How amazing!!!  God is grand! My husband had the whipple 06/23/12, followed by chemo using Gemzar & 5FU (discontinued 5FU after 3 weeks), and along with 25 radiation txs. Then, because of cancer recurrence about 6 months out, he was given 4 months chemo using Gemzar and Cisplatin. After it's completion, a CAT scan revealed that the cancer had grown a smidge, so now, we are in a 3rd chemo using Oxaliplatin and Xeloda. 

I keep telling my husband that he will just have to be my little miracle.  We hope this last chemo cocktail will shrink his cancer, which is in the surgical bed area pressing on the transverse colon. 

Your news is truely terrific.  Stay strong in faith for with God nothing is impossible. Luke 1:37

Husband is currently on Xeloda and Oxaliplatin, 21 day regimen, 2nd cycle. Oncologist may add Tarceva. Imput specifically realted to this chemo cocktail with all three mentioned is appreciated; especially the new one...Tarceva. Thx

3

(7 replies, posted in General Discussion)

KRIS:
We're in Macon, Georgia. Although today it's supposed to be in the 70's, the norm is much colder weather. So I will add the scarf.  We're geared up, just waiting on UPS to deliver the XELODA which will begin same time as the OXIPLATIN infusion.
 
I sure pray this combination of chemo drugs obliterates his cancer. My husband has been a real trouper going through these last 20 months. The Whipple surgery alone was a challenge, and I even "got me some nursing skills" then. Never was able to stomach some things, but that changed quickly, with me adamant about doing all I could for him. I can jump through any hoops put at me to help my husband, and I just pray for good results each time and that my husband's body can have time off to repair. 

Thanks for the nausea info too. The infusion center has been really good to us and I feel they will know about the adverse reaction and anti-nausea med, but I always ask/check!! Thanks.

If you think of any other info beneficial to us, just send it our way please. Keep me posted on your news too!

Have a great Monday!!  AppreciateHelp

4

(7 replies, posted in General Discussion)

To kris000j:
Hey, thanks for your heads-up of what to expect!
I placed gloves and a cap in my belongings to take to chemo next week. I am already planning on his dress for that day considering what I have learned. Your message led me to another question, which I'll ask his doc... if he will be receiving meds via infusion for NAUSEA (like he did before) or if I need to PRE-TREAT for NAUSEA with either ZOFRAN or COMPAZINE.

My actions (when a new chemo regimen begins) makes me think of birds for some reason... cause it's like I am "nesting," and preparing for what I know is ahead. That's just the way I operate. And you have certainly helped! This website is a God-send and imput from others is exactly what I seek.

What GRAND NEWS you had! Your tumor shrunk! I JUST LOVE HEARING YOUR GOOD NEWS, and I immediately told my husband as I feel there is strength in hearing positive news!  Thanks so much; my prayers are with you. Just know how much your message is appreciated!!!!!

5

(7 replies, posted in General Discussion)

To: PCL1029 MODERATOR...

Thank you so much for your reply!  I was not aware of the possible infusion reactions since he was on Cisplatin before.  If he does NOT have a reaction the FIRST time with Oxaliplatin, then am I understanding correctly that he may not thereafter????______

We were rushed the other day at the doctor's office  when all this unfolded on us. We unexpectely had to hurry away to our hospital and have his fluid removed as they were "working him in" their schedule. So I really didn't get to absorb and ask as much as I would have but I will. EACH time we hear more chemo is required it's difficult and receiving unfamiliar drugs at first make you uneasy.  SO I try to keep informed because when we go home from treatments... he's all mine! 

Your information is GREATLY appreciated and needed! I will discuss it with his oncologist and also be sure the chemo nurse is aware of it.  Take care and God Bless - AppreciateHelp

Looking for those who have received chemo using CAPECITABINE and OXALIPLATIN (XELODA & ELOXATIN). We await Xeloda meds and it is my understanding that the regimen will be:
Cycle: Day 1-Infusion of Oxaliplatin;
         Day 1-Also begin 14 days of Xeloda,
         Then the "cycle" repeats.

Husband had Whipple 06/23/10, followed by two other chemo treatments. First was Gemzar with 5FU Infusion  but 5FU was discontinued. Cancer recured in surgical bed and is protected by transverse colon. Next he had CISPLATIN/GEMZAR for 6 cycles, completed 12/9/11. CAT following showed tumors slightly increased. And then yesterday (1/6/12), he required removal of fluid from within the peritoneum... 6 liters!

Seeking imput from those using this same combination. I have printed out side affects to expect for each, but if you have any "tricks in the bag," experience or advice to offer, I do welcome it!!!  Thanks.

7

(14 replies, posted in Good News / What's Working)

In God's Hands...
What a pleasant post to find this a.m.!!! My husband is battling cholangiocarcinoma; he had Whipple last year; now is in his second chemo with regimen with CISPLATIN/GEMZAR.  I tell him all the time that he will just have to be my little MIRACLE. I believe in the POWER of PRAYER, and since FEBRUARY of 2011, I've been making hand-held FANS with Bible scriptures on them and giving them out freely to strangers and other persons battling cancer or other illnesses, along with just one request... to please pray for my husband in his cancer fight. Meeting strangers who so easily understand and relate to our fight has in itself been a blessing. "For with God nothing shall be impossible!" Luke 1:37

32 coupe:
My heart is enlightened in finding these posts! My husband had the Whipple resection done 06/23/10 and now is receiving a second regimen of chemo for the cancer's recurrence.  I too believe "For with God nothing shall be impossible" (Luke 1:37), and I tell my husband quite often that he will just have to be my little miracle from God.  I believe in the POWER of PRAYER.  Your approach and attitude is sooo rewarding to hear and I applaud your 15 years survivorship!!!  YOU ROCK!

My heart is awakened more from your posting and you are in my prayers.  My husband too is in the cholangiocarcinoma battle. Seeing him have to endure persistent symptoms from the Whipple and now symptoms from this second chemo regimen is one of the hardest feelings for me to have. I want to cradle him and take away the pain and hurt especially when symptoms do not respond to the meds. I say to myself at the end of the day when he is resting, "I've done all I've been told to do and the best I can do... I now have to rest so I can begin the fight again tomorrow." But just know, with whatever the future holds, you have held many things in your hands and lost them, but you will always possess your wife and her love.

Dear Lainey:  Hiccups for 4 months!!  WOW, I can only imagine what all you must have experienced, researched and tried.

This is another reason this website is so GRAND...
-it gives access to an UNLIMITED collection of caregivers and patient's experiences dealing with CHOLANGIOCARCINOMA, making it easier for those elsewhere to be BETTER informed.  The people experiencing this cancer FIRST HAND are those in the FIGHT with no gloves on, and they have MUCH to offer.   

Thanks so much for your reply.  I have added your remedy to my ongoing list of side affects/solutions.  In all that I do, I pray all the time that God will strengthen me and allow me to go above and beyond in caring for my husband.  Having seen God's hands at work before in answering prayers many times, I know there is Power in Prayer.

You are right, "Attitude is Everything" and I thank you for you help now, and always.

Thanks you guys....

Gavin:  Thank you so much for the links to the media websites. You are really top-of-your game!  I'll also search out the chemo board for responses concerning the same and learn from them.  I don't use the computer a lot, so your shortcuts and suggestions are really helpful.

Marions:  Thanks for your comments and your suggestions regarding the hiccups and moisturizing balm.  I have already printed out a possible "side affects" list for Xeloda to assist me in caring for my husband.  So as I find solutions or remedies I'm making note of them. If you think of any more, let me know please.

This CHANGE of cancer meds from CISPLATIN to XELODA just sorta blind-sided us.  But we are very grateful that an alternative is available.  I've prayed so much for God to heal my husband and guide all those who assist in my husband's care, that this could just be God's way of answering. 

I am soooo glad to have found this website!  It is really well organized and truely a treasure for caregivers and patients. 

Thank you BOTH for your timely responses!  Take care.

To date, my husband has received only three treatments of CISPLATIN and GEMZAR chemos out of a 6 months chemo treatment plan for cancer recurrence.

Today, we were informed that because there is a shortage of CISPLATIN in our area, and because MEDICARE and the DRUG COMPANY cannot agree on acceptable monies for the product, my husband will no longer be able to get CISPLATIN.  He will instead be given XELODA in pill form.

So...
-Has anyone else had this shortage of CISPLATIN alter their treatments;
-Please comment if you've had chemo including both XELODA with GEMZAR (side affects, effectiveness, etc.).
Thanks!  Located in GEORGIA.

Here is a healthy alternative for ice cream using BANANAS which are a good source of POTASSIUM and B6...

Take RIPE bananas and freeze them with peelings on.

To make ice cream place peeled frozen bananas in food processor or blender.  Add a SMALL amount of milk to aide with processing. If you use too much it will be a SMOOTHIE instead of ICE CREAM.  Another option is "adding a small amount of vanilla flavoring or a sugar substitute."  Processing may be loud at first. 

Try Banana ice cream over easy FRUIT NUT COBBLER:

1 cake box mix - I use VANILLA sugar free by Pillsbury-can use any kind.
2 cans PEACHES in it's own juice (15 oz each), or other fruit.
1 stick butter
1 cup chopped pecans

Drain juice from fruit and place fruit in greased casserole dish.  Mix DRY cake mix with melted butter and nuts.  Mixture will be crumbly. Spread over top of fruit as evenly as possible.  Heat will spread the mixture more evenly as you cook it.  Preheat oven 350 degrees and cook 35-45" in center of oven.

14

(20 replies, posted in General Discussion)

Hey Lisa... You can be on my team any time!!! 

I am a caregiver:
My husband had Whipple surgery in June 2010 followed by chem/radiation; now we've just learned of cancer recurrence x 3 in the surgical bed area and chemo is being doneonce again.  I pray eyes open, eyes shut, anytime, and anywhere that God heals him.  And I pray that God sprengthens me so I can care for him above and beyond. 

Reading your post I can see the strength in YOU.  So just know how inspiring you are to me and others.  God Bless you, "For with God nothing shall be impossible." Luke 1:37

Rob:  I am inspired by your wife's FIGHT with this cancer.  And from reading your post I sense that you both have certainly endured a lot... much, much more than a person can put down in words.  YOU are truely a treasure to your wife and daughter by providing un-ending strength and love for them.

My husband had his Whipple 06/23/10 for extra-hepatic bile duct cancer followed by 5 months of chemo and 25 radiation treatments.  Now, on 08/16/11 we were told of cancer recurrences x 3 in the surgical bed area. So he is once again in chemo.  Although we've only dealt with this cancer about 16 months, I pray all the time for God to strengthen me in mind, body and soul, and that I will go above and beyond in caring for him.  And although sometimes hard to do, I have to tell myself at the end of the day (so I can put my mind to rest) that I've done all I can do for that day...that I need to try and rest now so I can begin a strong FIGHT again tomorrow. 

You have a priceless love for your wife and you are such an inspiration!  Just know my prayers are with your wife, you and your daughter, and God Bless.  I thank you for sharing.

Can anyone tell me if they have used "Probiotics" DURING chemotherapy to assist with side affects?

HISTORY:  During 2010-January 19, 2011 my husband completed his first 5 months of chemo treatment following Whipple surgery.  During this chemo time, he had stomach spasms/cramping/gurgling and trapped gas feelings which could be quite severe.  These symptoms were NOT relieved by using any over-the-counter meds.  A prescribed med called Hyoscamine 0.125 worked initially but then it's effectiveness faded out.  On our own, when the symptoms persisted after COMPLETION of 5 months chemo, we tried DIGESTIVE ENZYMES and they helped.

NOW, because my husband's cancer has recurred and he is once again receiving chemo for perhaps 6 months duration (GEMZAR and CISPLATIN), the above stomach symptoms have returned.  We had his annual VA appointment today,  and discussed using PROBIOTICS instead of digestive enzymes, and were advised to purchase a probiotic with 10 strains.  So I did:  "Ultimate Flora, 30 billion active culters with 10 probiotic strains." I gave him one today and he has had none of the stomach symptoms so far!  He's done great.  I just hope it continues...

But then I started thinking...
-Can a PROBIOTIC interfere when taken ALONG WITH CHEMO, and,
-If his WBC is at 2.1 now are there any reasons not to use PROBIOTICS???
I'll call his onocologist's office on Monday, but I really welcome any imput from this website! THANKS!

17

(13 replies, posted in Chemotherapy)

FRIDAY, my husband and I met with our new onocologist for the second time to discuss proposed plan.  My husband had 3 cancer recurrences in the "surgical bed" area detected on PET scan 08/12/11. 

Between our surgeon and this new onocologist, we have been informed that SURGERY is not an option because of location of cancers; scar tissue, and because the same area was radiated 25 tx previously. It would be most, most dificult to get the margins clear and to do the surgery.

We asked if more radiation txs could be done (had 25 txs last year). We were told it was not an option as it could be toxic.

We discussed another radiation, "radioactive ablation," which uses a needle proble quided by a CT monitor to heat/radiate areas. Not possible due to location of cancers - surrounded by bowels and cannot go through back due to spine, etc.

So Friday, 08/19/11, chemo was begun using GEMZAR/CISPLATIN. Between doc/lab/and chemo txs, etc.,  we were at the doc's office almost all day.  No side affects from this initial treatment so far, praise be to God. 

Last year's chemo regimen was GEMZAR/5FU. The 5FU was not tolerated due to blisters in mouth/throat and was discontinued after 3 weeks.  GEMZAR was given a total of 5 months. Side affects throughout all were  fatigue, several headaches, chills, fever-in which we controlled, and severe abdominal pains. 

CHEMO TREATMENT PLAN NOW, beginning 08/19/11 will be:
Day 1 - chemo with GEMZAR/CISPLATIN
Day 8 - chemo with GEMZAR/CISPLATIN
Then he has a week off. 
This whole cycle will then be repeated for 6 months duration, with a CT scan 4 months into chemo. 
No mention of DEXAMETHASONE being given. We did get ZOFRAN and COMPRAZINE RXs but have not needed them.

I'm now going to research NEULASTA and AVASTIN, after reading here that they are used when counts are low.  Some of husband's counts now are just below normal range. So I've been especially concerned.

We really like our new doc, and she has an aggressive, energetic manner in presenting to us that she will to do all that she can to help us battle this cancer. 

Thanks to you and all other posts! I plan repeat postings as we continue forward.  "A little bit of knowledge is a dangerous thing," so I am in learning mode more than ever to help my husband.

18

(13 replies, posted in Chemotherapy)

Thank you so much for your comments and information.

I wish I had heard of this website 14 months ago.  It has already provided comfort to me, by knowing it is availabile, and in giving me unlimited, updated information about this cancer from others and from all over the world.  So thanks again for any imput that assists with my husband's well being in our continued battle with cholangiocarcinoma!

19

(13 replies, posted in Chemotherapy)

My husband is 14 months post whipple surgery done on 06/23/10. In the past year he received chemo using GEMZAR and 5FU (only @ 3 wks of 5FU due to intolerance), and 25 radiation txs.  His 08/12/11 PET scan revealed three cancer recurrences in the "surgical bed" areas. RAS (radioactive ablation) cannot be done as they can't go through bowel or a spine. So chemo is our only choice right now for this 2nd battle with cancer. 

Today, 08/19/11, we meet with his onocologist for a second time to discuss pending treatment more. My husband will also receive his first chemo using GEMZAR and CISPLATIN today. 

So, any info on your experiences with this chemo combo of GEMZAR and CISPLATIN would be greatly appreciated (what was the regimen plan for administering the meds including how often weekly, how long each occurence; how many months out, etc.)   Thanks so much, in advance.

Thanks for your reply.  I am new at ALL this posting-never done before.  My husband and I just received the news of his cancer re-occurence today.  We have a 2nd opinion set up today with another local facilities' onocologist.  And actually, we don't discuss treatment options with his CURRENT onocologist until THURSDAY.  I'll post results for each and if anyone can provide information with regards to what we are now facing, send it out way.

What is the options when cholangiocarcinoma reoccurs in the "surgical bed" area POST Whipple surgery 14 months ago, and after having had 5 months of chemo including GEMZAR and some 5FU; and 25 radiation treatments?  PET scan has three "HOT" areas NOT located in an organ but the "surgical bed area."  We were told surgery is difficult; that radiation (25 txs done before) is maxed out, so what chemo treatment plan are we now looking to have?