It is only in the lymph nodes

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rcap
rcap Member Posts: 4
edited May 2014 in Colorectal Cancer #1

 

HI EVERYONE IT IS MY FIRST TIME POSTING HERE (ENGLISH IS MY SECOND  LANGUAGE) I AM SO SCARE MY HUSBAND 

WAS DIAGNOSE FEB 28 2013 STAGE 4 CC 15/17 INFECTED LYMPH NODES NO ORGANS INVOLVED . HE HAD 12 TREATMENTS  

OF FOLFOX ,5FU OXIPLATIN AND AVASTIN.HE FINISHED HIS TREATMENTS IN OCT 2013 HE HAD A PET SCAN AND HE HAD NO

EVIDENSE OF THE DISEASE,(NED) THEN IN JAN 2014 HE HAD A BLOOD TEST AND HIS CEA WAS GOING UP FROM 1.6 TO 2.1 

BY MARCH 2014 HIS CEA WAS 40 HE HAD A CAT SCAN AND IT WAS FOUND THAT HIS NECK HE HAS AN INTERVAL DEVELOP

MENT OF BILATERAL SUPRACLAVICULAR HYPERMETABOLIC LYMPHADENOPATHY  WITH THE LARGEST LEFT SUPRACLAVICULAR

LYMPH NODE MEASURING 2,2X1,3 CM AND ON THE RIGHT 1.8X1.1..

 

CHEST; there is interval development of multiple hypermetabolic mediastinal lanlarged lymph nodes.there is not hilar or axillary lymphadenopathy'

 

Abdoment::there is interval development of moderarate retroperitoneal and mild portacaval hypermetabplic lymphadenoparhy.

the liver spleen ,pancreas and the bile duct are unremarkable' no free fluid or free air'

 

Pelvis :Interval development  of right external illiac chain with hypermetabolic lymphadenopaty is identified; no free fluid or 

free air.

the onco said the only treatment would be chemo for life' i have been lurking around all the post andi havent been able to 

find   any information of any member with only lymph nodes involment. is this situacion far worse? is anyone familiar with a 

situation like this, it is so scary i feel that i dont have life anymore just the thought of loosing my husband it is so sad.

 

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    So sorry to hear this news

    Welcome to the forum, but so sorry to hear of your husbands trial with cancer. 

    I cannot help you with answers, but can only give you words of confort. I know, this is not really a good time to talk comfort. How scary for all of this to be happening to you both. 

    There are many caretakers here that can give you their own special type of support, and they will be popping in as the days pass. 

    I pray that both you and your husband will find a chemo that will keep this cancer in check. It is all too scary. 

    Be sure to visit us here, and you will find confort and inspiration.

    Blessings!

  • lp1964
    lp1964 Member Posts: 1,239 Member
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    I think it is very....

    ...unusual to have cancer in so many lymph nodes, but not in organs. They should biopsy some of the lymph nodes to see if there is cancer in them. Lymph nodes are very active if they fight infection and that could explain their hyperactivity. 

    Push for biopsy, before starting lifelong chemo.

    wish you the best.

    Laz

  • LindaK.
    LindaK. Member Posts: 506 Member
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    My husband has a similar diagnosis

    My husband was diagnosed in December 2012 with Stage II colon cancer.  Tumor in colon removed and 6 months of Folfox treatment, ending in July, 2013.  January 2014 another tumor was removed from small intestines.  March 2014 scan showed only lymph nodes now "suspicious"  Started Folfiri in March and had a ct scan a few weeks ago that showed shrinkage of the 4 lymph nodes involved after 4 treatments.  No other organ involvement in March or now.  He is on chemo for life since it is considered stage IV and the words incurable were used by the oncologist we left in March.  We are going to a much better, bigger and more hopeful cancer center where those words have not been spoken (yet).  Old oncologist said this type of spread was rare.  New oncologist said it happens about 20% of the time and would not call it rare.  I have not found too many others on this board with this exact condition, but know it is still called colon cancer so treatments are very similar.  Also, our new oncologist said CEA rise is only correct about 50% of the time.  My husband's CEA had actually declined while in the hospital with an aggressive tumor growing.

    Are you in the US?  Where is he getting treatment?  I think people can live several years on this treatment if it shows it is working.  Good luck

    Linda

  • rcap
    rcap Member Posts: 4
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    LindaK. said:

    My husband has a similar diagnosis

    My husband was diagnosed in December 2012 with Stage II colon cancer.  Tumor in colon removed and 6 months of Folfox treatment, ending in July, 2013.  January 2014 another tumor was removed from small intestines.  March 2014 scan showed only lymph nodes now "suspicious"  Started Folfiri in March and had a ct scan a few weeks ago that showed shrinkage of the 4 lymph nodes involved after 4 treatments.  No other organ involvement in March or now.  He is on chemo for life since it is considered stage IV and the words incurable were used by the oncologist we left in March.  We are going to a much better, bigger and more hopeful cancer center where those words have not been spoken (yet).  Old oncologist said this type of spread was rare.  New oncologist said it happens about 20% of the time and would not call it rare.  I have not found too many others on this board with this exact condition, but know it is still called colon cancer so treatments are very similar.  Also, our new oncologist said CEA rise is only correct about 50% of the time.  My husband's CEA had actually declined while in the hospital with an aggressive tumor growing.

    Are you in the US?  Where is he getting treatment?  I think people can live several years on this treatment if it shows it is working.  Good luck

    Linda

    only in the lymph nodes

     Hi Linda:           

               We are in the USA . my husband had his surgery at USC keck school of medicine southern california

    he is now starting his second line of treatment with folfiri and irrinoteacan the oncologist treating my husband told us

    the he would be on chemo for the rest of his life that his situation was far more grave than if the cancer was in the liver or any  other organ becose usually they coulnt surgivally remove the cancer from the lymph nodes. it is so scary .

     

                     

    Rita

     

  • LindaK.
    LindaK. Member Posts: 506 Member
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    rcap said:

    only in the lymph nodes

     Hi Linda:           

               We are in the USA . my husband had his surgery at USC keck school of medicine southern california

    he is now starting his second line of treatment with folfiri and irrinoteacan the oncologist treating my husband told us

    the he would be on chemo for the rest of his life that his situation was far more grave than if the cancer was in the liver or any  other organ becose usually they coulnt surgivally remove the cancer from the lymph nodes. it is so scary .

     

                     

    Rita

     

    Yup, it is scary

    Your husband's treatment sounds very similiar to my husband's.  Cancer in general is scary, but you have to take every bit of good news and run with it.  As long as they offer treatment and hope, you have to take it.  That's my opinion anyway.  I take an anti-depressant and my husband has Ativan when he needs it.  It has helped both of us.  It's difficult for him to always think "This could be my last summer, vacation, etc." and for me to think "I could be a widow next summer" but I try very hard to push those fears away.  When his oncologist says things like "I'm very pleased with his progress" we celebrate those words.  I wish you and yoru husband well.  We are in NY State and have an excellent cancer center at the University of Rochester.

    Linda

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    Hi, I do not have the same

    Hi, I do not have the same situation but I'm with Laz about biopsies.  Cancer really does take the life right out of you sometimes.  Hopefully as you start to get more answers, you'll have some peace of mind.  I really think you should get a second and maybe even third opinion (I would also say at a different facility so the person can't read what this doctor thinks.  I would have done that if I could do things differently). 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    Hello and welcome!

    Did I see that you posted at the Colon Club forum too?  I was going to mention that board to you, as they have a thread dedicated to the "Olymphians"...people who only have lymph node involvement.  It's not very common, but there are a few members there with that issue.

    I hope we can provide you with some support as you and your husband go through this journey.  It's very tough and scary, but it's a little easier when you go through it with some friends at your side.

    Hugs to you both~AA

  • rcap
    rcap Member Posts: 4
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    Hello and welcome!

    Did I see that you posted at the Colon Club forum too?  I was going to mention that board to you, as they have a thread dedicated to the "Olymphians"...people who only have lymph node involvement.  It's not very common, but there are a few members there with that issue.

    I hope we can provide you with some support as you and your husband go through this journey.  It's very tough and scary, but it's a little easier when you go through it with some friends at your side.

    Hugs to you both~AA

    thank you

    Thank you for all for all of your advice.(english is my second language) a second and third opinion is a good idea

    also a biopsy.

     

  • thxmiker
    thxmiker Member Posts: 1,278 Member
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    rcap said:

    only in the lymph nodes

     Hi Linda:           

               We are in the USA . my husband had his surgery at USC keck school of medicine southern california

    he is now starting his second line of treatment with folfiri and irrinoteacan the oncologist treating my husband told us

    the he would be on chemo for the rest of his life that his situation was far more grave than if the cancer was in the liver or any  other organ becose usually they coulnt surgivally remove the cancer from the lymph nodes. it is so scary .

     

                     

    Rita

     

    You are at a top notch

    You are at a top notch facility for treatment!   I also use USC and am amazed at their grace and compassion.

     

    My opinion: depending on what study one reads, 40%-65% of cancer patients die from malnutrition.  Make sure you get on a balanced diet that helps build the energy.   I get depleted of energy from all of the bathroom trips.  Bananas, Juice, and ginger helped me keep calories.  I could then eat a balanced meal veggies, salads, and what ever else I made for dinner.

     

    Exercise!   The worst I felt, I always felt better after walking around the block, or more.  I currently am working in our garden. Sometimes I can only get in the garden for 5 minutes, then wait an hour and work again.  Keep covered up because during chemo he will be sun sensative.  We will get fresh food, a pretty yard, and I get teh benefit of exercise.

     

    Imune system strength is important.  Stay away from sick friends or relatives.  Why should he get their cold or flu?  Eat foods that help him build his immune system strength.  When we are weak from cancer or chemo we do not need more body stress.

     

    Last and maybe the most important thing, ATTITUDE!   Tell him to find his happy place!  It is easy to be sad, but much healthier to be happy!  Every time I have got a little sad, I have met someone whom was having a much worse time then me with cancer or life.  It made me humble and think how II should be greatfull for having the life that I have had, and continue to have!

     

    We are sending our thoughts and prayers for heaing and happpiness!

    Best Always,  mike

    PS  Ok really the last thing, Do not read anything before 2007. The results and treatments have improved that much since then.

  • rcap
    rcap Member Posts: 4
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    thxmiker said:

    You are at a top notch

    You are at a top notch facility for treatment!   I also use USC and am amazed at their grace and compassion.

     

    My opinion: depending on what study one reads, 40%-65% of cancer patients die from malnutrition.  Make sure you get on a balanced diet that helps build the energy.   I get depleted of energy from all of the bathroom trips.  Bananas, Juice, and ginger helped me keep calories.  I could then eat a balanced meal veggies, salads, and what ever else I made for dinner.

     

    Exercise!   The worst I felt, I always felt better after walking around the block, or more.  I currently am working in our garden. Sometimes I can only get in the garden for 5 minutes, then wait an hour and work again.  Keep covered up because during chemo he will be sun sensative.  We will get fresh food, a pretty yard, and I get teh benefit of exercise.

     

    Imune system strength is important.  Stay away from sick friends or relatives.  Why should he get their cold or flu?  Eat foods that help him build his immune system strength.  When we are weak from cancer or chemo we do not need more body stress.

     

    Last and maybe the most important thing, ATTITUDE!   Tell him to find his happy place!  It is easy to be sad, but much healthier to be happy!  Every time I have got a little sad, I have met someone whom was having a much worse time then me with cancer or life.  It made me humble and think how II should be greatfull for having the life that I have had, and continue to have!

     

    We are sending our thoughts and prayers for heaing and happpiness!

    Best Always,  mike

    PS  Ok really the last thing, Do not read anything before 2007. The results and treatments have improved that much since then.

    thanks for your advise

    I am glad we went to USC for my husban's surgery. i know that Dr. Lenz is your Onco and you are very happy with his care

    after reading many of your good experience with DR. Lentz my husband has decided to make an appointment with him.

    I appreciate  your advise. thank you soo much.

     

    rcap

  • LindaK.
    LindaK. Member Posts: 506 Member
    Options
    lp1964 said:

    I think it is very....

    ...unusual to have cancer in so many lymph nodes, but not in organs. They should biopsy some of the lymph nodes to see if there is cancer in them. Lymph nodes are very active if they fight infection and that could explain their hyperactivity. 

    Push for biopsy, before starting lifelong chemo.

    wish you the best.

    Laz

    Can't always biopsy lymph nodes

    Laz, I know in my husband's case, they are calling the lymph nodes "distant" from his colon and small intestines (where they removed cancer and testing lymph nodes previously).  They said they were 90-95% sure they were cancer so my husband started Folfiri and has seen shrinkage.  The lymph nodes affected are in the upper belly, no other organs are involved at this time.  I'm pretty sure our new oncologist said he has never seen it spread from the lymph nodes to organs, maybe I'm not remembering it correctly - we've had so much information lately.  They also said they can't surgically remove them, not really sure why.  I'll have to ask more of these questions at our next appt.   I would imagine if they could biopsy them, they could remove them at the same time.  If I remember, I'll let you know the answers he gives us.

    Linda

  • Nana b
    Nana b Member Posts: 3,030 Member
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    rcap said:

    thank you

    Thank you for all for all of your advice.(english is my second language) a second and third opinion is a good idea

    also a biopsy.

     

    He is on irrotecan and

    He is on irrotecan and Folfri, usually these aren't together?  It's one of those with Avastin, Erbitux or zaltrap. 

    I was on irrotecan, then moved to Folfri.  I'm also getting a second opinion. 

     

    Best of everything to you both.  Stay Strong. 

     

     

  • Luckygirl2
    Luckygirl2 Member Posts: 308
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    sounds like me

    My pet scan shows very similar to your husbands.  I just finished my 5th or 6th round of Eurbitix, I am on a list for clinical trial at MD Anderson in Houston.  Next scan is July 8th hoping for no growth this time, I need shrinkage.  I'm looking at life long chemo as well, hopefully not every week like it now.  If chemo for life is going to keep me breathing and have a quality of life then I guess it is what it is.

    Cancer is very scary especiallly first time around heck 2d time around too.  Sending prayers and good thoughts your way.

    Debbie