My husband just diagnosed with Stage 4 colon cancer....

gizzyluv · February 2013

tachilders said:
My advice is to make sure
My advice is to make sure that the surgeon talks to an oncologist prior to the surgery, as they may want a biopsy of the liver spot to determine if it is cancer. Also, if at all possible, get a second opinion from a surgeon and oncologist from a cancer center, and don't rely on the local hospital's surgeon and oncologist. You want to make sure that everything is done right with this first surgery, as it can impact your husband's health and prognosis going forward. I am 46 and have stage 4 with mets all over (liver, lung, peritoneal cavity, lymph nodes, etc...) and I had my initial surgery at the local hospital. Unfortunately, I had a significant blockage of the lower colon (sigmoid junction), so I didn't have time (and didn't know enough) to get a second opinion prior to the surgery. The plan was a laproscopic resection and reattachment of the colon, but apparently the local folks weren't very good at reading the CT scans, as once they got in there they were shocked to find the tumor was waaaaaay larger (and had mets everywhere) than expected and they couldn't remove any of it. In retrospect, I wish I had gotten a second opinion from a more experienced surgeon at a cancer center, as maybe they could have done something different. As it is, the put in a colostomy, and I am stuck with just chemo at this point to try and control my cancer. However, I am looking into other options. Your husband's case sounds much more promising than mine, and that spot on the liver may not even be cancer. Even if it is, a single met should hopefully lead to a good prognosis for him. As others have said, there are stage 4 folks on here that have been around 8 or more years, and are still going strong. Ask as many questions as you need to, ad do NOT be afraid to get second or even third opinions if you are not comfrotable with the info you are getting. Best of luck!!!

Tedd

Bless your heart....

Bless your heart, I'm so sorry you had to go through such an ordeal. Fortunately for Jason, the surgeon in charge is highly regarded in this area as being the best colorectal surgeon in the area. Thank you for sharing your experience (although I wish it had been better for you). I took care of my mother for almost 18 years, (she passed away in 2011), & during all that time one thing I learned is that the doctors do NOT have all the answers! She was diagnosed with end stage COPD in 1993 & at that time my sisters & I were told that we would be lucky to have her another 5 years & she lived almost 18 years! So, my point is....ANYTHING IS POSSIBLE WITH GOD!!!! Just because you had a bad experience in the beginning doesn't mean the future can't be much brighter! Just keep the faith & keep praying! That's whats keeping me going! Good luck my friend....Take care & God Bless, Kris

gizzyluv · February 2013

maglets said:
hello and welcome
well some of the survivors are lining up here to welcome you. I was diagnosed in 2005 with colon and since then have had 2 bouts with liver mets....still going strong and NED (no evidence of disease) for going on 4 years....hope hope and more hope lives here.

Phil is right....each doc will have a different approach....some like to do chemo to shrink things....some (mine) goes straight for surgery first and then after healing some chemo. Perhaps your doc will want to address the colon first and deal with the liver a little later.

This forum is a wonderful source of knowlege, experience and support. I hope you will stay in touch as you and your hubby begin this long journey....one single step at a time.

much love, maggie

Thank you

Thank you Maggie! I have been overwhelmed with the outpouring of love I've received here! I'm so glad I found this site! What you said sounds like what Jason's dr. is wanting to do....the colon first to get the tumor OUT!!!! ( I just want it OUT OF HIM!!!!! ) and then he's gonna decide what to do about the liver. From what he told me on the phone yesterday, the radiologist saw a "spot" on his liver....I was assuming he meant it was a cancerous "spot", but according to what I've read on here, maybe it's not cancer at all....in all probablility, it is, but maybe not....I can always hope.

I was crying last night & Jason came in & caught me (oops) but I explained to him I wasn't crying because I think he's going to die, I was crying because I know how much pain he is facing (I had colon resection surgery for diverticulitis in '08) & it just breaks my heart to think of him hurting so much.

Thank you again for making me feel so welcome here! I will keep everyone updated! Take care & God Bless, Kris

gizzyluv · February 2013

wawaju04976 said:
Don't look at the statistics.
Don't look at the statistics. One thing I found out is that many CRCs are diagnosed after fifty. If one of those people has a heart attack, he can be lumped into the CRCs statistics. Write down questions/concerns THE notebook. I also write down treatments I see in forums like this. You are your own best advocate (or your husband's). This place has been a lifesaver for me. I sat in the hospital after the surgeon told me no more than a couple of years. I was devastated, of course. It wasn't until I talked to my oncologist that I started feeling better.

Judy

Good advice!

That's certainly good advice for sure!....So, when were you diagnosed? If you don't mind sharing your story....? Thanks so much! Kris

herdizziness · February 2013

SSDI

Since your husband is unemployed and has stage IV colon cancer he needs to apply for social security immediately! For stage IV colon cancer, you are fast tracked, it took 28 days for me to be approved and I had my first check the next month. Please do this as soon as possible! Because Medicare takes a couple of years to kick in, and he needs to apply ASAP.

Winter Marie

gizzyluv · February 2013

herdizziness said:
SSDI
Since your husband is unemployed and has stage IV colon cancer he needs to apply for social security immediately! For stage IV colon cancer, you are fast tracked, it took 28 days for me to be approved and I had my first check the next month. Please do this as soon as possible! Because Medicare takes a couple of years to kick in, and he needs to apply ASAP.

Winter Marie

Thanks!

Thanks for the info! Did you apply online or did you have to go into the S.S. office?

gizzyluv · February 2013

gizzyluv said:
Thanks!
Thanks for the info! Did you apply online or did you have to go into the S.S. office?

Fever?

Hey all, I just thought of a question that hopefully you all can answer....Jason runs a fever sometimes, usually at night, does this or has it happened to any of you? If so, do you know why? Thanks! Kris

herdizziness · February 2013

gizzyluv said:
Thanks!
Thanks for the info! Did you apply online or did you have to go into the S.S. office?

You can apply on line

You can apply on line, I actually had the social services people help me do it, they got all the doctor's papers and filled everything out and I just signed on the dotted line.

You can also go in person and file. Just make sure you have all the doctor's dates, etc.

I think applying on line is pretty simple and straight forward and you don't have to wait in a line.

Winter Marie

Chelsea71 · February 2013

gizzyluv said:
Fever?
Hey all, I just thought of a question that hopefully you all can answer....Jason runs a fever sometimes, usually at night, does this or has it happened to any of you? If so, do you know why? Thanks! Kris

Hi and welcome. Is it a
Hi and welcome. Is it a fever or is it night sweats? If he is drenched in sweat during the night, it is night sweats. This is common with gastrointestinal cancers. It is also has other causes, for example, certain medications. If his temperature is just high, I'm not sure. Must mean he has an infection.

Good luck
Chelsea

gizzyluv · February 2013

herdizziness said:
You can apply on line
You can apply on line, I actually had the social services people help me do it, they got all the doctor's papers and filled everything out and I just signed on the dotted line.

You can also go in person and file. Just make sure you have all the doctor's dates, etc.

I think applying on line is pretty simple and straight forward and you don't have to wait in a line.

Winter Marie

Thanks so much!

Thanks so much for the help! I will certainly get right on this! Kris

gizzyluv · February 2013

Chelsea71 said:
Hi and welcome. Is it a
Hi and welcome. Is it a fever or is it night sweats? If he is drenched in sweat during the night, it is night sweats. This is common with gastrointestinal cancers. It is also has other causes, for example, certain medications. If his temperature is just high, I'm not sure. Must mean he has an infection.

Good luck
Chelsea

Hmmmm?

That's a good question....I know there have been a couple of times that his temp. was high (the last time it was 102.8 & I gave him Tylenol) but he also says he wakes up sometimes wet with sweat, but he has always thought he must have had a fever during the night....but, with this new information re: night sweats, that makes more sense. Thanks so much! Kris

wawaju04976 · February 2013

gizzyluv said:
Good advice!
That's certainly good advice for sure!....So, when were you diagnosed? If you don't mind sharing your story....? Thanks so much! Kris

My fiance had noticed a lump

My fiance had noticed a lump under his arm in October. It was biopsied at Melanoma Stage 4. He had 4 lumps on catscan and petscan. We met w/the oncologist the Friday before Thanksgiving. The next day we took my son to the airport. I was feeling alittle nauseous. On the way home, I had dry heaves. Got home and went to bed, got back up and went to hospital. I was now having pain in lower abdominal region. A catscan showed suspicious lesions on my liver. The uterus was a little enlarged. I was given meds, call primary physician. I called her when I got home. She referred me to an oncologist, with whom I met w/the day before Thanksgiving. Thanksgiving came, by Saturday I was in such pain I drove to the hospital. I was admitted. The following morning, they opened me up. I had an abscess near the bottom of my anus, but they didn't know this because there was so much inflammation and infection. While they were in there, they biopsied my liver. They did a colostomy so the infection could settle and they could see what was there. That was Sunday. By Wednesday I was told the cancer in my liver was rectal cancer. I had surgery that Friday to remove the abscess. The surgeon went up my rectum (as far as he could because of colostomy). Rectum looked good. He then said it was colon cancer. I asked if there was a cure, told no and probably no more than 3 years. I was by myself when he told me this; he called my fiance who came right over. I made the mistake of looking up info on the internet. 2-3% live to five years, etc. Then I learned to google in a more positive way...long-term survivors of stage 4 colon cancer, etc. Things started to brighten up. So, onto the oncologist. After my second TX, I said I wanted a colonoscpy. Well, 1 flat polyp was found. That was biopsied, as well as the fistula where the abscess was. Pictures showed a nice, pink colon. Come back in ten years, I am told. So, I have colon cancer in liver (that is what the biopsy showed), nothing in my colon. But, the tx is working on the liver, so I am pleased. While I was in the hospital, my fiance started on an alternative...vitae elixxir. I call it the purple potion. I was not impressed, until I found out two people at work were at death's door (one w/stage 4 melanoma, chemo tx but the cancer kept returning; he stopped tx, went home, and someone told him about this;he tried it, scans are clean and have been for nine years; another was a woman w/breast cancer that spread to neck area...she did chemo bcuz her family wanted her to, but then stopped...started purple potion and is cancer free). When my fiance went to our oncologist, he was given his plan for chemo. The second visit, doctor says lumps have shrunk a bit (this is before he started his chemo). We joked, saying it was the "purple potion." He went and felt my liver...shrinking, scan showed reduction in tumors, one not showing. I have been doing "purple potion" for a little over a month. We decided not to put all our eggs in one basket. Anyway, that is what we are doing. My fiance started his chemo a few weeks ago. Stressful, yes. We both have stage four cancers (our oncologist just looks at us and shakes his head, as he has never seen this before...both dx with in a week of each other). I had nooooooooo symptoms...my liver functions were fine. Now, my blood work shows my liver functions are better than they were before we started, and my blood looks great. I have had four tx of folfox/avistan. I will have number five Friday.

Please remember...so many people on this site have been told they have weeks/months to live. But, second/third...opinions have changed those scenerios. Remember you and your husband are your his own advocates. It sounds good if there is only one spot on his liver, and you don't even know if the spot is cancerous. Hang in there; this forum has been a lifesaver for me!!!

Judy

gizzyluv · February 2013

wawaju04976 said:
My fiance had noticed a lump
My fiance had noticed a lump under his arm in October. It was biopsied at Melanoma Stage 4. He had 4 lumps on catscan and petscan. We met w/the oncologist the Friday before Thanksgiving. The next day we took my son to the airport. I was feeling alittle nauseous. On the way home, I had dry heaves. Got home and went to bed, got back up and went to hospital. I was now having pain in lower abdominal region. A catscan showed suspicious lesions on my liver. The uterus was a little enlarged. I was given meds, call primary physician. I called her when I got home. She referred me to an oncologist, with whom I met w/the day before Thanksgiving. Thanksgiving came, by Saturday I was in such pain I drove to the hospital. I was admitted. The following morning, they opened me up. I had an abscess near the bottom of my anus, but they didn't know this because there was so much inflammation and infection. While they were in there, they biopsied my liver. They did a colostomy so the infection could settle and they could see what was there. That was Sunday. By Wednesday I was told the cancer in my liver was rectal cancer. I had surgery that Friday to remove the abscess. The surgeon went up my rectum (as far as he could because of colostomy). Rectum looked good. He then said it was colon cancer. I asked if there was a cure, told no and probably no more than 3 years. I was by myself when he told me this; he called my fiance who came right over. I made the mistake of looking up info on the internet. 2-3% live to five years, etc. Then I learned to google in a more positive way...long-term survivors of stage 4 colon cancer, etc. Things started to brighten up. So, onto the oncologist. After my second TX, I said I wanted a colonoscpy. Well, 1 flat polyp was found. That was biopsied, as well as the fistula where the abscess was. Pictures showed a nice, pink colon. Come back in ten years, I am told. So, I have colon cancer in liver (that is what the biopsy showed), nothing in my colon. But, the tx is working on the liver, so I am pleased. While I was in the hospital, my fiance started on an alternative...vitae elixxir. I call it the purple potion. I was not impressed, until I found out two people at work were at death's door (one w/stage 4 melanoma, chemo tx but the cancer kept returning; he stopped tx, went home, and someone told him about this;he tried it, scans are clean and have been for nine years; another was a woman w/breast cancer that spread to neck area...she did chemo bcuz her family wanted her to, but then stopped...started purple potion and is cancer free). When my fiance went to our oncologist, he was given his plan for chemo. The second visit, doctor says lumps have shrunk a bit (this is before he started his chemo). We joked, saying it was the "purple potion." He went and felt my liver...shrinking, scan showed reduction in tumors, one not showing. I have been doing "purple potion" for a little over a month. We decided not to put all our eggs in one basket. Anyway, that is what we are doing. My fiance started his chemo a few weeks ago. Stressful, yes. We both have stage four cancers (our oncologist just looks at us and shakes his head, as he has never seen this before...both dx with in a week of each other). I had nooooooooo symptoms...my liver functions were fine. Now, my blood work shows my liver functions are better than they were before we started, and my blood looks great. I have had four tx of folfox/avistan. I will have number five Friday.

Please remember...so many people on this site have been told they have weeks/months to live. But, second/third...opinions have changed those scenerios. Remember you and your husband are your his own advocates. It sounds good if there is only one spot on his liver, and you don't even know if the spot is cancerous. Hang in there; this forum has been a lifesaver for me!!!

Judy

Alrighty then....

I've gotta know....what is this "Purple Potion" you're talking about?! I want to get my hands on it, whatever it is! Gosh, I'm so glad I found this site, these stories are what's keeping me sane, no joke. Thank you so very much! Kris

wawaju04976 · February 2013

gizzyluv said:
Alrighty then....
I've gotta know....what is this "Purple Potion" you're talking about?! I want to get my hands on it, whatever it is! Gosh, I'm so glad I found this site, these stories are what's keeping me sane, no joke. Thank you so very much! Kris

Google Vitae Elixxir. You

Google Vitae Elixxir. You will read about it being good, and you will read about it being quackery. I thought the latter until I found some real people.

Judy

gizzyluv · February 2013

wawaju04976 said:
Google Vitae Elixxir. You
Google Vitae Elixxir. You will read about it being good, and you will read about it being quackery. I thought the latter until I found some real people.

Judy

I read up on it.....

Hey Judy, I googled that & it looks promising....I'm gonna look more into it. The site I looked at had it for $150.00....is it that expensive everywhere? Not that it wouldn't be WELL worth that, but we just don't have it right now. I'm sure we can get it though. Thanks so much! Kris

hippiechicks · February 2013

Hi Kris, sorry to hear about

Hi Kris, sorry to hear about Jason. It sounds as though you have a great surgeon and that is important. He will be in good hands. Hands that may very well save his life. So yes, trust your doctors and get as many opinions as you need.

I also experienced terrible night sweats before my tumor was removed. I also had high blood pressure and migraines. All went away when the tumor was removed. I also was experiencing emotional ups and downs prior to dianosis. Thought I was getting burnt out at my job, patience wearing thin. All changed after I had the tumor removed. I was also told I had a spot on my liver that turned out to be nothing more than a spot on my liver that lots and lots of people have. So, please try not to panic about that until you get more positive results.

The day I was diagnosed stage IV, Social Services came to my hospital room and told me if I would like to file to SSDI they would help me and it would be approved immediately. It would be a good idea as Jason is going to travel a long road and will need to be under as little outside stress as possible. Financial stuff can really create havic in the stress area. Your hospital may also be able to help with financial assistance for tests and treatments. There are often programs which can be explored through the social service dept at the hospital.

All the best to you and Jason...prayers are with you.

khl8 · February 2013

gizzyluv said:
Oh wow!
You have no idea how much better hearing this from you makes me feel! Or maybe you do know.... All we know right now is the cancer is Stage 4 with 1 spot on his liver. The dr. is planning on doing the colon surgery first, then according to where the spot is on his liver he will decide the treatment for that at that time. This is all just SO much to take in! He had been having digestive issues for almost 2 years, but with no insurance (and STILL no insurance! ) we just couldn't afford for him to have the colonoscopy done, but we finally saved up enough money to have the colonoscopy done & I'm so glad we did.....it was almost too late. I don't know what we're gonna do about the hospital & doctor bills, but money is the last thing I'm worried about right now. My sister has started an online fundraiser, which I didn't even know existed, but we've been so blessed by people giving whatever they could afford. It all adds up. He lost his job in 2008 & has since just been doing odd jobs to bring money in, but even that has stopped within the last few months. He just hasn't felt like doing much of anything, & my job went from full time to barely part time, & now I'm not even working part time so it's gonna be a ROUGH road, but I'll be there by his side to ride it out! The lord always provides.....

THANK YOU so much again for sharing your story! I will be sure to let Jason read it as well. I'm so glad I found this site, maybe this way I won't end up going completely insane. lol Take care & God Bless! Kris

Stage 4 Cancer patients can

Stage 4 Cancer patients can apply for disabilty and are "rushed" through the system. I am not sure what state you are in but start looking online and see if you need to find an attorney. The social worker at the cancer center may be able to provide more information.

wawaju04976 · February 2013

gizzyluv said:
I read up on it.....
Hey Judy, I googled that & it looks promising....I'm gonna look more into it. The site I looked at had it for $150.00....is it that expensive everywhere? Not that it wouldn't be WELL worth that, but we just don't have it right now. I'm sure we can get it though. Thanks so much! Kris

It is, but one bottle would

It is, but one bottle would last you at least 3-6 months.

sailor_on_a_lee_shore · February 2013

Hi Kris,
I am sorry about

Hi Kris,

I am sorry about Jason's dx and the rough road you have already experienced and what you are facing. I myself was dxed in June 2012 with Stage IV Colon Cancer. To date, I have undergone:

1. A hemicolectomy in which almost all of my transverse colon along with a 5cm tumor were removed

2. The pathology report indicated two of 14 removed lymph nodes had cancer as did the section of removed omentum (the ones in omentum were microscopic)

3. A 12-round cycle of chemotherapy using Leucovorin, Oxaliplatin, Avastin and 5FU

4. A five-round course of stereotactic radiation to treat a single ileac lymph node that appeared metastatic

5. Currently, I'm receiving a biweekly IV treatment of Avastin along with a cycle of Xeloda 1000mg twice a day for two weeks followed by one week break then repeated.

However, that is not why I'm writing. I urge you to apply for SSDI benefits as soon as possible, especilly if your husband is not working. With diagnosis of Stage IV Colon Cancer with metastasis to his liver your husband qualifies under the Compassionate Allowance provisions for those with a variety of debilitating diseases such as Stage IV Colon Cancer. You can read more about it here: http://www.socialsecurity.gov/compassionateallowances/. When you start looking for information regarding Colon Cancer use the term Large Intestine Cancer , which is how SSA refers to Colon Cancer. The Compassionate Allowance program essentially predetermines that people with the diseases on the list are eligible for SSDI and expedites their approval as long as you meet the criteria for the particular diagnosis.

In addition and since your husband does not have health insurance here is some information regarding Medicare and SSDI http://www.ssa.gov/dibplan/dapproval4.htm. Typically, you have to be on SSDI for two years to qualify for Medicare, however, I UNDERSTAND you MAY be able to apply for Medicare since you have no other health insurance once SSDI is approved.

You can apply online, which is what I did, from this link: http://www.ssa.gov/disability/ which also has numerous links to additional facts about SSDI.

Please contact me if I can be of any further help. By the way, my name is Rick. I was feeling a bit melancholy when I registered for this site, hence the long name.

Withing you and Jason "fair winds and following seas."

Rick

sailor_on_a_lee_shore · February 2013