March 14, 2017 at 7:55 pm #94305
Having problems with my insurance company and using Foundation One they are consinder out of net and they want me to have my Dr do a predetermation request for each procedure code (26) so they can reveiw them which can take up to 2 months. Foundation One said it doesn’t matter to them if they are in net or out of net they will take whatever the insurance company gives them and will not bill the patient, but my insurance company says if I do it without the predetermation request they will deny the whole claim, even after I told them we might not have 2 months to wait for them.
Did e-mail the Dr John Fung at University of Chicago Medicine that Julie was talking about and he said to send him Rich’s med. records and scans and he would look at them, so who knows this Dr is known for his liver surgeries.
Julie if your online what was the name of that Dr in Dubuque you where thinking of seeing? Maybe he would be someone we could use instead of our Dr Doom and Gloom.March 14, 2017 at 5:43 pm #94304
richnkim….presently, Dr. Javle as well as Dr. Shroff are in Thailand with some of our board members. Unfortunately, this delays your consultation with either, but you are in good hands with both physicians.
Your doctor should submit a tissue sample to Foundation One. I don’t quite understand why that would be a problem.
The test results will be given to your physician and he in turn will hand it over to you.
Regarding Bill’s stomach or liver pain: He should not have to be in pain. There is plenty of medication, but know that Opioids have a tendency to plug up the system, hence you must make sure that he has regular bowel movements.
Hang in there.
MarionMarch 14, 2017 at 3:08 pm #94303
So how does Foundation One work? My Dr sends in a tissue sample and then what? What do they send back to my Dr and what does he do with the results? Sorry if I sound stupid, I’m really not that dumb, Rich says his excuse is he has chemo brain, I don’t know what my excuse is but lately my brain can not make a complete thought, I think it’s from a lack of sleep.
I did call Foundation One and they said they take what your insurance pays and thats it they never bill you the rest. I got the procedure codes from them and called my insurance company and I need to get the test preauth. So fun trying to get the Dr to do that much less order the test.March 14, 2017 at 11:19 am #94302lainySpectator
Dear Kim, your go to ONCs at MDA Houston are at the top of the CC field and I met one of Dr. Javle’s Nurses (a man) at the CC Conference in Salt Lake in February. What a wonderful person. I feel you will be in much better hands then where you are.
My husband started out at 6.5 cm and it was brought down to 4 in a month of radiation. His CC was in another area and he was 73. Your husband has a younger age on his side.
The very best of luck to you and the time is due to turn this all around for Rich.March 14, 2017 at 6:05 am #94301
Julie,Lainy and Marions
Thanks for your input, I need all the help I can get!!
The Dr we seen at Mayo was Dr Frank Sinicrope and we did not see a surgeon up there. I was expecting them to run there own tests but they didn’t all they did was blood work and looked at the scans we brought up. The tumor is 6.9 by 5.6 inches and on his liver only it is not around any arteries. They say that is large. They said he can’t have surgey because of the size and because it has gone to his lungs also. But I have one rad. saying that it doesn’t look lung cancer and no one will do a lung biospy to find out because they say what’s the point he’s stage 4 it doesn’t make a difference.Which I don’t understand because all of his blood work is great, liver,kidneys all fine. He is still working a 40 hour work week. I don’t know how he does it but he is still working. The weird thing also is he used to be type 1 diabetic and has not had to take a shot for over a month now. His dr can not explain that one since the steriod they give when you get chemo should raise his blood sugar but it doesn’t.
The Dr we are seeing at MD Anderson when we go down there is Dr Milind Javle and Dr Rachna Shroff. I have not ever talked to them but talked to a onc. nurse April.
Julie who is the Dr in Dubuque that you said is good? Dubuque is when we are going for treatments, we live about 20 min from Dubuque. Cuba City WI is on the boarder of ILL and Iowa. I would love to find a new dr that would give us some hope. So funny Rich is going to Cedar Rapids for work tomorrow. Are dr is at Grand River Medical Group.
As for Rich’s stomach problems we’ve talked to his dr about it and he says it’s a side effect of chemo take the anti-nausea pills. I have him taking something for his constipation and over the counter prilosec, plus he does take his pain pills (hydrocodone) but nothing seems to help his stomach pain. So he can’t really say if it’s stomach or liver pain because it’s kinda all in the same area, if that makes sense.March 14, 2017 at 2:51 am #94300iowagirlMember
My experience with Mayo concerning tumor biopsy testing for mutations: They went ahead and tested for 3 mutations on their own without discussing it with me. It took three weeks to get the results. From the discussions we had, it appeared that they only tested for mutations for which they had a clinical trial at Mayo for which I might be a fit. When all three came back negative for any three of the genes being mutated, I insisted that they send the sample to Foundation One to be tested. I still wonder to this day whether they asked for the fullest testing available. I have mentioned trials to them in other locations and they don’t seem to know anything about them. But, I think this may be the case across the board when it comes to hospitals. They seem to become very narrowly focused. Many CC patients have to look for their own trials by themselves unless the hospital happens to have one that fits your circumstance.
My situation now is complicated by the fact that I have now developed another cancer (MDS-a blood cancer) which is also being managed by Mayo (and my home oncologist doing the treatments prescribed by Mayo). If my CC comes back (I am currently NED (no evidence of disease), but it is comes back again, there will be hard choices. Without the MDS, I would not hesitate to go to MD ANDERSON in Houston, and still would strongly consider it, but with the MDS it would make the whole situation far more difficult. However…….nothing is impossible maybe.
I wouldn’t hesitate for a moment going down to MD ANDERSON if and when the time is right for you. I understand about what you said about being in a very rural area. I came from such an area and even where I now live, I’ve often had serious doubts about the quality of health care. I’m in eastern Iowa and Mayo is fortunately only 3 hours from me, which makes it hard to justify going the extra distance to MD Anderson, or out to Seattle for my MDS, but it is what we’ll do if and when we have to do it if Mayo has nothing to offer.
YOU have a HUGE reason,. that 11 year old, for doing everything you can to push for the best medical care that you can get and to push the envelope if you must to get the medical care your husband needs and deserves. Marion was spot on that most all trials require that you be on chemo first before it either starts failing or you can’t tolerate it any longer before trials will accept you. But, I would demand that a full mutation analysis be done through Foundation One so that you know if there are any mutations that are actionable. Some doctors might prefer that a biopsy be done after the chemo stops working, if the tumor is still big enough to get a biopsy because it seems that after chemo, new mutations can show up. My current local oncologist has told me that if my CC comes back again, he would order a new Foundation one study on a biopsy of the new tumor (if it isn’t operable) However your local doctor doesn’t even sound like he’s interested in pursing anything. It doesn’t sound like maybe he is up to date on mutation testing and the current state of immune therapy or the increasing survival times of many CC patients.
One note about DNA gene mutation testing. I was told by someone before I had it done, that if insurance does not pay for it, or all of it, Foundation One does not pursue the collection of the balance, for whatever reason. I had it done last August and insurance didn’t cover anything and to this day, I have never received a bill. So, I’m assuming that must have been true. It seems a bit odd, but maybe there is research involved? The quoted price is about $5000 for the testing.
When you live further away from the “big guns”, and have a less than stellar local oncologist…..or even less than enthusiastic “big gun” oncologist at a center of excellence hospital….you have to take the bull by the horns and search for more optimistic and forward thinking doctors. It takes a lot of time….and the travel can be so daunting, but when you find the right doctor, it would be worth it.
I know right now, everything seems to grim and it doesn’t help that your local onc sounds like a negative Nellie. There are doctors (and other people) who can give you the facts….and then there are those who give you the facts while explaining that they aren’t giving up on you. I had to fire my first oncologist here at home because she was so abrupt and cruel. It was scary to change oncologists, but I’m here to tell you that it was the best thing I’ve done through all of this mess.
I’ve been there…..we all have…..those first 6 months after diagnosis, you feel lost in a wash of letters that stand for something, but you can’t remember what, differing opinions, terminology that is foreign, way too many doctor appointments, anxiety over testing, anxiety over the “what ifs”, …..and on and on.
I also had/have nodules in my lungs, which at first they though were cancer, but they did surgery anyway to remove a 5 cm tumor. The first Mayo oncologist I saw, was fixated on those lung nodules first being mesothelioma with a met to the liver and then maybe ICC with a met to the lungs. The supervising oncologist then came in, reviewed things in about 10 minutes, asked me a few questions and then asked, “What does your doctor at home think this is?” I was a little surprised. I answered ICC and this onc said, “I do too.” I asked what about the lung nodules and she felt they were garden variety nodules….nothing to get excited about. The nodules never changed in size, so now , three years later, they no longer think they are cancerous. I’ve had two recurrences, each dealt with, and now new nodules have shown up in my lungs….again very tiny little things….and this time, they said that since the first ones they saw weren’t anything, that these probably aren’t either. Of course, now I worry again (the worry never goes away). The first ones did not light up in my PET scan done when I was first being diagnosed . Have they done a PET scan on your husband yet? It seems that might answer the question about those unless there’s some reason they wouldn’t light up the scan. Marion?….do you know the answer to that? Anyway, not all lung nodules are cancerous. As your husband has additional scans, it would be helpful to see if they grow at all or shrink.
Once you have a plan in place and are comfortable with it, things will smooth out. But for now, this is all so new and horribly frightening that it seems like you’re in a pit falling deeper and deeper. That won’t last forever. I wish that your local guy seemed more interested in fighting this with you guys…someone who was a bit more positive and compassionate…..as that would help considerably. I don’t know where in Wisconsin you are, but is there a chance you could switch to another doctor in the area. When I switched doctors, I interviewed him first. Actually, he told me HIS philosophy before I had a chance to ask questions…….and he was spot on what I needed on a day to day basis. I don’t know how are you are from Dubuque, but there is a guy there who used to be in my city. I almost went to interview and switch to him because of his credentials. He graduated medical school with honors, got some training at Mayo, and undergrad at the U of Iowa. He may be partially retired, but he’s still in practice because I had called the office in Dubuque. I honestly don’t know what he’s like in person, but it might be worth talking with him if you are close enough. Heck, if he thought you needed more than what he can offer (depending on if he is semi-retired), you might ask for a referral to someone he knows who is more forward thinking.)
Chicago may be a good choice for you for somewhere not quite so far away. There is a Dr. Fong there who used to be at the Cleveland Clinic in Ohio. Everything I’ve heard about him is excellent……top notch doctor. It might be worth having your files sent to him for another opinion, though if you can manage it, and they will set it up, I always think in person is best, so they talk to you face to face. If you’re interested, I would try to find out exactly where Dr. Fong is ….what hospital, etc for you.. At MD Anderson, the guy to see seems to be Dr. Javle.
There are plenty of examples of people who have frequented these boards who are considered stage 4….and have been given short times to live, but 3-6 years+ later, they’re still around. For most of those, CC has turned into a chronic disease that is managed by changing treatments, different trials, some which work and some which don’t. But they’re still here and have lived to see the milestones of their kids’ lives. It’s not easy….but it’s the way it is. AND…..if you get lucky and have a mutation that has a targeted treatment, esp like one for which Keytruda or Opdivo might be used, your husband might be one of the very fortunate for whom the cancer goes away. Look for the posts of Matt Reidy who found he had MSI (microsatelitte instability), His doctor ordered Keytruda off label, Merck gave him the drug for free, and he’s currently NED. Another lady who did a trial out in California had the same results. That molecular testing is very important.
Would you mind sharing who you met with at Mayo? Did they call in a surgeon for a consult with you? Also, do you know the size of the liver tumor? Is it a single tumor or multiple ones? It kind of sounded like one big tumor, but I just wanted to be sure. Is the tumor wrapped around one of the arteries? Or….what makes it inoperable? If the tumor is so large that it would require too much of the liver to be removed to get it all out, then maybe the Gem/Cis enough to allow surgery. Sometimes surgeons say no to surgery and say it isn’t possible, because they don’t have the expertise, but another surgeon says yes.
I just looked up where you live…..Cuba City. You are only about 1 and a half hours from us here in the Cedar Rapids, Iowa area. Perhaps we could get together sometime to chat and relax? I’m sure I could convince my husband to go for a day trip on one of my off chemo weeks. Just being around someone who is going through what you are…..someone who gets it……can be very helpful. I’ve met several other CC patients in person from these boards and each time, it’s overwhelmingly positive. I feel like I can relax with them and say anything and they won’t judge or assume anything.
This has been long, but I hope that you can glean some tidbits. Marion is a wealth of knowledge and when it comes to that technical stuff, she’s your go-to gal. She’s also so compassionate as are many others here on the boards….some patients…some caregivers.
Hang in there…… We’re all here for you.
Julie (Marion, Iowa)March 14, 2017 at 1:59 am #94299lainySpectator
Dear RichNKim , Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your husband and that you had to join our remarkable family. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time.
Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
As a former Wisconsinite (Milwaukee) I am wondering where Rich is being treated?
I want you to know that many of our Members have been diagnosed at Stage IV and once the best treatment for them was received they started getting much better. Most had sought out other opinions.
Please do keep us updated on hubby’s progress as we truly care.
P.S. Sorry for my delay in welcoming you but I was out of town for a week.
Below is a site you may find helpful:
You never know how strong you are until “strong” is the only choice you have!March 14, 2017 at 12:38 am #94298
Any explanation as to why Rich is suffering from stomach pain? Is it his stomach or his liver causing the problems? Why isn’t the pain addressed by the physicians with various meds?
Ask Mayo whether they run the validated, comprehensive genomic profile on 315 cancer-related genes plus introns from 28 genes often rearranged or altered in solid tumors.
Ultimately, you are looking for answers to the genomic alterations associated with various targeted therapies, identify clinical markers associated with immunotherapy response and identification of relevant clinical trials.
Take a look at Foundation One:
MarionMarch 14, 2017 at 12:06 am #94297
No the acupunture was for Rich not me his stomach is killing him, he’s taking the anti-nausea drugs but doesn’t seem to help much. So if anyone has any ideas I’m open to them.
I will call Mayo back and see if they will run an entire panel since our Dr. here won’t. I did ask if we could do radiation and was told no because the tumor on his liver was to large and because it had already gone to his lungs.March 13, 2017 at 8:59 pm #94296
richnkim……the CA 19-9 doesn’t provide solid answers to tumor activities. In your husband’s case the numbers decreased significantly however; scans show minimal shrinkage. MD Anderson’s response is to not stop something that is working at this time.
I would however; continue to look for second line of treatment and I feel strongly that additional molecular testing on the tissue should be performed. Appears that Mayo did some testing, but it may not have been the entire panel.
Hang in there, there is some good news of shrinkage buried in it all. Good you are taking care of yourself as well. Caretakers are under enormous stress.
MarionMarch 13, 2017 at 5:42 pm #94295
Heard back from MD Anderson and we are not going there yet because the chemo did shrink some of the tumor they said stay here and continue what we are doing.
Wish I could find someone to talk to about vit and supplements as I do think they would help.
Went to get acupuncture for the nausea and fatigue so we will see if that works.March 9, 2017 at 9:17 pm #94288
CT scan results yesterday were not as good as we hoped the Dr said there was a little shrinkage, which I’m a little confused on when the tumor marker blood test showed such a big drop. He said we will the chemo. I asked him about doing the molecular testing and he said no they don’t do that there. I also asked he about putting Rich on such vit. or supplements because his RBC are getting low and he said don’t waste money there are studies showing they really work. So I’m back on the internet finding out what he needs on my own.
Haven’t heard back from MD Anderson yet on what they think on the scan, but Mayo Clinic called and said there blood work came back (I didn’t know they even did this when we where there) and said Rich’s tumor showed mutation SGSR2 and they have a clinical trial right now using Ponatinib which is a pill he would take daily and if he went into the trial he would have to stop chemo. I told them no for now because the chemo is doing some good for him. I will have to see if I can find some info on this mutation SGSR2. I’m sure his Dr won’t give me help.March 7, 2017 at 11:14 pm #94294
richnkim……FANTASTIC, your insurance is great. Also, I am thrilled to hear of your husband’s positive response to the current treatment. Of course, he will reach maximum benefit, but no one knows when that will be and how much shrinkage can be achieved. Plus, I hope that the molecular testing results will open the way to other treatments.
You are doing great, stay hopeful and strong and let us know about your consult with MD Anderson.
MarionMarch 7, 2017 at 7:29 pm #94293
Thanks Marion we are seeing the Dr tomorrow and I will ask for the molecular testing.
Had the CT scan today and will get the results tomorrow. Also had blood work today which wasn’t to bad the CA19-9 tumor marker test was lower. The first test was 635 and he is now at 350. I thought that sounded good but Dr doom and gloom said all this test is for is to show that the chemo is working, as long as the numbers go down we stay this course if the numbers go up then the chemo isn’t working anymore. Wdhen my husband heard the lower number there was a hint of a smile but that was soon erased.
As for insurance yes we have good insurance it’s Blue Cross Blue Shield. MD Anderson is considerered innet for us. The good about all of this is I used to work for Blue Cross so I know health insurance real well. I’m suppose to call MD Anderson on Thurs. to let them know what the Dr restages my husband at after this scan to see if we stay here to continue chemo or go to Texas and do treatment there. I’m almost ready to just go there no matter what because I think we would have more options. I just hate the thought of both of us so far away from our son.March 7, 2017 at 4:50 pm #94292
richnkim…..no matter where you are, your physician can request molecular testing on the tissue biopsy. I would push for that. This testing will reveal DNA molecular faults for which a targeted drug may be under investigation in a clinical trial. This is highly important and may provide the hope you we looking for. It’s likely you will have to travel to a different site, but that can be dealt with as well.
MD Anderson will require insurance coverage, do you have that?
Most likely, as mentioned by Billy, your husband will have to follow the gem/cis protocol. Once he has reached maximum benefit, another option may become available.
If indeed a molecular fault is found, your husband may qualify for one of two major studies.
the ASCO TAPUR study: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=14023
MATCH requires a fresh biopsy and performance status (overall health) has to be
grade 0: fully active, able to carry on all pre-disease performance without restriction
grade 1 : restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
TAPUR’s health status is a bit more lenient in that it requires at minimum
grade 2 : ambulatory and capable of all selfcare but unable to carry out any work activities, up and about more than 50% of waking hours
A immune checkpoint inhibitor may also be an option.
They key is an oncologist willing to work with you.
Please stay in touch and don’t give up on hope.
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