Wife 31 newly diagnosed with Stage IV

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

My wife was just diagnosed with stage IV colon cancer, metastasized to the liver. We've had a number of tests including MRI and CT scan along with CT guided biopsy. We are looking for an oncologists and have appointments setup for next week. She is only 31 years old and we have two small children (3 and 1yrs). No family history, she eats well, works out, is not overweight, has had no symptoms. Her liver is enlarged with at least 6 large lesions. That's how we discovered it. How can this be happening to her???

I am scouring the web for information and finding only stage IV stories of sufferers over 50. I'm also horrified with the 5 year survival rate ( <8% ). I'm hoping someone can set my mind at ease as we wait for oncology consultation. With new targeted treatments the survival rate must be getting better. I am terrified the oncologist will tell us it's inoperable or that it has spread elsewhere. What determines whether it's inoperable or not???

I've heard Anastin is getting good results with this sort of thing, should we request that???

What is the process? What should we expect? Should I quit my job? I refuse to let this beat us, we have a strong marriage and everything was better than perfect until 3 weeks ago when this arrived on our doorstep.

Would love to hear from a friendly voice just to gain some hope out of this mess. Please reply to the group or in private.

thanks for reading,
-fs

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

I am a stage IV colon cancer survivor. I was diagnosed on my 43rd birthday. The orginal doctors gave me 1 day to 18 months tops to live. Through the internet, I have met several young colon cancer Stage IV survivors. The doctors told me that with the size and spread of mine, my cancer probably started when I was 16 years old. My Mom is Japanese so I ate well, and I joined the Army so was quite fit. Unfortunately, some of us are unlucky.

I did a lot of research and found doctors that would work with me. US News and world report ranks the top hospitals every year. Here is there web site.

http://www.usnews.com/usnews/health/best-hospitals/tophosp.htm

I chose to go to the University of Minnesota. Dr. Edward Greeno is my oncologist and he is fabulous.

I also bought a lot of books. The books that helped me the most were

What Your Doctor May Not Tell You about Colorectal Cancer: New Tests, New Treatments, New Hope
Mark Bennett Pochapin

And American Cancer Society's Complete Guide to Colorectal Cancer
Bernard Levin (Editor), American Cancer Society Staff, Terri B. Ades, Durado Brooks, Christopher Crane

I'll send you a seperate e-mail of all the questions I asked my doctor. Some may not apply. But I'll send it seperate because it does hog a lot of space

I always took a tape recorder with me, and recorded all the conversations.

Another site I like is http://www.blochcancer.org/ Click on patient info and start by reading fighting cancer.

Since your wife has it, everyone in her family will need to get a colonoscopy. Your kids will probably need their first colonoscopy around 15 or 18. But I'm sure the doctor has talked to you about that and about genetic testing.

Good luck and keep us posted. Let us know if you have any questions.

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

I've kept a roster of questions I've asked. You certainly don't have to ask all of these. Some are more philathropic. I did not include other curious questions I had, or questions from others about their cancers, that I asked him about.

Questions to ask when you first find out and before surgery.

Will I have PET scan?

A CT scan?

A PET/CT scan?

Will I need to have an ekg done?

Will an angiography be done?

Will an anorectal ultrasound or endoscopic ultrasound be used.

Will I have an anesthesia interview?

Things that are good to know before surgery

It may be helpful to wash with an antibacteriol soap 1 week prior to surgery.

What is my CEA? (That gives you an indication of colon cancer in your blood. You may not have the test if your not testing for colon cancer)

In either case, when would my liver be operated on?

Will I be in the hospital between my colon and liver surgery?

Why do I need this surgery?

What will happen if I don't have it done?

What are the alternatives to surgery?

What are the risks of the surgery in the hands of a skilled practitioner?

What if they aren't skilled?

Is there an alternative or newer way to perform the surgery that offers different pros and cons?

If so, which method will you use and why?

Any minimally invasive options?

Are those better?

Will the benefits be permanent?

How long is permanent?

Besides here, where is the best place to have this done?

How many of these surgeries do you do a year?

How many does this hospital do a year?

How long will I be in the hospital?

Is it possible to do this on an outpatient basis, and is so, would that be the best scenerio?

Can this be done under local anesthesia instead of general?

How do your results in this operation compare with those of other surgeons?

What kinds of complications do your patient's most frequently experience from this surgery?

What should I do and not do immediately before and after surgery?
Find out about food, alcohol, medications, triathalons and other activities.

Is the operation painful?

How much pain will I be in after surgery?

What painkillers will I be given during and after surgery?

(Get the drugs now and look them up, look up the side effects so you'll know what to look for, while you are still well)

How long will I be laid up after this surgery?

How soon will I be able to drive?

What kind of scar will I have?

How long will it take to heal?

Is there anything I can do to minimize scaring?

How much time off from work will I need?

Will I need physical therapy?

For how long?

Will I see a Dietician?

What complications should I be on the lookout for after surgery and what should
I do if they occur?

Who should I call after my surgery if I have questions or if I experience something unexpected?

How long will I be in pain?

Where will my scar be? Will the scar go away, or what can I do to help minimize scarring?

What symptoms or problems should I report right away?

What are the short term side effects?

What are the long term side effects?

If I don’t feel sick, does that mean my treatment is not working?

Are the survival rates better for people if it’s in the blood and not in the lymph nodes?

How long will I experience side effects after the surgery?

How will you check to see if the treatment is working?

What should I eat after the surgery?

What type of exercises can I do, and when can I start?

What does my blood look like? (I always get a copy of my blood test and chart it along with my CEA)

What about my liver enzymes?

How many lymph nodes were taken out?

How many were positive?

What was my grade of Tumor?

When will I be done with chemo?

How long will the recovery take after each surgery?

Would taking Avastin help me?

Would taking an aspirin a day help me?

Why do some people get radiation therapy?

Would chewing gum be helpful?

Would walking be helpful?

What are the chances of the cancer come back?

How often will you see me and for how long?

What kind of ongoing health needs will I have?

Are there long term side effects of the treatment or disease that may occur?

How often do they occur? When are they likely to occur?

When do I start remission?

Is there any harm to my veins from the IV’s? I get bruises from them?

Can I see my CT scan? Can I get a copy?

Can I see my MRI? Can I get a copy?

Can I see my PET scan? Can I get a copy?

Can you see if I have heart disease or any other disorder?

How are my arteries? Or should I have a cardiologist look at this for heart disease?

What does a PET scan do?

How is a PET scan better than a CT scan?

What will the long term effects of getting CT scans or Pet scans be?

What about MRI’s?

Would you recommend getting a whole body CT scan? How often?

Would you recommend getting a whole body PET scan? How often?

What types of tests do you get to ensure you’re in good health?

What magazines, journals or websites do you read to keep up to date on cancer or health in general?

Are their any books you’d recommend?

Do you think it is odd that I only had # lymph node affected?

Are my chances for survival better since it only affected this many?

Will I have future bladder, bowel problems with age?

Whom would you recommend to Mayo?

Whom would you recommend to M.D. Anderson Cancer Center?

What other hospitals would you recommend?

Have you had a colonoscopy?

Where did you go? Who did you go see?

What are the chances that cancer spread during surgery?

What do I need to prepare for surgery?

When should my blood return to normal?

Anything I can do to speed it up?

What is your political affiliation?

Your religious denomination?

Are you for or against stem cell research?

What part of your job do you enjoy the most?

What part do you enjoy the least? (It's good to know this, because if he's bad
at counting how many chemo sessions you've had, you'll know that is what he'll need the most help in).

If you had surgery, what would you be most concerned about?

What would you make sure was in place or that was done to you?

Besides the Dr.’s credentials, what else would you look for?

What would you do to prepare yourself?

What types of surgeries have you had?

Who was your Doctor? (And share the names with me. That's how we can network and find out the good Dr.'s that other Dr.'s go to)

How did you pick that Doctor?

Do you take any vitamins or any stuff to keep you healthy?

Do you think there are any natural vitamins to keep you healthy?

If more lymph nodes were affected, would there be a greater chance of recurrence?

Have any outcomes surprised you?

Am I more susceptible to blood clots?

Is your chance of getting any cancer greater if you have a family history of cancer?

Does nuking things in plastic in the microwave cause cancer?

What about using saran wrap?

What about Teflon?

What types of cooking pans do you use at home?

What other untrue rumors are there about cancer?

How much time, after surgery, is too late for chemo to be effective?

These are questions to ask if you're having a test. Later if you're having surgery.

What does this test measure?

Why do I need it?

What could happen if I don't have the test?

Are there any alternatives to the test?

How accurate is the test?

How frequently does this test return false positives and false negatives?

How is the test performed?

What kind of pain or discomfort is involved?

What can go wrong?

How should I prepare for the test?

How will I feel after the test?

Can I return to work immediately?

When will I get the result?

Which lab is processing the test, and why did you choose that one?

(Check to see if the lab is accredited by the Joint commission at www.jcaho.org
or by the College of American Pathologists at www.cap.org)

What's the ideal result that I want to get on this test?

After taking the test and getting the results, what's the next step?

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

>I am scouring the web for information and finding only stage IV stories of sufferers over 50.

The youngest one I've heard of was 9 months old.

>I'm also horrified with the 5 year survival rate ( <8% ).

Wait until you talk to an oncologist. My odds went up to 30% once my good surgeon doctors could see that they could cut out all of my cancer. And remember, that is an overall number. For everyone, you'll either make it with 100% or you won't. Honestly, I have no complaints about any of it. I came through quite well. I've known others who have had a lot of problems.

Now, after chemo a colon and liver resection, I'm up to like 70 or 80% chance of survival.

>What determines whether it's inoperable or not???
You'll need to talk to your surgeon. In my case, my cancer was in my sigmoid colon and was easily cutoutable. I was lucky that my mets in my liver were on the right side of my liver, and they cut out my liver from the falsiform ligament. However, you can have liver in both lobes and still get it cut out.

>I've heard Anastin is getting good results with this sort of thing, should we request that???
Ask your doctor about it. I was told I was not sick enough yet to go on Avasitn.

>What is the process? What should we expect? Should I quit my job?
Everyone is different. I chose to go on a stage II clinical trial. It might even be a stage III trial now. I was diagnosed on July 22, 2003. I had my colon resected on August 13, 2003. I was in the hospital about 4 days. I got up and walked the day after surgery. Walking and chewing gum helps speed up digestion.

It was important that I heal well so that they could do my liver resection and insert an HAI pump to direct chemo directly into my liver. Here is a web site for that.

http://www.medtronic.com/neuro/hai/physician/overview.html

Here is a web site about the trial.

http://www.mskcc.org/mskcc/html/63980.cfm

I used Irinotecan with FUDR put into my pump.

My husband only took time off for my appointments, for my surgeries and for the first time I did anything ie chemo. It all turned out to be uneventful with the exception of my liver surgery. I was in the hospital about 3 weeks for that. But some people are only in for about a week. Having had two major surgeries, I guess being in so long wasn't so bad. I live in Missouri and I went to the Univeristy of MN. I drove 16 hours round trip for my chemo, which meant I had to work 50 hours a week to make up for my time lost. I never lost much energy and the only major side effect was I lost my hair. But it grew back while I was on chemo, and it's now past my shoulders.

The good thing about being far away from friends is, I didn't catch any of their germs and caught my first cold after finding out I had cancer in March of 2007. To me, it was important not to add extra stress on my body with other people's germs. I made people wash their hands or use antibacterial stuff if they insisted on hugging me.

So far I have no evidence of disease. Let us know how we can help. Listen to your doctor, do a lot of research, ask questions on the boards but know that I am a patient and have no medical knowledge. I just know what worked for me.

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

CPTMAC: That's wonderful. Thanks for the information. You've been very helpful.

I have some small questions that you might be able to clarify for me:

a) My wife is fasting and drinking some "yellow stuff" in preparation for a colonoscopy tomorrow. How long does it take to get the results of that? Will we be told immediately or is there lab-analysis involved. I'm guessing it's immediate.

b) Am I to understand that you kept your job and were able to work 50 hours a week whilst going through this??? that is amazing. Please confirm that my understanding is correct.

c) We are meeting with a number of oncologists this and next week. From
1) Sloan Kettering
2) Robert Wood Johnson (cancer institute of NJ)
3) Local hospital
I have heard good things about them all. Here's the dilemma: I have also heard that the protocols they will use are all standards and that in terms of treatment the treatment they'll give to my wife will be the same.

Sloan is not in our insurance network. The other two are.

Out of network is 70% coverage of standard & customary charges with a $4000 out of pocket yearly maximum.

For example is a standard fee for a procedure is $1000, the insurance will pay $700 and you are on the hook for $300. If Sloan Kettering decide to charge $1500 for that procedure, you are also on the hook for the $500.

Once the 30% adds up to $4000 you don't have to pay any more. However you will need to pay for the excess charges that the hospital charges no matter what.

vs

In network coverage is 90% of standard charges, $2000 out of pocket max and will never have to pay the excess since the hospital can ONLY bill for the customary charges.

I am of the belief that this will be extremely expensive to the point of hundreds and thousands of dollars so the decision to go out of network is potentially a big one. Naturally I could care less about the money. I will work and finance and we can ALWAYS make more money. If there's really going to be a difference in the treatment then I will not hesitate to do whatever it takes to get my wife the absolute best treatment.

So my question is, does anyone have any insight into the difference between say Sloan Kettering and Robert Wood Johnson???

My impression is it's a question of meeting with the doctors and getting a personal feel from them as to who you can work with and who's going to be the "champion" for my wife and stay on top of this thing.

d) Are Clinical Trials free since you're in essence helping the drug companies out???

So many questions. Thanks for the information so far,
-fs

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

>CPTMAC: That's wonderful. Thanks for the information. You've been very helpful.

You're welcome. When I was first diagnosed, I looked for Stage IV survivors and could find none. I really didn't want to hear from anyone with a lessor stage. So I told myself I would come on and I'm so glad that I can be of help. Thank you for letting me know I am being helpful.

>a) My wife is fasting and drinking some "yellow stuff" in preparation for a colonoscopy tomorrow. How long does it take to get the results of that?

How did your wife find out she was Stage IV. It was by a fluke that I even had a colonoscopy. From there the Dr. found a tumor. He said it was in my rectum, but when I went to the U of M, they said it was in my sigmoid colon, and thus a whole different treatment plan for me.

The Dr. took a biopsy from my tumor and sent it to pathology. Within three days I found out it was cancer. I had a CT on Thursday and found the results on Friday that the cancer was also in my liver.

>Am I to understand that you kept your job and were able to work 50 hours a week whilst going through this??? that is amazing. Please confirm that my understanding is correct.

That is correct. Everyone responds differently. Tony Snow was Stage III and is now Stage IV. He took off a few weeks after the operation and will state chemo, I think, next week. Since he will be losing his hair, as I did, my guess is he will be on the same Chemo I took. I chose Irinotecan, because Oxilaplatin can cause neuropathy. Which means your fingers will become numb. It will also make it difficult to withstand things that are cold. So you'll need to wear mittens when picking up cold foods. Eating cold foods would also be difficult. The worst part of Irinotecan was losing my hair. But I'm on TV, I bolstered my self esteem and went on TV with a Hat but no wig.

The key thing is everyone responds to chemo differently. I picked an aggresive treatment with side effects I could life with and I was willing to try new things. I signed up for a Stage II clinical trial. I did have Diarhea, but took two shots of atropine to clear it up.

>So my question is, does anyone have any insight into the difference between say Sloan Kettering and Robert Wood Johnson???

I certainly can't make this decision for you, but I will tell you how I arrived at my decision. I was in the Army, and they teach us, imagine the worst case scenerio, now what would you wish you would have done differently if it is the worst case. I know that I would wish that I went to a top hospital.

When I had my CT scan in MO, it took time, I had to change my clothes, the stuff they gave me to drink made me sick, I had to hold my breath, and I got X-Ray pictures. When I went to the U of MN, it took no time at all, I wore my civilian clothes so I was in and out. I got my CT on a CD.

If you go to Sloan you will have access to some of the top of the line clinical trials, if you chose to go in that direction. You will also be connected to other top of the line Dr.'s. I was known as the Queen of side effects (thus the long stay after my liver surgery) so top doctors had to come and see me to diagnose my problems. If it only affected 1% of patients, it was me. I was impressed with my doctors, and my doctors were impressed with these other doctors who came and saw me.

My doctors cracked me up, they came in and said, Wow, Dr. so and so came and saw you? To which I would say, who is he, and they were the Head of Blah, blah blah. But it made me feel good that I was in good hands of people taking care of me. Even the top neurologist, who is called to investigate in all of the major cases in the US came to see me. That was cool, because I'd seen him on the news.

Paying for the treatment.
Initially, my insurance company would not pay for my colonoscopy, I chose to go forward anyway. Since I had cancer, they paid for it.

You can get put on a payment plan at any institution. You can also find help to pay for it via cancer care, spaghetti dinners, etc. Altough my insurance company didn't cover clinical trials, my oncologist booked it as the two standard treatments, because they are covered. So these are things you'll need to talk over with your doctors.

>My impression is it's a question of meeting with the doctors and getting a personal feel from them as to who you can work with and who's going to be the "champion" for my wife and stay on top of this thing.

My doctors at the U of MN were the best doctors I've ever had. I always had a lot of questions, and they never made me feel rushed or stupid. After I was done with chemo and wouldn't see my Oncologist for 3 months, I panicked. I had a list of over 100 questions. He never once looked at his watch, he never once told me he needed to leave. My appointment was at 4 PM and I left at 5:30 PM.

Also, once I was confident my chemo was under control, and I had my Dr.'s okay (they thought I was being over cautious about disliking Dr. in MO) I asked all the Dr.'s in the city in MO I live in, whose the best Dr. They all named one doc and I went to him for chemo. First session went fine. And all of my blood looked great up to this point. So I had my second session, they messed it up, my blood went wacko. I was in the hospital for the day. They had to call my onocologist from MN to find out how to fix me. I decided right then and thier that 16 hours was not that long for me to drive, because I saved no time in my own city.

All of my doctors in MN gave me their home phone numbers and their e-mail addresses. When I first went there, the surgeon called me at home, from her home to tell me that my cancer could be cut out and I had hope. She didn't want to wait until office hours on Tuesday to tell me. That made me feel awesome. That made me feel like more than just a number. That made me not want to seek treatment at the Mayo (which is higher rated in Rochester, MN and I was contemplating going there).

>Are Clinical Trials free since you're in essence helping the drug companies out???
This is not true. My clinical trial involved using two procedures that are usually used seperately. I would use both procedures at the same time. There was no extra gain for the drug companies. Just a better outcome for the patient. Mine was part of a huge trial, where I used Irinotecan and the pump, others used Oxilaplatin and the pump. My trial was not funded by a drug company. Not all of them are. Some are funded by Universities, some are funded by the USDA, etc..

>So many questions.

Honestly, you can't ask too many questions. Let me know if you have more.

Also, sometimes it helps to have a chaser when drinking stuff to cleanse your system. I liked apple juice and gingerale. Experiment, find out what works for your wife.

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Another web site

http://www.communityzero.com/cca

It's harder to navigate, so I don't like it as much.

pasteer is from your area. She went to Sloan Kettering and also sees regular docs in her area. She may be better able to answer your questions.

Here is a blurb of hers. She also did the pump. She had more problems than I did.

I am a Stage IV patient moving into survivorship. I was diagnosed in early 2004 at 48, already in Stage IV with liver mets (no symptoms until about two months prior to diagnosis). I took nine months of FULFOX w/Avastin; had the primary rectal tumor removed along with a permanent colostomy and implanted hepatic arterial infusion pump; took a year of HAI therapy (FUDR + systemic irinotecan); and then had successful liver resection in March of this year. The MSKCC oncologist had to concoct a systemic adjuvant chemo after surgery since the HAI pump no longer functioned in my newly resected liver, and that therapy was so disabling that I stopped it after three months. I've been off chemo for about a month, and just went back to work after four months of short-term-disability...aside from the fatigue, I generally feel okay. Oncologists at home and in NYC are doing happy dances, and I know that I should be feeling great about my current condition. However, I'm now on Innohep (daily heparin injection) to try to dissolve a clot in the portal vein of the liver that developed after surgery. The fatigue, the daily Innohep injections with the constant bruising, trying to get back into a work routine are all combining to make me feel...

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Here are some places that can help with costs

To help pay for transportation

http://www.angelflight.com/

and http://www.corpangelnetwork.org/

to take you to and from treatment for free.

There is also Hope Lodge that will let you stay for free during treatment.

http://www.cancer.org/docroot/SHR/content/SHR_2.1_x_Hope_Lodge.asp

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Something else that helped me out a lot, is when I was diagnosed, I am the money worrier. All the books tell you to ask the doctor how much it will cost and if the insurance company will pay for it.

My husband told me to not ask. That I was to pick the best treatment for me. I didn't even look at a bill until after I was done with chemo.

I was glad I did, because I was floored. Plus, insurance companies don't like to pay. So, I had a lot of writing to do and I did get the insurance company to pay for everything.

Because I work at a large place, they gave me the services of a lawyer, and just adding his name to my paperwork made the insurance company work a little harder. So, I just paid the minimum.

Also, if you open Micrsoft Excel and do a search for Medical Bill Tracker, this program helped me a lot in keeping track of my finances and helped me figure out when I reached my out of pocket maximums.

Hope this helps. I'm sure your brain is reeling from all the info. I know my brain hurt from it all. But I learned so much in such a short time.

Let me know if you have any questions.

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Here is a blog written by someone with Stage IV who is younger than 30

http://coloncancersucksass.blogspot.com/2005_09_01_archive.html

Just so you know they are out there.

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Here 's a guy who was diagnosed at 31

http://natebarrell.blogspot.com/2007_03_01_archive.html

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

CPTMAC you rock. Thanks for the info. I had not seen Nate's website so that's encouraging.

Would you email me privately regarding the costs? If I could just get a ball-park that'd be useful. Are we talking mid-six-figures? Costs will not be a gaiting factor but I am curious.

Also, any thoughts on the other questions?
Thanks again, I feel so much better equipped to handle the next step.

mjd77 · New User Joined: 24 Apr 2007 Posts: 6

how did you find it? what made you want to get an mri in the first place? you gotta see an oncologist and surgeon (specializing in liver ressections and/or transplants) ASAP!!! if you don't already have an appointment with an oncologist scheduled for THIS WEEK, get in the back door, i.e. emergency room. it's ghetto, but this is an emergency, and oncologists are awful about keeping new patients waiting for appointments.
i was 28 when i had bad abdominal pain (which was totally unrelated), went into er, they did catscans and found two 5 inch tumors in my liver. the oncologist who was on call at the hospital at the time saw me in his office that same week, the following week a mediport was put in, and two days later, i started chemo. the stats are terrible, it's true, but that's for old people. whenever i go to my oncolgist's i am like 2 generations younger than all the other patients, and i think, "hell, if that's my 'competition' vis-a-vis the stats, this will be a cakewalk!" my onc wanted to shrink the tumors first with oxyplatinum (sp?), 5 fu, and avastin, and it worked really well. my surgeon, dr.piper of fairfax hospital in fairfax, virginia was awesome. my oncologist at johns hopkins recommended him. he's done about 500 liver ressections (for cancer), and 500 liver transplants. people fly in from all over the world to have him operate on them. the tricky part, which the surgeon ultimately decides, is if it's operable. depends on where they are (if they're near the main artery/vein it's way too risky), and how many there are. chemo shrinks it and slows growth, but surgery gets rid of it, unless there's some miracle, sudden remission. it's a long journey, good luck!

don't quit your job! you need all the $ and insurance you can get; this stuff is crazy expensive. each round of chemo was @ $14,000, and so far i've had 14!!!! (it returned after the liver surgery Crying or Very sad

).
enlist family and friends for support; you can't do it all by yourself, with two little kids.

mjd77 · New User Joined: 24 Apr 2007 Posts: 6

the liver surgery would run @ $80,000. if you don't have insurance through your work, work at starbucks, they give out benefits for even part time people. seriously, it's worth it. i'll continue to have chemo indefinitely, and at $14 g's a pop, every two weeks, for 4-5 months at a time, then 3 month break, then more, it would be crazy money without insurance. you wife will not be able to work, she's gotta focus on getting better, and her immune system will be really low.

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

>CPTMAC you rock. Thanks for the info.

Thank you. I could talk anyone's ear off about colon cancer, but I'm not always sure when too much is too much.

>Would you email me privately regarding the costs?
I am new to this site, so I'm not sure how to send a private e-mail. If you can tell me how that would be great. If you go to the cancer compass site at
http://www.cancercompass.com/
and post a message under colon cancer I can find you and give you my home number privately if you'd like to talk. I do have unlimited long distance and have talked to others. I can also post privately on that site. But I don't know how to do it on this site.

>If I could just get a ball-park that'd be useful.

My chemo was only $5,000 a pop. Others have listed the cost, but didn't say what they used. But I didn't pick this because of the cost, I picked it because it was the treatment that I liked best.

But I had two surgeries and an expensive pump put in my body. I think the pump was at least $5,000. Plus, I was in the hospital about 3 weeks after my liver surgery. So all that was about $200,000. But all I paid was for my out of pocket costs. Plus, I was put on a community care package that paid 60% of all of my treatments for 2 years. Again, there are resources out there to help you. What I liked about the U of MN, I didn't even know about these resources, they told me about them. I thought I wouldn't qualify. They kept giving me extensions and practically begged me to fill out the paperwork. So, I was shocked that they paid for 60% after I was 6 months late in filling out the paperwork and missed every deadline. Plus, I only pay my bill at $50 a month. So I think I'll be done paying that in about 10 years. But hey, it's only $50 a month.

The thing to remember is, everyone is different. I just needed Irinotecan and FUDR. Avastin is much more expensive. But if I needed it, I would pay for it.

There was one pill that my insurance would not cover that costs me $100. I paid for it. It was well worth it.

>Also, any thoughts on the other questions?
Did I miss one? Let me know which one I missed. But if it's about Sloan vs. others, I can't speak because I'm not familiar. But if it was me, I'd go to Sloan. I would want the best treatment. I think the guy who wrote the book that I recommended is from Sloan. He was also Katie Courics husbands Dr.

>Thanks again, I feel so much better equipped to handle the next step.
Knowledge is power. I felt so much better equiped to deal with this the more I knew. Unfortunately, when I was diagnosed, there wasn't much out here in the web world for me to talk to people. And, quite honestly, I didn't want to hear about the trauma of Stage I's or III's. Puuhllleaassseee. Give me those odds. So, although it's unfortunate, I'm glad when someone like you comes along, to know that I can be of some help.

But you will have more opportunities at a bigger hospital for different treatments, because they have more trials available to them. It's important to be a NCI cancer site. They get more money for research.

When I went to MN vs MO the difference in just a CT scan was amazing. The pictures made a big difference. And I thought I wanted my doctors to get a clear picture.

I can tell you too, unless she is scared, it's far better to be awake during the colonoscopy than asleep. I liked being awake so I could see it and know that my doctor wasn't missing anything. But I asked all my doctors what part of surgery would they be most concerned about, they all said anesthetia and all agreed the less the better. (Although I always get the nitrus oxide at my dentist, and is why I still see the one from NE because a lot of dentist don't like to use it anymore).

I'll send this now and start a post about how to best prep for surgery and other nifty notes about chemo in some upcoming posts. Don't want to innudate you.

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