catalyst that would make me resume my chemo treatments? The chances of achieving this new milestone are very slim,but so was becoming a member of the 5% club
Happy Trails
Frenchie

[skypup]

Frenchie, I hope they do give you viable options for the nasal tumors, and if that means chemo, so be it. But I sense a fighter in you as well as a gambler, and that fighter seems to be digging in and getting ready! I took time off to have a beautiful summer, too, and actually ended up stretching it out to eighteen months with the help of an immunotherapy clinical trial. When it was time to do chemo or start dying, chemo it was and I have regretted neither the time I took off nor the return to active treatment. It's an interesting journey to take a detour or two... Can't wait to hear what your choices are and which you choose!

[jacekica]

Frenchie, I hope docs will be able to treat your nasal tumor and you QOL will be greatly better.