Stage IV incurable Colon cancer.

Kevin1224

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

abita

I am not going through the

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.

JanJan63

I am stage four with mets in

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

JanJan63 said:

I am stage four with mets in

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 

Thank you JanJan, they

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

JanJan63

Kevin1224 said:

Thank you JanJan, they

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

I'm on it and off it. I've

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

abita said:

I am not going through the

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.

Thank you for the support.

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

Kevin1224

JanJan63 said:

I'm on it and off it. I've

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

Immunotherapy

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

JanJan63 said:

I'm on it and off it. I've

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

Immunotherapy chemo

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. 

abita

Kevin1224 said:

Thank you for the support.

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

I also drink 10 glasses of

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

abita said:

I also drink 10 glasses of

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.

Juices

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.

JanJan63

kyolcu said:

Immunotherapy chemo

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. 

I was told that any drug that

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

JanJan63 said:

I was told that any drug that

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

Immunotherapy

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.

Slow-runner

Husband with similar diagnosis

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

Slow-runner said:

Husband with similar diagnosis

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

Thank you

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

Trubrit

Incurable but beatable

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

Trubrit said:

Incurable but beatable

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

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.

PADAVE1

JanJan63 said:

I was told that any drug that

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

Treatment timeline question

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

myAZmountain

JanJan63 said:

I am stage four with mets in

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 

I am Stage 4 with mets in

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? 

kyolcu

PADAVE1 said:

Treatment timeline question

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

Treatment

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. 

PADAVE1

kyolcu said:

Treatment

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. 

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  

JanJan63

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've had breaks because of

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