1

(7 replies, posted in Members' Cafe)

Dear Dukester-much good luck on Thursday, looking for good news. I am sure the snow bunnies will appreciate falling and gathering on fresh paint!!!!

Dear Kirsty, YEA!!!!!! for your appointment in Belgium re: Vero consult. Your positive attitude will do wonders for you both and carry you far. Just so you know we have had members here  who had :pepper pots: and the chemo worked very well to put them into a better position for treatments. I can tell since your first post that your fright has turned in to a lot of fight and this is a good, good thing. You are handling your part of this  terrible journey like a pro. Amazing what we learn about something we never heard of, yes? When is your appointment in Belgium? Glad hubby is feeling better after the bad weekend.

3

(8 replies, posted in Chemotherapy)

Dear Vicki, sometimes I think those bad chemo starts are some kind of initiation in to a club no one wants to join! I hope you feel better for your trip. I would also give the ONC a call and let him know you are traveling and is there anything he could recommend for you. I commend your wonderful spirit. As for the hair loss I think anything can cause that like even an imbalance in your system. My body does the opposite on everything. I am on Remicade infusions for Colitis and it is supposed to cause hair thinning and my hair needs to be trimmed once a week! Have a wonderful reunion but please take it easy.

4

(1 replies, posted in Members' Cafe)

CONGRATULATIONS HAPPY Grammy or are you going to be a new Glam-ma? Wonderful news and now Robert will have to get use to sharing the spotlight!

5

(52 replies, posted in Members' Cafe)

Dear Samuel, how do we say thanks for a Post we hoped to never see? Your Father was loved by so many and through this site I can honestly say I made friends with a real gentleman, scholar and wonderful human being. Your Father also was a valiant warrior and fought with dignity, always dignity and hope for others. He used to joke with me because my Husband was Sicilian and I always said Teddy opened a Sicilian restaurant up there until one day Percy said to me, I am going to go into competition with Teddy and open a Chinese Restaurant. We used to laugh about that and I said there will be no competition as I know you will really like each other. I know your Father is now at Peace and some day I look forward to trying his new Restaurant. Thank you so much for giving a big part of your Father to us, he will never be forgotten!

Jason, I am so terribly sorry to read of Andrea's bumpy ride. I am hoping the Folfiri works and that the side effects lessen for her.  You never know how strong you are until "strong" is the only choice you have! I know how hard it is to watch our loved ones go through this but you are doing all the right things. If the shoulder pain lessened I hope it is a good sign the Chemo is working. Best wishes to you both!

7

(8 replies, posted in Chemotherapy)

Dear Vicki, welcome to the best place to be for CC support. It sounds like you have already hit the jackpot and I hope the chemo keeps on being a breeze. Where is your CC located? I can tell you have a great attitude and that will help you out a ton.  There are some members in Southern Fla. and I hope they get in touch with you as there is nothing like meeting up with someone else from this site. You are right about there not  "in person" support groups due to the rarity of the Cancer. I tried with Mayo here in Phoenix but it just won't work. Again congratulation on your good decisions and please keep us posted as we truly care.

8

(12 replies, posted in General Discussion)

Dear Rod, sorry your appointment with Dr. Chapman didn't turn out the way we hoped but at least you are leaving no stone unturned. As we say many times on here, there are quite a few members who had Mets, had chemo then were able to have surgery. Your attitude is great and will carry you far. Good luck on the chemo and please keep us posted.

Supermum, this is so amazing, good luck and we will be watching with bated breath for their answer. I am crossing every thing  that you get good news.

Dear Dave, welcome to the best place to be for CC Support! If you arrow up to the top of this page you will see an orange 'ball' that says Menu. Click on that ball and it will take you to a list of items  where we have a glossary of terms. Also you can go above here and click on Search and just type in any word and a host of posts will come up in reference to that word. Where is your wife being treated? There is a very good Cancer Center in your area called Moffitt Cancer Clinic. We have had quite a few patients go there. I know you are upset but the best thing you can do is some reading when you can as knowledge is our best tool for fighting this Cancer. We also believe heavily in 2nd and even 3rd opinions as other opinions have changed many lives here for the better. Lastly but far from last, you want to make sure that your wife's ONC has experience with CC and also the hospital she is being treated at should have experience with CC. I think that is enough to throw at you for the first time as I know it is hard to concentrate at first. Honestly  once a treatment plan is in place your fright will turn to fight. Please keep us updated as we truly care and you are not alone as we are one big family.

Crissi, glad to hear from you! sometimes, actually most of the time CC makes no sense at all. We just do the best we can with it biding out time until some cures come along. Hopefully sooner than later. How very nice of you to ask for donations for our Organization that is a beautiful thing to do. Hope you are doing OK and we thank you for the donations and for stopping in.

Dear Mary Beth, welcome to our infamous roller coaster! You have shown others again, how important it is to go for that other opinion. I can truly believe it was hard for you to drive home that day from the store but somehow we garner the strength we need in times of need. Now I am happy that a new treatment plan is in place and Rob is already feeling better. You are right that Sisters are wonderful blessings and I am glad you have the help and company from her. Things CAN turn around Rob is already showing proof of that. Live every moment to the fullest by loving, laughing and talking. It really helps to talk things out. I know a lot of people get scared by talking but for me it worked great. You are NOT alone either on this end, we are all right beside you. Be strong and please do keep us updated. I like your new course of travel.

13

(12 replies, posted in General Discussion)

Dear Sprinter, I loved reading that your ONC is all for another opinion. That's the way it should always be! Dr. Chapman is a wonderful choice. I can't wait to read what he suggests. I think 2nd and sometimes more opinions are so important so that no one, patient or Caregiver, second guesses how they handled this rare beast! Wishing you the very best Wednesday and please let us know what Doctor Chapman says.

14

(171 replies, posted in General Discussion)

My dear Tom, I am glad Ben is coming home that is the best place to be. If I may suggest to you some Hospice suggestions. I ordered a hospital bed for Teddy as it is easier for the patient to get in and out of and more comfortable.  With this  bed I would get a lambs wool sheet as it makes laying in the bed more comfortable. I also ordered a walker and wheelchair as we moved along. I remember a lot of times when I would be at the kitchen sink T would come up to me and give a hug. After I ordered the walker he kind of stumbled in to the kitchen without the walker and I gave him a Lainy look and said if you fall we will really have problems. He just looked at me with his arms out and said I just wanted to dance with you and he began singing our song and trying to dance with me. I have a million memories like this. This will be time now for the 2 of you and like T would say we were on our honeymoon. Sorry, I digressed. Sooo I put  the Hospital bed in the living room as it was light and airy there and visitors felt comfortable as well. But the most important thing was the BIG TV was in there too. Hospice is wonderful  as they allow you and Ben to have this precious time together. Best of luck and I wish for Ben to be comfortable. Love you both.

Please, please get one more opinion, perhaps he needs a change in treatment. We always suggest this and then there will not be shoulda, coulda. What is the ONC recommending if you stop treatment? Hospice? Teddy was very fatigued at times and the ONC started shots of B12  once a month which really helped. Wishing you the best and please let us know what is happening.

16

(8 replies, posted in In Remembrance)

Dear Shelley, Happy Anniversary! Of course it is still your Anniversary and always will be. Everything does get better with time, way too soon for you to feel different. I wrote the following which you may have already seen, at about my 6th month mark. 

Everyone asks me how I’m doing since you went away,
With a smile on my face I answer, “I really am okay”.
Matter of fact its very hard but I promised to be strong,
Until the time we meet again, in your arms where I belong.

In the morning when I wake, once where there was warmth all night,
There’s nothing but an empty space and a pillow to hold tight.   
Our closet now holds all my clothes it still looks kind of strange,
I try to make it look like more and constantly rearrange.

When I’m in the kitchen and working at the sink,
Many times I stop and this is what I think…..
If Teddy was here he’d grab me to give a little cue,
That he was about to hug me and say his, “I love you”.

No more are the corny jokes that grew longer by the year,
What I wouldn’t give now for just one more, to hear.
When someone calls, your message is still kept on the phone,
That way no one knows I am really home alone. 

When day is over and dinner is eaten by one, 
No more thank you-s for the meal well done.
Can’t find anyone to scratch my back,
There’s just a big hole here, a hole of midnight black.

But, how am I doing? I’m doing okay,
I know that you would want it that way.
And I know you are with me morning to night,
Still watching over me, that every things all right!

Thanks, Randi, girl! Hope everything is good at your end of the planet. Miss you!

Dear Moshin, welcome to our wonderful family and the best place to be for CC support. I would really get another opinion if you can. I have always felt that with any kind of Cancer one does not wait to see what is going to happen. The ONC has to be very proactive and start some kind of treatment immediately. We also have many members whose CC had Metastasized, had chemo and the chemo got all the METS. No reason  to get so bad it can't be treated. I agree with Gavin, try to get another opinion. Best of luck to you and please do keep us posted.

If it has stopped that is good, if It happens again, please take him to ER or call the ONC. My husband had many of these and the longer one waits and if it is an infection, the harder it gets to get it under control. This is what we call one of our roller coaster rides! Hope your hubby stays off this ride.

Dear Nicole, welcome to the best place to be for Cholangiocarcinoma support, which I believe is your husband's Cancer, please verify that this is what he has. Does he have stents in his bile ducts. Usually the stents can get infected and cause chills with a high fever in which case he needs to go to ER and be put on an antibiotic like Levaquin and may also need a stent exchange. It could also be a reaction to the chemo treatment. I have never heard of blue lips. Either way I would definitely call his ONC and see what you should do. Best of luck to you.

21

(4 replies, posted in In Remembrance)

I am so very sorry to read about the loss of your very good friend, Bonnie. It sounds like Bonnie was a very special lady who had everything in order and picked her own time to go to her Peace.

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.

You have all allowed me to tell you about my Ulcerative Colitis and to complain to you so it is only fitting to give you some good news. I am not going to be flushed down the Loo easily! Had a Colonoscopy today and for the first time in 3 years, good news!!! My colon is half healed. The upper part is good but the lower part is still pretty irritated. I will see the GI on Friday and we will talk about some new stuff that has been approved. For the first time I can see a healed AXX at the end of the Rainbow!!!
Too funny. This space cadet put in my IV to which the Propofol is added for a nice sleep. I felt the IV leaking water and the Nurse in the Colon room said yes it was leaking so she taped gauze over it and while she was doing that I felt Dr. M get a little too close to my ah, entry. My hand went up at the same time she injected the Propofol and I yelled out, "Not Yet Dr. M." I don't even remember anymore as the next thing Robin was sitting with me.  Guess you had to be there!

STOP IT!  Honestly you are too funny and should take your act on the Road. "Love ya"

24

(171 replies, posted in General Discussion)

Tom, this is not what I ever wanted to hear but let's not count anything out yet. The important thing is you will be very strong and you have this whole huge cheerleading team behind you both.
I would just like to raging swear but will remain a lady. We just love you guys so much and I am standing right beside you for strength and support. I do know what you are feeling but try to be strong for Ben. Please, please keep us updated if you can.

Dear Supermum, welcome to the best place to be for CC support! I am so very sorry to read about your husband and my husband started out exactly like yours! In the Ampulla of  Vater. That was 9 years ago and there was no treatment plan after surgery  for it at that time and location. It returned 3 years later and he had Cyber Knife which bought him another 2 years. My Teddy went through an aborted Whipple and then 10 days later the real deal also with clear margins. The good part for your husband is the ONCs are more aggressive now and there are newer things to try. Teddy's never MET anywhere, just kept returning to the same place. I am so sorry but looks like Supermum has just turned in to Super Woman. I am glad your husband healed rather quickly from the Whipple and at this point I would probably stick with what you are doing especially since your ONC is not afraid to change up treatment is necessary. Please come here as often as you want and while I am glad you found us wish you didn't have to. Also please keep us posted on hubby's progress as we truly care.