makua

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.

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.

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.

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.

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.

Lainy, well, my son wound up in the ER again. Extremely dehydrated. They hydrated him, gave him a GI series again, and he had to wait over 24 hours for a room. At least he had a bed in the ER. the GI showed nothing new since 4 weeks ago, but then they did an endoscopy, and that showed that there was significant growth of the tumor into his stent, partially blocking it. So they put in an additional stent, and hopefully that will enable him to eat without all the vomiting. We have wondered about the condition of this first stent every since it was put in in JH. His stomach never seemed right with it. and lately he had been vomiting much more than usual. he has been on Chemo for 2 weeks, and this is the first week off, so we thought perhaps it was that, but no, it was the tumor growth.

Now my DIL said that the doctors do NOT want to put the j tube in, and that they want him to continue trying to eat real food. Now I am thinking she was the one who wanted it, because I know my son did not.
Anyway, he is home again, and I will try to go see him tomorrow.

I was just told that a 3rd little cat is hyperthyroid, and so I am struggling to give her her med, and she is very difficult. The other two are easier to give the med to. And of course the 4th cat is only palliative. My IV stand arrived and is defective, so must be sent back and I must wait for another, so I took her to the vet again. I should try to do it again myself, but frankly, I am so tired out, and so depressed by everything I don’t really feel like trying.

I am glad to hear that your nodule is behaving itself, that’s great. My doctor wants me to see an endocrinologist after seeing my sonogram, and I have an appointment Tuesday. I am totally exhausted most of the time, and I am wondering if it is all stress and depression or if there is something the ENDO dr will be able to give me. If so, that would be great.
Yes, as we get older, so many things start to go wrong, the golden years are not really golden.
Is your neurosurgeon visit for the colitis, I didn’t think that required a neurosurgeon?
Yes, it did seem better years ago when one doctor actually CAME TO YOUR HOUSE and took care of you. House visits have been a thing of the past for many, many years now.

Lainy, Zinc! Hmmm, I have heard that it is good for you. Thanks for the advice. I will look into it, seems I need all the help I can get. I do take Ester C, Vit E, and my Stress B vitamins with extra C. Usually, some extra pantothenic acid helps a lot when I have swollen glands, but that is in years past. It did help this time when they were so enormous, it brought them down considerably in size, but didn’t get rid of them totally, so I still have a problem, it seems.

I checked my records and the whole gland problem started after having 4 teeth extracted in mid August. Went to an ENT doctor for them in September, but he thought it was from the extractions and it would get better. That is a long time ago now, so I’m glad I’m getting the ct scan.
Wishing you good luck with finding effective help for your “other things.”

Lainy, Well, I suppose my son is beginning his chemo as I write this. I certainly hope all goes well for him.

I have a doctor’s appointment today to find out why my glands have been so swollen, the size of walnuts for several months now. We don’t want me to infect my son when his immune system is compromised. I have not been able to visit him so far for that reason. I have actually been sick since I was given the flu shot back in October. I was fine till then. I never had it before, but my doctor told me I must get it this year because “I am old!” We argued and finally I said ok. I am so sorry I did, 2 days later I was sick and have not been well since. I had a month or so in December when I was slightly improved, and was hopeful I was getting better, but then when my son got ill again, it all came back big time. I am hoping it is some kind of personal condition I have, so that I am not infectious and will be able to visit him. So far my visits have been on the phone.
At least the sun is shining.