Hi Donna,
Just went and read your post (because once again, I am up at 4 am even with time change lol) and went to see the pics you mentioned. The Fulfox is probably what made you so sick, I was on that or Fulfuri (I don’t remember which) and that stuff was literally killing me, so I stopped that treatment coatse after 2 tries after even cutting the dosage in half had the same result. the Erbitux- you and I have had the same reaction with the painful rash and then cellulitis ( those cysts which are infected hair follicles) it is very VERY painful, but thankfully my oncology office is very good about listening to me as far as my pain control goes. I am feeling pretty good now reading your posts to see that you have gone far beyond that 6 mths time limit given you, it gives me hope that maybe I will make it to see my youngest daughter (who turns 10 next week) make it at least to high school if not through it. One can only hope. Anyway, thanks for your kind posts, and hope you’re getting some sleep, I am gonna try to get some more myself in a minute.
(((hugs)))
Gwen

Posted on March 14, 2010 at 12:31:38 AM PST by gwen

Keep up the fight! We are all praying for you.

Posted on March 8, 2010 at 6:17:13 AM PST by volkmann

We are definately in this journey together…thank you for sharing with us for in your journey may we glean wisdom to survival methods we may not have known. You know that we are here for you so share and know strength and love from all of us!
Larissa

Posted on March 7, 2010 at 6:41:56 PM PST by larissa

keep goin donna! i appreciate your support also, i have stage 4 that started as just in the colon but broke thru to liver and lungs, as you probably know from my story. just wanted you to know you have another supporter, and friend to help you through this with prayer and faith. We can beat this, despite the odds! take care, annette

You are a real fighter. Keep up the good work and thanks for being my friends….God Bless … Ed

Posted on March 7, 2010 at 7:00:42 AM PST by edh

~~~~~Cheryl, Sorry for the long post.
Wow, I never realized how close our diagnosis and treatments were. Mine has now metastasized to the bones. I really haven’t had much pain until it got to the bones. Now it is pretty much constant.
I use the same pain meds. Is the 20 mg Oxycotton (sp?) instead of oxycodone? I was on the same chemo drugs. Where is your pain? Is it from the chemo drugs or the cancer itself?
Have you checked into Disability? and Hospice.
I have Hospice and it has been a life saver. Excuse the pun. No more doctor visits, scans, chemo that was actually killing me faster than the cancer. They deliver your meds and keep checking on you every 2 weeks and it is all free. Paid for by donations. They make sure you stay out of pain, they will try several until they see what works for you.
Disability can be applied for online. Once I got to the question-Is your considered terminal? I entered yes and got a phone # to call to speed up everything. 1 short visit and I had a check direct deposited in 3 weeks. Very helpful since my boss couldn’t stand seeing me in pain and so tired all the time and let me go “for my own good” I resented it but he was right I really shouldn’t have been working in that condition.
I quit chemo and have been traveling ever since. I have lived more in the last 2 years since quitting chemo than I ever had my entire life.
Also, there is a drug that is a miracle pill for fatigue. I literally go from laying in bed most of the time feeling horrible. I take 1 pill and 2 hours later I have 12 hours that I do not feel like I have cancer at all. I go and go and go. It is not cheap but I just take it when I am on trips or have a lot to do and spread it out. It is Provigal. It cost about $400.00 for a 30 days supply that I have stretched out for 5 months. I can’t get it through Hospice but my regular family physician wrote me a script after I brought in a bunch of research I did on the internet. I am telling you, it is a total miracle drug. It has totally changed how much I can do and helped a lot with all my travels.
Insurance will only cover it for sleep-apnea, night shift workers and another sleep disorder. 90% of the prescriptions for it is “off label use” for chemo patients, cancer patients and MS patients.
Sorry so long, but I hope some of this helps you.
Donna~~~~~

~~~~reply~~~~
Hello sweet lady, first of all let me say you are my hero! YOU give me hope. Can you even believe that your still here?? I can’t believe that I am and I’m not near as far along as you. I remember back when I was about to start on Erbitux and reading your experiences and looking at your pictures over and over. Thanks by the way for posting those. Pictures speak a thousand words.
Along with you I have lived more since my treatments were finished than I’ve probably lived in years actually. You’ve had some wonderful trips and adventures. Mine not so far reaching as yours but certainly living outside of the box for me. To bad we didn’t always take life by the horns so to speak but everything works out the way it’s suppose to I think.
If you get a chance you’ll see that my experience has been much like yours. I’ve been on hospice since July and it’s been a wonderful experience. I’ve nothing bad to say about it at all. I asked one of my hospice nurses whom I adore how long she thinks I have….this was about a month ago and she’s been a hospice nurse for 32 years! and said 2 months maybe 3. I appreciated her direct answer as I never could get that from my doctor. However with that said you and I both know there is no way to know for sure and something much bigger than us is at work here.
How are you feeling now? My sister in law has breast cancer that mets to her bones. She was diagnosed in Mar. 06. an on all the heavy hitters for pain. She moved from her home in Los Angeles back to Kansas to live with her mom and dad. The girl has been through it. Is your pain still being managed? If you’ve already blog about this forgive me for missing it.
I’m sending you big hugs and loving support and thinking of you often.
Love, Cheryl~~~~

Posted on August 26, 2009 at 3:32:33 AM PDT by cherylofoz2008

Dear Donna, I am sad to hear you are nearing the end of this part of your journey. I thank you for your comforting words. My wish for you is that you be pain-free as possible and surrounded by the people and things you love most. May you share many more happy memories here on this earth. Fondly, Nancy

Posted on August 21, 2009 at 1:56:03 PM PDT by momgemma

Thanks for the nice comment. You are a true inspiration and that is what makes this blog so important to so many people. I know some people get on here and read some tough stuff but to be able to find stories like yours, still alive years later is remarkable. We need more stories like yours. Thank you for helping out so many people. ;-)

Posted on July 10, 2009 at 8:33:20 AM PDT by jill

My husband has also been fighting stage 4 colon/rectal cancer(on liver as well) for 3 years next month. The doctors told me he had 6 months and would never work again. He went right back to work, and has proven them wrong time and again. Keep fighting your fight. I believe the mind is the best medicine that here is!

for got to tell ya started reading your book I think it is a great read to those that have followed you as you fought and supported others. Love again Sherri

Posted on June 10, 2009 at 12:07:33 AM PDT by karlak

It was wonderful seeing your face again.
It has been a while. Was thinking about you and
wondering how things were going with you.
Sending a great big hug to my web-sister.

Sherri

Posted on June 10, 2009 at 12:04:09 AM PDT by karlak

Donna, Keep up the fight! My mom’s going on 10 years with a similar story.