1

(4 replies, posted in General Discussion)

Pam,
Thank you.  Sorry for the delay in responding, but we just returned from a week at the beach.  We are seeing Dr. Michael Morse on Wednesday so maybe he will have somthing else for Roger to try.  He is very tired since we we returned but I think that is due to his trying to keep up with all my family at the beach.  I am praying for a miracle.

2

(4 replies, posted in General Discussion)

We met with the doctors today to review the results from the CT Scan taken on Monday.  The news was not the best.  Roger has 3 additional tumors that were on his last scan and have grown since the last scan 9 weeks ago.  His major tumor only grew a little.  We are going to meet with a Doctor at Duke on July 7th to see if they have anything new and if not our Doctor here said we could try Nexafa.  It has the same side affects as Xeloda but with the potential of a Stroke or Heart Attack.  Has anyone tried Nexafa or Sorafenib?  If so could you share your experience?  We feel very blessed that the Gemzar and Xeloda helped for 17 months but would like to have many many more.

3

(10 replies, posted in General Discussion)

Bob,

Once my husband was diagnosed, I think it took us at least 3 weeks to realize what cc meant.  We went to our first appointment with a list of questions but our number 1 question was what options are avaliable. Then we started researching, had a second opinion and decided on a resection.  Unfortunately they were not able to do the resection and knew Chemo was the only option other than doing nothing which was not an option for us.  I have those questions if you would like I will be glad to email them to you, but honestly during our conversations with our doctor we came up with many more questions and still come up with them.  I will tell you I have visited this site many times in the past year but just joined last month and the information and advise you get here is THE BEST.

Good Luck and you are in our prayers.

4

(2 replies, posted in General Discussion)

Yesterday we received Roger's scan results which was "everything is stable"  and we would continue with his current treatment.  Roger swelling seems to have decreased some but he still has it.  While the doctor was checking him out he said he heard an irregular heartbeat and we needed to see our primary care doctor and he would probably send him to a cardiologist.  Has anyone had this before?  I am afraid it is just another hill of this illness.

5

(8 replies, posted in Chemotherapy)

srs74,

My husband has experienced the same thing as Suzanne.  Roger was given a perscription for Lidocain and Prilocaine Cream (it comes in one tube) that he puts on 1 hour prior to Chemo and like Suzanne, we put Glad Press and Seal over it.  It really does help. 

Good Luck and let us know if this works for her.  Our prayes are with you.

Julie,
My husband is on his 19 session of Gemzar and xleoda.  He is on a 2 weeks on 1 week off plan.  On is 2 weeks on he receives Gemzar once a week and takes xleoda 2 times daily, after breakfast and after dinner.  That and alot of prayers is working for him now.  There are side effects but his have been minimal and the ONC is great at helping us work thur them.

7

(22 replies, posted in General Discussion)

Jeff,

I think that is normal.  When Roger was first diagnosed and surgery was performed unsuccessfully here, we asked our surgeon about MD Anderson and he agreed to help us get into MD.  The one thing they told us was it could take a few months and Roger could not be on any type of Chemo or they would not take him for sure.  Roger's records were sent to MD Anderson and it was about 8 weeks when we received a call stating they were setting him up for an appointment.  Unfortuanatly in 8 weeks the tumor had grown so they could not performe the surgery either.  My suggestion is to see if you send his records to MD Anderson, can he continue with the Chemo or does he have to stop it until he hears from MD Anderson.  Also if he goes to MD Anderson, once he gets there he will go thru every test he has already had so be prepared.  I have heard alot of excellent things about MD Anderson and our experience was great other than the fact I wish we had went their first.

8

(13 replies, posted in General Discussion)

Wow, Thank you to eveyone.  I have visited this site many times during the last year but never could quite bring myself to join but last night I was led to.  The support is overwhelming !!!!  mlep0416, thank you for the laugh whch I greatly needed...:)  Roger is on oxicodone for pain but only takes 1 or 2 a day.  To our knowldge Roger is not a diabetic but I will ask our medical doctor to check that.  I am going to check with his Oncologist tomorrow and request a pet Scan just to see if there are other issues that could be causing the swelling as well as check on getting the teds.  Thank you all again and know each one of you are in our prayers.   I feel like I have found another family....

9

(13 replies, posted in General Discussion)

My name is Sharon and my husband was diagnosed with Cholangiocarcinoma in October of 2008 and scheduled for a liver resection in November of 2008.  Unfortunatly after 11 hours of trying to remove the tumor they were unsuccessful. In January of 2009 we went to MD Anderson in hopes they would be able to perform the surgery sucessfully but after many test, they determined they would not be able to do surgery. Later in January my husband started Chemo (Gemcitabine) .  At that point we were told he had a little over 9 months according to medical information, but praise the Lord, he has made it 13 months and we truly feel blessed.  Up until the past month the turmor has been stable or had not shown significant change. He has had the normal side affects of weakness as well as pain and discoloration of his feet.  Other than that you would not know he was sick.  His last CT Scan showed a spot on his liver and since them we have noticed many changes.  At times he has trouble remembering and some night sweats but the most concerning is the swelling.  He is having swelling in his feet, legs hand and face which has been going on for about 4 weeks but seems to be getting worse.  We saw the PA at the Cancer Center today and she gave him a perscription for Lasek and stated he may need to have additional test in the next few weeks if the swelling did not go away.  Has anyone experienced this?