tess
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Your strengh & spirit are to be commended! Great for you for continuing to seek balance in your body, spirit & mind- and for reaching out to share your story. 8.5 mo. is such a wonderful age… be careful though, my little one skipped the crawling all together & went right to running at about 10 mo., he’s 3 now. His Grampa has cc, and he goes to grandpa’s infusion/chemo appointments with us because they love each other to pieces & always make each other smile!
Best of luck to you in the new year, with all the new positive changes you have planned!
-Tess
Hi Violarob & Gale, Interesting is right. I talked to the insurance specialist about this and she indicated that the docs would have to submit a diagnosis code to the insurance company and she recommended googling “diagnosis code” for RFA and resection. I just came into a BC&BS Medical Policy (Mississippi), noting the following:
“6/19/2007: Policy statement updated; RFA as a primary treatment of hepatic metastases from colorectal cancer in the absence of extrahepatic metastatic disease may be considered medically necessary when the tumor cannot be removed by surgical resection, or precluded by underlying condition(s), and when all tumor foci can be treated. Added RFA for hepatic metastases from colorectal cancer that do not meet policy criteria, and from other types of cancer is considered investigational to policy statement.”
Perhaps some BCBS regional policies might cover RFA, while others would not? Perhaps secretaries of leading RFA providers would be able to provide insights into how they do it, or perhaps justification for different coding possibilities?
Best,
TessGood luck at the appt. today Vince. To add to Violarbob’s comment, my Dad was denied candidacy for resection, radiation and RFA, with 9 out of 10 docs that reviewed his records (per the contact list that I sent you earlier). He finally secured a team at the Robert Packer Guthrie in Sayre PA. The surgeon says if they can reduce the tumor just a bit, he’ll try & remove. He’s expected to start brachytherapy treatments next week, via his biliary cath.
Keep up the fight!Best,
TessGale … you sound to be very pro-active! I talked to the hospital insurance specialist. She indicated that each hospital works differently when it comes to working with insurance providers. A doctor can put together a letter of necessity, arguing for why a patient should receive a certain service, substantiating the necessity for the procedure. This can be performed as an appeal if the patient is initially denied. She also indicated that a patient can contact their congressman, for instances when charges are denied by the insurance company. A proactive congressman’s office, she notes, can research and see if there is a way to work around this either by finding a grant to help, or by offering suggestions on how to proceed.
Good luck to you on the 5th, you are in our thoughts!
Best,
TessHi Joyce. Very interesting about the Vietnam connections…. I sense that exposure to Agent Orange is continuing to catch up with many as well, in the form of new cancers. It is very interesting how the conflict continues to live on. I spent a couple years in South East Asia, in Laos, but my father was not in the war and has never been to the region.
My husband’s grandfather also died of cc, at 72 yrs. of age, in 1998. He was a long time farmer here in the area.
You’re right, this site is absolutely a great resource! Wishing you the best, neighbor!
-Tess
Hi Lainy, I wonder if the Foundation has any data on this, or if there is any formal tracking? I could imagine benefits to patient profiling (i.e. seeking potential commonalities such as the noted sugar substitute thread). Parameters of potential relevance may include location, diet, work, age, lifestyle, health history, etc. A challenge would be how to respectfully acquire such data, via this forum, from patients and families that are often in the emotive throws of despair, grief, hope, and the other 3 million emotional side effects! Today this cancer is ‘rare’ but one day the dots will more strongly be connected & answers/remedies/solutions will surface. .. I pray that will be sooner than later.
Best,
TessHello Joyce, thanks for your note. I had sent you an e-mail a couple weeks ago (as opposed to a public posting), to say hello, thank you for sharing your website and to tell you how sorry I was to hear about Butch. The close proximity of our loved ones – for such a ‘rare’ cancer, raised a red flag in my mind… my parents have long argued that this region (particularly their neighborhood)- is a prosperous cancer cluster. I definitely think that these potential cancer zones deserve more research, the dots have yet to be connected, as cc catalyst remains undetermined.
We are down the road just a bit, in Waverly… but neighbors none the less!
Thinking of you in the new year Joyce, and wishing you strength.
Best,
TessHello again Dane, I wanted to touch base again on the I.V. Nutrition-integrative approach. I asked Mom to share your experiences with Dad’s doc. He indicated that he has heard of such an approach but is not in favor. His argument…. he asserts that not enough research has been done on which cells the nutrition supplements are feeding, further asserting that perhaps they are going to the bad cells – thereby defeating the purpose of the chemo. He does not recommend it for Dad. I asked Mom to please share your note with the hospital nutritionalist for additional insights. Can you direct me to any studies that may lend additional credence in support of the I.V. nutrition/chemo/radiation/resection integrative approach?
Best,
TessThat is so tough Gale, I am so sorry to hear about these experiences! Good for your strength & for your decision! I have a note out to a hospital insurance specialist I know, that juggles these issues every day. I’ll let you know what I hear back.
As an aside, we did finally secure a team at the Robert Packer-Guthrie in Sayre PA, that has agreed to pursue chemo/brachytherapy radiation & potential surgical removal. 9 out of 10 second-doc opinions said that Dad’s intrahepatic cc was unresectable, but the team here is more aggressive & the surgeon has indicated that if they can shrink it just a bit that he’ll attempt to remove it. They have asserted the many dangers of radiation. Dad is expected to start the high-dose radiation (5 days week) for several weeks, next week. He’s just getting over a blood infection, so he’s taking things one day at a time. I’ll keep you posted.
Good luck to you Gale!
This is our case as well Lainy. The docs have suggested that certain positions may cause a ‘kink’, but we haven’t figured out which ones… as its very random! We too appear a bit more concerned that the docs.
Thanks!
Dane, thanks so much to you for your thoughtful response. I sent the info on to my Mom, as she attends all of Dad’s appointments with him. She said that reading about your Mom was like reading about a miracle woman!
Dad’s doctors have had no suggestions regarding supplements (oral/IV) & she is going to share your note to both the oncologist and the nutritionalist.
It is so wonderful to hear about your Mom, and I’m so happy for your whole family.
My Dad can use all the energy sources he can secure, as he’s so very lethargic at this point.
You are right to say that so often patients and their families are on their own to do their own research…. and thank goodness we have this source to compile/compare/contrast the data- so that we can learn from each other.
Keep up the great work!
Best,
TessThanks for the insights Wayne. Yes, by cath I mean the biliary catheter. For now, he has a bag, and it’s capped off when he eats. This will likely be modified at his next visit on the 23rd. The concern, is that because he has a systematic infection, stemming from the cath- they want to ensure that the bile/infection is not backing up at this site. The tumor is a partial obstruction of the bile ducts and of the left portal vein.
Wake Oncology denied Dad for microspheres, based exclusively on the high bilirubin levels, they didn’t even look at scans. I wasn’t aware that the brachytherapy treatment was a form of chemoembolization. The doc simply indicated that a high-dose brachytherapy boost will be sent to the area of the tumor bed, directly through his existing catheter. Dad is confident in his existing cancer team here at the Robert Packer Guthrie in Sayre PA, which is great, as he has refused to travel (though he’s also refused to hear about stages/prognosis, potential ramifications of radiation, etc.).
I will look more into the proton therapy & cyberknife as well, I think they offer the cyberknife here in Binghamton NY.
Yes, the biopsy showed cholangiocarcinoma & not metastatic colon cancer, according to the docs. His previous colon cancer responded to the chemo/radiation, my fear is what you’ve underscored here- that this sort of cancer is often resistent to chemo. I’ll touch base again if we decide to purse additional opinions, with Barnes-Jewish.
Thanks so much!
Best,
TessThanks for the note Wayne, and for sharing some of Valerie’s story. She was lucky to have you for the fight.
I’m not certain where the tumor is in the tree. As soon as Dad was diagnosed in early Nov., he had the biliary cath put in. This definitely helped with the jaundice. The next day the doc sent Dad home & told my parents that radiation & resection were not options, that he’d pursue chemo- but that typically this sort of cancer doesn’t respond to chemo. He told them to look into ‘experimental’ treatments.
From there we contacted docs at Duke, Roswell, Fox Chase, Sloan, the NIH & Wake. We overnighted CD imagery & doc notes to principals at all of these institutions. All docs (except NIH) said that based on the imagery, it is unresectable & they don’t recommend radiation. Wake wouldn’t do the microspheres based on high bilirubin.
Dad’s doc then decided to convene with a surgeon & radiologist. The radiologist wants to go through the biliary tube with Brachytherapy, daily for 6 weeks. Dad is 3 weeks into gemcitabine at this point). The surgeon says if they can reduce it even a bit, that he’ll attempt to resect it. At this point, he’s fighting off a cath/blood stream infection. He’ll resume chemo on the 23rd of Dec.
Dad’s been pretty sick the last couple weeks, but prior to that he was a strong healthy 64 yr. old man. Stomach pains & jaundice initially sent him to the doc, and he’s had lots of pain since the cath insertion. I’ve never heard/seen the term Klatskin come up in his paperwork, I’ve only seen it referenced here on this site.
But yes, Dad was rejected by Mayo without anyone seeing any of his scans or paperwork. The following excerpt reflects the information that the doctor at Mayo had, from which he rejected Dad as a potential candidate- indicating that everything I’d been told by the other centers & the previous Mayo doc was correct (the previous Mayo doc that said the site of Dad’s cholangiocarcinoma (intrahepatic) makes Dad an unlikely candidate for liver transplantation).
“Can you confirm for me that if my Dad’s form of CC is intrahepatic, that he would definitely NOT be a candidate for a liver transplant there at Mayo. There are no mets, it’s locally advanced, he’s two weeks into the original diagnosis & the mass is about 7cm. It’s been confirmed by a half dozen oncologists/surgeons that it’s unresectable & the general consensus is ruling in favor initiating Gemcitabine. Wake Oncology indicates that Microsphere is not an option due to elevated bilirubin levels of 15.8, & Sloan-Kettering notes that size and proximity to a major vessel prevent candidacy for Radio Frequency Ablation. Duke further notes that my fathers history (a few years back) with colon cancer would potentially eliminate his applicability to a trial protocol. The majority of others have also confirmed that radiation is too risky or not an option. Do you have any other thoughts/directions/treatment plans, based on your experience & the aforementioned information, that we should be considering?”
Thanks again Wayne for the note. I hope that Dad can gain some strength back & can continue with the chemo, & that the radiation isn’t too rough on him. It’s all happening very quickly…
Best,
TessIt was your post Wayne, & correspondence with Raye that prompted us to initiate contact there at Mayo. Thank you for that. It is good to know that your experiences suggest there are potential opportunities there…
I corresponded with these docs via e-mail, they never saw Dad’s records or reviewed his imagery. Their decision that Dad is not a candidate was based on what I told them of his condition: It’s intrahepatic. There are no mets, it’s locally advanced, he’s two weeks into the original diagnosis & the mass is about 7cm, and has elevated bilirubin levels of 15.8.’ Perhaps it was the combo that inspired them to deny him & chalk it up to the ‘intrahepatic’ class.
Good luck to others and thanks for the additional insight Wayne. I was left to believe that this was not an option at all for intrahepatic cc, I’m glad to learn otherwise.
Best, Tess
Thank you for your kind words Carol. Every scenario is different, for every person… it’s so hard to predict anything and there is hardly a ‘norm’, from what I”ve been able to gather in these last couple weeks of being part of this community. We too are hoping for a resection, and taking things one day at a time. Charlie certainly beat the odds! Thanks for sharing.
Warm regards,
Tess
