stage 4 COLON CANCER AND CROHNS DISEASE

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stage 4 COLON CANCER AND CROHNS DISEASE

by googie on Fri Jan 18, 2008 12:00 AM

Quote | Reply

WE FOUND OUT ABOUT MY HUSBANDS CANCER IN OCT. ADDING TO OUR HEARTBREAK IS THE FACT THAT STEVE HAS BEEN UNDER A GI'S CARE FOR YEARS FOR CROHN'S DISEASE. HE HAS BEEN SEEN EVERY 8 WEEEKS FOR 7 YEARS AT THE CANCER CENTER AT GOOD SAMARITAN IN PORTLAND FOR IV INFUSION TREATMENT FOR THE CROHN'S. WE THOUGHT HE WAS BEING WATCHED CAREFULLY. NOW IT'S SO........PAINFULLY CLEAR THAT HE SHOULD HAVE BEEN SCOPED!!

STEVE WENT TO HAVE HIS MEDICATION REFILLED AT WALGREENS (LIKE HE HAS BEEN FOR YEARS) AND WAS TOLD THAT THEY NEED HIM TO SEE A DOC BEFORE THE NEXT REFILL. HE MADE AN APPT AND THE DOC SAID THAT HE SHOULD PROBALLY HAVE A SCOPE EVEN THOUGH HE FEELS GREAT AND THE CROHNS IS UNDER CONTROL. LONG STORY SHORT, COLON CANCER STAGE 4.

EVERY DOC WE HAVE SPOKEN WITH SAYS THAT WE NEED TO FOCUS ON THE WERE WE ARE NOW, NOT HOW WE GOT HERE, EASY FOR THEM TO SAY!

 HE IS ON HIS 7TH CHEMO. DOING WELL, EXCEPT FOR A STAPH INFECTION IN THE PORT AND SURGERY TO REMOVE IT. HE RECEIVES HIS CHEMO THROUGH A PICC-LINE AND TODAY WE RECEIVE THE RESULTS OF HIS FIRST CT SCAN SINCE HE BEGAN CHEMO. PLEASE PRAY FOR US. I HAVE TROUBLE GETTING THRU THE DAY, 4 KIDS AND OUR YOUNGEST IS IN GRADE SCHOOL.

WE WERE TOLD 2 OR 3 YEARS AND I SEARCH THIS SITE FOR HOPE.

 

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by Yettapearl on Sat Jan 19, 2008 12:00 AM

Quote | Reply

 

On 1/18/2008 googie wrote:

WE FOUND OUT ABOUT MY HUSBANDS CANCER IN OCT. ADDING TO OUR HEARTBREAK IS THE FACT THAT STEVE HAS BEEN UNDER A GI'S CARE FOR YEARS FOR CROHN'S DISEASE. HE HAS BEEN SEEN EVERY 8 WEEEKS FOR 7 YEARS AT THE CANCER CENTER AT GOOD SAMARITAN IN PORTLAND FOR IV INFUSION TREATMENT FOR THE CROHN'S. WE THOUGHT HE WAS BEING WATCHED CAREFULLY. NOW IT'S SO........PAINFULLY CLEAR THAT HE SHOULD HAVE BEEN SCOPED!!

STEVE WENT TO HAVE HIS MEDICATION REFILLED AT WALGREENS (LIKE HE HAS BEEN FOR YEARS) AND WAS TOLD THAT THEY NEED HIM TO SEE A DOC BEFORE THE NEXT REFILL. HE MADE AN APPT AND THE DOC SAID THAT HE SHOULD PROBALLY HAVE A SCOPE EVEN THOUGH HE FEELS GREAT AND THE CROHNS IS UNDER CONTROL. LONG STORY SHORT, COLON CANCER STAGE 4.

EVERY DOC WE HAVE SPOKEN WITH SAYS THAT WE NEED TO FOCUS ON THE WERE WE ARE NOW, NOT HOW WE GOT HERE, EASY FOR THEM TO SAY!

 HE IS ON HIS 7TH CHEMO. DOING WELL, EXCEPT FOR A STAPH INFECTION IN THE PORT AND SURGERY TO REMOVE IT. HE RECEIVES HIS CHEMO THROUGH A PICC-LINE AND TODAY WE RECEIVE THE RESULTS OF HIS FIRST CT SCAN SINCE HE BEGAN CHEMO. PLEASE PRAY FOR US. I HAVE TROUBLE GETTING THRU THE DAY, 4 KIDS AND OUR YOUNGEST IS IN GRADE SCHOOL.

WE WERE TOLD 2 OR 3 YEARS AND I SEARCH THIS SITE FOR HOPE.

 


 

My husband was diagnosed with state III colon cancer despite having labs done every month, a colonoscopy at age 45 and than another agan five years later at age 50. The colonoscopy was done earlier than recommended by the American Cancer Society and repeated 5 years earlier that ACS recommended. Joe died on 10/19/07 at the age of 52.

Joe was a kidney transplant recipient and we knew the cancer incidence in IMMUNOSUPPRESSED individuals was higher than in the general population. To top that off I have Crohn's disease and was well aware of the cancer risk in those with both Crohn's and ulcreative colitis.

IN BOTH YOUR HUSBAND'S CASE AND MINE IT IS THE MEDICAL PROFESSIONALS WHO ARE AT FAULT.

CANCER IS THE 2ND LEADING CAUSE OF DEATH IN TRANSPLANT RECIPIENTS as well as in the general population. This has been known for decades and no one educated the patients, their families or incorporated it into their pre and post transplant patient education materials.

 Anyone taking Remicade, Enbrel, Humira and of course prednisone or similar drugs that suppress your immune system is at risk for infection/cancer. Why? Your immune system protects you from cancer and infection. When the drugs you are taking for your autoimmune disease suppresses that system you have nothing to protect you from foreign invaders.

Transplant recipients - no matter what organ - must also suppress your immune system so your own body will not reject your transplanted organ. Today's potent transplant drugs - Cellcept, Prograff and /or Prednisone are usually given together to make sure the organ is NOT rejected. There is one transplant drug thought to have a protective effect - Rapamune.

Yes, the American Cancer Society does have screening guidelines but they are for the GENERAL POPULATION and are based on one's AGE, ethnicity, family history, etc. THIS IS NOT APPROPRIATE FOR THOSE WITH AUTOIMMUNE DISEASE or TRANSPLANT RECIPIENTS.

Several well known transplant renal physicians recommends developing an INDIVIDUALIZED screening guidelines for anyone in this unique category. Drs. Bryce Kiberd and Gabriel Danovitz concur with Walters and Covinsky recommending "individualized" screening. for anyone whose immune system is being suppressed no matter what ---HIV/AIDS. an autoimmune disease (there are 80), and transplant recipients.

Anyone with an autoimmune disease - Crohn's, UC, Rheumatoid Arthritis, Psoriatic Arthritis, lupus, etc.on one of the newer biological  SHOULD have a colonoscopy, mammogram, PSA, full body skin assessment, etc. On the drugs - Remicade, Humira, Enbrel and of course prednisone or other similar medication should have an annual colonoscopy, PSA, skin review, etc.

For transplant recipients in the end stage of their disease should be   pre-transplant and than every year post-transplant. Scientists should be working on finding the level of immunosuppressants that both  retain the transplant or suppress the disease but also allow the patients' immune system to, at the same time, do what it was intended to do -- find and destroy tumor cells that are just beginning to invade one's organs, take hold and begin to combine and become tumors that are not as yet seen by the naked eye.

Dr. Israel Penn, founder of the Israel Penn International Tumor Registry said in 1989 that cancer in the transplant population appears 20-30 years earlier than the general population. It would than stand to reason that cancer screening should begin early and be repeated frequently.

If it is you who has a medical condition such as Crohn's or UC and your doctor hasn't told you of your high risk of colon cancer find another doctor. If you have a transplant and your doctor never mention cancer screening find another doctor. 

I have hundreds of journal articles on this subject and serve on the Malignancy Advisory Board of the National Kidney Foundation. Every cancer screening chart I have seen is out of date and meant for the general population. In speaking with one of the officers of the Colorectal Cancer Coalition she concurred with me in saying that immuno- suppressed individuals should follow the guidelines in the category which includes those who have already had colon cancer oncer and whose families already have a number of relatives with colon cancer. In families with familial polyposis a prophylactic colectomy is recommended.)As  an aside I had my colon completely removed when I was 34 because a doctor refused to believe I had Crohn's, withheld all treatment - treatment that had worked for 13 years - I had gross colonic bleeding and the only way to save my life was to remove the entire colon. The important lesson here is that if you have a doctor who are not comfortable with find another. I was new to town, knew to one, made an appointment with the doctor you had diagnosed me at Hopkins but he was out of the country and wouldn't be back for 6 weeks. While wiating for his return I continually called both my PCP and GI doc who told me it was IBS and there was nothing to worry about.

REMEMBER everyone with Crohn's of the colon (Crohn's colitis also called GRANUMOLATOUS COLITIS) or UC who has had the disease for several years must insist on a colonoscopy. For men have a PSA; women mammography and complete GYN exam.  Have a full body check for melanoma. Stay out of the sun - melanoma can kill.

 Transplant recipients - pre-transplant get a baseline colonoscopy, mammography, skin check, Have a chest x-ray especially if you are a smoker or live with one.Post transplant insist on these tests on an annualbasis.

I know transplant physicians are very busy so sit down with your PCP and together create a screening schedule.. 

I have hundreds of articles on this issue and was published in October in Renal Business Today. I am also working on other articles for many different newsletters and organizations.

Do not rely on your physician to save your life, Your life is in your hands, Read everything there is on your disease especially the complications and morbidities

If you would like copies of journal articles simply email me and I will send them to you.. 

Pearl L

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

 

 

 

 

 

 

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by livingbyfaith on Sat Jan 19, 2008 12:00 AM

Quote | Reply
Wonderful post.  thanks for all the wonderful information.  What a great thing to do, turn the loss of your husband into something positive by helping others.  May God bless you.  Janet

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by googie on Sat Jan 19, 2008 12:00 AM

Quote | Reply
Thank you so much for all the wonderful information. Please accept my prayers own the loss of your husband.  Looking back iit all so clear, my husband has crohns for years,taking: predisone, remacade and azathioprine for years.Now stage 4 colon cancer, he needs one hip replaced and the other is bad.....When the gi first wanted my husband to take remacade i went on line and found infor that showed a link to cancer. Before my husband began the treatment we called the doctors office and spoke of our concern. He asked us to send in the info and he would look at it. Later calling us to say that there is no link that he can really find to out way the benefits. Right! 

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by Fancy on Sat Jan 19, 2008 12:00 AM

Quote | Reply

On 1/18/2008 googie wrote:

WE FOUND OUT ABOUT MY HUSBANDS CANCER IN OCT. ADDING TO OUR HEARTBREAK IS THE FACT THAT STEVE HAS BEEN UNDER A GI'S CARE FOR YEARS FOR CROHN'S DISEASE. HE HAS BEEN SEEN EVERY 8 WEEEKS FOR 7 YEARS AT THE CANCER CENTER AT GOOD SAMARITAN IN PORTLAND FOR IV INFUSION TREATMENT FOR THE CROHN'S. WE THOUGHT HE WAS BEING WATCHED CAREFULLY. NOW IT'S SO........PAINFULLY CLEAR THAT HE SHOULD HAVE BEEN SCOPED!!

STEVE WENT TO HAVE HIS MEDICATION REFILLED AT WALGREENS (LIKE HE HAS BEEN FOR YEARS) AND WAS TOLD THAT THEY NEED HIM TO SEE A DOC BEFORE THE NEXT REFILL. HE MADE AN APPT AND THE DOC SAID THAT HE SHOULD PROBALLY HAVE A SCOPE EVEN THOUGH HE FEELS GREAT AND THE CROHNS IS UNDER CONTROL. LONG STORY SHORT, COLON CANCER STAGE 4.

EVERY DOC WE HAVE SPOKEN WITH SAYS THAT WE NEED TO FOCUS ON THE WERE WE ARE NOW, NOT HOW WE GOT HERE, EASY FOR THEM TO SAY!

 HE IS ON HIS 7TH CHEMO. DOING WELL, EXCEPT FOR A STAPH INFECTION IN THE PORT AND SURGERY TO REMOVE IT. HE RECEIVES HIS CHEMO THROUGH A PICC-LINE AND TODAY WE RECEIVE THE RESULTS OF HIS FIRST CT SCAN SINCE HE BEGAN CHEMO. PLEASE PRAY FOR US. I HAVE TROUBLE GETTING THRU THE DAY, 4 KIDS AND OUR YOUNGEST IS IN GRADE SCHOOL.

WE WERE TOLD 2 OR 3 YEARS AND I SEARCH THIS SITE FOR HOPE.

 


hi first of all why would the doctor come out and say 2 to 3 years i think he/she should have approached it on more of a positive way. forget about statistics we really dont know how much time we have. my mothers stage 4 cancer was approached in a way that gives and gave her hope. the doctor said we are going for a cure never told her she had only 2-3 years to live we might as well give up is what they are saying when they say how much longer. her doctor said if this chemo doesnt work we go to the next chemo we find what works on your body. i think some doctors have more compassion than others and better people skills i think this is a must. i hope your husband is doing as well as can be expected please dont give up and dont let him give up its so hard being the caregiver but its worth it. i spend a lot of time with my mother and i try to keep her mind off of it, we go shopping and do things when she feels up to it. i try to be most positive around her. i say children are the best cure and you have four thats a blessing for i know how much my mother loves to see her kids and her grandkids the little ones always into things which makes her laugh and want to live. i hope you find some comfort from this site i know i have there really are some wonderful people on here. i posted a website on here for everybody to go take a look at and its wonderful. it is called revolutionhealth.com the doctor is hienz-joseph lenz he is a great doctor, leading researcher on colon cancer at usc norris clinic he goes all over the world teaching doing research helping patients and doing this blog on revolutionhealth.com . he will answer your questions and he posts all the latest research being done on colon cancer and topics people want to know about. he really is brilliant .

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by Yettapearl on Sat Jan 19, 2008 12:00 AM

Quote | Reply

During every medical encounter whether the physician is recommending a procedure or writing a script it is vitally important to have complete disclosure of side effects both short and long term.

While my husband was lying in a hospital bed in our living room I tried to help turn him over. From that moment on I was bed bound. Whenever I had to sit or stand - just to go to the bathroom - I would scream in agony. 5 orthopedists said it was simply degenerative disc disease and my pain was out of population to the problem. My internist suggested a bone scan. I had had 3 MRIs. I had a fractured pelvis and sacrum as well as 5 broken ribs. No wonder I was screaming. It has now been about 6 months it is just beginning to heal. Of course the fractures were caused by severe osteoporosis caused by prednisone which I had only taken in the late 1960s on and off not again until 2007 from April until July 2007. I can't take Fosamax, Axtonil or the other similar drug due to the Crohn's so I am now now waiting to see if I can get Forteo authorized which helps build bone, not simply retaining the status quo.

 

Good like, if you every want to get in touch you have my email.

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

 Pearl L

On 1/18/2008 googie wrote:

WE
FOUND OUT ABOUT MY HUSBANDS CANCER IN OCT. ADDING TO OUR HEARTBREAK IS
THE FACT THAT STEVE HAS BEEN UNDER A GI'S CARE FOR YEARS FOR CROHN'S
DISEASE. HE HAS BEEN SEEN EVERY 8 WEEEKS FOR 7 YEARS AT THE CANCER
CENTER AT GOOD SAMARITAN IN PORTLAND FOR IV INFUSION TREATMENT FOR THE
CROHN'S. WE THOUGHT HE WAS BEING WATCHED CAREFULLY. NOW IT'S
SO........PAINFULLY CLEAR THAT HE SHOULD HAVE BEEN SCOPED!!

STEVE
WENT TO HAVE HIS MEDICATION REFILLED AT WALGREENS (LIKE HE HAS BEEN FOR
YEARS) AND WAS TOLD THAT THEY NEED HIM TO SEE A DOC BEFORE THE NEXT
REFILL. HE MADE AN APPT AND THE DOC SAID THAT HE SHOULD PROBALLY HAVE A
SCOPE EVEN THOUGH HE FEELS GREAT AND THE CROHNS IS UNDER CONTROL. LONG
STORY SHORT, COLON CANCER STAGE 4.

EVERY DOC WE HAVE SPOKEN WITH SAYS THAT WE NEED TO FOCUS ON THE WERE WE ARE NOW, NOT HOW WE GOT HERE, EASY FOR THEM TO SAY!

 HE
IS ON HIS 7TH CHEMO. DOING WELL, EXCEPT FOR A STAPH INFECTION IN THE
PORT AND SURGERY TO REMOVE IT. HE RECEIVES HIS CHEMO THROUGH A
PICC-LINE AND TODAY WE RECEIVE THE RESULTS OF HIS FIRST CT SCAN SINCE
HE BEGAN CHEMO. PLEASE PRAY FOR US. I HAVE TROUBLE GETTING THRU THE
DAY, 4 KIDS AND OUR YOUNGEST IS IN GRADE SCHOOL.

WE WERE TOLD 2 OR 3 YEARS AND I SEARCH THIS SITE FOR HOPE.

 


 

My
husband was diagnosed with state III colon cancer despite having labs
done every month, a colonoscopy at age 45 and than another agan five
years later at age 50. The colonoscopy was done earlier than
recommended by the American Cancer Society and repeated 5 years earlier
that ACS recommended.

Joe was a kidney transplant recipient and
we knew the cancer incidence in IMMUNOSUPPRESSED individuals was higher
than in the general population. To top that off I have Crohn's disease
and was well aware of the cancer risk in those with both Crohn's and
ulcreative colitis.

IN BOTH YOUR HUSBAND'S CASE AND MINE IT IS THE MEDICAL PROFESSIONALS WHO ARE AT FAULT.

CANCER
IS THE 2ND LEADING CAUSE OF DEATH IN TRANSPLANT RECIPIENTS. This has
been known for decades and no one educated the patients, their families
or incorporated it into their pre and post transplant patient education
materials.

 Anyone taking Remicade, Enbrel, Humira and of course prednisone
or similar drugs that suppress your immune system is at risk for
infection/cancer. Why? Your immune system protects you from cancer and
infection. When the drugs you are taking for your autoimmune disease
suppresses that system you have nothing to protect you from foreign
invaders.

Transplant recipients - no matter what organ - must
also suppress your immune system so your own body will not reject your
transplanted organ. Today's potent transplant drugs - Cellcept,
Prograff and /or Prednisone are usually given together to make sure the
organ is NOT rejected. There is one transplant drug thought to have a
protective effect - Rapamune.

Yes, the American Cancer Society does have screening guidelines
but they are for the GENERAL POPULATION and are based on one's AGE,
ethnicity, family history, etc. THIS IS NOT APPROPRIATE FOR THOSE WITH
AUTOIMMUNE DISEASE or TRANSPLANT RECIPIENTS.

Several well known
transplant renal physicians recommends developing an INDIVIDUALIZED
screening guidelines for anyone in this unique category. Drs. Bryce
Kiberd and Gabriel Danovitz concur with Walters and Covinsky
recommending "individualized" screening. for anyone whose immune system
is being suppressed no matter what ---HIV/AIDS. an autoimmune disease
(there are 80), and transplant recipients.

Anyone with an autoimmune disease - Crohn's, UC, Rheumatoid
Arthritis, Psoriatic Arthritis, lupus, etc.on one of the newer
biological  SHOULD have a colonoscopy, mammogram, PSA, full body skin
assessment, etc. On the drugs - Remicade, Humira, Enbrel and of course
prednisone or other similar medication should have an annual
colonoscopy, PSA, skin review, etc.

For transplant recipients in
the end stage of their disease should be screened  pre-transplant and
than every year post-transplant. Scientists should be working on
finding the level of immunosuppressants that both  retain the
transplant but also allow the patients' immune system to at the same
time do what it was intended to do -- find and destroy tumor cells that
are just beginning to invade one's organs, take hold and begin to
combine and become tumors that are not as yet seen by the naked eye.

Dr.
Israel Penn, founder of the Israel Penn International Tumor Registry
said in 1989 that cancer in the transplant population appears 20-30
years earlier than the general population. It would than stand to
reason that cancer screening should begin early and be repeated
frequently.

If it is you who has a medical condition such as
Crohn's or UC and your doctor hasn't told you of your high risk of
colon cancer find another doctor. If you have a transplant and your
doctor never mention cancer screening find another doctor. 

I
have hundreds of journal articles on this subject and serve on the
Malignancy Advisory Board of the National Kidney Foundation. Every
cancer screening chart I have seen are out of date and are meant for
the general population. In speaking with one of the officers of the
Colorectal Cancer Coalition she concurred with me in saying that
immuno- suppressed individuals should follow the guidelines in the
category which includes those who have already had colon cancer oncer
and whose families already have a number of relatives with colon
cancer. In families with familial polyposis a prophylactic colectomy is
recommended.)As  an aside I had my colon completely removed when I was
34 because a doctor refused to believe I had Crohn's, withheld all
treatment - treatment that had worked for 13 years - I had gross
colonic bleeding and the only way to save my life was to remove the
entire colon. The important lesson here is that if you have a doctor
who are not comfortable with find another. I was new to town, knew to
one, made an appointment with the doctor you had diagnosed me at
Hopkins but he was out of the country and wouldn't be back for 6 weeks.
While wiating for his return I continually called both my PCP and GI
doc who told me it was IBS and there was nothing to worry about.

REMEMBER
everyone with Crohn's of the colon (Crohn's colitis also called
GRANUMOLATOUS COLITIS) or UC who has had the disease for several years
must insist on a colonoscopy. For men have a PSA; women mammography and
complete GYN exam.  Have a full body check for melanoma. 

 Transplant
recipients - pre-transplant get a baseline colonoscopy, mammography,
skin check, Have a chest x-ray especially if you are a smoker or live
with one.

 

 

 

 

 

 

 

nidone which I only took on and off for

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by Mike42 on Tue Jan 22, 2008 12:00 AM

Quote | Reply

Well, I  hope my story does give you and Steve some hope.

I was diagnosed February 2004, Stage 4 colon cancer. I was 41 at the time with three boys ages 6-11. I also live in the Portland area (Beaverton). I had 3 legions on my liver which were confirmed mets. I had 7 months of chemo which reduced the mets in half and was in remission. In Nov. 2004 I had RFA to zap the remains of the mets and have been cancer free since. I was also given the 1 1/2- 2 years to live talk, but found a positive onc. and surgeon and am still here 4 years later!

If you or Steve need someone local to talk to, I can give you my e-mail address privately. Take care.

 Mike

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by googie on Wed Jan 23, 2008 12:00 AM

Quote | Reply
Mike,Thanks for your resonse. I am so happy for you and your family, sounds like things are going well! My husband was many lesions in the liver. The cancer has only spread to the liver but his has many. I guess we need to let the chemo work on the lesions and hopefully then do direct therapy to the liver or rfa. The doctor has discussed both options. Then maybe surgery, ( my goal). It is so hard to relax and wait. My husband works every day and feels great most of the time. Thank god. We both feel that we have a good doc and surgeon. I just most times feel so sad and scared that it is hard to get through some days. But your message really helped. Thanks. Sounds like your close to us we're in the garden home area. 

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by mardilove on Thu Feb 14, 2008 12:00 AM

Quote | Reply

Hi -

My husband was diagnosed with stage iv colon cancer that has matastasised to his liver this past November.  I think it was the day before or after his 57th birthday.  He's never been sick, healthy as could be.  Our local oncologist has given him 3 mos w/no chemo or up to 1-2 yrs with chemo.  Cut and dry, out the door the oncologist went.  No other suggestions.  Went to Mayo in MN, hubby stepped out of the office when the oncologist slipped the ct scan in of his liver and I stayed to find out the truth...face the facts, if you know what I mean...even though my husband couldn't at the time.  The oncologist said, "look, look at them, they're all over the place!".  I was shocked, even though I didn't really understand anything at that point.  I felt the oncologist was extrememly insensitive...I feel my local oncologist has no place practicing any longer...he should retire.  When a physician has lost the capacity to be "aware" and "progressive" it is time to loose them.  I have found through this journey that all the nurses get mad at me, don't want to talk to me and tell me I call too much at our local oncologist office.  I don't care.  This is my husband whom I adore.  I search the internet constantly looking at research...who is doing what...is there anyone who will treat him - my sweet husband who is considered "non-resectable".  I am his advocate and I will question everything. 

I have not posted here before, but I have been reading these posts since I found the site.  Someone had written about her parents...her father had the same as your husband and mine regarding the colon w/liver mets.  She said, not only was her father going through this-so was her mother.  I know this isn't exactly how she told her story, but this is what I heard when I read it.  She decided to be their advocate.  She went to all the doctor visits with them, took notes, created a 3 ring binder.  Developed the questions for the next visit to any docs.  Now her mother could be with her father more and he was happier.  Happier means we heal faster/better, I truly believe.

I wish you the best.  I have no advice, I only have a heart that is full of love for my husband...and you and yours.  I pray I have the strength to continue without completely loosing me in the process.  I find there are days I don't brush my teeth.  I pray I will find somewhere where there is a surgeon/or some doctor that is assertive and will take my husband's case on.  To say I am frightened out of my mind wouldn't be a lie.  To say I stay positive every day and have faith we will find what is needed...that isn't a lie either. 

There are so many like our husbands...life isn't fair, what can we do?  Get on with finding the cure and keep putting our energy into the fight!

Happy Valentine's Day to one and all

Blessings 

 

RE: stage 4 COLON CANCER AND CROHNS DISEASE

by Pennyjocelyn on Mon May 12, 2008 12:00 AM

Quote | Reply

Dear friend,

I just read your mail about the colon cancer that is affecting your husband. I feel for you and I know exactly what that feels like. My husband was diagnosed with colorectal cancer in September 2007.....it was a really traumatic time for us. He started Chemo towards the latter part of September and completed a cycle just before christmas. My husband had a scan and we got his results in January. It was then that we discovered that he had stage 4 cancer. He goes for check ups every 6 weeks since then and every 12 weeks he is supposed to have a scan. At the moment things seem to be under control. Sometimes i'm too afraid to ask questions... I can only say that it was the grace and favour of God and prayer that sustained us as a family and kept me sain during those difficult days. Also when people see my husband none of them believe that he is a man who is affected by cancer...he looks well. I just want to say that sometimes and some days you might feel like there is no light at the end of the tunnel....just never give up just keep praying and believing....

Thinking of you and remembering you and your family in my prayers.

Take care

Penny

If you want to contact me please feel free to do so at any time.

My email address is

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

Nobody knows what it feels like unless they are in it themselves. I want to encourage you to be bold and strong and just to keep the faith. Take one day at a time.

 

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