lainy
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Hi Nancy. While it sounds like you are getting excellent care when they say NO to anything I just feel its time for another opinion. When Teddy had his Whipple 4 years ago we were told no chemo would work for his type of cancer. We talked to 5 doctors and all agreed. I had no question in my mind then. When we came home (everything occurred out of town) and got our “permanent Oncologist” his first remarks were, “I have no problems doing trials, if you want. I don’t do them but I know who does”. This told me he was aggressive and he is excellent. You also want to make sure that whomever you end up seeing has much experience with CC. While I don’t know doctors out East I do know you will get some great suggestions on this Board. You have a winning attitude and with your fighting attitude you should do well.
That is the best Xmas present one could hope for. Wishing you and your family the best ever Christmas and New Years.
Hi Nancy and welcome to our family. Would you mind telling us where you are located, it would help in possibly advising a surgeon or a second opinion. Looks like the chemo cocktail of G and C is the popular one lately and others seem to have fared pretty well with it. I am sure they will chime in with their welcome. Sorry you had to find us but so glad you did.
We are so very sorry to hear of Rob’s Passing. We so enjoyed his e mails. Our loss down here is is Heaven’s gain. Our thoughts and prayers go out to Rob’s Family.
So sorry to hear about your mom. The better news is that your doctor has a game plan. You will see that having a game plan gives hope and now you get on with the plan and rev up your fight. I also think it is a splendid idea to get 1 more opinion. If your mom has the fighting spirit you have no choice but to join her. Please keep us posted on her progress.
Patty, that was quite wonderful and gave me a real chuckle. Since Leroy is already taken I vote for “dadgum” disease.
Marion a site for good news would be great as I sometimes do feel a tad guilty when I post what a Miracle our Miracle Man is. My main concern is that no one feels stifled due to their adjectives.
Rick, are you reading our posts? We have a ton of Miracle survivors. I just posted about my husband who for no apparent reason has 2 newer tumor shrinking. There is no reason that we know of but the news was very welcome. We have also had people who were given months and are here 2 years later. Our own beloved Jeff G beat the odds for 10 years! This is one disease that time frames are never depended upon. It sounds very positive when you talk shrinkage. I would suggest trying not to think in terms of how long do I have but rather how can I use my “life” to the fullest. Shrinkage is a beautiful word!
Hi Tom, we are sorry to hear about your “detour” as that means some rough roads you have just traveled. But it sounds like you are on a smoother path again and at least they know what they are doing and got to the hole in the pavement immediately. It feels good just to be home, yes? Wishing you a good Christmas with family and lots of love around the table!
Hello Gavin, and it is so good to see you! I know how you must miss your dad as you were along side him for such a long time. I am sure he was very proud of you as he is beaming now as he watches over you. How is mum doing and how are you doing? Everything is still so fresh and keep in mind that your every ounce of energy was spent being a Caretaker and now that responsibility is over and it will take time to fill that void in your life. Even though we go through what we do as Caretakers there is something to say about what we gain from it. Mental strength, empathy, understanding, knowledge and more love than we ever thought possible. You certainly rose to the occasion and now even with taking care of Mum, be kind to yourself.
Some infections unfortunately take a little time to start clearing up. All depends on the type of infection. Do they have a name for it? I was under the impression that usually the patient/caregiver contact MD Anderson not the hospital, but I could be wrong. Did they just install the drains? I just searched Mayo Clinic Jacksonville on our search engine and all the remarks were good.
They must get the infection under control. Somewhere I think I heard that if the infection goes down so may the B.rubin. By morning I am hoping you get some more answers on our site and I am praying Brian’s infection and B.R. start traveling downward.Welcome Brian’s wife and sorry you had to find us. We do not accept “no treatment” as an answer! I would very quickly gather his reports and fax them to MD Anderson in Houston or at least get another opinion near you. What is his bilirubin count? Infections seem to go with the territory. Are they treating the infection? Are they doing anything. I am sure you will get some good advise from our Board. If you go to the top of the page and find the search button you can type in anything and get some answers, like bilirubin or infection. You need to arm yourself by reading as much as you can and in a short time. Then write down questions for the doctors. Unfortunately because CC is so rare a lot of the treatment is hunt and peck but we also have survivors on here who were told there was nothing more to be done. Ask the doctor if he is very experienced in handling CC? Like how many has he treated? Yes, yes, we don’t like the negative approach when we want to hear, “we can try”.
Sorry, when I read it I remembered. OK so now this is really the dumbest I have asked. I assume to go in and remove Leroy is out of the question? I realize they don’t see it but it did show on the PET. If this is so frustrating for me I can’t imagine how frustrated you are!
Kris…this is crazy. How can they not show anything??? If they do not show up how do they see they are even there to begin with. I don’t remember if you have had a PET lately. Beside the kitty, smarty.
The only suggestion I can make is as we say, another opinion? This has to be reeking havoc with you, it would me. Gosh, I feel so bad. I hope someone can come up with ideas. Love, love you, hang in.
