kris00j
Forum Replies Created
-
Posts
-
Hi Helen, sorry you had to find us. I, too, think your post was beautiful. I try to remember to appreciate every day I wake up, also. If this journey has taught me one thing it’s that you never know what’s around the corner.
I’m sorry Bonnie is declining so rapidly, but am glad she has her family and a very special friend to support and love her.
My thoughts and prayers go out to you and Bonnie.I had to cancel my vaca… Boo!
The onc says I should not be in contact with her for 2-3 weeks. CDC says if the shingles are still pussy and haven’t scabbed over, there is a chance of contagion. Especially for people with immune issues (chemo for one), pregnant people too.
I have had chicken pox, and a small shingles eruption on my arm during college. At least that’s what they said it was.
Thankfully I purchased travel insurance, so I can use it another time. But I don’t get to see my family.
The ones I know will be a drive, but the closest I can think of is cooper med center. They just teamed up with md Anderson a while ago.
Or the 2 hour drive to Fox Chase. My onc is Dr. Crystal Denlinger. I love love love her! They have teamed up with Temple.
There are a few in Philadelphia, but I would go to Fox Chase first. U of Penn is another.
And if he wants to travel a bit farther, there is NYC and Memorial Sloane Kettering, but I would not suggest Dr. Nancy Kemeny. Or NY Presbyterian , where Dr. Kato is, as far as I know.I hope this helps.
I need to chime in here about MSKCC. They are a research hospital. Depending on the onc, you might get an idea about another facility. But they don’t make money by sending their patients elsewhere. In my case, Dr. Nancy Kemeny would never suggest she isn’t the best. I tried to talk to her about trials and she basically said… Look around and see if you find something. It’s up to you.
As far as the “cherry-picking”: they are talking about a specific group of cc patients getting a specific protocol. Yes, it would be wonderful if we were all diagnosed at an operable stage. Then cc would have a much better success rate. For many trials, even, they look for a specific group of cc patients. The lucky ones have success.The break is a go! 15 days without these drugs! I’m hoping I lose 15 lbs!! lol
Realistically, I’ll take 10 lbs. and the flight is booked for next week. One week from today and I’ll be in Alabama hanging with my bros and their families!! I can’t wait!Since you are taking orders… The most sinfully chocolate chocolate fudge chocolate cake you can think of here!!
Newest update… Things have continued to be stable. The edema is pretty much under control with Lasix.
I spoke with Dr. Denlinger. My next scan is Monday and I get results Tuesday. As long as the scan is good, Dr. D is going to request a couple of weeks off for me, while I travel to Alabama to see family. I’m hoping they say yes, and the edema lessens on it’s own. As well as the fatigue. Maybe I can get back to “normal”, whatever that is!Eric, I’m sorry to hear this. You have heard about the trial I am in, I know!
It’s been keeping me stable for over a year. I know Fox Chase has other trials, too. The number is 888-FOXCHASE. Ask if Dr. Crystal Denlinger could contact you. Patty Murphy is the head of the CRU trial I am on.
I don’t know if they’ve moved to phase 3 yet.
Another question… I don’t remember. Did you have genomic testing done? Foundation One pointed me to a trial in their report.
Call me if you need to talk.Crissie,
I, too, am sorry for the loss of your father. But there is nothing proving cc is a hereditary disease. My suggestion is like above… Don’t give cc the power! Take care of yourself, watch what you eat and IF you worry about it, get blood work done on a regular basis.I tell people I have cancer. If they ask, I tell them the name. To clear the confusion, I tell them working bile ducts keep their poop brown. And I tell them except for surgery, there is no current cure, only hopefully ongoing stability.
But I’m hopeful because of genomic testing. And I will continue to hope.Duke, I think this depends on the particular mutation. There are fast growing tumors and slow growing tumors. So I don’t think this question can be answered in a paragraph.
My surgeon said the Stage IV tumor in my liver was probably about 9 months old. And it was only about 4×6 cm. but the placement is what determined stage IV.
