1

(14 replies, posted in General Discussion)

Thanks again for all of the support and well wishes...I KNOW it makes a difference. My Dad has a mild case of diverticulitis, but his attitude and demeanor has improved drastically. And why not....he has a new lease on life smile They dropped him down to PET scans every 3 months, but we can handle that.
Life is good!

2

(14 replies, posted in General Discussion)

We have had some incredible news! My Dad went in for an endoscopy and colonoscopy (at the same time, poor guy!)  What they found were BENIGN cysts! They had a little trouble getting around with all of the surgery, but said everything looks great! Such beautiful words.....still cancer free.
Thank you again for all of the wishes, prayers, and support. I know they are helping my Dad. smile

3

(134 replies, posted in General Discussion)

Godspeed, Kris. I know you are dancing among the stars. Hans, my heart goes out to you. Thank you so much for sharing. The love never dies, you take it with you.

Janet

4

(14 replies, posted in General Discussion)

Thank you for the encouragement. Will post as soon as we know anything at all. His Drs already met at their "tumor" board to discuss this, so I imagine things will go fast..

5

(14 replies, posted in General Discussion)

Been awhile again. My Dad had a PET scan last week, and a brand new "thing" lit it up. It's been 5 months since his last clean scan, and this thing measured 1.6x1.3 cm. Sitting in the common bile duct. Pretty darn big for being less than 5 months old.  We're trying very hard not to panic right now. My Dad has finally been doing so well, and his bloodwork is great. We're holding on to the hope that this is NOT a reoccurance. ERCP, colonoscopy, and biopsy scheduled for the upcoming days. My Dad was devastated by the news, as were we all. Have to wrap our heads around this, and gear up for another fight

Damn....

Hi Margaret,
So happy to hear that Tom is feeling better! Hopefully those infections will become a thing of the past.
Hang on to that fighting spirit, and keep on kickin!

Janet

Great news! I had to smile at the "only gemzar" comment. I remember when my Dad's oncologist called one of the drugs "chemo light". smile

Hope the good news keeps on coming!

Janet

Dear Lainy
SO many of us will be with you in spirit tomorrow, including Teddy. I pray you will find comfort and peace, and be filled with the warmth of all of the love flowing to you. I'm betting you'll see quite a few light issues tomorrow!

Hugs,
Janet

Roxy, my Dad is 79 too. Just find someone who knows how to deal with this nasty disease. For us, we also wanted someone as aggressive as we felt! Use the resources and experiences of people here....they are a Godsend!

Best wishes to you and your family

Janet

10

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

Roxy,

Surgery was the answer for us. Had to find the "right" surgeon, and Dr. Hemming at UCSD fit the bill. We tried chemo, but my Dad is in that percentage of people who simply cannot tolerate it.

Best of luck to you, and please ask any questions you want!

Janet

Best of luck, Kris! Blast Leroy to oblivion smile Safe journey

Janet

My heart goes out to you. Godspeed, Greg! You are safe now.

Hugs, Janet

Kim,
Thanks for sharing your story. It's so similar to my Dad's! My best to you for continued health and a cancer-free life smile

Janet

14

(9 replies, posted in Introductions!)

Hi Libby,
Sending you email. Thoughts and prayers to your Dad and you!

Janet

15

(186 replies, posted in Hospitals)

About time I added our miracle workers

Dr. Alan Hemming Surgeon, UCSD San Diego

Dr. Paul Fanta, oncologist, UCSD Moore's cancer center

Dr. Thomas Savides, ERCP, UCSD San Diego

And our unsung hero, the man who suspected klatskin tumor immediately and sent us down the right path,

Dr. Sam ElSheikh, Gastroenterologist, Grossmont Hospital

It's been awhile again since I've posted.It's been almost exactly a year since I first posted here. I've very happy to say that life has settled down! My Dad just went through CT and PET scans, and came up completely clear. He's finally looking like his old self, putting on a little weight, and resuming his life. And one very odd thing....after losing every spec of hair on his body to chemo, the hair on his head is growing back. NOT just growing back, but he has more than before he got sick. AND it grew in dark brown!!! We keep teasing him about using Grecian formula. Late January he has an appointment with the oncologist, and we'll discuss removing his port.

We all feel so incredibly lucky to be here. His Drs. just smile and laugh when we come in for a check-up. They only met him after this horrible cancer struck, and are astounded at his good health these days! I pray it continues smile

I want to say thank you to each and every one of you here. You gave us hope and courage to fight, and all of your stories gave us strength. There IS hope to be had...whether it be in tiny doses or great big heaps. Keep snatching it and hang on tight!

Eternally grateful

Cinnamin

17

(54 replies, posted in In Remembrance)

Dearest Lainy,

You and Teddy have given me hope from day one, and now you have shown me the true beauty of love. Teddy is at peace, and I wish the same for you and your family. Godspeed, Teddy, you are tall enough to reach the stars. Bless you Lainy...may you take comfort in all of the love flowing towards you

Janet

18

(17 replies, posted in General Discussion)

My Dad experienced horrible hiccups.....he had them for hours at a stretch. And then we discovered that taking a drink of pineapple juice took them away! You can buy it in small cans, it stores forever, tastes good, and best of all it works!

Best wishes,
Janet

19

(28 replies, posted in Introductions!)

Hi Steve,
I'm so sorry Nancy and you are going through this. My 78 year old  Dad was diagnosed in November last year, and has since gone through resection surgery and started chemo. We are in San Diego also, and have the most tremendous Drs at UCSD. As for how Nancy feels about asking questions, I get it. My Dad was the same way. The first time he looked up cc on the internet, he was so depressed. He refused to look again, and left all research up to me. All along I tell him what I've discovered, but always with a positive slant. I go to all of his appointments with him and my Mom, and always tell them ahead of time what questions need to be answered. I AM on his directive and I'm his medical proxie, so his Drs are used to me asking questions.

Dr. Hemming is truly a miracle worker at UCSD. My Dad was initially told no surgery, then Dr. Hemming stepped in and said yes! He and his main nurse Doug Elmore have always gone above and beyond. They spend as much time as you need answering questions, and are always reachable. Doug even returned a phone call within 5 minutes when he was out of town doing army reserve duty!

You can read our journey under my name. Bottom line is....NEVER give up hope. Don't stay away from consultations, she needs you! Let Nancy be your guide. She'll let you know when, or if she's ready for the tough questions.
Feel free to contact me. Take care, and know that a whole bunch of people are pulling for you and Nancy

Janet

Had our appointment today. Great news, his ANC is WAY up! We decided to proceed with chemo, just take out the oxaliplatin. Going to wait for 2-3 weeks so my Dad can recover a bit. If he still has issues, we have more options. Dr. Fanta, our oncologist, made my Dad feel good about continuing treatment....which is awesome! He was ready to throw the towel in and say NO MAS. We the family want to give him the best possible chance, but it is ultimately HIS decision.

What a journey.......thanks again for taking it with us smile

Thanks, Marion. My Dad is certainly a trooper! We completely agree that he needs a break from chemo. His body needs some serious healing. During this recent hospital stay, the Oncologist told us that roughly 8% of people cannot tolerate chemo and have this extreme reaction like he did. They believe he falls in this group. Tomorrow we go in to talk about this.......will be interesting to see what they have to say! Regardless, I know we are not keeping that infusion appointment this Friday.

Will update after tomorrow!

First off, my apologies for taking so long to update. It's been quite the ride, as you all well know!

To recap so far, my 78 year old Dad underwent surgery on Feb. 3rd with the GREAT Dr. Hemming in San Diego. 3/4 of his liver was removed, along with the gall bladder and bile ducts. Intestines, bowels, and anything else in the immediate area was rerouted, resected, and generally messed with. He stayed in the hospital for a couple of weeks, and home health care for a few more. A lot of complications arose from a rogue infection he picked up in the hospital.

We met with our oncologist and decided to proceed with chemo. Even though my Dad had clean margins, Dr. Hemming told us that if this crap returns there's nothing left to operate on. So.....a beautiful clean PET scan and wonderful blood work gave us the go ahead. Our oncologist sent my Dad's tumor to a geneticist to figure out the best course of action. In his words, " We want to give you a better chance of no re-occurance, not kill you". They came back with 5FU, Oxaliplatin, and avastin. Decided to hold off on the Avastin because of the side effects. His first infusion went okay....have to say the port was a Godsend! For the first 48 hours his only side effect was hiccups. We discovered that pineapple juice helps tremendously...who knew??
By day 7 my Dad was feeling like he was run over by a Mac truck. He hurt everywhere and lay in his bed for 3 days. The weight that he had so painstakingly gained back went away. By day 11 he was feeling okay, but his next infusion was only 3 days away. His bloodwork came back kinda iffy, but they decided to go ahead with his next treatment. Here come the hiccups!
Day 4 hits, and my Dad is so tired he can't function. This prompts an ER run, where we stayed for 7 hours. They requested a return the next day for more bloodwork, which we did. Day 6 arrives bearing a temp..BAD news. The rapid rise sent us back to the ER. More bloodwork, and we learned some new terms.
Neutropenia and  absolute neutrophil count (ANC) were the terms being tossed about. He was admitted to the hospital. Bring on the antibiotics!
An ANC of under 500 is considered critical. At admission my Dad's was a whoppin 33, and continued to drop to a paltry 4. Neupogen was administered. My Dad slept, and kept on sleeping for 2 more days.

So here we are. We brought him home yesterday when his numbers rose to acceptable levels. He's pretty darn tired still. We have an appointment with the oncologist Monday. He's scheduled to resume chemo next Friday, but there's just no way that is going to happen. SOMEthing needs to change, because he can't go through this every 2 weeks. He's back down to 140 (they want him around 170) and boy is he angry! Right now he says that if it comes back, oh well....he doesn't want to go through life like this! I totally get it.....chemo has not been nice to him. We will talk to his Doc, see if we can change things up so he doesn't end up in the hospital every 2 weeks.

I just have to say.....I am constantly amazed and in awe of the people I see in the infusion center. These people are the sickest you can be, yet still have time for a quiet smile. Such dignity and grace....I am just stunned by your spirits. I pray for a cure and good health for all of you

Hello and welcome to the group!Sounds like our Dads are in about the same spot. My Dad's surgery was on Feb 3rd. He also has clean margins and clean lymph nodes. Chemo and/or radiation is being set up for my Dad. We asked his surgeon what HE would do, and he flat out told us that if it were him, he would go through chemo. As he said, IF the cancer came back there is nothing left to work on surgically. We feel extremely lucky that Dad was able to get through surgery, and we had already decided that chemo/radiation would be our next step after surgery. We had a check up today, and will meet with the oncologist next week to start whatever treatment they think best.
Best of luck to you and your family! Not an easy choice, but I know whatever you decide will be right smile

24

(13 replies, posted in General Discussion)

Hello Sharon, My Dad's feet and legs swelled right after his surgery. His feet were so swollen they turned purple. He was also given Lasix, but I'm not convinced that's what took the swelling down. I actually massaged his feet a couple of times a day, and that brought him some relief and took the purple out. We also used the Teds...support tights for his legs and feet.

Keep us posted, and best wishes to you and your husband!

Janet

25

(7 replies, posted in Introductions!)

Holy cow..........so much to deal with!!! Hang in there my friend, you've found the BEST place for support and answers. I hope you keep us updated on your Moms. Warm thoughts and prayers to your family

Janet