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

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  • #80687
    kris00j
    Participant

    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.

    #80692
    makua
    Participant

    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.

    #80691
    marions
    Moderator

    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

    #80690
    lainy
    Participant

    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_Javle.html#ixzz34IclCUyD
    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.

    #80689
    makua
    Participant

    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.

    #80688
    makua
    Participant

    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.

    #80686
    labrador
    Participant

    Makua,
    Just wanted to introduce ourselves. We are going through similar situation and are within a few towns away from you. My brother is 57 and only had symptoms in October, November. He is receiving radiation and chemo at University of Penn. Daily. Remember to also take care of yourself.

    Labrador family

    #80685
    retsinelg
    Member

    Prayers are with your whole family. Hey, I ordered extra bracelets…can I send you some? Just need your mailing address.

    Take care and best of luck.

    #80684
    lainy
    Participant

    Makua, I am so glad it is finally warming up for you. This whole last week was in the 90’s. We love it but it gets boing with sun every day. We need some big clouds and RAIN. I take 10mg of Lexapro. Very mild but does the trick. Only thing is I can’t cry now. I watched an old movie with Mickey Rooney called Human Comedy and I wanted to cry so bad at the end and could not. My husband and I had our own saying when ever something went bad physically, “Now we know what’s wrong, let’s fix it!” I still live by that. But the Lexapro does make me laugh at things I probably should not. Awaiting the next update on your son. Be strong.

    #80683
    makua
    Participant

    Oh my Lainy, you certainly do have your plate full. I am so glad you were able to eat again. You are evidently a very brave lady, and indomitable too! I hope your next scan is better for you.

    My doctor gave me xanax 2 years ago when my son first went into JH, so I have that, and every week or so, I take 1/2 pill (instead of a whole one) just to take the edge off, but I am beginning to think I should just go ahead and take the whole pill as I was prescribed. I find myself becoming very irritable in addition to being exhausted, so I guess I should do that.

    It was very warm here today, I hope you had good weather too. Bless you, and have a good evening.

    #80682
    lainy
    Participant

    Makua, you can’t look back on what was or what could have been. JH is very experienced with CC and perhaps your son had to go through what he did to now be able to move forward. I can tell you that starving almost to death is horrific as I did that a year ago and it was extremely scary. That was from the Ulcerative Colitis and I never want to go through that again. They were ready to put in a J tube and gave me one more day to try and eat. By the Grace of God and with Teddy’s help, I am sure, I awoke at 2AM and was so hungry for the first time in a month. I gobbled up 12 crackers with peanut butter, which I don’t even like. I avoided the J tube. It is something the DOCs don’t do lightly so I don’t think your DIL could have a say in it. I wouldn’t want her job as Caretaker again, it is the hardest job in the world.
    The Neuro Surgeon is for a tumor they found in January on the left side of my brain. I will be having another CT Scan with contrast as they did not do the CT with contrast the first time! The Scan could not really be read, he showed it to me. So, yes, I am doing that, colitis and Diabetes. Lovely, IKnow what? WHen my golden starts tarnishing I just take out my little polishing rag and make it gleam again! BTW stress is the worst thing for any condition. I know, as Moms no matter how old our kids get we don’t want to see them sick or hurt. Please do ask the Endo about something light to help the stress.

    #80681
    makua
    Participant

    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.

    #80680
    lainy
    Participant

    Makua, you and I are in the same Thyroid club. I have 1 nodule but it is benign and in 3 years has not grown an iota. What I want to know is why nature waits until we are older to start playing tricks on us!
    I have my ONC Wed. but I know it is just to set up my next scan in 6 months.
    Then on Thursday I have my Remicade infusion for my Colitis and I don’t feel it’s working. And on Friday I am getting my 2nd Neuro Surgeon opinion. What did we do in the old days when we didn’t have to see so many Docs???
    I am so glad you got to see your son. Is he eating at all? Don’t worry about the nutrition part as long as he can eat something. With Colitis I cannot eat much fruit, vegetables, grains, pasta and only chicken. Nothing with roughage.
    I think you were shocked to see him so much thinner but that all goes along with CC. Take care and please keep us updated and enjoy your visit.

    #80679
    makua
    Participant

    Lainy, Well, I had the CT scan and also a sonogram, and I have tons of nodules on my thyroid. I am waiting for the doctor to compare the CT scan and the sonogram and call me with his thoughts. they did tell me that my blood was good, and I could visit my son, so I visited him yesterday.
    Oh my, he has lost so much weight, he has lost half a person!! His stomach bothers him, and he is still throwing up liquid when he eats, they are perplexed that the sold food doesn’t come up only the liquids. He has not been eating much, must eat in small amounts at a time. Seems to me like he is starving to death, but I suppose that is not true. The doctors suggested a J tube, (I think that is what it is called, but he doesn’t want it.) I can’t really blame him.

    Today, he drove himself to get hydrated, a 45 min drive all alone. If I had known I would have driven him, but it was spur of the moment he said, and so I didn’t know he was going. I called, he didn’t answer and later he answered and said he was being hydrated at that moment. I guess we are lucky that he doesn’t feel worse than he does, this is his OFF week, he has had chemo for 2 weeks now, will have this off week and then 2 more weeks, and then an OFF week, and so it goes. He is on a low residue diet, which seems to me to prevent him from eating anything which would really be nutritionally beneficial to him!!

    I don’t know how his immune system can function when he can’t eat the green veggies etc. and othe raw foods that would be nourishing at a time like this.
    He has always been so strong, a force of nature, he is 6 feet 4, and usually weighs about 250. I did not want to ask him how much weight he had lost. Hopefully, after being hydrated, he will feel better tomorrow.

    I have ordered an IV stand because I have to hydrate my little 14 year old cat who is in beginning kidney failure, and it will be easier than taking her to the vet several times a week now. I have done that subQ for other cats in the past. My DIL was wondering if she could do that for my son at home, better than the 45 min, drive, especially when he is feeling poorly.
    Has anyone done that at home??
    Bless you all.

    #80678
    lainy
    Participant

    Makua. I have heard of swollen glands caused from extractions or tooth infections. Mmmmm
    I was taking a lot of Vitamins and was talking to Hospice (when Teddy had them) as well as a dear friend who is a Doctor of research in Milwaukee. Both asked me how my Lab work was and I always said perfect. And they both said then why do you take so much? I am down to Zinc and Vitamin D, that is it. In fact I stopped calcium last Fall and my Calcium is always high. Guess something has to work right! The benefits of Zinc are yea long. Both also said to go off E. I did. I know the Docs love it when we self Doc!

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