Topic: MD Anderson visit

Had an awesome visit at MDA!  I had been trying for a while to switch to Dr. Javle and kept having my request denied.  Thursday I had a very emotional phone conference with the Director of the department which I thought still led to no where.  So today I'm in the room waiting and who walks in but Dr. Javle!!!  I was shocked and happy.  The decision to switch me was just made yesterday.  Anyway he said my scan looked good.  I've had shrinkage and the CA 19-9 had gone down.  He gave me so much more hope than my other Dr.   He said he wants to do molecular testing to see if I have the good cells or the bad cells.  If I have the good cells, then there may be a possibility of a transplant later down the road.  He told me to stay positive, make long term plans, and exercise.  Just to remind everyone, I'm stage 4 intra hepatic with mets outside the liver.  I am currently doing Gemzar and Cisplatin.

Danna smile

Re: MD Anderson visit

Danna, wow what a story! Good for you and I am very excited for you as well. I am very curious as to why they kept turning you down. What a good thing that you persevered. Yeah, I love this. See, everyone there is always HOPE out there. Thanks for letting us know this good news!

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: MD Anderson visit

Danna, I am so happy you got to switch to Dr. Javle. Praying you have continued good reports. What are the good cells vs the bad cells?
Hugs
Lisa

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: MD Anderson visit

Wow that's wonderful positive and inspiring new. Congrats to you and continue fighting your battle. Good luck.

Hope, love, strength...2013 and for the years to come, Porter.

Re: MD Anderson visit

The reason they gave me about switching docs is if they did it whenever people wanted then they would be doing it all the time every day and it messes with your treatment.  Good cells vs Bad cells, I have no idea what they are that was just his way of wording it in English I guess.  He did tell me he thinks I probably have the good cells because if I had the bad ones then I would probably just be getting worse and not responding to treatment.  The testing isn't something that will be done right now unless I have enough tissue left which I don't think I do.

Re: MD Anderson visit

Thank you Porter!

Re: MD Anderson visit

What great news! I also wonder what "good" vs. "bad" cells mean? It must be different cell structures, but it would be interesting to know.
Good luck, and I hope you have the "good" cells, too!

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: MD Anderson visit

whoa! that's amazing news.

First like it i've heard (transplant possibility) with mets outside the liver.
maybe we need to call Dr J at MD Anderson as my husband
is stage 4 with 2-3 lymph nodes involved and 2 small spots in the lungs.

I LIKE LIKE to hear good things with Stage 4 of this cancer!
It fills me with hope!

He's been responding well to chemo so far as well.
(However a trip to Houston is not possible...but maybe a phone consult?!)

smile

Re: MD Anderson visit

Thebompie4,

The number on Dr. Javles card is (713) 792-2828.  But I think you have to call patient affairs for an appt.  Also, if you google him somewhere I know his email comes up.  So long as there are mets outside the liver transplant is not an option but later on down the road if the chemo kills it all and it stays that way for a while then it may be a possibility to see if I would qualify.  He really gave us so much more hope than the previous Dr.  He even went over different things to prolong my life if the transplant ends up never being an option.  My previous doc just sad we'd keep doing different chemos till the no longer work.  I have a son to raise, that was not good enough for me.  Where is your husband being treated at?  You may talk to your local oncologist about working with Dr. Javle.  I do know that several docs do that.  Good luck to y'all and remember that God is the ultimate physician!

Re: MD Anderson visit

Thanks Danna for the info--  My husband is here in SLC, Utah at
the Huntsman Cancer Institute.

Not many CC patients here though.

He's responded well so far, but I feel like everyone always tells us
"we're just buying you time Kyle"  (which they've said 1000X)

Which they may be.

But i'd rather have someone who's FIGHTING for us, with us.

If someone can buy Kyle 5 yrs as opposed to 12 months--obviously
that's FABULOUS.

He also has FOUR kids that need a dad (and me!)--time is
a really really really great thing right now. smile

We will see what we can do to at least maybe have a phone
consult with this dr.

Re: MD Anderson visit

Bompie, if they keep telling Kyle they are just buying him time then perhaps they are not doing enough or do not know what to do next! In 5 1/2 years not one DOC used that phrase on Teddy. I now know they always knew what was going to happen but they still were terrific with him.  I prefer a phrase we use around here  and that is, we try to remain realistically optimistic. That's like giving you an empty pot of gold! I do hope you get in touch with Dr. Javle or any one of our great ONCs and at least then you can get verification that Kyle's ONC is on the right track. You know I am always hoping for the best for you.

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: MD Anderson visit

Bompie,

I'm sure they just don't really know what to do where your at.  The oncologist I originally had in ft worth couldn't even properly diagnose me. (She diagnosed me as cancer of an unknown primary) She put me through a colonoscopy, endoscopy, endoscopic ultrasound, mammogram that led to a breast biopsi, and a brain MRI and PET of course.  She kept saying a CT wouldn't show anything and that's what MDA diagnosed me off of.  I don't see why your local oncologist wouldn't work together with Javle.  Best of luck, can't wait to hear an update!

Re: MD Anderson visit

Bompie....I prefer to view this cancer as a chronic disease.  I think that much lays in the wording and how we like to perceive it.  Kyle's physicians are not wrong with their statements however; the goal of his treatments is to allow him to live with this disease.  And, for me this is the crux of the matter. One can live with this cancer; how we live and for how long we live is determined by the individual's response to treatments. Unlike a few years ago when very few options were available, today we see multidisciplinary approaches for keeping this cancer at bay.  Having said that, dear Doreen, obtaining several, professional opinions allows for all feasible treatment options to be explored and acted on.   BTW:  I read your blog and love the pictures and your honest approach to life. 
Hugs to you and your lovely family,
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: MD Anderson visit

Great news Danna that Dr Javle is seeing you now and I am sure that he will take real good care of you! I hope that the testing goes well and that you get some good news there as well.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: MD Anderson visit

Thanks Marion!

Re: MD Anderson visit

Hello Dorien/thebompie4, please let us know if you are able to get a telephone consult from Dr. Javle.

I live in NJ and don't have any connections in Texas that would make it practical for me to travel that distance for a consult that would offer no change in the current treatment plan.  For some reason, the East Coast does not look favorably on transplant as does Pittsburgh, Mayo, or MDA.  I wish I knew why?  I showed my onc a report on a successful transplant in U of Maryland and he brushed it aside stating one success does not mean anything.  I get the feeling that they don't believe in giving good livers to bad outcomes?

We don't have any children - by choice - but I do want to live my life as long and healthy as possible.  Not only for myself, but mainly for my husband John who loves me dearly and means the world to me.  To that end, I would be willing to go to Texas if it meant a chance to extend the 12-18 month initial prognosis given in May 2012.

So far, my oncologist is following the straight and narrow treatment lines, but I have been looking for alternatives.  I have been researching this site for successful clinical trials, liver transplants and the constructive information to back up my suggestions.  But I am not willing to spend what little money we have to no avail so I really have to weigh my choices.

So back to my request, please let us know if you have any success with a phone consult.  I did get one with a specialist in NYC once and it saved me a long trip to get the same answers I had already received.  That was back in May 2012 and a lot has changed since then, so who knows.

Thank you and Take Care, Renée

Re: MD Anderson visit

Renee, boo to him for telling you 12-18 months. I think any oncologist who gives us an expiration date should be given huge demerits!

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: MD Anderson visit

Hey, PFOX, LOVE your AVATAR/Picture! I hope others will follow your lead.

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: MD Anderson visit

Rvb

Dr. Javle told me a lot of Drs frown on transplants because when they first started doing them back in the 90 s the outcome was very poor.  He said back then they were just doing them for anyone with this and now they know that it isn't the best solution in all cases.  Now that they look at the individual and what to test for the outcome is better.

Re: MD Anderson visit

Hi Kris.  Yeah, I know, what a cold fish he was in the beginning.  He is starting to warm up a bit, mostly because I keep him on his toes.  But as I have mentioned before on other posts, there are only 3 CCA patients in this rather large oncology practice, so I don't think the focus is too sharp when it come to CCA.

One issue is the attitude (I believe) on the part of the physicians:  this is business, nothing personal.  And when you've worked in medicine for over 30 years, you see the signs.  Another issue is that my oncologist is the youngest and lowest member of the group; from what I hear from other patients with other doctors, I believe he is following the edicts from above.

I did not take his prognosis to heart, but it did get my butt in gear to tidy up some very loose ends.  Now we are in a better place for when the inevitable happens...many, many years from now smile

See you next week!!!  Renée

Re: MD Anderson visit

Thanks, Danna, for getting back to me on this.  As mentioned, my oncologist does not think outside the box, and if his senior partners are of the old school thinking, he probably has to go along with it.

For now, I have applied for Melinda's clinical trial and should that go through, transplant won't be on the table for a while.  But like every other patient on this board, all options are in consideration until proven otherwise.

Best wishes and thanks again, Renée

Re: MD Anderson visit

Renee

my husband is still working on a phone consult with MDA and a dr.
there....it seems like nothing is super fast in the world of doctors~

Thanks for ck'ing ...will for sure update when we get to that point!

Dorien

Re: MD Anderson visit

hey guys!

I hope and pray that yall get the phone consults!! We love Javle and I mentioned this site and he commented that it is a great resourse!! Keep trying your right, it can be slow...we do alot of hurry up and wait at MDA but its worth it! Good luck to yall!!

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: MD Anderson visit

Heather, WOW! What an honor to have that validation from Dr.Javle!!!  Thanks for letting us know that. Well, think I played enough solitaire on here tonight, time to go to sleep. My daughter decided to make dinner Labor Day if I make an Oriental Cole Slaw she loves.  Heck yes! Night!

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: MD Anderson visit

Wait... Oriental cole slaw? Is it wrapped as an egg roll?? 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.