Topic: Hi

My mother has been through 2 weeks of ongoing procedures to reduce her biliruben count and rid her of jaundice. She now has 2 internal stents and will be going to Duke University this Thursday for more testing to see if she is a candidate for surgery. My family has been through alot this past year...my step-mother just finished her chemo/radiation treatments for breast cancer, we lost my step-father this past March, and now we are watching my mother go through this. She is 63 and very healthy up until this point. I am very scared and am trying to do all I can to keep her spirits up through all of this. My prayers are she is a candidate and the surgery will remove all the tumor. We are also trying to figure out how to pay for all of this. She worked part-time with minimal health insurance. All of her savings was put towards my step-fathers outstanding medical bills/funeral expenses. Can someone guide me in the right direction... it is all so overwhelming along with having to work full-time, and take care of my 2 year old.
thank you and keep my mother in your prayers.

"Faith is the substance of things hoped for, the evidence of things not seen."

Re: Hi

Carrieann,
Bless your heart. You will be in my prayers, as will your Mom and family. Do not give up hope. Duke is a wonderful hospital. Check with their social service dept. for financial aid. Pharmaceutical companies also have programs to help.
                       Anne

Re: Hi

Dear Carrieann,
You poor thing - all that you and your family have been through! Anne's advice about getting some financial aid is invaluable - maybe the hospital can help you, as she said. I know there are other people who have had help in this area, so they may answer more specifically.

I lost my mother to cc when she was 64, my daughter was 4. My stepfather died 4 years before her and we were still grieving him, then my father died a week after my mother. So I know what you're going through, somewhat. Take some time for yourself in any little way you can, and maybe see about getting some therapy - this is a lot for one person to handle, and it's too hard to do alone. Do you have any siblings or a good support system, a shoulder to cry on?

My heart goes out to you and I'm hoping and praying your mother is a candidate for resection, which would make for a very positive prognosis. Keep us posted and we'll send our prayers and good thoughts your way-
-Joyce

Re: Hi

Big hugs to you and your family, carrieann.  No one should have to walk this road.

One organization that assists with medical bills is The Patient Advocate Foundation.  http://www.patientadvocate.org/  They have patient advocates that can help you negotiate with hospitals on the bills, and also find bill pay assistance.  They do not currently list bile duct cancer as one of the cancers they help, but we're in talks with them to expand their focus to include bile duct cancer.

Additionally, there are many trials that are sponsored by the relevant pharmaceutical companies.  It's possible that a pharmaceutical company may pay for the majority or all expenses associated with a clinical trial.  You would need to speak with your oncologist further about this issue, and he/she can give you some good direction.

30-something caregiver

Re: Hi

Dear Carrieann,
also, some pharmaceutical companies follow "compassionate use" which, should your Mom fall in to the bracket allow her to receive chemotherapy free of charge.  The oncologist will know about this and will request it for you.  Keep up your spirits.
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hi

Thank you everyone for your replies and advice. My mother's stents started failing last week, they admitted her, removed the stents and placed an external bag. This apparently started draining "too well", she was ridding more than she was taking in, thus dehydrating her. Her count started going back down yesterday, so they released her and she is back home for the time being. I have contacted the American Cancer Society, they have assigned me an advocate and gave me some numbers to call for financial assistance. They also informed me not to talk with the hospital social worker, because if I do, then my advocate wouldn't be able to assist us?? This is way too confusing for me...just want to find help with paying the bills that are now coming in without my mother losing her house in the process.

"Faith is the substance of things hoped for, the evidence of things not seen."

Re: Hi

Hi CarrieAnn,
    I don't understand why they would tell you to not talk to the social service people at the hospital. They were the ones that got my husband's problems taken care of almost immediately. They got the Drs. to sign the paperwork for him to be given disability, they told me everything I needed to do to qualify him for the ABD medicaid and went through everything step by step. Your Drs have to initiate the paperwork and then you have to call Social Security to set up a telephone interview. They were very helpful and sympathetic and with this disease your mother will be accepted right away. They will then get your mother on SSDI or SSI and she will receive a monthly check. By being given disabilty status she will qualify for Medicaid for the Disabled. In 2 + years she will then be able to be on Medicare. Medicaid will exempt her house and 1 vehicle. They do drastically limit your cash assets so everything such as savings, IRAs etc. must be cashed out.You really must pursue this as quickly as possible as her advocate before the bills pile up. Medicaid will go back three months and pay those bills if she would have qualified financially at that time.We only had one week that they wouldn't cover because I was able to get all the paperwork together and everything cashed out and in order. It took a lot of phone calls and stress but at least we were able to get things covered quickly. I was able to work with the hospital for the one uncovered week because it was a doozy! Almost $40,000 !!  One thing you have to understand is that there is a lot of misinformation out there. You need to get the Social workers and Drs together immediately to send the paperwork in and get the process started and call your local Soc. Sec office to step up a telephone interview. You should also contact Job and Family Services because they are the ones that will handle Medicaid. As soon as your mother's disability is approved she will qualify for coverage as long as her income is low or non-existent. Good luck and let me know if I can help in any way. I feel like I know more about this then some so called "experts "because I've been through so much and for over 2 years now! Best wishes!  Mary

Re: Hi

Are all states different?  In North Carolina, Charlie had to wait 6 months to get his 1st disabilty check.  The only thing they would start the checks immediately for were ALS and a couple other diseases. 

Carol

Re: Hi

I suppose there may be a difference between states. Tom was granted permanent disability within one month of his application and then they went retro active to the first of July. They said he was disabled as of June 24 when he was first admitted and diagnosed but started his payments from the first of July. I think we got the money deposited for both months around the end of August. I went to a lawyer that gave free consultations about SS disability claims and he gave me the best advice of anyone. HE said to start making calls to your congressmen and Senators etc to try and get this fast tracked. I did and my brother was a close acquaintance with an area congressman and he made calls too. Whether that really helped or not I don't know but Tom's case was fast tracked and approved very quickly and allowed him to be eligible for the ABD Medicaid. As far as ALS it is the only disease that allows you to qualify for Medicare immediately without the 2 year waiting period. I don't know about SS payments. They said somebody somewhere along the line stuck that clause into a bill and it's been there ever since. All I know is that you really have to be on top of things and without an advocate you are in trouble because there is a huge amount of paperwork and  stress involved!!! Mary

Re: Hi

California will allow you to go on state funded disability almost immediately.

SS has a 6 month waiting period, I think.  I'm not sure if you are retroactively paid for the six months.

So it's true that you can go on  Medicaid for the Disabled before Medicare?  I thought I had to pay Cobra for 2 years if I become disabled.  That's good to know.

Re: Hi

You have to qualify financially for Medicaid. My husband was unemployed, we just had our farming business so we were able to qualify because neither one of us had a "real" job. We had to cash out all of our assets except our home and one vehicle and basically limit our income. I would stay on Cobra until your Medicaid is approved.  Mary

Re: Hi

It has been awhile since I posted, but have been reading everyday, if not 2-3 times a day. An update on my mother: She was scheduled for a liver/bile duct resection, bile duct reconstruction July 14th. I can't even begin to tell all of you how excited she was to know they will be able to go in and get the mass out of her, and for her to continue on with a "normal" life. She was scared but determined to get in and out and do more than her doctors would ask of her during recovery. Well, I got a call too early into her surgery, the doctor was out and wanted to talk to me. The cancer has metastasized. She has confirmed spots on her liver and 2 small unconfirmed spots on her belly wall. The surgery was stopped. Her doctor is refering her to Duke's biliary oncologist for palliative chemo and to have her plastic stent removed and a metal one inserted. I hate that word "palliative" addressing the symptoms, but not removing the cancer. I don't know what to say or do anymore. They are giving her the average of 9-12 months, but could be up to 2 years. If you were to look at her, you wouldn't know anything was wrong. The only external symptom I see, is her getting more tired as the day goes on. I have been researching juicing/cleansing, supplements and eating raw veggies/fruits. It all makes perfect sense to me, but she doesn't want to hear about it, she just keeps wondering how the doctors could have told her she was an excellent candidate for surgery, and then to wake up and see that only a couple of hours had past since she went in to the operating room. Duke, these are suppose to be some of the best doctors in the country. After months of ct's, mri's, liver protocols, how could they have missed these "other" spots? She is just going to wait and see what is said about chemo. I don't know if she understands it all, and that researching and eating right and doing everything she can do on her own will improve her chances. My biggest concern is that we live in the country, she lives by herself, very much to herself and is home all alone all day until my son and I stop by after I am done with work. She is not the type to ask for help, or go seeking for someone to talk to. All she does during the day that I know of is review her financial papers, filling out the info needed for Disability and Medicaid and every other place we have found to find financial help. This I know is draining her, the little I have done has drained me! What do I do when she won't listen to me, or won't take my advice to heart. I hate for her to be sitting around in her house dwelling on finances, and waiting on what her doctors are going to suggest next. We haven't even heard yet when date for the metal stent to be inserted is yet, or an oncology visit. Seems like they take their sweet time. Time is not what we have right now to waste...

"Faith is the substance of things hoped for, the evidence of things not seen."

Re: Hi

Carrieann: So sorry for all you and your mother are going through. As far as starting the surgery and stopping, my husband had a Whipple (cancer in the bile duct valve) and the doctor told us a few times that he was going in but would abort the surgery if the cancer had spread. He stated that they do not know until they are actually "inside" if it has spread or not. Fortunately for us it was contained. So, it does not surprise me what the doctors told you. We just keep expecting the worst and hoping for the best. You and your family are in our prayers!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hi

Hi Carrieann,
My heart goes out to you and your family. Your mother sounds so much like mine, I know some of what you're going through. My mother didn't want to hear about eating healthier, or alternative treatments either, just waited for the doctors to tell her what to do. She was also a strong, independent woman who wouldn't ask for help or talk to anyone about her fears and didn't want to know what my research turned up. YOUR mother, however, DOES have a fighting chance, which mine didn't. Try to hold onto that, try to make her see that hope, if you can.

You sound like a wonderful daughter -- you are doing everything you possibly can, but there's no way you can force a person to eat their veggies, jog around the block, etc. She will do things her own way, and you can give her advice, but after a while, if she's not going to listen, then you'll just have to let her deal with this in her own way. You can do things like call insurance and doctors for her to try to speed the process along a bit (they took their sweet time with my mother, too, and I made a few of those exhausting calls), but it's ultimately up to her to decide how she's going to face this thing. It's a tough call because she's your mother and you don't want to cross the line and force her to do things, so just being there and being ready to support her in whatever she needs is the most important thing you're doing. It sounds like you're doing just that, and bringing your son over to see her must make her feel so much better - I know it was the one bright spot in my mother's last days to see my daughter.

I'm saying all this so you don't feel guilty that you're not doing enough, like forcing your mother to drink protein shakes  -- if she's like my mother, she would adamantly refuse to even TRY something like that. And that's her choice. My sister is still angry at my mother, because she thinks if my mother tried acupuncture and ate more healthily, she would still be here. No one really knows if it would have changed anything. I still think of ways I could have changed things, but I could never have changed my lovably stubborn mother, no matter how I tried. Some people are set in their ways and/or they are dealing with a  very scary cancer and they seem to be unreasonable in their approach to it. I can't even imagine how scary it must be for them -- it was scary enough for ME as the caregiver. All we can do is try to guide them, tell them we love them, and show them we love them.
I always come out sounding so preachy and I hate it - I don't mean to, I'm really  empathizing with you and with your mother. I hope the financial burden is lessened, because that's the last thing you need right now. And I hope your mother's treatment protocol can be speeded up and it works wonderfully. She has so much to live for and I'm sure she loves you and appreciates you dearly.

Sorry I went into essay mode again - best of luck to you and your mother. Please keep us updated.
Joyce M

Re: Hi

Carrie Ann,

If the doc says chemo is not an option, you might want to see if she is a candidate for photodynamic therapy (PDT), see:

http://www.cholangiocarcinoma.org/punbb … hp?id=1455

Patty

16 (edited by carrieann Fri, 22 Aug 2008 05:01:47)

Re: Hi

thank you everyone for your replies. We have had a couple pieces of good news. We might have a buyer for my mother's house, this has been a big concern for us, we have been having to keep up 2 households and it has been wearing us down. My mother will have the option of moving in with us or finding a small apartment in town. She also has an appointment with Disability today, thanks to MaryLloyd's advice I wrote our congressman and he has stepped in on our behalf to get my mother's application through the "red tape" and approved. So now she will be able to continue with Medicaid. She did question me that if her cancer is inoperable does that make her automatically eligible for Medicare? Does anyone know, I will research today on that. Also, I have gotten her to start juicing with me. We had carrot/beet/apple/flax seed oil last night and she actually enjoyed the taste. This is a start, now if I can convince her to give up the sweets...  smile
Again, thank you everyone.

"Faith is the substance of things hoped for, the evidence of things not seen."

Re: Hi

Hi Carrie Ann,
   I am glad things are getting straightened out. I tried to e-mail you personally but it won't go through. E-mail me if you need any help I can give. She will automatically qualify for Medicare if she is given permanent disability but there is over a 2 year wait. My husband is just going to be eligible Dec 1 and he was given permanent disability status July of '06. SO you will have to continue Medicaid until then.  Keep up the supplements and everything you can to help her immune sysyem. You can read about some of the things my husband takes. Will they do chemo or radiation? I would definitely get second or even third opinions. Take care and I hope things continue to improve!  Mary

18 (edited by JeffG Fri, 22 Aug 2008 14:03:01)

Re: Hi

Hi Carrieann,
Your Mom if she was working and have eraned the required 4 credits,what ever determines that, is entiltiled to "SSDI" not SSI, from the date she was unable to work, 12 months retroactive maximum.  Cholangiocarcinoma is considered a terminal disease.  It should not take more than 3-4 weeks at the most for approval and then a six month waiting period before payments begin.  Amount varies depending on an average monthly income of her last 12 years of work.  Once approved for SSDI, she automatically qualifies for part A medicare and part B is an option.  If she already has some type of federal medical coverage she must take part B of medicare as well.  Medicare although you will recieve your card ahead of time,does not become effective until 24 months from her determined SSDI eligibility date.  If she is low income she can apply for and use medicaid or like Kansas a State medical coverage. Here it is called medi-kan. some name like that.  As far as funeral expenses, the Social security provides a ridiculus one time payment of about $250.00. Also , if you go to a Funeral home they can assist you with a interest free life funeral insurance policy ,where you pay monthly premmiums up to the total cost of what ever type arrangements you  make.  Word of caution, funeral homes are competative like everything else and it is wise to shop around for the best price for service to be provided.  Some one posted a week or two ago about some organization that might beable to assist with cost as well.  I would try to  google "funeral assistance" to see what else might be available.   For your infor and it depends on the state you live in the average cost of a basic simple creamation is about $1.200 and for casket and a burial approximately $4000.00 to $6000.00. Now this all depends on what funeral home, what state, type of service, and what ever extras if you go with embalming or direct creamation.  Just visit a Funeral home and I can assure you ,they'll have a cost sheet breaking down the different expenses and they even offer package deals to supposively save you money. Can you believe that? That's about all the infor I can provide you.  If you have anymore questions about meducare I do have the 2008 handbook that explains it all.  Good luck in getting your Mom to give up the sweets.  Although the mayo web site of facts and myths, says sugar does not feed or make your cancer grow.

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Hi

Carrie Ann,
  You might try a 2nd opinion from UPMC (University of Pittsburgh Medical School) Liver cancer center - My husband Butch is here (at UPMC) and was operated on July 15, by Doctor Gamlin, assisted by Dr. Marsh - if you look at the website - upmclivercancercenter.org - you will find information. Dr. Gamlin operated on my husband when he was refused by Mayo clinic - (a laprascopy prior to surgery showed mets to the lower diaphraghm (one lymph node was affected), and they stopped the operation). Dr. Gamlin did it, and took out 3/4 of his liver - right lobe (8.2 cent tumor) , half the left lobe (smaller tumor), reconstructed the portal vein, LONG, LONG surgery, but - he leaves the hospital on Monday. We had many complications, including infectiions, cardiac problems brought on by the infections, fluid on the lungs, etc., but - he and his team brought him through. His liver and kidney functions are all good, and he is getting stronger. In spite of all the problems, he says he would do it again, and we are very grateful to Dr. Gamblin and his team.  They have other options her in addition to surgery, also. Although we had problems with the hospital stay (in particular the dietary department!), with the nursing shortage, I am not sure that we wouldn't have run into this anywhere - but - the doctors were the best - and I would recommend them to anyone - as someone said - just bring your own lunch!

Best of luck to your Mother - keeping on searching for an answer, and God's peace to you all.

Joyce

Re: Hi

Hey Jeff, is SSDI different from state to state?  Last May when Charlie was diagnosed, we went immediately to the local Soc. Sec. office.  We were told there would be a 6 month waiting period and we did start receiving disability checks in 12/07.  2 years from the first time we went, Charlie will be eligible for Medicare.  That will be 6/09.  They told us that ALS and maybe one other disease were the only ones that allowed people to get money immediately and not wait the 6 months.  He went 6 months with no income and we're paying outrageous COBRA rates for health insurance now - waiting for Medicare next year.  Have I missed something? 

Carrieann, so glad for the good news about your Mom.  Take care of yourself.

Carol

21 (edited by JeffG Sat, 23 Aug 2008 07:29:21)

Re: Hi

Hi Carol, No it don't vary state to state it is a Federal program.   You are right, there is a six month waiting period.  I did not apply immediately like you guys. I was out of work for over two years before applying, as I didn't think I was eligible and had met the six months waiting peroid 2 times over under the retroactive max time frame,4 times over actually.  Wish I had been advised sooner, sure would have helped my pocket book to. Medicare waiting period is 24 months and is determined from date of application for SSDI. Retroactive doesn't apply here.  I applied Dec,07 and coverage will not begin until Dec,09. Thanks Carol for catching that on the post; I think it reads right now. I got caught up in my specific situation.  Also, these handbooks are reprinted with changes every year and sent out in the fall. Definitely will want to read to make sure there were no new benefits added that we didn't get told about. I relate to the financial struggle, I lost a whole year of benefits.  The one thing the helped keep us afloat ,was my retiree benefit from the military, of having basic medical coverage, and 50% disability for the rods and screws in my back and a piece of missing hip bone.
Just another unknown chapter of my life.  P.S. I've been reading more... page 80 of the medicare booklet explains how peoples states can help pay for medicare part A and B if you meet certain income requirements and assets.  Your home, car, and burial plots don't count against you.  I believe Mary explained this in and ealier post, that you practically have to stuff what money you have in your hidding place. In other words no big sums in accounts anywhere.  I remember having to do all that with my parents years ago.  Basically the Government expects you to be skint.  In the state of maine I just had to remove my Mom's name from all joint accounts and all was put in my father's name for quite awhile. It's a continuing saga. Things change from year to year as well, so you have to keep on top of it. Well enough about insurance and benefits.  The main thing is, there is no awareness programs when you should apply or what determines your elegibilty to the general public.

God Bless,
Jeff G

Take it to the Limit,One More Time! (Eagles)