Stage IV incurable Colon cancer.

PADAVE1 said:

Treatment Break

Kyolcu - As [I think] most of us know - alot of what we go through is a bit of a science experiment - my 3-month off is a combination of A: giving me a break but also B: Let's see how the C reacts with the idea 3-month should not equal a dramatic change in my situation.  I'm at MSKC so am in good hands.  My last treatment was ~7-weeks ago and I feel pretty great now - I like feeling pretty great lol.  Hopefully the Fall works out for me.  Dave  

I am happy for you it works with longer breaks. It may also depends on Oncologist. My Oncologist at MD Anderson recently put me on Cetuximab only as maintenance chemo, after 2 months CEA increased little bit and tumors grown little bit she added 2.nd chemo of Irinotecan. I hope I can have longer breaks as well.

flowerrod said:

Hello, i am completely new

Hello, i am completely new this forum and just found your post. I'm very sorry to hear about your wife. My husband just got diagnosed with colon cancer, stage IV. Were depressing and shocking news! He is only 42, strong man. We are getting the port surgically inserted next week and, hoepfully, starting the chemo next week as well. We are going on avsatin and Follvox (or something like that) too. 2 days in 14 days. first 2 hours in the center and then going home for the rest 46 hours. Very overwelhming. Any tips or advices about the food/exercise/support groups? It's all new. Thank you all.

I am currently being treated for stage 4 colon cancer. I was in folfox for a while then had a reaction and switched to folfiri. Oxaliplatin is one of the folfox drugs. It causes cold issues so for about the first week of cycle, can't have cold foods or beverages. I haven't had food issues around not eating. In fact, for me, the drugs have me starving all the time and I have gained 25 pounds. I do have to eat smaller meals. I get a bit of indigestion. My gall bladder was removed with my liver resection, so too much bad fats at one time doesn't work for me. You didn't ask about cold, but it hurts. You literally need gloves to get something out of fridge. The fatigue for me is bad the first week, gets better towards the end. Although, each round has made me have worse fatigue. My hospital has a nutritionist who talked with me during my first infusion. Apparently, protein is very important. You should speak to one if it is available. She gave me a handout that had the various scenarios that can affect appetite and the best way to handle each.

Kevin1224 said:

Thank you

Not going to lie when the onc told us that we were both down.  I can also see in the oncologist that it hurt her to tell us.  She does truly care for us.  With that said I told my wife I won’t give up on her and to not give up on herself.  We will battle 1 day at a time, 1 week at a time, 1 month at a time and 1 year at a time.

I’m sorry to hear of your wife’s dx. My stage iv colon cancer was discovered in a similar way, high liver functions and my first doctor/oncologist thought it was my gallbladder. It wasn’t, it was cancer. He gave me less than a year over 14 years ago. I immediately got a second opinion from MSKCC (Dr. Nancy Kemeny) and I’ve been with her ever since. When you refer to your wife’s oncologist as ‘she’ it makes me think your wife is with Dr. Kemeny. I’ve done similar treatments over the years with good success, however, I’m not cured or NED which is fine with me. I had the HAI infusion installed and it totally got rid of my liver Mets. I had been inoperable at the time of my dx. Like many people, the cancer spread to my lungs and I’ve had 3-4 operations (wedge resections) and 6-7 RFA’s (ablations) which worked out ok. 5 years ago I had to have radiation on a lung met due to its location and it unfortunately gave me respiratory fibrosis- it destroyed the upper part of my right lung. I knew the risk going into it so I was bummed but not shocked. I’ve been on oral chemo, Xeloda, and Avastin ever since. I tolerate it well. 

Hopefully my background story makes this point. Try to remain positive. Not always possible and there will be crappy days. New protocols become available all the time. I was helped immensely by Avastin. I did Irinoteacan for many years (7) along with Erbitux. No picnic but tolerable. In the Fall of 2017 I had to go back on Irinoteacan for two months. The entire time I was on it years ago my hair thinned but I didn’t lose it. The last time I lost it but it grew back. I mean it’s only hair and, many won’t believe this but Dr. K said “I looked cute”*. She has a reputation for being all business which I don’t mind at all. I’ve heard many people tell me that she does care about them and I truely believe that she does. I wanted an oncologist who would aggressively treat my cancer. The nurses and staff provide the warm and fuzzy part.

Personally I’d consider the clinical trial but that’s me. Immunotherapy looks very promising. Like everything else there are no guarantees at all. What works for one person may not work for another and visa versa. However, I’m a firm believer in attitude playing a role in one’s outcome. 

I hope this is helpful

 Baldie  vs  Now

blessed39 said:

My Story

Kevin,so sorry to see you on this site, but since you are, just know it's the best.

Last December, I turned 78 and have been in remission for about 10 years. I also had stage IV colon cancer. If you care to read my story, just go to go my page and click on my blog and there you will find my story. God bless you and your wife   blessed39

I didnt see the link on your about me space.  I read your story awhile back but wanted to read it again.  can  you please send the info for that link?

Kevin1224 said:

Thank you

Thsnk you PhillieG, the oncologist at Sloan is Dr. Vargesse.  She is great, very kind person.  While Sloan as said that my wife’s cancer is incurable, and She is not a candidate for operation I have been getting second and upcoming third and forth opinions.  I first went to a surgeon who works out of Lenox Hill, but spent time with Cancer of America’s and LIJ.  He was the doctor who originally told us to do a colonoscpy.  He looked at her scans, and read the reports and could not understand why they said she is not a candidate for surgery.  He explained that it looks pretty straight forward and his plan was to take a big chunk of the tumor and send it to a lab to see which chemo is actually effective againt the tumors.  This test takes about 3 to 5 weeks fot the results to come back.  I actually heard they do this same thing in Greece and it actually has been benificial.  Then he said in about 3 to 6 months of the chemo that works the tumors should shrink even more for him to sucessfully clean out the colon, liver and adrenal tumors.  Then he said after that we can focus on the bone with radiation and chemo.  I am a little confused how one doctors says one thing and the other says another, but at least this sounds like a game plan.  Like I said I will be checking with Cancer center of America and MD Anderson to see what they say.

 

Kevin

I think they play such an important role in our treatments. I was never told by SK that I could be cured but my first oncologist basically told me to start digging a hole in the ground. I’m not familiar with Dr. Vargesse, I’m sure she’s good as are the vast majority of the doctors and staff at SK. I’m also a bit puzzled why your wife was told she’s inoperable but every case is different. 

The idea that they can remove part of the cancer and test it to see which treatments can be effective is quite amazing. To my knowledge, that wasn’t an option 14 years ago. Part of the game is to stay around long enough for new treatments to become available. I hope and believe that one day they’ll tame this beast called cancer. 

I am very sorry to hear about your wife.  My wife too had stage IV colon cancer.  You are doing the right things.  Getting a 2nd opionon was a great move.  Stage IV is a beast, but everyone's body reacts differently to the treatment.  It seems that you are already clearheaded amidst the chaos this desease causes in one's life - that is good.  Stay strong, your wife and family need you. Have faith - in God (if you believe), in yourself, your family & friends.  Although it is difficult, try to enjoy the good moments as best as possible.  The desease will create limits on certain experiences, but try to find ways to enjoy life in between the difficulties of the desease.  Don't forget to take care of yourself, it is important that she has a strong person to lean against.  It is unfair and I'm very sorry you and your family must face this situation. 

Myd 

I'm so sorry I'm not able to help you with your particular situation but don't ever give up.  There are many routes that can be taken.  You and your wife are in my prayers.

Kim

Kevin,

This will probably provide no new info, but I was diagnosed with stage4 in November 2016 and immediately went on the standard of treatment care (5FU, Avastin, Oxaliplatin).  I withstood Oxy through ten cycles before the neuropathy caused my Oncologist (Stein at Smilow Cancer Hospital (Yale)) to take me off the Oxy.  I just completed my 40th cycle.  I go every other week.  I’ve only taken time off because I had travel plans.  Dr Stein said I could stop treatment altogether and ‘see how it goes,’ or continue; I’m tolerating it well, I’m going to continue!  I, too, am not a candidate for liver resection, so I keep on the5FU and Avastin and tgectumors keep shrinking.  I think I am one lucky man.

My advice to you and your wife: keep a positive attitude.  I truly think my attitude has helped me thus far.  I know it has helped my family deal with this.

please let me know if I can help you at all.

Regards,

Paul

Kevin1224 said:

Thank you

Thsnk you PhillieG, the oncologist at Sloan is Dr. Vargesse.  She is great, very kind person.  While Sloan as said that my wife’s cancer is incurable, and She is not a candidate for operation I have been getting second and upcoming third and forth opinions.  I first went to a surgeon who works out of Lenox Hill, but spent time with Cancer of America’s and LIJ.  He was the doctor who originally told us to do a colonoscpy.  He looked at her scans, and read the reports and could not understand why they said she is not a candidate for surgery.  He explained that it looks pretty straight forward and his plan was to take a big chunk of the tumor and send it to a lab to see which chemo is actually effective againt the tumors.  This test takes about 3 to 5 weeks fot the results to come back.  I actually heard they do this same thing in Greece and it actually has been benificial.  Then he said in about 3 to 6 months of the chemo that works the tumors should shrink even more for him to sucessfully clean out the colon, liver and adrenal tumors.  Then he said after that we can focus on the bone with radiation and chemo.  I am a little confused how one doctors says one thing and the other says another, but at least this sounds like a game plan.  Like I said I will be checking with Cancer center of America and MD Anderson to see what they say.

 

Kevin

Scott Kopetz at MDAnderson is assembling "moonshot" effort for colon cancer.

Could be another source of help.