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2nd opinion results

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Hi - I had my second opinion on Monday and boy am I glad I did! Dr. Lenz (USC) was great and told me about a treatment for colon cancer with mets to the abdomen rather than the lungs or liver. It involves surgery to remove the tumors (in my case in the fat around the colon) and then a heated chemotherapy bath for my abdominal cavity while still in surgery. For five days post-surgery there is additional interabdominal chemotherapy (not heated). Recovery is 3-4 weeks in the hospital, yikes! However, the success rate is much higher (40% at 5 years) than just chemo (my onc's treatment option).

I talked to a second opinion oncologist within my HMO and he says that they won't cover it, but to provide him more information and he would write a referral. I found out from one of the surgeons that does the procedure that there are two patients from my HMO currently in treatment, so it can be done. I will have to fight to go outside my HMO but want to do this as it's my best chance of surviving this beast

By the way, since I don't like my HMO oncologist, I will be switching to the 2nd opinion oncologist who is much better and I heard is more open to different treatments.

Has anyone had this treatment or know anyone who has? I'm thinking of checking out the appendix and ovarian cancer boards since the procedure is the same with the chemotherapy tailored to the cancer. Thanks, Traci

CanadaSue's picture
CanadaSue
Posts: 340
Joined: Apr 2006

Hi Traci,

My husband had this surgery 2 years ago.

In Canada they call it the Sugarbaker Protocol, after Dr Paul Sugarbaker from chicago I believe.

A little history: dxed in Jan 06, surgery Jan 06 to remove most of the colon. Surgery in Apr 06 to remove the rest of the colon, gall bladder, and most of his peritoneal (sp) wall, he ended up with a permenent illeostomy, and that is when they did the Sugarbaker Protocol. Mar 07 reoccurance on his bladder, more surgery to remove the bladder, and prostate, and permenent illioconduit.

Just before they sew you up, someone (the poor soul) swishes the hot chemo (over 100 degrees) around in the abdomin for approximately 90 minutes. Then they make 4 incissions in the abdomin for the drains, they then stitch you up and put 1 liter of hot chemo into you thru the drains. The chemo is left in you for 23 hours, they drain it and leave you dry for 1 hour, and fill you up again. This did go on for 5 days. For the first 2 days my husband said there was pressure from the fluid, and then of course the chemo did make him ill. He was in the hospital for 14 days.

I hope this has answered some of your questions.

Take care - HUGS,

Sue

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

That sounds very promising, Traci!! SueCanada's husband had something similar to this, although I can't say that it was the same treatment. But I remember her talking about him having surgery and then a hot chemo bath at the same time. Like I say, I don't remember the details so it might not be the same as what you are talking about. She is in Canada, so the insurance process would be different.

It blows me away that if there are treatments out there that have shown to have a benefit, why would an HMO turn it down???

Hugggggs,

Cheryl

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Cheryl,
The answer to why an HMO would turn down a treatment shown to have a benefit is money! Also, they are all so anal about their rules and guidelines. Even when something makes sense for them moneywise in the long run, they don't ever want to go out of their guidelines and/or norms. Why did my HMO tell me that as long as I'm "in treatment", that I can't change oncologists?? I replied that as a stage IV cancer patient, I could technically be "in treatment" for the rest of my life, so does that mean I can never change doctors even if it might mean better treatment, possibly life saving treatment for me? They had no answer and just told me "that's their policy". The oncologist I consulted with (they approved my 2nd opinion consultation, but then wouldn't let me actually change over to him) told me he'd be there for consultation via phone or email any time I have questions or concerns. I emailed him asking questions about my current dosages, timing of chemo, etc. Fortunately, he agreed for the most part with what my current onc is doing, so that was reassuring. Still, I wish I could change because my current onc already messed up a couple of times & I found out after the fact (I was given Erbitux without being k-ras tested first, then was found out to have the k-ras genetic mutation that makes Erbitux worthless for me- how much money did the HMO waste there by paying for eight weeks of Erbitux when it did me no good- not to mention the horrible rash it caused for no reason- not to mention the fact that four months after stopping it I still have the red rash all over my face. It hasn't gotten better in spite of the many, many things I've tried and taken for it). Frustration!!!!
Ok- there I got it out of my system!
Lisa

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Doesn't that just make you wanna scream?!? Same thing for me. I had a terrible, horrible reaction to Xeloda because I'm missing the enzyme that breaks it down. I know that the recovery treatment from the poisoning cost far more than a simple test would have to see how my cancer would have reacted. Then they had to pay for an additional 6 weeks of chemo. It's nuts how they chop off their own noses!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I just shake with anger every time I hear another horror story like this. Hey, it's not to say we don't have our own horror stories up here (Canada), I can see differences in how medical insurance handles things from province to province... but to hear this kind of absolute nonsense (and you aren't the first one to have told me stories like this) just blows me away.

I know that folk have been told (I'm not sure if it's the government or the insurance industry) that to have a medical system like Canada's or Japan's, or England's would be horrible because you would have to go to "government doctors"... you wouldn't have a choice of which doctors you could see. Well, for starters, that's hogwash... we don't have "government doctors" unless you consider every doctors/specialist/technician/nurse/surgeon/etc. is a "government doctor" because they are all paid by the provincial government medical plan of the province they live in. But you, as a patient can go to any doctor you choose to go to and if you aren't happy, or it's not a good fit, then you can find another doctor and go to him/her... and your medical records will be sent to the new doctor (you don't have to go get them yourself and bring them). Likewise with specialists. Ok, so in the case of us cancer patients, we have an assigned oncologist (if you don't like him/her you can change) and your oncologist is the head of your team. They will refer you to all the various specialists/surgeons/etc. that you need... and that they know. Again, if you don't like one of them or don't feel good about them, you can ask for a different referral, or even find someone on your own (although, personally, I wouldn't know what I'm looking for so I am so glad I trust my oncologist to get the best for me and so far she has). I will be having a discussion with her about my feelings of this latest RFA procedure and want to know if a lot of it is my misunderstanding and his way of explaining, or was this her understanding too... and we'll go from there. That's one of the things I love about her... I can talk to her about anything and she is so compassionate. If she sees I'm not quite getting it, then she will find a different way of explaining it to me.

As for money... let's face it, ALL insurance companies... from medical to car insurance are all about money. That IS their business and the only reason an insurance company is in existence is because of money. Let's not fool ourselves into thinking a car insurance company is in it because they love cars and want everyone to have the best car around... nor are medical insurance companies in it to see that people get the best care for their dollar. I understand that... I don't like it, but I understand it. But there comes a time when the art of their business is actually doing more harm than good... and in the long run is costing more money than the money they are trying to save. I know there is so much hope on this new President and his administration and I highly doubt he is going to be able to change things in this next 4 years... there are too many things that are broken that need fixing... but I really do hope at some point they CAN do something about fixing the system so patients can get the care and trust in their medical professionals that they deserve!!

Off my soapbox...

Huggggs,

Cheryl

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I am so mad if my husband doc would of tested for the k-ras he is on erbitux since june .
he would not have these big big tumors all over now . his doc is going to test him now alittle to late for that . we may look to another doc i will talk to my husband when he is clearer to much pain meds. he doing better in the hopital starting on full liquid diet to see how the ileostomy going to work. but he vomits what he takes in. will talk to the surgen today i don't want him being discharged this weekend if he can't keep things down.

michelle

tiny one
Posts: 467
Joined: Jan 2009

Five days after I had my resection and ileostomy I would vomit everytime I tried to eat, and I had heartburn which I never do. My surgeon had to dialate my stoma on the fifth day. He did this under sedation. After that I could eat and was fine.

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