Good dr. visit yesterday
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So glad that you are feeling more comfortable. It’s great when moving your ankles is a big step:). Continues progress please!!! Keep us posted.
Kris – so glad to hear that you have found an ONC you feel so comfortable with. We are still with Dr K so I feel your relief.
I am still laughing at the Vision Lainy painted of you ala Marlena Dietrich.
Best
SandyI think its absolutely necessary to have a doctor who makes you comfortable.
So glad that’s the case for you now and that you are doing well.
Best,
January
Carl, your ears should have been ringing Tuesday, also! We talked about you and Lynn, and Dr. D was surprised that we have not met! We also discussed a support group, if you missed that in my previous post.
Patty is also hopeful that Lynn will qualify. She is the “coordinator”?? Short, bubbly, short hair. We discussed Lynn a little, without going into details. But I’m keeping my fingers crossed. When you come back down I am going to try to go down and meet you. It’s only 20 min.
Psssttt, don’t tell the staff, but next time have Lynn tell them her name is Annabel Mobely and her birthday is July 4. Or something similar. It keeps me laughing, anyway. They never know what I’m gonna say! lol
Yes, it’s silly, but laughter is the best medicine!Kris,
Great news, including the fact that Lasix is helping. Lynn and I wish you the very best.
For others, I want you to know that we have also been working with Dr. Denlinger as a second opinion consult since Lynn’s initial diagnosis last April. We have met with her several times and are very impressed with her. Kris and I have discussed this multiple times.
With Lynn’s recent CT scan, we went to Dr. Denlinger as a possible primary oncologist. On our recent visit Monday, I mentioned to Dr. Denlinger that we knew Kris. She broke out in a wonderful smile and then spent the next several minutes telling us how she and the entire staff enjoy Kris. She told us Kris is the best advocate for other CC patients that they could hope for.
Kris, on a very personal note, thank you so much for bringing this trial to our attention. We are hopeful that Lynn will qualify. Dr. Denlinger was pretty confident. We are waiting for the final word.
I guess I need to start practicing my karaoke.
Take care,
CarlDay 2 of Lasix… The swelling is already going down!! And the tightness/achiness is better. I can even rotate my ankles!! Yay!
Marion, I cross posted it. There are reports of edema with this drug, yes. And yes, I have my legs up a lot during the day.
As for the CA19-9… I wonder what it would be if I were a good little patient and watched my diet and never drank? I’m thinking… 25????Kris…..Have you been able to raise your legs while sitting and using a pillow under your legs while sleeping? (Lainy’s funny idea may not be too far off.) I am wondering whether Dr. D. is aware of others with similar water retention issues? I realize that you are in Phase I and there are only a few others in this clinical trial, but there might already be some data the physicians may be able to look at.
I am absolutely thrilled to witness your positive response in all other ways and wow…on the perfect CA 19-9.
I also am wondering whether you would be so kind as to copy your posting in the below thread in the Clinical Trial thread?
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11288Thanks and hugs,
MarionKris,
This is wonderful. Your oncologist sounds like a go getter. My sister saw a new onc today at UCSF who is the first to suggest she get genetic testing of most recent biopsy sample. She said Foundation 1 would do it and it would cost $2,000 (assume ins won’t pay at all). She is considering it. She has other biopsy from 1.5 years ago too but I’m wondering if the samples are prepared and stored right for this kind of testing. I mean, they were taken for a different diagnostic purpose so I am curious if they are in the right condition/format/prep for the genetic testing.
BTW, that song chokes me up too… Keep on singing Kris!
WillowKris great on the CA thought that was your age!
Caroline, in the ‘old’ days they had singers in France called Chanteuse and they would sit on the piano or I should say recline and had deep throaty voices and sang quite sexy. Kris, that’s you right? OMG am I dating myself.
Caroline, the trial is now in phase 2. The candidate can only have had one line of treatment (possibly 2, if they are approved). I was talking to Dr. D yesterday about it, and I think Fox Chase’s cc arm will be filled with Lynn’s approval. There are possibly availabilities in U of Penn and Bethesda.
There are some other trials popping up. Hopefully your mom finds one that works!
And they say the happier you are the better you can fight illness. I am almost NEVER unhappy when I sing! I get choked up when I sing “Live Like You Were Dying” so I can’t say I’m always happy. If releases endorphins, which are great for fighting illnesses, depression, etc.
Lainy, you crack me up! The swelling isn’t TOO TOO painful. Uncomfortable… And scary… But they don’t have pianos at karaoke, and laptop computers are a bit too small for me to drape myself across! lolThank you for the update, Kris. I’m looking at all your old posts to see if my mom might want to look into the treatment you’re on. As it is, I’ve been telling my mom about your karaoke-therapy!
Lainy, you crack me up! I almost spat out my tea because the image of anyone doing karaoke lying across a piano is too hilarious.
Caroline
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