One patient with glioblastoma still alive nine years later
by Sagitelle on Thu Aug 14, 2008 12:00 AM
In May 2007, at the age of 52, I was diagnosed with inoperable Stage IV colon cancer with numerous metastases to both sides of the liver. I was told that I had 3-6 months to live without chemo and 2-3 years with chemo. I began chemo in mid-August 2007. In April, when I asked the doctor to see the scan on his computer, I counted at least 12 tumours. My scan in January 2008 showed an important improvement in the size of my tumors, which had shrunk by about half. My April 2008 scan showed a further modest reduction. My next scan is on August 29.
I have had about 24 treatments so far. At first, FOLFOX every 2 weeks with Avastin. In May of this year I asked to switch to Xeloda pills as I could not bear the thought of another 5FU bottle attached to me for 3 days. Also, 5FU made my tongue swell up in addition to it being covered in multiple sores, which made talking and eating painful and difficult. Being tied to a bottle for 3 days in a row evry 2 weeks also made me very depressed. Things have been better since I switched to pills. I hardly get tongue sores anymore and my mouth is a lot less sensitive. I have had diarrhea episodes and I have hand and foot syndrome, but I still prefer the pills. I only need to go to the hospital every 3 weeks now for Irinotecan and Avastin. I am nauseous for about 2 days after my hospital treatment. All in all, however, my quality of life has much improved since I've switched to Xeloda pills.
Has anyone else been diagnosed with inoperable colon cancer with multiple metastases all over the liver? If so, how long have you been given and how long has it been? Have you outlived your prognosis?
I got married to a wonderful man 2 months after my diagnosis and would like to share life with him as long as I can. Also, my 31-year-old son has just told me that he is getting married in January and that his soon-to-be-wife and him want to try to have children right away. I've always looked forward to being a grand-mother and I would like to stay alive as long as I can to enjoy my grand-children after they are born. I would like them to remember me.
Does anyone have a story of hope for me?
by andie on Thu Aug 14, 2008 12:00 AM
I believe the only one who truly knows about life expectancy is our Heavenly Father. That said, I will tell you the following and hopefully, it will give you hope and make a difference. First of all, believe in miracles because they do happen.
My dad is a stage IV colon cancer with mets to liver and lungs..diagnosed July 2007...he is still with us and doing well with chemo..he has a colostomy bag...since he was diagnosed, my 48 year old cousin passed away from a staph infection that spread through her body...a 42 year old former boyfriend passed away from a heart attack..my husband's uncle passed away from a heart attack...ALL SINCE MY DAD'S DIAGNOSIS...
My point is that anyone of us can be taken at any time. A car accident or heart attack can take us before cancer does. If one treatment isn't working out for you, there are others to try. Don't lose hope. Live life to the fullest, as we all should, and if you are a believer, strengthen that relationship with God because for me at least, that is what gets me through the tough times.
by DaveW on Thu Aug 14, 2008 12:00 AM
In Nov 2006 at the age of 48 I was diagnosed with Stage IV colon cancer with multiple inoperable mets to the liver. I was given between 4 and 14 months to live. Feb. 2007 after colon resection I started folfox with avastin. CT scans between Feb and Oct 2007 showed reduction in size of tumors. PET scan in Oct 2007 showed no metabolic activity. I was given chemo holidays since then with only two treatements since.
I have had CT scans every 3 months since. Tumors are now considered cystic in nature only. During the chemo time, I exercised as much as possible, supplemented (without my oncologists knowledge) and changed my diet to primarily fruits and vegetables and whole grains.(NO sugar !!!) . Also I eliminated as many stress factors as I could in my life. I am still here today and am currently training for a half marathon in 3 weeks time. Never give up - there are lots of hopeful developments all the time. It is my personal philosophy to that it is your responsibility alone to do everything possible that you can to save yourself and do not rely solely on the medical establishment. I also give thanks to my idea of GOD for each and every day now.
Hope this helps
Thank you. That is very encouraging. I try to walk at least 5 times a week. I like to do my groceries on foot and carry them home in a packsack. If the soles of my feet hurt too much because of inflammation and peeling, I skip a day or two. I am looking forward to the results of my next scan. I hope that the tumours have shrunk again.
I've lost all my hair and now I'm losing my eyelashes and eyebrows. At least, I can still tolerate chemotherapy. The side effects are manageable. Most days, I feel fine.
Your personal story is inspiring. I also eat lots of vegetables, berries, whole grains, Sencha green tea, salmon and trout, and very little meat, I've even served my husband a turnip soufflé for supper once. He actually liked it! I love vegetables so it's easy for me to eat a lot.
Thanks again and to the others who have replied to me also. It's good to know that others are going through the same thing and still busy living!
by lisaann on Thu Aug 14, 2008 12:00 AM
That's great that your scans have shown tumor reduction! I, too, was told I was not a candidate for liver surgery- too many tumors on both sides. I did end up having a liver resection after all, however. I had a great response to the chemo (plus intervention from Jesus Christ, I believe!) and most of my tumors ended up shrinking away. I ended up having what we thought were just three tumors left (2 on left lobe, 1 on right) & so I ended up becoming a surgical candidate after all, even though they didn't think that would happen. I had my entire left liver lobe removed, plus a good size wedge of the right lobe. My surgeon actually ended up discovering an additional 3 tumors during surgery, which had never shown up before on any scans. So- 6 tumors in all were removed during surgery. My prognosis was pretty grim in the beginning, but it definitely did turn around & I have no evidence of cancer at this point!
Actually, I had my my first follow up PET scan done this morning & I'm praying that the results still show no evidence of disease. But, I just wanted to let you know that, like someone else said, what the doctors say about how much time you have left isn't always so! I've heard of several people who were given a certain amount of time left to live, but they far surpassed that!
Take care & God bless-
by Sallyw48 on Fri Aug 15, 2008 12:00 AM
I was diagnosed in December 2005. I had Folfox with avastin, folfiri with avastin and then a colon and liver resection. I had one more liver resection, RFA and chemoembolization along with numerous rounds of chemo. I plan to start on hospice next week. My liver is now too weak to tolerate any more chemo and all they can do to help me is drain the ascites which builds up continually. I was never given a timeline and we really don't know how long it will be now. I am not feeling too bad each day and am enjoying each day that I get. My best guess is that I will have had about 3 years. Wish I could send you a cheerier message but these last 2 1/2 years have definitely been worth it. I saw my oldest daughter get married and it was wonderful.
by Kiwi_H on Mon Aug 18, 2008 12:00 AM
Good to read all these posts.
I too was diagnosed with Stage 4 Colon cancer in Nov 07, with mets in my liver, lungs, lymph and bones. I was so sick in MArch, the team didn;t think I would make it too summer, but here I am. I have had radiation, (5 weeks of daily radiation) surgery (resection of the tumour and part of my colon) and have now had 8 cycles of Folfuri and Avastin. The last Ct scan showed dramatic reduction in my tumours which I was so thankful for.
I too have a youngish family and a loving husband. It is tough when our furture is uncertaink, but every day is worth living and giving thanks for.
by Cptmac on Wed Aug 20, 2008 12:00 AM
If you haven't done so already, I always suggest getting another opinion.
The great doctors in my state originally said that I could die at any moment but that I would live for 6 to 12 months with treatment. I did a lot of research and found the right doctors and hospital for me in a state that was 8 hours away.
I was diagnosed with Stage IV cc with mets to the liver on July 22, 2004, I signed up for a clinical trial and have been NED since September of 2004. I have been off chemo and all other treatment since June of '05.
I've had relatively few problems throughout my treatment.
You've come to a great place. Let us know how we can help.
by Emmie on Fri Aug 22, 2008 12:00 AM
by Cptmac on Fri Aug 22, 2008 12:00 AM
Yes, I was in the military. I was in the Army Reserves. I would have joined full time, but my husband was against it.
I am 47 years old. I was in great health, so it was a fluke that I even had a colonoscopy. All the doctors were surprised that I had it. I went to a walk in clinic to renew my allergy medication. The doc suggested I get a colonoscopy to rule out IBS or Chron's. But not to worry, it wasn't like I had cancer or anything.
The colonoscopy doc tried to talk me out of it. I had no symptoms, this seemed to be excessive, my insurance wouldn't pay for it, I was too young and that walk-in docs weren't the best docs.
So I did well through all my surgeries.. And you can't tell you have Stage IV, it's rather odd.
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