1

(7 replies, posted in Introductions!)

Just wanted to let you know that Cyber Knife is to remove tumor. If the tumor is over 6cm they use radiation to shrink it first. Also must be in an area that CK can reach. Best of luck. It is non invasive and only takes 1 - 4 days of treatment.

2

(7 replies, posted in Introductions!)

Welcome to the best place to be for CC support. You have already made a wise choice with MDA and Moffitt. If surgery is ruled out I would think the treatment plan would depend on your Dad's age. My husband was 73 and very healthy otherwise. He had a Whipple and 3 years later Cyber Knife, all bought him 5 1/2 years. The best thing you can do is to read as much as you can.  as knowledge is our best tool to fight with. We also have a Search site at the top, just type in a word or two and posts will pop up on that subject. You might try "questions to ask". May I ask where his CC is located and his age and does he have any signs or pain? We would need to know a little more what to tell you to ask. You are not alone in this we are one big amazing family. Please keep us updated now as we truly care.

3

(6 replies, posted in In Remembrance)

Dearest Mark's Sis, I am so very sorry to read about Mark. I know he put up a valiant battle but I also know he is now at Peace. He was very lucky to have you on this terrible journey and I am sure he was so proud to call you Sis! When ever you feel up to it we would love to hear about your amazing brother, Mark.

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye
For everything beautiful that you see
will bring a memory of me.

4

(7 replies, posted in Introductions!)

Dear Vicki, welcome to the best place to be for CC support. You are NOT alone anymore! This is a wonderful family with members from all over the world, caring, helping and loving one another. Be assured that you are going to 2 great Hospitals and were very wise to already have an appointment for a 2nd opinion. What has your diagnosis been so far, like location, stage and treatment? We all know that when you first hear you have CC it is like being hit in the stomach with a baseball bat.  BUT, when a treatment starts your fright will turn to fight. You already have a good attitude and it will carry you far. My husband used to say, "now we know what's  wrong, let's fix it!". I want to leave you with a smile: When you say you couldn't even pronounce the word Cholangio it reminds me of my Teddy. He never could say it, ever. One night we went out to eat with visitors from Milwaukee to our favorite Italian restaurant. Teddy was wearing the CC bracelet. By the way he was Sicilian through and through. Well our friend Rocco, yes, Rocco asks Teddy what his bracelet said. Teddy answered, "Oh, that's my Cancer, Angelo Carcinoma". It was everything I could do not to laugh. I thought, leave it to my husband to make his cancer a Sicilian!
Please keep us updated on your progress and again remember you are not alone!

Dear Angel*Mar, thank you so much for the heads up post! So glad for you and wishing you all the best. Your cheering section has begun! When you are able please let us know how you are doing!

Not sure when I am going and coming so guess as long as I am on my way I am OK!

Julie, YIPPEE!  I can just feel the good emotions and excitement in your post and why not? You have been to hell and back and you did it with lots of punch and a good attitude! You are truly a poster girl! I am so very happy for you and I have a feeling all the new scans will be beautiful.  Sending you congratulations, love and another big YIPPEE!

8

(11 replies, posted in Members' Cafe)

Beautiful post and LOVE for Aimee. Been there, done it and I know how you both feel and even in trying times it is so good to be with the right person! You both have that special bond and respect.
I still tell myself that even though T and I were only married 16 years, I had more love shown to me then most people get in a lifetime and that gets me through. Sometimes we are blessed to meet the one we are destined for! You and Aimee did.

9

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

Ha, Ha Duke. It is always good to wake up and start laughing. You do quite well, next is your Bar Mitzvah! Don't laugh, at 65 I was Bat Mitzvah. But at 74 I can't remember much. Have a great day, today is infusion day for me with the Remicade for colitis. I am starting to self prescribe! I was on 4 vials for 9 months and my GI had LABs done which showed I was not rejecting the Remicade but that I was not getting enough. So July 2nd increased me from the 4 to 7. Oh, man, I have had 2 months from hell.  So I called him Monday and said I will take the 4 but not the 7. I am no better than when I did take the 4 so why suffer more? I know I will get yelled at but I just have this feeling to go off all Meds for 2 weeks (nothing is life threatening) and see how I feel. I need a break. Know what I mean? Anyway, I am extremely happy to see you on the site more as I always look forward to your posts!

Dear APK,  I am so happy to hear about your Dad's turn around for the good! My husband had a Whipple and his CC also returned to the area that had been removed. He had Cyber Knife which worked very well for another 2 years. it is noninvasive and a breeze compared to other treatments. The only qualifications are that the tumor must be under 6cm (if not it can be bought down by radiation) and there cannot b a 'big' spread of CC. Again it sounds as though your hubby is doing much better and for that we are thankful.  Thank you for the update as well.

11

(72 replies, posted in Introductions!)

Olga, I just sent the list. Let me know if you do not receive it.

Dear Darlene, I just posted on your other post but forgot to say good luck on the 2nd!

Dear DMiller, welcome to the best place to be for CC support! I am sorry you had to find us but glad you did. There may be some kind of pain control your ONC can give you for the times  that the pain gets so bad. I would suggest as far as the eating goes that you start  "grazing" all day instead of sitting down to meals. Little bits at a time. You can also try the nutritional shakes like Carnation Instant Breakfast which can be taken instead of a meal. I used to blend in a banana with the vanilla shake and my husband loved them. May I ask where you are being treated? Now on the hopeful side, we have had quite a few members who started out as you have and ended up able to have SURGERY, which is our favorite word. Stay strong and I wish you the very best and please keep us posted.

14

(72 replies, posted in Introductions!)

Olga, you are one very strong and loving woman! To go to the meeting for Angeles while caring for Norbert is beyond words, and it is true that another setoff ears should always go to Doctor meetings.
Olga, this may be touchy  as I don't know how far Norbert is on his journey, only what you say on here but I do have a list of 10 signs to watch for when the end of the journey is near. If you want the list, send me an email  and I will send them to you. lainysardina@gmail.com. Stay strong, you are truly very special.

15

(72 replies, posted in Introductions!)

Duke, I just want to say that your post to Olga was indeed brilliant as well as full of compassion! No wonder we all love you!

16

(72 replies, posted in Introductions!)

Dearest Olga, I am so very sorry and for once I am  at a loss for words. Why do bad things happen to good people? I wish we had an answer. I too hope your brother contacts us. My only suggestion is you might want to contact your clergy after Norbert is settled at home and have a chat with him/her and he might be able to give you some comfort and even some answers. I am sending you a ton of love and hugs and when you have a chance please let us know what is happening.

Dear Sharon, my husband had the riggers but it was always due to infection of the bile duct stents.
I am curious if you know if they did a blood culture? It takes about 5 days to get a result but sometimes that is the only way to know if an infection is brewing. I am hoping someone chimes in here as I an thinking a reaction to the chemo/radiation but not sure as Teddy never had chemo.
When he would get the chills and fever I would take him right to ER and the ONC would put him on an IV of Levequin. Knocked it right out but he would be in the hospital for at least 3 -4 days. Best of luck to you and I hope you get some answers as something has to be causing this.

18

(7 replies, posted in Members' Cafe)

Kris, great news, congratulations. I like that you are on your time. My Grandson in Milwaukee works for a bank but has started doing this on the side. I think it is really (driving) taking off. I used to come up with good ideas but never carried through. I just had an idea this week for "fancy" Pampers. Told Robin and she went nuts and then I googled it and Victoria Secrets beat me to the punch! Always a dollar short and a dollar late. When I was single and used to hang at a bar/restaurant 1 block from my apartment in downtown Milwaukee I put together a book called, "How To Cut The Bait". Lines in bars that girls get and the answer they should give. Had enough of a collection for 200 pages. Never did anything with it and 6 months later on  Johnny Carson were 2 guys who did the same thing and sold a million copies. Oh me. Good luck and for an extra thrill they could book a ride on your Cycle!!!!

Dear Serena, I am so sorry to read what your Mom has gone through. Surgery is still the best option. My husband had tubes after his Whipple and an e coli infection. In fact we were visiting in Milwaukee and our 2 week vacation turned into almost 3 months! On the way back to Phoenix the tubes blew out on the plane...what a mess that was. Have you tried to give Mom some Nutritional drinks? Teddy liked the Instant Carnation Breakfast best especially the vanilla, and I would blend in a banana.  This can be given anytime and can replace a meal or be given with a meal. Give her very small portions as the eating habits have changed until she heals. Nothing fried or spicy. I would make a scrambled egg and toss in some shredded cheese. Homemade chicken soup and comfort foods like pudding, jello, buttered noodles etc.  We suggest instead of big meals to let her graze on things all day like snacking. I sure hope she will start to feel better soon and remember she went through a huge major surgery. Be strong and you are NOT alone.

Dear Serena, WELCOME to the best place to be for CC support! YIPPEE on your Mom's surgery as surgery is our most favorite word. Did she have a Whipple? Where is Mom being treated? You are right, our CC Site is one of a kind as we are one big supportive family here. Has her ONC suggested any kind of after surgery treatment? I am wishing for a calm and gentle recovery. Again this deserves a huge YIPPEE!

Great. I live in Gilbert which is next to Chandler.

Oh, Julie, I LOVE your post!!!!!  Where in AZ do your friends and family live????

Gavin, very cute but I don't see you in the crowd.

Duke, of course sheep can leap. All these years when I count sheep as I am trying to fall a sleep they are leaping big time! (You knew I had to say something)

24

(11 replies, posted in Members' Cafe)

Ha, Ha on all accounts. Yes I have known a couple........hated to say goodbye to them!!  Just kidding. They say it is not for the faint of heart but that it is great. We took a steam engine train from Williams to Grand Canyon and returned to Williams  same day. Don't get to see as much but it was a blast. We heard how the mules are trained. Since, of course they have to be sure footed on a narrow path.....they are blindfolded and late at night taken on the route. Of course we have never heard of a shortage of mules yet. If you go to the GC you really should go see Sedona a very mystical, magic and beautiful place. Small, touristy but worth the trip. And of course you should end up here in Phoenix!!!! Yes, it is very cool in the winter at the Canyon, need coats. What are those? Honestly a few helicopters sightseeing from Vegas have gone down over the Canyon, I think 2 or 3 in the last 10 years. Must have been all the money they won in Vegas weighing down the copter. So start planning!

25

(11 replies, posted in Members' Cafe)

To My Dear Dukester, I see nothing creepy or mystical about your post, I see promise and hope and a great attitude. BTW I often capitalize words when I am stressing a point. Congratulations on your mentally joining the living as you know "life is for the living".
I am so glad that you and Aimee made that trek and after all these years tell Aimee I am glad you are finally listening to her!!!  LOL  Another BTW, Teddy told me that you have a long way to go yet as he was barraged with visitors at his Sicilian Restaurant and has no room right now! He can't even keep enough food on hand to send take out/delivery! HA< and you thought the storks only delivered babies. With that I hope I gave you a giggle. Keep on keeping the good thoughts, dear friend.