lainy
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Hello, Marilyn and welcome to the best place to be for CC support and to becoming a member of our great family. I am sorry I have never heard of those headaches. I hope they find something that can help as you have quite enough to deal with without added discomfort and worry. May I ask where you are being treated? I live in Gilbert, Az so we are distant neighbors. Below is a site you may find helpful and please do keep us posted.
http://cholangiocarcinoma.org/newly-dx/
Dear Alicea, I am so sorry to read about your Grandma but you have come to the right place to get CC support and to come into a warm and wonderful family. My thinking is, if she did get the first stents inserted these should be no different. I have not heard of that hospital but you want to make sure they are experienced with CC. I would also let them know that you want an extremely experienced person to do the stent exchange. Plastic stents were also inserted for my husband and they do need to be changed at least every 2 – 3 months or terrible infections can set in. We are also big believers in 2nd and 3rd opinions. Very important so that you never look back and think what you could have done. So, experience and other opinions at the top of the list. Now, for yourself you might ask your own doctor for something to take the edge off for you. This will be a lengthy journey and Grandma needs your strength. Patients are pretty smart and can tell when we are upset and then they feel so bad for us. You never know how strong you are until “strong” is the only choice you have! Below is a site you may find helpful and please do keep us informed as you are not alone in this anymore. And please take care of you!
http://cholangiocarcinoma.org/newly-dx/
WOW! You know how happy I am, Sista! Get ready Robert and Colin, Grammy is a coming with presents! You go girl and at Famous Daves please have a rib for me!
THANK YOU, Katrina for that priceless and valuable information. Along with all that good news, CONGRAULATIONS on being a Survivor. Far from a small thing is your fantastic attitude. Wishing you continued success and we so love hearing from you! Wishing you the very best!!!
Hi! My GP never put me on Vitamins, I put myself on them. I have had a new GP since July and I went off everything but a Cholesterol RX. I went from 10 pills a day to one pill every other day. LABS are always perfect. I feel good. Nothing has changed with me. I had a total Colectomy a year ago and a tumor on the brain removed in January and headed for one more small tumor removal the 25th. Both are benign. Point is at 76 (on April 20th) I sailed through both surgeries after going off my pills. Now, I don’t tell people to do this without a Doctor’s advice but I was lucky not to need supplements.
Another reason I do not believe in these cures is that my daughter had a boyfriend who got Lymphoma. He went on Vitamin C intravenously to the tune of 50K. The Lymphoma stabilized and 6 months later took a dive and in a year he was gone.
I truly feel that if something that the ONC feels will not hurt or interfere with other treatments one is going through are ok but I do not feel they will cure or help cure. And most important always let the ONC know what you are doing. The best we can do to hang in and hang on until what we need is here! New treatments are forth coming and we need to remain realistically optimistic. Best wishes to your family!Hello, Ilias! So good to see you and YES a BIG HAPPY BIRTHDAY to your MUM! I wonder if she may be spending her Birthday in my Teddy’s Italian Restaurant or even in Percy’s Chinese restaurant right across the way!
YIPPEE, Susie! Sounds like great news to me and I am in the middle of doing cartwheels for you! Congratulations also on a new job. You eat as many brownies as you like! Crossing everything I have for a great Scan!!!
Susie, it is so good to see your smiling face on the Board. I miss you and your great posts. I hope all is going well and wishing you the very best.
Kris, I just have no words right now except to say, like I told Teddy, I don’t like you in yellow. Pick another color to wear. Kris, I know you can do this, you are a strong lady. Everything has a way of working out and I do like the sound of Keytruda. It does have a little melodic name and I also know you love music! Sending you the best ever in juju, spirits and prayers. I have something to tell you. Guess who is in a relationship? Yep, me. Thought that might make you smile. Kris, I think of you every day and so wish we could get together again!
Dear Georgia, I am so very sorry to read about your Mother. I hope you get some comfort in knowing how courageous she was and that she held her grace and dignity to the highest regard. It will take some time to let the grief out but when it does the time will come that you will think of only the happiest of memories which I believe is what your Mother would want you to do.
Georgia, as our members here know I am a BIG believer in the beyond and believing has brought so much comfort to me. IF you believe I would be happy to send you a list of how to know when loved ones are around us. First though I would suggest giving your Doctor a call and asking him for a little something to get you through this. I really believe you need a little extra help. Also you might look in to a grief counseling group. Please let us know how you are doing.I’M STILL HERE
I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets the ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I’m the first ray of light when the sun starts to shine,
And you’ll see that the face in the moon is mine.
I’ll whisper your name through the leaves on the trees,
And you’ll feel my presence in the soft summer breeze.
I’m the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I’m the smile you see on a baby’s face.
Just look for me, I’m every place!Dear Tiah, this is all part of the “roller coaster ride”. A short stand still may be good for a small break in body and brain. Do something fun or something to take your minds off it a bit. It is wonderful that the DOCs will listen to others. You are very thorough and next time if a new DOC gets involved you might want to call the DOC who is supposed to be sending records to ask if indeed they were sent. A PET is good and should show what exactly is going on. Best of luck and I am so very happy that Mum got to see you Graduate!!! CONGRATULATIONS! One more thing, it is the best news that if SIRT is not for Mum there are more options!
Jennifer, my husband’s CC did not appear in his liver but in the bile ducts. I can say that Dr. Kato is one of the very best and everyone seems to just love him. There are others as some members may advise and our CC becomes more well known but you would be very happy with Dr. Kato and of course we always advise a 2nd and even 3rd or 4th opinions. Best of luck with this.
Dear Kathleen, you have come to the right place for CC support and it would be beneficial for your friend to also come here to let out steam and to pick up some good suggestions. It is just great that she is able to start a trial and we wish her the very best. One big reason for the feeling of isolation is that CC is still very rare although new treatments are already up and coming. If she prefers not to join us please note that where ever she is being treated MUST be experienced in treating CC. The same goes for her ONC> I am giving you a site below that should be helpful to her and please keep us updated on her progress.
http://cholangiocarcinoma.org/newly-dx/
