Re: My Introduction to the club and trouble finding help for my son

Hello all again.  I need some advice badly now for my son.     Does anyone know if Anderson hospital in Texas does remote consultations???

My son is unfortunately not doing well at this time.  He just had a CTscan after completing many weeks of chemo, and the tumor has not reduced at all in size.  They told him to apply for permanent disability now, and that the cancer cannot be cured, and gave him some more depressing information about how this cancer behaves.  My DIL feels she is on the brink of a nervous breakdown, and I can understand why.  My son has always assumed that he would eventually go back to work, so the suggestion of permanent disability has stunned him.   His chemo was the GEMCIS combo, I believe that is correct.

If you recall, he had the Roux en y at Johns Hopkins two years ago, Lost half his liver and bile duct system.  He now has a duodenal stent, and they had to put in a 2nd one in as well, when the first one seemed to have been invaded by the tumor.  He has been eating better with then 2nd stent, but his stomach is uncomfortable most of the time.
I cannot understand why no one has ever wanted to use any type of radiology, since I have read about that here.

Labrador, you say you are receiving radiation, and no one has ever suggested radiation to my son.
I have always wondered why not.
The doctor finally gave him some Marinol, and he took some today.  His main complaint is that his stomach always feel uncomfortable.  He is able to eat some things, and does not always throw food back up, so keeping it down part of the time is an improvement.

I had mentioned Anderson hospital to my DIL a while back, and just now she called and asked me to call them and see if they would consider doing a remote consultation.   Does anyone know whether or not they do this, has anyone done this???

Anderson was highly recommended here, and that's where I learned about it.   He is going to Robert Woods hospital in our area, and excellent hospital, but evidently not experienced with Cholangiocarcinoma.
Sloan Kettering won't do a remote consult, and won't accept him as a patient because he has not had a recent biopsy of the tumor.  Everyone at John's Hopkins as well as Dr.Schulick in Colorado say DO NOT TOUCH IT, NO SURGERY AT ALL.  So a biopsy is not an option.  That eliminates Sloan Kettering.

Sooo, we would like to  see if we can get a remote consult from Anderson.  If someone knows who the highly praised doctor there is, I would appreciate it.  I will try and look at other threads, but there are many.  and now I am too tired tonight.  At 81 my energy and stamina is very limited now.  :-) 
Thank you in advance to anyone who has any advice.
Someone even mentioned in one of the threads the name of a wonderful doctor that we should perhaps contact at Anderson, but I have forgotten his name by this time.

It is late now, but I will check in  tomorrow.  I have had a lot going on here, and have not checked in lately, and then had password problems too.

Re: My Introduction to the club and trouble finding help for my son

Lainy, please tell me how you are doing.  I have not been here for a while, and really would like to hear about your progress.  You certainly have my prayers, and I hope you have been feeling better

Retsinelg, and Labrador, I am glad to meet you, thank you so much for your posts.  Bless you all.

Re: My Introduction to the club and trouble finding help for my son

Hello Makua, I am so sorry to read about your son, darn it! I think you are looking for Dr. Javle at MDA Houston. Not sure if he will look at scans and reports faxed to him, he might, just not sure.
Here is what you need:   
Univ. of Texas M.D. Anderson C.
1515 Holcombe Blvd
Houston, TX 77030
713-792-6161   

http://www.vitals.com/doctors/Dr_Milind … z34IclCUyD
I have never met him but from his picture he is a ringer for my Gastro guy.

How sweet are you with all you have going on and then ask about me! I am doing a little better as we are really blasting the Ulcerative Colitis now. I just had another infusion of Remicade and so far I think it's working, then I am on Prednisone, Imuran, Levaquen and Flagyl. We are bombing it. I just had a LAB test and it showed that the Remicade is working but too low so they are adding a 5th vial to the next infusion. This is going on 3 years now. The first 2 GI's were not good. I also went to the Neuro Surgeon and the thingy in my head is a Meninginoma tumor, benign. About the size of the tip of a finger and slow  growing. Even though it is pushing on the lining of the brain it is not doing and damage. We will do an MRI next June again. All I have left now if an MRI where I had my stomach cancer and then I can concentrate on the UC.

I know we have a new Category on here with a list of our top ONCs but for the life of me can't find it so hope someone else will come forward. It's just not fair at our age to watch our children suffer. Tell your DIL to get copies of all your son's LAB work and Scans and tests so you are ready to fax them to the ONC you pick. Makua, feel free to email me again any time you need too. I am usually here. Sending you a huge hug and a ton of love.

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: My Introduction to the club and trouble finding help for my son

Makua.....I am sorry to hear of the latest developments and very much understand your son's state of mind.  Although, radiation had not been recommend, it should however not discourage your son from consulting with an interventional radiologist.  You must know though, that a cancerous tumor is similar to that of Real Estate values  in that it is based on - location, location, location. 
I wonder whether you son has had molecular testing?  This may possibly lead to targeted therapy. 
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: My Introduction to the club and trouble finding help for my son

Lainy,  thank you very  much for the doctor's name.  I just called MD Anderson and no, they do not do remote consults, only possibility is a physician to physician conversation that involves no transfer of records at all, and his primary would talk to a physician on call at the time.

However, now I will call the physician you recommend and see if perhaps he might do a remote consult.
I am glad that your tumor is benign, that is great. And I hope that your gastro situation improves, you have been through so much.

And Marions, thank you also.  It may well be that no one has suggested radiology because of the location of the tumor (s)    Bless you all.

Re: My Introduction to the club and trouble finding help for my son

Makhachkala,
I never chimed in before, but here goes... Call Fox Chase in Philadelphia. No further than NYC for you.
My onc is Crystal Denlinger. She is WONDERFUL! And they have at least 2 trials going on right now for cc. Plus they care, and are a cancer hospital. I did the trek to Sloan Kettering for 2 years, and am so happy to now be at fox Chase. Phone # 888-FOXCHASE.
If you want to be connected to MDAnderson, try cooper medical center. They just joined with MD Anderson.

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: My Introduction to the club and trouble finding help for my son

Makua,
My brother was initially seen at Community-Toms River right after Christmas 2013.  He was transferred to Beth Israel-Newark and at that time they completed two weeks of tests and the results were that the two top doctors felt surgery was not an option.  My brother then went to I believe, the University of Penn. (right across from Children's Hospital of Phila. ).  He saw the top liver guy for the cholangiocarcinoma and the top heart doctor as he also has a large tumor in his heart.   After several additional weeks of testing, they indicated that surgery was not an option.  He followed-up with one of the top oncology doctors there and they recommended 5 weeks of radiation, 5 days a week.  He also received Chemo shots at home,  So, this is where he is today.  2 weeks post radiation.  We have seen a steady decline in his energy level.   He has problems with coughing and weak voice that we were told is a side effect of the radiation.  I believe that the radiation/chemo was extremely draining for him in addition to it being an 1 1/2 hour drive to/from everyday.   He doesn't eat much, but I believe he drinks boost drinks and maybe ensure.  Through all of this I would have to say that he has kept as positive of an attitude as anyone can have.  I never would have thought that there would be another young man suffering though this same awful condition so close by as we are from the Ocean County area too.
Sending prayers your way,
Labrador

Re: My Introduction to the club and trouble finding help for my son

Makua, 
Although we have traveled slightly different paths, our families are both dealing with this horrible disease  at the same time within about 10 miles from each other.  If you would like to communicate directly with us you may find our e-mail under our profile.
We would also like to thank the entire group on this website for being such an informative and caring "family".  Special thanks to Lainy for your continued support through this challenging time.
Patricia
Profile name: Labrador

Re: My Introduction to the club and trouble finding help for my son

Patricia and Makua, I would love to see the 2 of you meet. There is no feeling like meeting someone going through the same situation and it will do you both good to meet and really know you are not alone.

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: My Introduction to the club and trouble finding help for my son

Makua

Very happy to hear your son is feeling better....I had 2 liver resections with Dr. Myron Schwartz
at Mt Sinai Hospital in NYC ...I have e-mailed him and he has answered me in a very timely
manner. I believe there are others who have e-mailed him with their questions and he has answered them back without making an appointment. His e-mail is myron.schwartz@mountsinai.org   As is always said on here as many opinions you can get is good. You and your DIL are doing a wonderful job of advocating for your son. God Bless all of you and good luck.
Nancy

Re: My Introduction to the club and trouble finding help for my son

Kris, Labrador, and Lainy, Thank you so much for your messages, and please forgive my tardy reply.
I am afraid that my son is not doing well at all.  He is NOT eating, drinks Ensure, but simply doesn't want to eat anything, and says the problem is not keeping it down, it is just that nothing appeals to him, he has no appetite at all.  The doctor has given him the Marinol, and he says that is not really helpful either.
I contacted MD Anderson, and they do not do remote consultations.  I gave my DIL the number for the Peer to Peer physician service, to give to their oncologist, but I  don't know what has come of that.  I have not spoken to her since I gave her that.
Friday, my son said not to bother coming to visit, my DIL's father was visiting and there were no parking places for me.  He is a block from the ocean and all the tourists are down.  We discussed eating, and since he is not eating enough to keep a bird alive, I fear how much more weight he will have lost the next time I see him.
So he is still on Chemo, says he is totally exhausted, and I don't know if that is the cumulative effect of the chemo or the fact that he is starving himself.  I would think that not eating anything would also sap your energy, not to mention that you cannot fight any illness without food.  It is very upsetting.   Nothing I mention seems to sound appetizing to him, he just doesn't want to eat.
So that is where we are at this time.

I will tell my DIL about Fox Chase, I have heard other good things about it.  I did mention it to her a while ago, but at that time they were beginning with their present doctor and that is closer, so she didn't look into Fox Chase.  I'm make sure to tell her.  She also said she was going to check in to Cancer Centers of AMerica in Philadelphia.  Don't know if she has done that.

Labrador, I hope you have a more positive situation.   I apologize for not replying sooner, but I have had a lot going on here, have not been feeling all that well myself, have had a few doctors' appointments south of here, and only saw your posts just now.   At the moment, I have 5 sick animals I'm caring for, lots of meds to give.  One is getting palliative care, poor little girl, kidney failure.  I am getting ready to give her lactated ringers, and I absolutely hate doing that.

As far as my son is concerned, I feel useless.  I really think I am losing faith in the treatment he is getting.  But I don't think they hold any real hope for him.    It seems that everyone I know has a family member with cancer of one kind or other.

Re: My Introduction to the club and trouble finding help for my son

Dear Makua, I am so sorry to read this post about your son. Just an FYI and that is we have not had anyone from Cancer Centers of America as people who have gone their for CC end up at major hospitals. They do not have the experience with CC. I am wondering if your son's ONC is aware what is going on about his not eating. There are RX that can help. I know it is very hard to not be there. I am hoping for the best and to me the best would be for your DIL to have a talk with the ONC about what is happening.

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: My Introduction to the club and trouble finding help for my son

Makua - At one time, my husband was not able to eat barely anything either.  His doctor reluctantly prescribed Megace (Megestrol) and it worked immediately.  I know that it is very expensive, but thankfully our insurance co. paid for it.  Hopefully your son will be able to start eating again soon!  Godspeed!

Re: My Introduction to the club and trouble finding help for my son

Hello all.  I have relayed the info I received here to my DIL.    She just emailed me the following links about trials going on,   and I don't know what to think about them.  They were not recommended by my son's oncologist, but by someone else, another oncologist she was speaking to.  I don't have full info about this.  I read them, but dont' know what to think.

I don't know what my son's oncologist is planning,  I have not heard.  I am hoping he did the peer to peer phone calls to MD Anderson, but have not heard since I gave the number to my DIL.
I just emailed and asked her about that. 
It is very difficult  not know what is going on in any depth, since I am never able to actually talk to the doctor myself.  I try not to be intrusive.  My son has never been good at relaying or sharing information even at the best of times.   I am hoping to be able to visit with him tomorrow, he is getting his chemo today.
I"m hoping they will contact Fox Chase, and I'm hoping that the doctor DID do the peer to peer with MD Anderson.

Re: My Introduction to the club and trouble finding help for my son

Labrador,
I am so extremely sorry to hear about your brothers illness.  Please forgive my tardy reply to you.   I wish I could offer helpful advice, but it is journey into the unknown for our family too.    So many people I talk to have family  members with cancer of one kind or another.  It is stunning that it is so widespread nowadays.
At this time, I am waiting to hear back from my DIL about what their oncologist's plans are for my son. 
At this point I am not sure what to think about the treatment he is receiving.  As I said in my last post, I'm hoping they have received some advice from MD Anderson in Texas.

I hope you are satisfied with your brother's doctors and the treatment he is getting.  Not knowing the correct course of action is very upsetting, since we all want to do the best we can.
Bless you and your brother.

Re: My Introduction to the club and trouble finding help for my son

Makua,
I am sorry at I am late in chiming in but it sounds like you have received excellent info. from others. I hope the remote consult works since Dr. Javle is the expert.
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: My Introduction to the club and trouble finding help for my son

Lisa,  I hope their doctor has done the remote consult. I had called Dr. Javle's office, but was told he does not do remote consults, and that our doctor should call for a peer to peer with whichever doctor was on call.   I will write when I hear if our doctor has actually done this.  Thank you for your reply.  It is quite a journey that we all are taking here.

Re: My Introduction to the club and trouble finding help for my son

Hello All,
My DIL has finally asked me to go ahead and try and make an appointment with MD Anderson in Texas.
I will call tomorrow, however, it is quite far from NJ, and would be a big trip for him.
I was just online looking for their number, and lo and behold, there is an MD Anderson Cancer center in Camden NJ, at Cooper university center here in NJ.
The University of Texas MD Anderson Cancer Center and Cooper University Health Care have joined forces to take cancer care in our region to a whole new level

Needless to say, this would be wonderful, because it is right here in NJ,, and so  much closer.  My important question is whether or not I should try and get an appointment her in NJ, and if the quality of the care and expertise would be equal to that in Texas.  Evidently this is a new relationship between Cooper and MD Anderson.

It would be very difficult for my son to make the trip to Anderson, his wife works, (tho she would try to get the time off to go with him)  and I don't know if I could make the trip with him.
SOOOOO,,   does anyone have any advice about whether or not we should try to get an appointment here in NJ instead of going all the way to Texas.  How are such satelite facilities usually as far as being as high a standard as the main facility. ??   it would certainly be far far more doable for us.
I'm going to try and call for an appointment tomorrow.  We think that next week, he is going to be entering a re=evaluation phase.

Re: My Introduction to the club and trouble finding help for my son

Hi Makua, I just answered your e mail and to make a long story short all satellites are not always like the main Hospital as I stated my experience in the email. Best of luck.

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: My Introduction to the club and trouble finding help for my son

lainy,  Yes, thank you so much, I got your email, and appreciate it.    I realize that all satellites are not created equal.  I was just HOPING.  I'm not even sure what MD A would be able to do for my son,  I feel so sad after seeing him.  He has such a strong spirit, and is being so strong despite all he is going through.  I will call Texas tomorrow and we will see what they say.  they said they would not tive me an appointment the last time I called because my son was getting chemo, and they said to wait till he came to a period of evaluation, but today my DIL said that he NEVER GETS periods of evaluations, it just keeps going on and on  and on.  Next week he will have his week off, and get a ct scan, but then after his usual week off, he will begin with the same med again.  2 weeks on, 1 week off for 6 times and the a ct scan and then it starts all over again.  Same ole, same ol, even tho it doesn't seem to be doing anything.  Doesn't seem proactive to me.  And they are getting discouraged too.

Re: My Introduction to the club and trouble finding help for my son

Makua you never want to be with any DOC who is discouraged. FAMILY of CC do any of you know of a GOOD CC place to be near where Makua lives? Makua I am posting this here and a new one to start a new thread 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.