• Registered: Sat, 11 Aug 2007
  • Posts: 139

Topic: Update on John

Well the Drs. have decided to try chemoembolization instead of RFA.

They say that with the amount of tumors RFA would kill the liver. I guess this treatment isn't as painful as RFA so that's a blessing.

They're going to do one lobe at a time. Does anyone know how long after te treatment he will be seen by the Dr. for a follow up? God I hate not knowing.

We have Kaiser and you just can't get in touch with a real person unless you're trying to make an appointment. The Dr. didn't tell us anyting except what would happen during the actual procedure.

Any info would be appreciated.

Charlene

2 Reply by Lisa Ann (edited by Lisa Ann Mon, 31 Dec 2007 11:29:30)

  • From: Bath, Pennsylvania
  • Registered: Sun, 02 Sep 2007
  • Posts: 113

Re: Update on John

Charlene,
I cannot answer your Questions, but want to let you know that you are both in my thoughts.

Hugs Lisa

Lisa Ann's Website

  • From: Chesapeake, Virginia
  • Registered: Thu, 17 May 2007
  • Posts: 94

Re: Update on John

Charlene - my husband was seen 3 - 4 weeks after each chemoembolization for a followup MRI. 
Colleen

  • Registered: Sat, 11 Aug 2007
  • Posts: 139

Re: Update on John

Thank you. Today John had to have more blood tests and Wed he has another CT scan.

The Dr. just told me TODAY after getting our hopes up about the treatment that unless his liver enzymes are in order they can't do it because it might kill his liver. I haven't been able to tell John yet. I'm going to make the Dr. do it.

Not only that the Dr.wanted to put John on a pain patch and my insurance denied it, said they should start with Valium first!!!

When i called them to explain valium wasn't for pain and that he NEEDS the patch i was told it wasn't his decision or his problem.

I'm in Hell, my husband is losing ground fast. He's got that sick little voice starting and I think he's getting ascites. His tummy is starting to look like it's bloating up and he's continually losing weight.
I'm in HELL!!!

Please pray for John, please.


Charlene

  • From: Kalmar, Sweden
  • Registered: Sun, 20 May 2007
  • Posts: 1,951

Re: Update on John

Charlene,
I am so sorry you are having problems with the insurance companies. Sometimes they are so cruel. I of course will pray for John and for you as well. Remember to take time for yourself and find a good friend to talk to and share your problems with. We are here of course, but I really think you need and deserve a big tight hug.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope
  • Registered: Sat, 19 May 2007
  • Posts: 142

Re: Update on John

Hi Charlene-I know just where you are with the insurance companies, but you have to keep advocating for John.  The Doctor can appeal the insurance company decision by filling out a form that states what has been used and why the drug is necessary.  There is always an appeal process but you sometimes unfortunately have to hound the doctors to do it.  I send hugs to you and John and hope things turn around for you soon.
Patrice

  • From: New Jersey
  • Registered: Tue, 20 Nov 2007
  • Posts: 306

Re: Update on John

Charlene,
I feel your anguish and pain.  I pray for both John and you. 
Karen

Wishing all God's blessings!
  • JeffG
  • Moderator
  • Offline
  • From: Kansas
  • Registered: Mon, 16 Oct 2006
  • Posts: 1,242

Re: Update on John

Charlene.... I'm sending a prayer of support your way!  Also If you give me the name and number, I'll call and enlighten your Insurance company.   I'll give them a real vivid picture of what it's like to be in pain and fighting for your life.  Valium whats wrong with them people!  I'll advocate for John in a heart beat! Free of charge! No approval needed here! I can certainly understand your frustration.
God Bless,with a big hug for you both!
Jeff G.

Take it to the Limit,One More Time! (Eagles)
  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Update on John

Charlene,
It is my understanding that it is the physician

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
  • JeffG
  • Moderator
  • Offline
  • From: Kansas
  • Registered: Mon, 16 Oct 2006
  • Posts: 1,242

Re: Update on John

Charlene... I agree with Marion about the doctor advocating for their patient.  However 99.9 % of the time you'll need to inform his or her nurse/s what you need  and they'll put the letter of support together for the doctor's signature.  Usually your doctor is so overwhelmed with patients that they rely heavily on their nurses to cover them with administrative requirements to make things happen.  Also, the nurses can fax or call your Insurance company for you to provide the justification needed.  I'm so sorry you  and John are having this problem.  I've found working with the Oncology nurses have been of great benefit with making things happen sooner and more effectively.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)
  • Registered: Sat, 10 Mar 2007
  • Posts: 42

Re: Update on John

Charlene -like Colleen's husband my husband Tom has had 4 chemoembollizations. At Georgetown they do an MRI 6 weeks after the procedure, and every one has had different results and effects. The good news is that it really can destroy a good protion of the tumor, the bad is that they may need to do it more than once especially if there are several tumors on the liver. As for the advocacy issues -there are advocacy health support groups in every state, but your doctor's office needs to be on the case as Jeff says. We pushed back very hard, and finally got them to approve chemoembollization which was at first denied to us for 2 mos. Push back and see if there are outside groups that can help. Good luck, the process is harder than the disease sometimes.

  • Registered: Fri, 14 Sep 2007
  • Posts: 35

Re: Update on John

DEAR CHARLENE.
I AM NOT SURE IF HE IS READY FOR THIS, BUT HOSPICE IS ALSO AN OPTION IF HE IS NOT GOING TO BE A CANDIDATE FOR TREATMENT. THEY ARE IN CHARGE IF PAIN MANAGEMENT AND MEDICATIONS AND WILL DEFINITALY GIVE YOU/HIM THE MEDICATIONS HE NEEDS TO TREAT HIS PAIN. ALSO YOU MENTIONED THAT HE MAY HAVE ASCITIS. THIS IS A PROBLEM THAT CAN CAUSE INDIVIDUALS A LOT OF PAIN AND SHORTNESS OF BREATH. YOU MAY CONSIDER TAKING HIM TO THE HOSPITAL AND HAVE SOME OF THE FLUID PULLED OFF BY A PROCEDURE CALLED PARACENTESIS.
LET ME KNOW IF THIS IS HELPFUL!
LANA

please don't shout in all caps

  • Registered: Wed, 06 Sep 2006
  • Posts: 107

Re: Update on John

Hi Charlene,
Just read of your problems with insurance and getting doctors to communicate with them.  We have had some of that too.  We will pray for both of you.  How can anyone get through this without a God to pray to.  I know we couldn't.  Sometimes we don't know where the strength comes from and then we say, Oh yeah, people are praying and that is grace that is getting us through. God bless and don't give up.  Mary Anne

  • Lisa
  • Legend
  • Offline
  • From: Stanwood, WA
  • Registered: Sat, 08 Sep 2007
  • Posts: 813

Re: Update on John

You and John are in my prayers, Charlene.

Lisa's Website