(1 replies, posted in General Discussion)

Aw, Derin....NO bucket kicking unless you are fishing! Gee, I am sorry to read what you have been going through and then I got to the shrinkage3 part and felt a little better.  This monster sure know the best people to attack. He only goes for the best! Please do try to keep us updated and hoe the next news is even better. Praying for you, sending good vibes and the best juju. P.S. Hah! I didn't know one  name in that concert. Now if you mentioned the Crewcuts or the 4 Lads that would be a diff. story!


(3 replies, posted in General Discussion)

Dear Surfer, I am so sorry to read about what you and your husband have been going through. My husband had Cyber Knife that worked for 2 years and then the CC returned. I sure hope the other ONC can come up with another treatment plan. I know this is a very hard time for you both and I am sending prayers and good wishes for something to work for him. Also sending you a huge cyber hug!


(15 replies, posted in General Discussion)

Dear Katrina, my husband had stents after a Whipple  surgery and the general rule of thumb is to change them every 6 weeks to 3 months which he did for years. He always had plastic and it was an easy breezy exchange and much better than getting the stent infections. With our family here, about 3 months does seem to be par for the course. It is an individual decision and if yours is for a short time, we hope, guess I would go for plastic.


(20 replies, posted in Clinical Trials)

Dear Katrina, way to go, girl! Keep on shrinking, it is a good thing! As for thinning hair, not sure there is much to be done but since winter is around the corner I would say a cute hair piece or some cute winter caps/hats. Since the treatment is working well for you I would revel in that and let the hair go where it will. MDA here in Phoenix  has an amazing gift shop full of hair pieces and other items for cancer patients and everything is discounted. Continued great success!


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

YIPPEE for me! I totally forgot that on October 1st I entered my 7th year Cancer free for another rare Cancer. It is called a Gastro Stromal Intestinal Tumor, GIST for short. GIST reacts much like CC in as much as it is extremely rare, no causes known, surgery best cure and can return anywhere. There is only 1 chemo pill and no guarantee. But I am starting year 7, not to be looked at lightly! I have never given it much thought only to tell myself it was not returning and since it occurred in Teddy's last year I was more worried about him so was too busy and that may be a good thing. Keep busy and don't think about it. Just wanted to share my great news.

Dear Barbara, where has this year gone? I knew your event must be coming up as I remember it was around Teddy's Birthday. I just know you are going to have a big, beautiful and successful even as you always do. Please keep us posted and of course we can't wait to hear the post Campaign news! You and Rob are 2 of our CC angels!

Dear Kathy, I wanted to wish you the best of luck on tomorrow results. Just keep remembering that new treatments are coming along all the time. We certainly did not have even 8 years ago what we have today. Please let us know about your results as we truly care.

Dear Marian welcome to the best place to be for CC support. Congratulations on not being a lurker any longer and we are happy you joined as your Mom's story gives hope to others. CC is a monster who runs a roller coaster that we wish NOT to buy a ticket for! You are right about things not being even as good as they are now as my husband was DX 10 years ago and the only thing we knew was that we did not know much! He relocated 6 years ago but for 5 years also took that ride. Wishing your family the very best and don't be a stranger now and please keep us updated on Mom's progress. Below is a site you may find helpful:



(1 replies, posted in General Discussion)

Dear Nikki, it is sad but it may be from the Chemo. Can you tell his ONC what is happening and see what he thinks? Do all the things you feel are necessary and I feel your plan is good. Whether it is a short time or a longer time all your thoughts have valuable outcomes. Perhaps you will know more Friday. One thing we know for sure and that is CC is a monster. I hope now that the acites were drained he will feel much better. I am sure you are not in the way. Just keep doing as you are. Personally, I would wait for the time off to see what turn of events take place.  Sending your family the best!


(238 replies, posted in Introductions!)

Oh, Matt, what stupendous news! YIPPEE! Thank you for letting us know and wishing you the best results ever. ATTITUDE and HOPE which you have, gets you anywhere you need to go! YIPPEE!

Dear TIAH, I am so sorry to read about your Mother but am glad you found our CC Board as we are the best place to be for CC support. First I would like to commend you and your family for doing everything just right! I know we cannot erase your fear as yet but please know that we have had quite a few CC patients, who after chemo to bring the tumor down in size, have gone on to successful surgeries. We also have members in Australia so I am hoping they read your post. Attitude is so important and you all seem to keep your spirits up and that is great. If you go to our Search engine at the top and type in Australia you should find posts from others in your area. Wishing you all the very best and please do keep us updated on your Mother's progress as we truly care. Oh, and congratulations on not being a lurker anymore, glad to have you join our elite Board.

Dear Brigitte, unfortunately it is all the new normal. I lost my husband 6 years ago to CC but I grandly carry on as that is what he would have wanted for me to do. You are doing all the right things but I have one question, are you a believer in the beyond? Honestly that has brought me so much comfort. I even keep a log in the computer of his visits. December 6th will be 7 years and I have 118 visits. I also have a list of Signs that your loved one is around you. It may seem silly to some but we do have many believers on this Board. I post it to show that we really are in our club together. This is a poem I wrote about 4 months after Teddy relocated:

How Are You Doing?

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!

Dear Bridgette, CONGRATULAIONS on your very successful surgery. Surgery is our favorite word and it sounds like you are well on your healthy way!  You were treated at one of the best places you could have gone and now you have found us, one of the best places to be for CC support. I am wishing you continued success and please keep us updated as we truly care.


(51 replies, posted in General Discussion)

Dear Chuck's Sister, Thank you so much for letting us borrow Duke. He was one of a kind and will always be fondly remembered.


(0 replies, posted in Members' Cafe)

Segulot for 2015 is today. The full moon starts, and according to the Jewish faith, it is a time for healing.  Segulot, (spiritual medicine in Hebrew), is only 28 words: “God, our divine father and creator, please, walk through my home and take all of my worries and illnesses and, please make a vigil and cure my family, Amen”. This is a very powerful prayer. It is a Segulot.


(6 replies, posted in Members' Cafe)

Oh, My, Randi. Well here goes off the top of my head but don't anyone laugh! OK go ahead and laugh.

Life Changes
Never Give Up
Life Is Worth It
Living Smart
Reinvent Life

Not sure this is the kind you are looking for. Best of luck and good for you!

To My Dearest CUZ Family, I am so very sorry for Duke's relocation but I know he has already  met with some of the greatest people ever and I know he will still be watching over everyone especially his family. I have never "met" a man so eloquent, dignified and caring. Aimee and family how Blessed you were to have him for so many years. Please accept my humble condolences.

Death is nothing at all. It does not count.
I have only slipped away into the next room. Nothing has happened.
Everything remains exactly as it was. I am I, and you are you,
and the old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, we are still.
Call me by the old familiar name. Speak of me in the easy way which you always used.
Put no difference into your tone. Wear no air of solemnity or sorrow.
Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without an effort, without the ghost of a shadow upon it.
Life means all that it ever meant. It is the same as it ever was.
There is absolute and unbroken continuity. What is this death but a negligible accident?
Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval, somewhere very near, just round the corner.
All is well. Nothing is hurt; nothing is lost. One brief moment and all will be as it was before. How we shall laugh at the trouble of parting when we meet again!
By Henry Scott Holland


(6 replies, posted in Members' Cafe)

Randi Girl, so good to see you! I had a fast, fast!  Hope you are doing well, we miss you, career girl!


(117 replies, posted in General Discussion)

Hi Carol, YES, I knew Dad would be going with you and the mobile phone blew my mind. Last New Years I was talking to my daughter and a text appeared on my phone. I don't text, message or etc. It simply said "I still miss you and I love you". There was no phone number and no name. Then it disappeared. Never figured it out and I asked many people more savvy then me what it was. Everyone said you cannot get a text without a name! Are we not just the luckiest. We are so blessed. Enjoy your vacation and now you know Dad will be with the family.

Posting this again due to popular demand!!

After loved ones cross over, they are anxious to let us know they are okay and are aware of what is going on in our lives. If we are not able to feel them around us, they will often give us signs that we cannot ignore. The person who is given the sign usually knows he or she is receiving a message from the other side. You do not have to look for signs – the signs will come to you.The signs our loved ones give us most often are:
They come through as an animal. Our loved ones are able to use their energy to go inside of an animal, such as a butterfly, ladybug, bird, or dragonfly – for a brief period of time. The animal does something it usually would not do, such as land on us, peck at our window, scream at us, etc.
•    They place common objects such as feathers, coins, or rocks in our path. Our loved ones like to place things over and over again in our path that were significant to them. 
•    They give off fragrances. We can often tell our deceased loved ones are around us when we smell their perfume, flowers, cigar or cigarette smoke, or any other familiar smell they had. There is usually no logical explanation of why the smell is there.
•    They make songs come on at the perfect time. We know they are around when their favorite songs come on at the right time with the exact words we need to hear. 
•    They come to us in dreams. One of the easiest ways for them to come through to us is in our dreams. All we need to do is to ask them to come, and they will. However, we should ask them to wake us up after they come, or else we will not remember the dream. A dream that is a true visitation will be very peaceful and we will know it is truly our loved one. We will remember this type of dream in detail many years later. (On the other hand, a subconscious dream may be frightening or feel bad. This type of dream is not your loved one.)
•    They allow us to feel peaceful for no reason. When our loved ones are in the room, they usually make us feel so loved and at peace. It usually happens at the most unsuspecting time, so there is no logical explanation for our sudden bliss.
•    They place thoughts in our head. Because they in spirit form, our loved ones don’t have an audible voice. Therefore, they give us messages telepathically. Pay attention to thoughts that just “pop” into your head.
•    They love to play with electricity. They turn electricity on and off. They like to flicker lights, turn the television and radio on and off, and make appliances beep for no apparent reason.
•    They make buzzing noises in our ears. Because our loved ones speak to us on a different, higher frequency, we may hear ringing in our ears when they are trying to get our attention. This is a sign telling you to listen to what they are saying.
The list can go on and on, but these are the most common ways they let us know they are around. If you haven’t received any of these signs, simply ask your loved ones to come to you to let you know they are okay. Be patient .


(117 replies, posted in General Discussion)

Have a wonderful vacation, Carol, you deserve it. Safe travel and I have a sneaking suspicion Dad WILL be there too!~

Dear Greg, it is good news and your attitude will get you the rest of the way. Keep on trekking and doing what you are doing to keep that joker at bay. Life is for the living and you are doing that well. Wishing you the very best and than you for the update.


(238 replies, posted in Introductions!)

Dear Matt, thank you for the update. I prefer to say good news and  iffy news. I can't give you an answer on this one but like you I tend to lean more on the chemo as your next step and that perhaps the mystery would be taken care of. Wishing you all the best as always.

WOW! I have happy tears. It has been a long 10 years but we have arrived. We know we are the best but it feels so good to be acknowledged in this way. Like I always say I get much more out of this Board than I give, so it is purely selfish. Marion thank you so very much. You are my mentor and I am so very proud to call you my friend. I can see you beaming over this now!

YIPPEE FOR MIKE!!!! This is such a good news day!  Onward and upward and life is for the living! Celebrate and have fun! YIPPEE!