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Stage IV incurable Colon cancer.

Kevin1224
Posts: 34
Joined: Jun 2018

Hi everyone,

I am new to this and this is my first ever post.  What a year it has been, at this time last year my wife who was 43 at the time was always complaining of upper right shoulder pain.  At first we did not really think it was anything, so I would massage her shoulder and when I would do it it would feel like a ball and I could move it from place to place.  After about a week of this I made a doctors appointment to find out what was wrong with her.  Her GP did the normal routine of drawing blood and thinking she might have gallstones.  He ordered  ultasound to see if this is true.  When doing the ultrasound they noticed she had 3 large masses in her liver.  The largest being 12cm, the other mass was 6 cm and the smaller one was 3 cm.  Needless to say we were shocked.  He immediately set us up with an oncologist that was affiliated with Mt. Sinai in NYC. We went and saw the oncologist and she ordered an MRI and did a biopsy of the mass in the liver to see if it was cancerous.  The results came back and it was cancerous, on top of that the MRI showed she had an additional mass in her adrinal gland.  They started her on a regiment of chemo gemcitabine and oxyplantin for the liver.  I wanted to get a second opinion from another doctor, and thank god we did, that doctor said he did not believe it was liver cancer he thought it was colon cancer and to hurry and get a colonoscopy right away.  We did that and sure enough it was colon cancer that had spread to the liver and adrenal gland.  My wife already went through three sessions of chemo (two weeks on 1 week off once a week).  Because of the wrong prognoses her CEA rose to 1500 and her CA-19 rose to 3400.  My wife and I were no longer happy with Mt Sinai, and was able to get her into Memorial Sloan Kettering. We first saw a liver surgeon first.  He reviewed all the films and blood test and told us she is not a candidate for surgery because she has it in too many places.  He set us up with an oncologist who explained everything to us that a new chemo regiment will be done.  This consisted of 5fu Avastin and Oxyplatin.  This was to be done every two weeks and that she would be going home with a bottle and get disconnected  after 48 hours.  This started September of 2017 and everything was going great her first two PET scans showed that almost all of her tumors shrunk 50% or more.  Her CEA droped all the way down to 650 and her CA-19 also dropped to the low 450.  The oncologist took her off the Oxyplatin, because she was afraid of the long term affects of nyrapothy.  So she stayed on the 5fu and Avastin regiment.  Her last scan in February was a set back.  We kind of knew it because the tumor markers came back and the CEA stayed the same but the CA-19 went up to 750. Sure enough the colon and the adrenal mass stayed the same, but the liver masses grew a little.   We were devastated by the results, the doctor gave us a couple of choices, one being clinical trials, another was trying another medicine call Irenotecan.  We decided not to try the clinical trial yet because we feel it’s not that time yet so we started the new medicine that is administered the same way with the 5fu and Avastin.  Just wondering if by one is going through the samething, and can give us any advise.  Thank you in advance

Kevin

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abita
Posts: 610
Joined: Dec 2017

I am not going through the same thing as mine were operable. All my tumors have been removed. I was also on oxaliplatin though, and the first 4 did shrink my tumors by half also. Mine were very large, but were all in half my liver, so I could get a liver resection. I had a reaction to the oxaliplatin and had to switch to irintecan. I guess I had 5 so far. Anyway, the only thing I can say is that if the side effects are what worry you, for me, they are not that bad. I get a medicine to prevent the diarhea right before I get it. Everyone is different. My other two drugs are 5fu and leucoverin. The fatigue is so bad though. But worth it. My oncologist said he has seen Irenotecan work very well. I can't say for sure because for me it is to kill the hidden microscopic cells. 

 

I am sorry you had a bad experience at Mt Sinai. I go to Mt Sinai west. I love my surgeon and oncologist. It is very important you have doctors that give you hope. I honestly feel that the only reason I have survived was my surgeon. My case was bad. People came to visit me and I think it was because they didn't think I would make it. I hope you find the doctors that are right for  her and that she is able to shrink those tumors.

Kevin1224
Posts: 34
Joined: Jun 2018

Thank you for the support.  Unfortunately she is not a candidate for surgery because she has it in so many places.  As for the chemo’s she has tolerated them really good.  She goes to work everyday not missing one day. Little to no nausea, no hair loss.  The only thing is she gets tired really quickly.  I make her organic juices every morning for her to help flush the chemo out of her body.  She also received her medical marijuana card and has been doing the high CBD tinctures.  Her overall health is good considering she has done 24 chemo’s sessions.  Hoping the tumors in the adrenal or colon shrink so she can get the surgery.  

 

Kevin

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abita
Posts: 610
Joined: Dec 2017

I also drink 10 glasses of water to hopefully protect my liver and kidneys. I want to mention though because you said jusices to google grapefruit and the effect consuming it has on medicines. I read that limes are also on that list.

Kevin1224
Posts: 34
Joined: Jun 2018

it is mixture of Carrots,Beats,Ginger,Celery,Kale,Rasburry,Blueberries,Blackberries,Tomatoes,Green apples and lemon.  It has really helped her.  She also drinks a lot of water especially when she has the bottle for 48hrs.

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JanJan63
Posts: 2482
Joined: Sep 2014

I am stage four with mets in one lung. I am not a candidate for surgery, either. So I keep having chemo to keep the tumours under control. My oncologist says I'll never get rid of my cancer, I'll just live with it and keep it at a manageable level. I was really upset when i was told this but I'm okay with it now. From what they say I still have a good ten years left. That's not bad. Maybe more, who knows. They're coming up with new treatments every day.

It's wonderful that she's tolerated the chemos well. That's a real plus.

Jan 

Kevin1224
Posts: 34
Joined: Jun 2018

Thank you JanJan, they basically said the samething to us. It was heartbreaking, but we will continue to fight and hope medicine keep advancing to find a cure to this terrible disease.  Just curious how long have you been on chemo?  

 

Kevin

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JanJan63
Posts: 2482
Joined: Sep 2014

I'm on it and off it. I've been on 4 different ones. What has been working for me is Vectibix. It's an immunotherapy chemo. It seeks out a protein in the tumours and tells the body to use it's immune system to go after the tumours. It has some unpleasant side effects but it works well for me. That being said, they tested my original tumour to see if this chemo would be effective for my cancer and it is. Not all colon cancers respond to this one. 

They say that immunotherapy chemos are the future of chemos until something better comes along. The problem with cancer is that the body does not recognise it and so doesn't fight it on it's own.

Jan

Kevin1224
Posts: 34
Joined: Jun 2018

Thank you again JanJan.  The oncologist at Sloan asked my wife if she wanted to partake in a clinical trial that was basically immutherapy.  At this time she did not want to do a trial as she felt like that could be her last choice if that arises.  She said she wants to keep with the chemo and keep fighting.  She is a strong women, who is fighting because she wants to be around for our 6 year old daughter.

 

Kevin

kyolcu
Posts: 112
Joined: Jun 2017

Hi Jan,

I believe we are in the same situation and I am on Cetuximub as the same family as your immunotherapy chemo. My question is even immunotherapy chemo does our body fight with cancer or not. I thought with immunotherapy chemo our body is fighting with the cancer. 

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JanJan63
Posts: 2482
Joined: Sep 2014

I was told that any drug that ends in mab is an immunotherapy. Mine is called Panitumumab so yes, it does sound like yours is also an immunotherapy chemo. It tells the body to fight the cancer, yes. Otherwise the body just lets it grow because to the body they're normal cells, they just don't die. With mine, the protein it goes after is also in the skin and a few other areas so the immune system starts to go after the skin and other areas as well. I haven't finished a round yet and I've been on it 3 times but it makes a difference even without me being able to finish. So that's pretty good. I was also told that the likelihood of the cancer becoming immune to this type of chemo is much less than with traditional chemo. Another plus.

Jan

kyolcu
Posts: 112
Joined: Jun 2017

Thank you, Jan

You were given more information than my Oncologist told me. My Oncologist is little crazy but she is good doctor. She allowed me to continue smoking 1 cigar a week but I do smoke 1 a day because I feel so good with almost no side effects. I hope next CT scan on June 12 will be nice too. I am on maintenance now and having Cetuximub only for 2 months.

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PADAVE1
Posts: 10
Joined: Jan 2018

Jan - My situation sounds very much like yours - mets in lung and liver - my recent treatment was FOLFIRI + Avastin - worked pretty well.  Question - i'm currently getting a 3-month "break" from treatment - will regroup in the Fall.  I'm curious how often you would get "breaks"and how you / they rotated treatment [or are you consistantly on the same thing].  TY - Dave

kyolcu
Posts: 112
Joined: Jun 2017

Hı Padave,

I never had 3 month break sınce my treatment but the longest break was 3 week. I was told chemo is good for 2 weeks. I am on maintenance immunotherapy chemo takes about an hour every 2 weeks. Does your oncologist ok’s your 3 month break? It is not common  Good luck for all of us in this long journey. 

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PADAVE1
Posts: 10
Joined: Jan 2018

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  

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JanJan63
Posts: 2482
Joined: Sep 2014

I've had breaks because of things going south every time I go on a chemo. I haven't finished a round of treatment yet. Right now I'm on a break because I asked for it but I think what's going to happen in the future will be that I'm on it twice a year, in the fall and spring.

Sorry my answer isn't helpful at all.

Jan

kyolcu
Posts: 112
Joined: Jun 2017

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.

linda7408
Posts: 21
Joined: Mar 2018

Hi Dave.  I had rectal cancer with mets now scattered throughout both lungs. Sigh   I am on the Folfiri and Avastin right now.  My oncologist told me that I will be getting 3 month breaks as well as long as the tumors have shrunk down.

myAZmountain
Posts: 260
Joined: Apr 2018

I am Stage 4 with mets in both lungs--they think.  Had large mass in cecum that spread into appendix that ruptured--that is how the cancer was discovered. They did surgery first, my CEA was 25.--NO lymph nodes were positive (23 taken) Had a tumor on the omentum that they removed, margins clean in all areas. Original CT scan had shown areas on lungs and ileum , the PET scan had two  small (1cm) tumors in Right lower lobe. CEA down to 1.7!  I was on cloudnine thinking they could resect the liver and I would possible be curable. Ghe I had a high resolution Lung CT and the radiologist thought there were some small tumore in both lungs .5 cm so now am on FOLFOX.  Two treatments so far and the second one kicked my ***--so tired and that awful neuropathh, and terrible terrible mouth sores on palate and lips..  Has anyone on 5FU had their actinic keratosis on their skin flare up? A bunch of places I had burned off seem to have reappeared and are red and scaly. I know topical 5FU wil slough off precancerous cells but am wondering if it is working from the inside out lol.  Also Jan did you have a high resolution CT on your lungs? 

Mystimom
Posts: 10
Joined: Apr 2018

hello.... when i saw how your cancer was discovered I had to reach out.... 

same thing happened to me, with a large cecal mass infiltrating my appendix and bursting through the tip. I was initailly diagnosed as having appendiceal primary cancer, but was adjusted to colon primary after surgery.

I am Stge 4...currently on a hard-hitting regime of Folfoxiri w/ Avastin, and the 48 hour 5-Fu pump. I am surprised that so few colon cancer pateints are doing the 3-drug Folfoxiri? This is strong but I want as much cnance as I can get to cover all bases.

How are you doing ..?

myAZmountain
Posts: 260
Joined: Apr 2018

So glad your primary wasn't appendix- I think that is a nasty one!. I am on FolFox/avastin and the 5Fu pump, have completed 6 rounds and am getting  a bit of break to get rescanned. Really don't have confidence in my Oncologist/treatment center, I live in rural Arizona and am rethinking everything--had infected ort oafter one month and I feel like I am now "the problem patient" and get very little feedback from ONC. Plus I have yet to see any of the nurses wash their hands whitch freaks me out. AM readin a book "Radical Remissions" and dang it makes you reassess everything! Hoe you are doing well-assuming you have mets somewhere? Did they do a hemicoletomy for the ceum/apendix tumor? Another axe I grind with my doctor is his complete dismissal of B12 --Surgeon removed the ileo-cecal valve and part of the lower ileum which is where  B12 primarily absorbed. He poo poos it. I take b12 supplements anyways.

Mystimom
Posts: 10
Joined: Apr 2018

yes, I heard, too, about appendiceal cancer being a whole other situation. I was believing I had it for weeks, in addition to probably needing HIPEC surgery. As it turned out, I have liver mets and now ovary mets, so HIPEC is out the window thankfully. I just couldn't imagine finding the courage to undergo the Shake and Bake!

So I am doing the same chemo as you, with the added 3rd drug, irinotecan. My onc has ordered 12 rounds for me... how fun.....I have completed 4 rounds so far. I initially had a hemi-colectomy and liver resection in May. Then since I had to wait to start chemo, a new liver met and both ovary mets developed in the meantime. My next scan is this coming Monday. I feel pretty normal during my infusions... just after the pump comes off I get depressed and in general icky feeling. I think the Neulasta shot they give me at pump disconnect makes me ill, so I am asking about the necessity of that at my appointment next tuesday. There is no way I could work outside of the house during this treatment..

i am so sorry you have doubts about your care team! I feel for you. Do you have a port? The nurses definitely have to not only wash their hands and wear gloves, but also wear a face mask when accessing your port, if so. I didn't know about the B-12 issue...very interesting. It sounds as though you're doing the right chemo cocktail, however, have you asked about Irinotecan? My onc is senior colon cancer specialist at Yale in New Haven CT...she has told me that adding this drug has been demonstarting superior outcomes.

 

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abrub
Posts: 2094
Joined: Mar 2010

And if there is any question, you need to be seen by an appendix cancer specialist, not just a colorectal specialist who will treat it as a variant of colon cancer.  Btw, I was dx'd Stage 4 in 2007.  I'm doing quite well.

Mystimom
Posts: 10
Joined: Apr 2018

I'm so happy that you are doing well...you are a strong person for sure. At this point, my doctors are sure it was colon primary...it was just so confusing at first because my appendix burst and the tumor got messy...floated in a free-for-all inside me...ugh. May I ask what your treatment consisted of, and how are you maintaining?

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Trubrit
Posts: 4832
Joined: Jan 2013

Is beatable a real word? 

I hate words like terminal and incurable, they play with the psyche.  

Try not to think of your wife's diagnosis or prognosis, just move forward one day at a time.  Being positive is so important, and I believe can make a difference. 

I'm sorry it was such a long journey before she was properly diagnosed.  

I wih you all the best as you move forward with the treatments.  I believe we have a couple of members here who are on the Irenotecan. If you type it in seach, you may find some good information. 

Tru

Kevin1224
Posts: 34
Joined: Jun 2018

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.

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PhillieG
Posts: 4885
Joined: May 2005

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

 

 

 

 

Kevin1224
Posts: 34
Joined: Jun 2018

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

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PhillieG
Posts: 4885
Joined: May 2005

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. 

osomiel
Posts: 2
Joined: Jul 2018

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

Could be another source of help.

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abita
Posts: 610
Joined: Dec 2017

Thank you for your story PhillieG. I just finished chemo. My tumors were all removed, and they expect my scan to be clean in 6 weeks, but ya never know. To keep my head up when thinking about recurrence, I find hope in stories like yours. My take, and I might be wrong, is that if it comes back, and not where operable, I can get treatment to make it manageable and still continue with my life, just at a lower speed. Kind of like treating a chronic illness.

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PhillieG
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Joined: May 2005

That‘s great that your tumors were removed and you’re done with chemo. I really hope your scans are clean and stay that way. I’m not sure if it’s good or bad that I’m not clear/NED. Ideally, I’d love to be done with this but knowing me, I’d always be waiting for the other shoe to drop. No doubt many people might find this strange. I kinda find it strange too. I see it as one less thing to worry about! I just look at my situation as having a chronic condition. I could opt for ablations for the two remaining lung tumors but I’m concerned about what it could do to my already compromised breathing ability. Knowing my past history I’d probably just grow one or two more tumors. As long as my quality of life remains good I’m ok with my situation.

I’m on disability because I can not handle a 35-40 hr work schedule. I still work but not full time. I do website development for a handful of real estate clients and in April 2017 I started a real estate photography business. That’s something I never dreamed of doing but I’m familiar with the business and I’ve always loved photography so it’s kind of a natural fit. I try to keep my work schedule to 2-3 jobs per week. I’m the type of person who needs to stay busy. Here’s my site if anyone’s interested* https://nyrealestatefotos.com/ny-real-estate-fotos-portfolio 

*I have no shame… ;-)

Slow-runner
Posts: 53
Joined: Oct 2017

Hi Kevin, my husband was diagnosed with Stage IV colon CA, mets to liver, lung and some lymph nodes.  We are at UofP in Phila., he started with the 5Fu, Oxy and Avastin in Sept. 2017. His CEA at that time was 1550. He has approx 10 liver tumors.  He did well with the chemo although did go on short term disability and now long term disabiltiy (he is 62 yo).  Had to stop the Oxy after about 10 treatments as his hands and feet were getting numb so they substituted another med (Irentican, that spelling is awful).  He feels okay until the 5FU is taken down after 48hrs then he is very fatigued for about 3 days, then starts feeling back to normal.  To address his liver turmors he recently had a TACE procedure done (twice, one to each liver lobe). This procedure is like an arteriogram where a cath is threaded up a vein in the groin into the blood vessel that is feeding the liver turmors.  Chemo beads are then injected into this blood vessel and somehow their return is blocked (I forget how they do that).  Anyway, these beads release chemo over 10-14 days directly into the liver turmors. Quite painful post procedure, lost a bit of weight but was able to be the best man in our son's wedding three weeks later (he danced and was able to socialize all night), just had the second lobe done two weeks ago, and again, painful recovery.  He is still getting the systemic chemo every other week, although no Avastin for a couple more weeks due to the TACE.  His latest CEA is 147. This whole deal can be quite depressing but his attitude is amazing.  He is mostly positive, although when he feels bad he does let his thoughts go to the dark side but not for long.  I am sorry that you and your wife are going through this but try to focus on the positive stories that are on this site.  Some have had amazing success - we can too.  Prayers for you & your wife.  Mary

Kevin1224
Posts: 34
Joined: Jun 2018

ths k you Mary, sounds like they are almost the same. They have not said anything about a TACE procedure, I will look into it.  We take it day by day week by week, month by month and hopefully years by years.  It’s a hard road, but we are in it together.

 

Kevin

flowerrod
Posts: 5
Joined: Jun 2018

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.

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abita
Posts: 610
Joined: Dec 2017

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.

Mystimom
Posts: 10
Joined: Apr 2018

the cold sensitivity is very upsetting sometime isnt it! Sometimes i forget and take a sip of something cold and reality comes crashing in. The fatigue is so upsetting too...

Kevin1224
Posts: 34
Joined: Jun 2018

Hello flowerrod, sorry for your husbands diagnosis.  It is a long road ahead.  My wife has been on chemo for a year.  I found that doing a couple of things helped her out a lot.  In the morning I make a fresh organic juice with diffrent things that I found on the internet that helps the effected area that my wife has.  With that I also make a soup sop tea, they say it helps cancer.  She also take a CBD/ THC tincture.  All of this helps with energy and keeps her from getting constipated.  The key is to drink lots of water, you want to get the chemo out of the body as soon as possible.  She eats basically any and everything, but she cut down on her sugar in take, and her red meat in take.  Also your husband might get sores in his mouth, just add a tablespoon of salt to a glass of water and rinse this will help him out.  You will see the day he get disconnected and the next day he will be drained. Get as much rest as he can, he will regain his strength right around the time the next round comes.  Hope this help, if you need anything you have a lot of expertise in this forum. Make sure you take care of yourself, he will need you more than you will ever know.

 

Kevin

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blessed39
Posts: 88
Joined: Dec 2016

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

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Joan M
Posts: 374
Joined: Oct 2016

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?

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Macdougal
Posts: 18
Joined: Dec 2017

Glad to hear you’re getting positive messages from the surgeon.  To answer your original question, irinotecan is very often combined with 5FU and Avastin.  It is a first line treatment.

Best wishes,

-Doug

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myd
Posts: 39
Joined: Apr 2013

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 

kim_dude
Posts: 7
Joined: Dec 2017

I also have inoperable Stage 4 colon cance with mets in the liver, lymphnodes and peritenium (dagnosded Sept, '16).  If did 13 rds of FOLFOX and 7 months of maintenance on Capecitabine and am now on rd 12 of FOLFIRI w/ Avastin. It sucks but whatever works I'm cool with.  Be careful using CEA as an actual indicator as it does not behave the same in everyine.  For instance, I was pretty far down the Stage 4 road when I got diagnosed yet my CEA was only 28; yes, with no zeros. CT is awlays the best measure of what's actually going on.  Best of luck to your wife and don't ever be afarid to ask your oncologist lots of questions.

Annabelle41415's picture
Annabelle41415
Posts: 6186
Joined: Feb 2009

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

Mystimom
Posts: 10
Joined: Apr 2018

Hello!   I am a 51 year young woman who has Stage IV colon cancer with liver mets also.

i was immediately put on 5-fu, leuvocorin, oxaliplatin and Irinotecan. I wear a pump for 48 hours. I go to Yale in New Haven CT. They wanted to be as aggressive as possible.  I have diarrhea and fatigue but I'm doing it.  How are things for you now?

Otto605's picture
Otto605
Posts: 14
Joined: May 2018

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
Posts: 34
Joined: Jun 2018

Hello Otto,

I have been seeking second opinions from diffrent doctors, and diffrent hospitals to see if they agree with what Sloan Kettering is saying.  I meet with a surgeon who we previously saw and looked at a CD that I had of her CT scan and he could not understand why she was considered in operatable.  His plan isto clean out her left side of her liver and send the tumors to a facility in California to test her tumors with chemo and see which one is effective.  He wants to infuse the liver directly with the chemo and shrink the chemo.  This will serve two purposes, it will clear the left side of her liver, and he wants to see if it will grow back.  If it does not grow back he will do the right side tumors in the liver at the same time taking out the adrenal and the colon tumors.  He feels the colon is not the priority right now because her bowels are not obstructed, and the liver is the most dangerous.He is giving is hope and plan on switching to him and the hospital he is affiliated with.

 

Kevin

annie4145
Posts: 97
Joined: Jul 2018

Kevin, Please let us know how it turns out... Also, if my cancer spreads any further, I will be looking at the clinical trials.  They seem to be having a good result, but sometimes they have certain criteria that have to be met before you can get into them. I wouldn't want to wait too long in case I no longer meet the entrance criteria, but it all depends on the trial, and there is a certain unknown risk about participating in a clinical trial over a known treatment.  is the surgeon that you are working with from a good facility?

Good Luck to your family!!!!

 

Barbara

Kevin1224
Posts: 34
Joined: Jun 2018

my wife did the biopsy two and a half weeks ago.  She experienced pain for the first week around the abdoman area, we meet with the doctor last week and he said she is healing just fine. He said he cleaned out the entire left side of her liver, but while inside he noticed she had more tumors on the right side then what the last cat showed.  He was not to worried about it though.  He plan is to have another CT done in a week and by that time the results of the biopsy should be in.  His plan is if the left side did not grow back meaning the tumor then he wants to infuse the liver directly with chemo for about 3 to 6 months and then do surgery.  If it grew back he will do surgery first then chemo after that.  The doctors name is Dimitri Alden and he works out of Lenox Hill which is an affiliate of Northwell.

 

 

Kevin

Mystimom
Posts: 10
Joined: Apr 2018

hi...I noticed you go to Yale also. It's good to hear you are doing well! Has your onc ever discussed Irinotecan with you? Im cc Stage 4 with liver mets. I am doing Folfoxiri, Avastin and the pump for 48 hours. I feel fine until the pump comes off...then so depressed I keep getting in bed and watching movies....

Mystimom
Posts: 10
Joined: Apr 2018

Hi Kevin.... i am in a similar situation as your wife. I am on my fourth cycle of oxaliplatin, irinotecan, 5FU, avastin and leucovorin. 9this is folfoxiri w/ avastin.)

I am stage 4 with liver and ovary mets. my onc wants to be aggressive w me- hence the heavy regime. How is your wife doing with the irinotecan?

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