Discussion Board Forums Introductions! My Introduction to the club and trouble finding help for my son

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  • #80707
    lainy
    Participant

    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.

    #80706
    makua
    Participant

    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.

    #80705
    lainy
    Participant

    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.

    #80704
    makua
    Participant

    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.

    #80703
    makua
    Participant

    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.

    #80702
    lisacraine
    Participant

    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

    #80701
    makua
    Participant

    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.

    #80700
    makua
    Participant

    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.

    #80699
    snowbird
    Member

    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!

    #80698
    lainy
    Participant

    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.

    #80697
    makua
    Participant

    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.

    #80696
    lulu07
    Participant

    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

    #80695
    lainy
    Participant

    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.

    #80694
    labrador
    Participant

    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

    #80693
    labrador
    Participant

    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

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