New Diagnosis
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@ Heather – I do love this forum also – so sorry that you have to come here also. Such wonderful people so willing to share their knowledge, experience, stories, etc…so very grateful!!! Prayers for your hubby and his surgery. I didn’t get the message from you but I did send you an email with my number. Please call or text when you are ready to talk.
@ Lisa, Suz, & Carl – thanks so much for the prayers – we will take all that we can get!!!
@ Dorien – so sorry abt your hubby. Prayers that he continues to have good response to chemo. I am learning that very little is known abt this awful disease
@ Heather – I do love this forum also – so sorry that you have to come here. Such wonderful people so willing to share their knowledge, experience, stories, etc…I’m so very grateful!!! Prayers for your hubby and his surgery. I didn’t get the message from you, but I did send you an email with my number. Please call or text whenever you want to talk.
@ Lisa, Suz, & Carl – thanks so much for the prayers – we will take all that we can get!!!
@ Dorien – so sorry abt your hubby. Prayers that he continues to have good response to chemo. I am learning that very little is known abt this awful disease. Hang in there.
Blessings,
Susanwelcome–so sorry to hear about your husband (my 44 yr old husband
was diagnosed with stage 4 in march)–it’s a tough lonely battle
you are right!!he also is not eligible for surgery (metas. to lungs and lymphs)…
so we battle forward with chemo–he has had a good good response
so far and we will keep plugging forward.hugs to you from Utah.
DorienSusan,
Our best to you and your husband as you work through both the medical and financial challenges.
Carl
Good luck this week Susan. I’m in this CC battle with my sister. It’s so frustrating to go through all the ups and downs of this horrible disease. I pray for all the best for you guys
Suz
Hey there,
I love this forum, you have come to a great place for support and advise. I sent you a message, maybe we could visit soon. Your husband is lucky to have you!
Heather
Marion – Medical records are now on my list of to dos for Wednesday, thx! I will find out on Wed how MDA works.
Lainy – that’s a great story. I laugh because I can totally see myself doing that too!!
So glad I found this little community. Ya’ll are awesome!!! The knowledge, experience, stories….heart is happy.
Dear Susan, yea for PETS! Don’t know why these Insurance Companies give people such a hard time, as if they don’t already have enough on their plates. Can I make you smile? Teddy was going for his 1st PET Scan. It as a huge Hospital downtown Phoenix, and parking was jammed. There were 2 open spaces and they were reserved for PETS. I said that much be for those visiting Pets! After a long while of circling it dawned on me that meant PET Scans! Ay, ay, Yi! Talk about where your brain goes….Wishing for the best on Wednesday and sending all good juju your way.
Susan….good luck for Wednesday. Susan, this is such a complex disease that I don’t believe anyone is prepared for what’s coming there way hence we just struggle through it.
BTW: make sure to retrieve all medical records. You want to have it in your possession. I don’t know how it works at MD Anderson, but if there is a social worker then you will be able to obtain advice. Otherwise, go to the medical record department, pick up the Request for Medical Records form, and have your husband sign.
Hugs,
MarionLainy – thx for the positivity. It’s so easy to forget that in the mist of this battle.
Marion – Le does have a complex case mgr that was recently assigned, I think I may need to utilize her more going forward. Thx!
I still feel like I’m in a fog most of the time – trying to figure out what to do and where to go. I wish there was a flow chart that says if you are here, go here…Dr. J was able to push for the PET scan and Le is going in on Wednesday.
Looks like they will have to request prior approval every time they do a PET scan. Hopefully it will provide more answers then questions…Susan…..it is one of the worst travesties befalling this country in that a major illnesses can wipe out the faineances of the family. In fact, the majority of bankruptcies are due to non-paid medical bills. Something wrong with this picture?
Susan, some insurance have case workers called “advocates” who will work directly with you. Not that they can make big decisions, but it can be helpful with speeding up the process of approval or denial. Additionally, as has been mentioned, the physician can speak with the insurance representative (most likely a physician) and argue the case for you based on current, available data. Hang in there.
Hugs,
MarionDear SNNLE, try not to think of options as getting smaller, they are just changing to hopefully pave any bumps you hit. For Insurance, they denied Teddy a few times for a PET Scan and the ONC stepped in and got it pushed through. Please let us know what happens at this next meeting. Wishing you the very best and Be Strong!
@ Marion – thx for the links this is very helpful. I may need to contact the manufacturer to see if we can get some type of assistance. Base on our income level (since we both work) we have yet to be able to qualify for any type of financial assistance. I’ve realized that no amount of planning can prepare you for the expense of a cancer diagnosis. In a matter of 4 months we have wiped out our emergency fund and dipping into our retirement savings.
At this point I’m praying insurance will cover the protocol.@ Lainy – Le has a biliary drain tube and not the stent. He’s had the catheter replaced every 4-6 weeks as it clogs up and/or gets infected. My understanding is chemo combo is to stabilize and hopefully shrink the tumors. I didn’t ask if it was palliative. Actually, it never occurred to me to ask that. So thanks Lainy, I will be asking that of Dr. J going forward. Dr. J doesn’t think radiation is the route to go right now because he can radiate the liver but he would not be able to radiate the metastasis in the peritoneal. I’m Starting to feel like our options keep getting smaller & smaller.
Dear Susan I am so very sorry to read about Le’s latest reports. I am not understanding about the PET Scans either. My husband had them every 6 months for 5 years, no problems with Insurance. A few were turned down then the ONC called the INS CO and the PETS were put through. Does Le have a metal stent or plastic? My husband had plastic and unfortunately they have to be exchanged like every 2 – 3 months as they can get infected which seems to be normal with this monster CC. If the Insurance will not cover the Chemo cocktail that Dr. J wants to do you might ask him if another could be comparable, something that is covered. I guess I would want to ask Dr. J if this chemo is Palliative or does it give Le a chance. This is an extremely tough decision for Le to make. While we are not marked with expiration dates Teddy wanted to know from his ONC how long he had with the Palliative chemo vs not having the chemo and then he made up his mind. There is nothing that says you can’t still get another opinion. You go until you feel comfortable in your own gut. Please keep us posted and Be Strong!
SL….depending on your income you may qualify for “compassionate use.” It is best to contact the manufacturer personally. But there is a chance that the insurance company “may” cover the chemo protocol. Your physician will receive reiumbursement notice or if not covered, denial notice.
In re: to PET vs. CT, Percy posted this:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6543and on chemo agents this:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7843and here are a few other postings concerning FOLFIRI/Tarceva.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8386I hope this helps.
Hugs,
Marion
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