Topic: Good dr. visit yesterday

I met with Dr. Denlinger yesterday. It's so great to actually say I had a good visit with my onc! For those of you who remember, going to see Dr. Kemeny was like pulling teeth.
I'm having some minor ailments, mostly edema in my legs. The swelling is almost to the knee now, so we are trying Lasix. Not a fan of the side effects, but I hopefully won't have to take this too long. We have put off giving me Lasix, but it's at the point that it's pretty necessary.
We also talked about genomic testing. She is going to check with pathology to see if there is enough sample left for the testing. Also, possibly try to get some of the original, pre treatment samples from Sloan Kettering from 3 years ago.
She is also going to see about setting up a support group. There are many cc patients at Fox Chase, many of whom she sees. I think she has about 20 patients. I told her I would deal with the counselor or whoever to try to coordinate a good time to gave these meetings.
As far as the testing goes, many hospitals charge $3-5000 for it. She sends her testing out to another company, which works with insurance and the patient to get the testing done at much less cost to the patient. So hopefully Medicare and my part B cover it. It will be nice to know the information, if only, for now, to help others determine what chemo will work better.
I'm hoping to hear soon! Here's to the future of medicine!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Good dr. visit yesterday

Wow, Kris, you really won the prize with your new ONC! Makes all the difference in the world. Sorry about your legs they must be very painful. You can still do  Karaoke just lay across the piano like a French Chanteuse! Hoping for the water log to go down quickly!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good dr. visit yesterday

Kris,  Glad things are working out with this doctor.  Sounds like this one is a keeper.  Hope she can help you get you with the leg swelling and discomfort.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Good dr. visit yesterday

Thank 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

Re: Good dr. visit yesterday

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! lol

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Good dr. visit yesterday

OHOHOHOH!!! I forgot!! My CA 19-9 number is 32!!!!!!!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Good dr. visit yesterday

Kris 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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good dr. visit yesterday

I do have the deep throaty voice! But I've been told I need to find my sexy!! lol

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Good dr. visit yesterday

Kris,
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!
Willow

Willow

Re: Good dr. visit yesterday

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 … p?id=11288

Thanks and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Good dr. visit yesterday

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????

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Good dr. visit yesterday

Day 2 of Lasix... The swelling is already going down!! And the tightness/achiness is better. I can even rotate my ankles!! Yay!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Good dr. visit yesterday

Kris your ankles say thank you as well!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good dr. visit yesterday

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,
Carl

Re: Good dr. visit yesterday

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!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Good dr. visit yesterday

I 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

Re: Good dr. visit yesterday

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
Sandy

Re: Good dr. visit yesterday

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.