1

(9 replies, posted in In Remembrance)

LOVELY WE KNEW HER ON EARTH. LOVELIER STILL WE HOPE TO  MEET HER IN HEAVEN!

2

(15 replies, posted in Pain Management)

Jane, my husband had experienced the same thing.  It comes with the progression of the disease.  Drinking protein drinks somehow helped him.  Edith

Richard,

Two weeks before my husband died, we made our last trip together to Virginia, where his family is from (we live in MD).  He knew that it would be his last time so I finally agreed to make funeral arrangements.  I never liked it but it's something I had to do,  to give him the best of everything 'till the end.  He had picked out the songs that he wanted to be played, Bible verses to be read, the church, pastors, pall bearers if his navy friends wouldn't be able to attend in uniforms (which they did, flew to Va. from all over the US).  I asked his friends if they could speak at his memorial service and some of them volunteered.  My husband has 4 sisters and all of them were in-charged of something; catering, making sure that all the pall bearers were coming in uniform, flowers, every detail needed.

For insurance, IRA's it will be paid to the beneficiary, it doesn't matter what the "will" states and if the benefiacy is a minor, the money will go in a trust.  If your dad and mom owns a house and the title has "right of survivorship", it will go directly to your mother.  In the state of Maryland, you don't need to open up a estate if the assets is less than $30,000, all you need is a "Letter of Administration" which you could get from your court house (cheaper than talking to a lawyer).

Social Security pays $255 (think it's called "burial benefit").  Get at least 10 copies of Death Certificates, you would need it.  Close all accounts; bank, credit cards, etc. 

It has been 4 mos. since my husband passed away and I'm still doing paper works. 

When that time comes, it would be very difficult to function but you have to be very strong, don't fall apart.  With the help and support of my sisters-in-law, we were able to give my husband a very beautiful memorial service. He would have been proud.  I fell apart coming back home to an empty house (My husband was buried in Va) but I had to get myself together for my girls and I had to start making calls!

Agencies to call; Social Security, Insurance agents, Banks, IRA's, for militaries- Department of Veterans Affairs, Dept. of Defense, Tri care, SGLI, VGLI,  get a new ID card.  Get the "WILL" probated if needed, call your court house for help or hire a lawyer.  Talk to your CPA, regarding taxes.  For spouses that are left behind, if the husband or wife was listed as your beneficiaries, you have to make changes.   A good book to have is Suze Orman's "Women and Money". 

Edith

Patrice-My husband did suffer depression and it was his oncologist who talked him into getting help.  You might want to talk to your oncologist about it.  As of wanting to shave,  I just let him grow his beard or there were times when I offered to shave him (bought him electric shaver), telling him that he didn't look presentable anymore for his "cute" oncologist.  Turning the heater up  in the bathroom, getting his change of clothes ready might get your husband moving. 

Take care,  Edith

Hi Jeff,   
In my husband's case,  after he submitted all the application forms, medical records, etc. , Social Security set up an appt. time over the phone which they were supposed to call him  but he ended up calling them because we didn't find out that our land line was dead, a few minutes before his appt. (he power washed the house the day before).  He didn't qualify for SSI because I was still working then but he and the girls received SSDI (got paid retro).  I know it's hard,  just dealing with this disease but I hope everybody will find some time to get all the financial resources that we are entitled to and Social Security is one of them!  I've always wanted to say that being in the military is a big blessing!  They took great care of my husband, medically and financially.  Now that he's gone, the military is still taking care of me and the girls.  They assigned a Financial Adviser who's going to work with me at their expense. (A great comfort but not when they make me a financial plan 'till I'm 90 yrs. old!)

I've been a great fan of yours since your first posting on this site.  Your courage, determination and faith is unbelievable! 

Take care, always! 
Edith

Social Security also pay for minor children living at home.  My husband never went to the SS office for interview appts.  He had it done over the phone. 

Edith

My husband used to get hiccups after his treatments that would last for a few days.  His oncologist priscribed Thorazine.  It had given him relief from that annoying hiccups.

Edith

When my husband's metal stent clogged up in Feb. '07, a new metal stent  (longer) was inserted in it. Never had anymore problems with the stent until his passing in August.

cksvelasco,

My husband had metal stent and it lasted 16 months before it started to clog up. Signs of clogged stent; jaundice, itching and referred pain on shoulder.
Good luck!

Edith

Kate G

I'm sure, it's hard to find words to comfort others who just had lost loved ones but to say that there is something so "WRONG" losing a younger sister is so insensitive!  I just lost my husband of 19 years a month ago and I know God doesn't discriminate. 

Karen,
To give you a little comfort,  your sister is now in heaven rejoicing!  No more pains!  Reading, "90 Minutes in Heaven"  by Don Piper has given me some comfort I needed and I'm am now reading his latest book, "Heaven Is Real".

Take care,

Edith

11

(5 replies, posted in Chemotherapy)

Pam,

My husband was 39 yrs. old and a year away from retirement in the navy when dx in 2005 with Stage IV CC.  I would find him lying down on the couch or in the computer room with tears in his eyes.  He was in so much  depression that his oncologist sent him to see a therapist instead of giving  him chemo treatment during one of his appointments.  He has been seeing a therapist once a month, taking 3 kinds of anti-depressant since then. He's happier to say the least but has the energy to keep on and not being consumed with sadness. 

Take care.
Edith

Hi Rhonda,

Talk to your oncologist to find the best naseau meds that will work with your husband.  There's companzine that is suppository-it helped my husband esp. on his few months after diagnosis because he was throwing up a lot.  Now he is on Reglan, he takes it 30 min. before a meal.  Our oncologist have always advised us that whenever my husband gets a fever of 100.2, we have to go to the ER, never give him anything to lower his fever down until a test has been done to find out what's causing it.  I know it's really hard but hang in there.  My husband had gone through the same.  There are times that it gets better.  Take care of your self.  If you need to talk more, you can e-mail me; hosk1226@comcast.net
Take care.  Edith

Hi Rhonda,

The internet is loaded with information but I also bought a medical dictionary, "Mosby's Dictionary of Medicine, Nursing & Health Professions, 7th Edition".  It's very convenient to have esp. when my husband is watching tv and I could be there sitting with him, dictionary in hand.  I don't have to be in the computer room every time I need to learn a new medical word esp. when he brings home all the copies of his tests.

Take care,

Edith

14

(8 replies, posted in Introductions!)

Russ,

We are also from Maryland and my husband is getting his treatment at the National Naval Hospital in Bethesda. You can e-mail me at Hosk1226@comcast.net.  Good luck!

edith

Hi Rhonda,

My husband was dx on Oct. '05 at the age of 39.  He had gone through bouts of depression so his oncologist referred him to a therapist; prescribed depression meds and anxiety pills (klonopin).  He sees his therapist once a month, love and support from family and friends and prayers even from strangers my husband talks to, helps him keep on fighting. 

Take care,

Edith ( Hoskins family )

Hi Celia---My name is Edith and my husband was dx with cc in Oct. 2005.  He had laparoscopic surgery the same month.  He was given 6 months to live and was told to spend and enjoy whatever time left with his family.  He is still with us.  Thank God!We live in Annapolis, MD---less than an hour drive from Johns Hopkins.  Let me know when your in town--hosk1226@comcast.net.  You can also visit our blog:  hoskins family.  All I can say is do as much of the crying now, then get yourself ready for the good fight!  Good luck!  edith

Geoff,

I sent an e-mail to Dr. Quillin a year ago when my husband was just dx with cc.  and asked him if my husband could used the supplements.  Since it's  liver disease, Dr. Quillin said to ask my husband's oncologist before taking it.  I guessed, it's a matter of personal choice.

edith

18

(7 replies, posted in General Discussion)

Kathy,

My husband was diagnosed with CC last Oct. '05.  I very much agree with Stacie on Chemotheraphy before clinical trials.  He was given chemo treatments  at the end of Oct. through December which stabilized the disease  and then it stopped working!  We were supposed to go to a clinical trial at the National Health Institute for Sorafenib/Avastin study in February but there was no safe tumor that could be biopsied.  I was somewhat relieved that we didn't make it because of the intensity of treatment and schedule.  Within 2 months, the patient on study would have 4 liver biopsies, countless blood drawing, staying at the hospital overnight every 2 weeks, MRI and PET scans.  NIH gave us an option of waiting for the next study in May of the same drugs  that doesn't need  liver biopsy but I didn't want for my husband to wait that long without any treatments.   If you want to call NIH for the study next month, the Study Coordinator is Virginia Kwitkowski, # 301-402-5640.  You would get in easier if your Oncologist would make the referral as to our experienced.

This website has given me a lot of information on different protocols.  When we went back to the National Naval Hospital in Bethesda, Maryland where my husband is being treated to discuss our options, I was armed with all kinds of information that I learned from this site.  My husband is now on Xeloda/Gemcitabine/ Taxotere.  He is tolerating this better than his first treatment. 

Good luck and my best regards!

Edith
Annapolis, Maryland

19

(10 replies, posted in Adverse Reactions & Side Effects)

Hi Lainy,

My husband gets hiccups for 3 days after he gets his chemo.  Last night he took Thorazine and it did work.  I know that this drug is also used for anxiety and panic attack.

edith

20

(27 replies, posted in Introductions!)

Hi Everyone,

My husband, 39 years old has been diagnosed with Advanced Cholangiocarcinoma on Oct. 5, 2006.  It had spread on his stomach lining and in his lungs. He had ERCP on Oct. 7th,  had Laparoscopic surgery the following week and started his chemo on Oct. 31 and Nov. 1, '05, bi-weekly--Gemzar and Oxaliplatin.

He went to work on Oct. 5, (feeling really sick the day before) so he went  to the ER.   At first, the doctors thought he had hepatitis but after running more tests and CT scan, they told him that he has cholangiocarcinoma, that same day. Life has been changed completely since he came home from work that night!

He is in the navy, stationed at the National Naval Medical Center, Bethesda,MD.  where is being treated.  His oncologists are from the National Institute of Health. He had CT scan on Dec. 20th and so far his cancer is stable.

Best regards to all.  I hope that you will find the best care/cure  and continue fighting this dispecable disease!  I KNOW, I AM!

Edith (Annapolis, MD)

My husband uses Fentanyl patch (50 MCG/HR) for pain which is replaced every 72 hrs.  For breakthrough pain, he takes Dilaudid ( sorry,can't remember the dosage, he has the bottle with him. He's on his way back home from San Diego for the weekend).