First time here. Hello everyone

welcome

Hi. welcome to the group.

I'm a patient (also Stage IV) and not a caregiver.  This is all happening so fast. I totally understand.  You both will have a lot to absorb.

You might need to shop around for second opinions.  Find a doctor who will spend time with you explaining the nature of his disease, his prognosis, and the best treatment.  Make sure you have a doctor who is thorough and tests for everything possible. Certain tumors have mutations which affect treatment - KRAS is important to test for.  Nurses are good too.  The doctor has the ultimate say, but often it's the nurses who spend time explaining the details to patients and answering questions. A good oncology nurse is a plus. I'd recommend making sure that your doctor's practice has an open line of communication, whether that is to the doctor directly or to the oncology nurse.  I can email my nurse anytime and she responds within a day or less - this is reassuring. She's awesome. 

Your husband will have to decide how he wants to balance quality of life with treatment.  That's important to factor in, too. We all want to do what we can to live, of course.  

good luck - 

Karin

 

A sad but sincere welcome

I am a recent entrant to this community as well, both this forum as well as the broader community who have a loved one with colon cancer. For me, it's my mom. She is 57, and I'm 28. She's also stage IV, but her mets are in her liver and lungs. She's in a lot of pain, but we are hoping that she will be able to get surgery soon to alleviate a lot of that.

The big stamp of stage IV cancer is pretty terrifying all by itself, but seeing your loved one in pain is one of the hardest parts. Do you know what region of the colon the tumor is in? How large is it? My mom went through a pretty aggressive regimen of simultaneous chemo and radiation for about 6 weeks, and that seems to have helped a lot. You should ask the doctor about your husband's CEA level. This is an important cancer marker in the blood (it's an antigen) and since your husband's cancer has spread, it may initially be pretty high. My mom had a CEA of 2600 back in February, but after her treatments it's down to 200. Still bad and a problem, of course, but a MASSIVE improvement, it really shows that the treatments worked a lot to shrink the tumors. We'll know more about that (which ones and how much) after she goes for a cat scan on Monday.

Your questions would depend most on what your husband's physical symptoms are right now. Is he in pain? Does he have diarrhea or blood with his bowel movements? How often does he go to the bathroom? The doctors can tell you the right foods as well as prescribe the appropriate levels of painkillers based on his current pain levels. Is he able to eat? Keeping hydrated and making sure his salt levels remain healthy (potassium and sodium) is crucial. My mom's got pretty low in the beginning, and that was a brief scary period.

If you are comfortable sharing, what city/state do you live in? We are fortunate because my parents live in New York, so there are a number of excellent cancer care centers here. My mom has really been sticking to one, though I'm trying to encourage her to get second opinions. That's a really important element of getting the best possible care. If the doctors your husband sees make suggestions or give opinions that you're not happy with, seeing another doctor can be helpful. I'm not sure how to advise you on the tumors for where his cancer has spread, the lymph nodes, spleen and bones, so checking the other discussion forums on this website for those focus areas could be more helpful there.

I really wish the very best for you and your family. There are some surprise success stories out there, and I hope that your husband will prove to be one of them. By coming here, you're already helping him because of all the expertise you'll find (a lot of doctors and people who've studied and read up on the issues, in addition to people like me just learning from experience). You've come to the right place for support and advice, and I hope the information you find here will be helpful for your husband's health and treatment.

adrianchud said:

First of all I just want to

First of all I just want to thank everyone.  Your responses are calming my nerves at least for the moment.  

To give a little more info,  his tumor is in the lower part of the colon  originally our surgeon told us that it was in a good spot for removal,  we are currently working with a surgeon who ordered the PET scan after the cat scan showed spots on his spleen and lung.  The lungs turned out to be okay according to the surgeon.  He has now referred us to an oncologist  They are both out of the University of Penn in Philadelphia.  We found them after alot of research on where to go to get the best cancer treatment after our initial biopsy of the tumor came back cancerous. 

So far I really like our surgeon.  He called me yesterday (saturday) just to check in and see how we were holding up after pretty much getting a bomb dropped on us on Friday. i apologize if I sound ignorant but the truth is I am.  I feel like there is so much to learn and I don't know alot of terminology and stuff like that.  Right now I'm very hung up on the Stage 4 thing.  My husband doesn't even know that detail because I asked the doctor what stage it was in private. 

I feel like Jack, thats my husband, isn't understanding how serious this is.  He is a workaholic and hes still very concerned about missing work and things like that.  He just keeps saying that he wants to get whatever treatment he needs and get back to living his life as soon as possible.  I'm not sure how to handle that

Adrian -

 

 

Re:

“Right now I'm very hung up on the Stage 4 thing.  My husband doesn't even know that detail because I asked the doctor what stage it was in private.” 

 

“I feel like Jack, thats my husband, isn't understanding how serious this is.“

 

How can he, when no-one’s telling him?

 

In 2006, I came into the ER and was assigned a surgeon.

 

In 2011 I had some time to locate a surgeon, and did what you did. The surgeon was highly rated, was the chief of staff at the hospital, taught laparoscopic surgery, was experienced with intestinal surgery, etc.

 

That surgeon made the biggest mess of my insides. He left ½ of my small intestines inside to die, rotting away for almost two years…..

 

My third surgeon in 2013 repaired it all, removing the mess and resolving everything that was wrong.

 

Bedside manner or a physician’s web information, or his degrees, do not make him a great physician.

 

Even if you love that surgeon, your husband deserves to have other qualified opinions. Denying him the truth, or the benefit of other surgeons objectivity, is not helping him. As a caregiver, your only job is to keep your patient as informed as you can. His care is his decision to make, and only his. He won’t be able to make an informed decision if he isn’t fully informed.

 

My best to him and you,

 

John

 

finding the unicorn

My wife was diagnosed with colon cancer in a similarly spread situation three years ago. She had metastatic mesenteric fat seeding the peritoneum, lung thingies, massive distant lymph nodes and was obstructing.  Perhaps, even probably, liver mets too.  But there were lots of confusions and varied interests at play.

I was aware of extra "scientific first aid" options for CC since I had lost a parent to colon cancer decades before and had older friends that had exercised part of these regimens for other cancers  too. 

First thing, I had her get on 1600 mg of cimetidine,  17,000 iu vitamin D3,  600 mg coQ10, 400 mcg selenium, B100 complexes, ca 300 mg vitamin B6, nicianamide, 45 mg of menaquinone4 (a special, human K2 in NBI Osteo K), as much vitamin C as she would swallow ca 8-15 grams across the day, 900 mg of lipoic acid, and some other of the LEF recommendations.  4 weeks later she had surgery, the surgeon prescribed Celebrex for 1-2 weeks. Serum blood tests, for vitamin D, hsCRP, CA19-9 and CA72-4 at diagnosis, or before surgery, may be important as the CEA.

We got her surgery on as much as the surgeon could see.  He didn't get all of it by a long shot and was initially worried, but we had stopped the metastatic process with all the extra chemistry and had killed a lot of it before even he operated.    After surgery, she added IV vitamin C every day for three weeks, then tapering down 5, 4, 3, 2 times per week and added more of the LEF recommended ingredients and low dose daily chemo since then  

Hopefully you can find a more aggressive surgeon, all this is important.  My wife is never chemo/cancer sick, feels well and even better than before (no bone pain/back problems anymore), her unresected lesions have shrunk, calcified or disappeared. We got a good first shot in, despite having to overcome over many superstitions and presumed authority.  It can and has been done successfully, and affordably.  Two songs, feelings I have experienced, going over the top as a caregiver.

You are fortunate to even see these options early on when the immunotherapies with cimetidine count much, much more. Most do not until well after. 

 

 

Hi and welcome. I really
Hi and welcome. I really don't know what to say. 35 is so young. You must feel so overwhelmed. My husband was diagnosed with stage four two years ago. He is currently on chemo and hoping for surgery. Despite being on chemo, he lives a full and active life.

My advice would be to take each day as it comes. Just get through each day. Don't look too far ahead. Accept lots of help from family and friends. Don't try and do it all yourself. I would recommend you go to a large cancer center, if possible. MD Anderson, Cancer Treatment Centers of America, Sloan/Ketterling etc.... Find the best oncologist and surgeons possible. As for the bones, you may want a biopsy. Jen2012, I'm sure will tell you about that. Sometimes bones look suspicious for cancerous lesions but often it's due to injuries etc. Pet scans aren't perfect. They often pick up on things that turn out to be nothing.

You will get a lot of good advice here. Many folks have been living with stage four cancer for years.

Chelsea

So sorry you have to join us

on this journey but glad you found this great board. You will find much of wisdom and support here as I did when my husband was diagnosed stage 4 (mets to liver) back in Nov 2011, aged 43 then. I remember this terrible first weeks when we we were overwhelmed by all this new bad news and this strange medical stuff. It's totally ok to be scared and to tremble. It takes some time to adjust and (I didn't believe it but it's true) it will get easier after some time. Take one day at a time, get informed and ask all questions you have in mind - aks the doctors, ask us. And if you are not sure with your husbands doctors go for a second or even third opinion. And try not to think too far ahead that only makes your head swirl and does not really help.

A hug from Cologne, Germany

Petra

 

 

 

I am sure you are completely overwhelmed......

You have come to the right place for support, information, and personal experiences. I was diagnosed in Nov. 20111, with stage IV colon cancer with mets to liver(gone for now!) and lungs. I have been through surgery, chemo, liver resection, SIRT, SRBT radiation, and still on chemo. There have been ups and downs in the past 18 months but I am am still enjoying and apppreciating life. As a mom of 5 and grandma to 3 adorable grandchildren I understand.... Remember children handle things as well as the parents do.....no matter what their age. Try and keep some normalcy, although you now have a new normal. I have 5 children, 15 years apart, so when I was diagnosed my youngest son was a sophomore in HS, and the oldest had just had his third child, last year two graduated from college and my second son got married. Life is good! My advice would be to take things step by step and sometimes they will be baby steps  and at times you may take a step backwards. Keep a notebook with all information. I also put suggestions and information from this board in my notebook that I may want to ask my doctor about. I hope we can help you through this journey....any questions, please feel free to ask....thinking of you and your  precious family. ~Ann

jen2012 said:

Hi Adrian,
Yes, he continued

Hi Adrian,

Yes, he continued to work through treatment.  He went for chemo every other friday - August - March.   He's on break now as he waits for surgery.  On his chemo weeks, he'd leave work around 4 on thursday for blood work, then take friday off for the treatment - since it was such a long day!   He did pretty well through chemo - a bit tired and the neuropathy got worse as time went on and that's his biggest complaint now.  But he did okay and is happy to deal with the neuropathy if it means no cancer.   Feel free to send me a message if you ever want to have a non-public rant.  I know how overwhelming things are.  It's good that you have the kids to distract you from some of it, at the same time it's so hard because you are on edge and they demand so much of your time and attention.  Life sure can change quickly huh?

OT-glutamine?

Just wondering if they have your husband on this, Jen?  It's supposed to really help with neuropathy.  It was standard tx at my cancer clinic when you did chemo, but I think it can also help after you finish tx.  AA

 

annalexandria said:

You've gotten a lot of good advice here,

so I will just add my welcome.  This may be the most difficult challenge you and your DH will ever have to face.  It certainly was for me, and for my husband as my caregiver.  Having children still at home (we have three) just makes things that much more complicated.  A cancer diagnosis is terrifying and overwhelming, but as difficult as it may be to believe, things will start to improve.  The first few weeks are by far the worst of the journey, imo...after you get a plan in place, and start working on getting back to good health, most people start to feel better (at least emotionally).  Please feel free to ask us any questions, and tell your DH that we are here for both of you.  Sending hugs and strength your way~Ann Alexandria

PS There are a fair number of people on this forum with stage 4 cancer who are still going strong.  I myself have been in remission for 15 months, after having three recurrences and considerable spreading of the cancer.  So don't lose hope!

Welcome

I am also new here to the site as my mom was diagnosed with stage 4 colon cancer in Feb 2013.  I know the feeling of that initial shock.  The first thing the surgeon told me when they believed it was stage 4 colon cancer (this is before we knew for sure) is to take things one day at a time, and this has been working for me.

My mom is only 56 (not quite as long as your husband but young at heart!! lol) and is my best friend, so I completely understand what you are feeling right now.