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

Hello all, I am so happy to have found this group. I have been lurking for a few weeks.    2 years ago, my 50 yr. old son was diagnosed with bile duct cancer, and had surgery at John's Hopkins hospital in Md.
A wonderful surgeon Dr. Richard Schulick performed an 8 hour surgery, called:
a unilateral hepatojejunostomy with Roux-en-Y anastomosis and left hepatic lobectomy.  The wonderful doctor said that the pancreas was fine as were his lymph nodes, and all the margins were clean.  The staff at JH was superb, very caring, and expert.

After returning home after the surgery, he had several severe setbacks, which I won't go into here, except to say he had terrible bleeds and had to be helicoptered down from Central NJ to JH twice and once by ambulance.  All 3 emergency transports within about 4 weeks.   It was touch and go whether or not he would live to reach JH, on one of the flights, but he made it.  When he was finally able to return home to try and recover, and just as he was able to go back to work, Sandy hit us in NJ, and he wound up with 6 feet of water in his home and the family was displaced for over 6 months.  Needless to say, that was not good for his recovery, but he survived, and now 2 years later, it seems the Cholangiocarcinoma has returned. I am not surprised after all the stress he has been under.  My heart is breaking for him, his wife, and his little 7 year old daughter.

The wonderful surgeon Dr. Richard Schulick is no longer at JH, he moved to Colorado and is chief of surgery at the University of Colorado hospital.  If anyone is in that area, and wants a superb surgeon for this type of problem Dr. Richard Schulick would be a great choice.  Now that my son's CC has returned we miss Dr. Schulick more than we can say.

Our experience at JH this time cannot compare with our experience 2 years ago.
After several endoscopies, catscans, and a petscan, and placement of a stent in his duodenum, he was simply sent home, I feel peremptorily from JH,  still vomiting and unable to keep any food down, with a pic in his arm for intravenus nutrition, and told to go  home and find an oncologist for Chemo and that they could do nothing else for him, and it was GRIM.  no other details. no referral, or hint who to go to for help.   He was sort of "set adrift on a scary sea alone and frightened." Well, we are all frightened.
So tho they put a stent into his duodenum,  it did not seem to have helped before they discharged him, and tho he could still not keep food down, they said they didn't understand why.
Has anyone had this experience??

I will only say that we have been struggling desperately to find someone to help my son. 
Sloan Kettering says he would be a 2nd opinion patient, and that without a current biopsy, (which JH did not want to do) SK could not help him, and to find somewhere closer to home.

Another wants to start chemo next week after putting a port in his chest.  Thank goodness we found him, at least he wants to try and help my son.

I am not sure how much to say, and if a moderator read our posts first to monitor them, so I do not say more than I should.  tho I would not want another person to go through what we have, with this particular doctor.   I am very upset after the experiences we have had, feel as if I am about to explode, and hope that I have not been totally incoherent. 

I have been lurking here for a few weeks, and am so happy to have found this site.  Bless you all and good luck to all.

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

Im so sorry for what your son is enduring. You have not posted anything inappropriate. This is a great forum to voice your concerns and ask for support. I don't know how to help specifically with where to go in your area (I live on West coast) but clearly he is still having acute problems so I would seek a doctor (GI or surgeon) ASAP to eval that stent. I would be surprised the onc would proceed with chemo until his symptoms are under control and he can hold at least some food down. To answer your question about the stent, I believe the stent in the duodenum is supposed to help food pass when tumor is compressing it from the outside or even growing inside it. Which was case for your son? Sometimes surgeons will perform a (palliative) bypass surgery but not sure protocol for that. LisaS on this board had a similar problem last year and I believe she is doing much better. Try searching her posts under user name search.
Sincerely,
Willow

Willow

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

Dear Makua, welcome to our extraordinary family but I am so sorry to read about your son. Glad you are no longer a lurker! Please do not apologize for your post, as a mother myself I probably would have exploded by now. We are here for you and your family, members come here to rant, rave, advise and get advice. There is no one monitoring our posts we are an open forum. I am really surprised at JH and SK as most of our members have gone to several Hospitals and the ONCs work together. The only other suggestion I could give would be to send Discs from both hospitals to Jewish Barnes in St Louis to Dr. Chapman and to MDA Houston to Dr. Javle and ask them if they can give you any advice. Wish I could tell you more but I know others will be posting, it's always slow over a weekend. Stay with us, we truly care.

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.

4 (edited by chezWright@aol.com Sat, 08 Mar 2014 19:38:33)

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

Have you tried contacting Dr. Shulick in Colorado?  My doctor whom I adore at JH also left this past fall and I felt abandoned! , but before he left, he reassured me that I could always contact him in Texas if the cancer returns.  I understand so well what it feels like to have the doctor who saved your life ..leave.  We were referred to Dr. Tim Pawlick at JH for continued follow up…he has quite a bio and the nurse practitioner whispered to me that that is the one to go to.  He is NOT Dr. Choti who was very warm, caring and an excellent listener but if he is competent, I guess that's what is important.  Maybe you were being PC to not mention who is doing the follow-up at JH.  If you did not go to Dr. Pawlick you might want to try him as he does have considerable experience and seems well respected in the larger community.  Marion may know of him.

Do NOT give up.  Call Dr. Shulick for advice or try Dr. Choti who is at U of Texas Hospital in Dallas or any of the other wonderful doctors people will recommend here.


Keep us posted.  I know you will hear from others who have much more knowledge than I do.  This is an amazing site.

Thinking of you,
Kathy
PS….I went to someone other than Dr. Choti at JH at first, but after 7 weeks of dallying around with NO progress and no decision, I switched and it made all the difference.  Do not hesitate a moment to switch doctors at JH.

PPS…I am just rereading your posting.  That was exactly my first experience..two endoscopies, a stent which they removed for the second endoscopy and although I had protested the second endoscopy because I didn't want the stent to be removed and replaced, I was told "a piece of cake."  End result…it couldn't be replaced !  Then the same doctor wanted a THIRD endoscopy and a stent put in from the outside.  I switched doctors as this was now 7 weeks from my first appointment and I was getting panicked at letting it go/grow so long.  When I went to Dr. Choti, he was very professional but reassured me that whoever I chose, it was entirely up to me and to not worry about the other doctor. He operated within 5 days and no further endoscopies smile   SO….it really does depend who you get.  Call Dr. Shulick and ask for a referral to one of the other doctors at JH…or who he would recommend as you felt so much confidence in him in the first place.

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

Dear Makua -
Well come to this wonderful family. Never worry about what you post, this is a great place to vent and let everything out. We have all done it.
I have no answer about doc's to go to on the East Coast since I too live on the West Coast, but be the squeaky wheel. If you don't like an answer then keep pushing and asking.
As for the stent, he should be feeling better as the stent should be keeping the duodenum open so food can pass. The IV nutrition is a good stop-gap measure to rest his stomach some but should not be a permanent answer (although it could be if needed). Again I would be the squeaky wheel until your son gets some help.
By the way, my husband just turned 50 and he is 9 months out from the same surgery your son had. I know how that recovery can be rough.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

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

Makua.....I agree with the others - there is no reason not to contact Dr. Shulick: http://www.ucdenver.edu/academics/colle … actUs.aspx
I have learned that biliary blockages can cause consistent vomiting, but there could be other reasons as well.  And, that you need to find out.  Therefore, I would  mail the latest scans and physician reports to Dr. Shulick for review, as he is most familiar with your son's current anatomy. 
Please let us know.  We care.
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

Kwolland and others,   I want to thank you all so much for your replies, bless you KV,   and I pray that your husband feels better soon.  The endoscopists did go in and look and said that the stent was still in place and working, and that they could tell that there was some food emptying from the stomach, which was why they could not understand the continued vomiting.

My daughter in law and I have both called and left messages for Dr. Schulick, but so far after a couple weeks, we have not heard back from Dr. Schulick. When I called, the lady said that he is chief of surgery and has a very full schedule, but she would leave the message.

Kathy, thank you so much, it is good to  know that someone else had problems of the same kind and managed to get relief.  I will tell my family about it.  Hopefully we will be able to get a different doctor and team.  You did  not mention who the first doctor was, and I am wondering if perhaps we might have had the same person.
You said, " Maybe you were being PC to not mention who is doing the follow-up at JH."  I do not know what PC means.  :-) I just did not know if it would be correct to mention his name.
Thank you Willow, I will search for Lisa S.
Marions, I went to the link and it seems to be the same building we called 2 times so far, but the number is different, so I will try again tomorrow.  and thank you Lainy, I will not leave, I am so glad I found you all.

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

Makua....sometimes you have no other options, but to engage a physician in contacting another physician.  Your GP or GI doc may be able to help you out or any other doctor involved in your husband's care.
Good luck,
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

I just spoke with my daughter in law, and she said that my son is not feeling well again today, he is having some discomfort in his stomach, and threw up again this morning.  I have swollen glands and don't want to go near him till I am better.

Someone I know who had lung cancer and has been being treated for 6 years now, said that her doctor, Dr. Nissenblatt, whom everyone loves, but who is not taking new patients,   prescribed Marinol, (medical marijuana) and that it was a tiny little pill and it helped a great deal with her vomiting.  Since she used the same service where my son is going at the moment, we are hoping that perhaps his doctor, Dr. Phillip Reid,  will be able to prescribe it for him too, tho my son was hoping he would not need it. 

Has anyone here had any experience with Marinol??

I am sitting here, feeling more discouraged since hearing he is not feeling well again today, and is so uncomfortable again, and I am helpless to do anything about it.
Tomorrow, I will try and call Dr. Schulick in Colorado a third time, but I doubt I will hear back.

I feel we have wasted so much precious time, when he could have had chemo a couple months ago, but did not get treated  simply due to what I consider neglect, and disregard, or worse by this doctor,  and I fear how much the CC has progressed during this wasted time.

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

Hi again,
I am so sorry you are having this concern and all the frustration of time elapsing!  It all feels so helpless.  PC = Politically correct…..but we should all be aware( I believe) of where we might bump up against walls and sharing these can be helpful to others.  My first doctor was Andrew Cameron whose father is John Cameron who is presented as the doctor who has done more whipples than anyone else in the world.  He certainly is well-known (John that is)..I have had several friends who have gone to him and not found him personable..but as I mentioned before, if he does the trick, forget the bedside manner.  I am not sure why I was given Dr. Andrew Cameron at the beginning…a very young guy and really specializing in liver transplant which was never presented as an option.  He had never done any surgery for bile duct cancer and therefore would not do anything without the cancer board directive and every time he came back, he said another ERCP…and it always took several weeks to get any news back and then there really was no news ..except not enough tissue to get a definitive answer..etc.  So if for some reason you got Dr. Andrew Cameron, my guess is he is not who you should have.  On the other hand, you might try Dr. Tim Pawlick.  Do you have access to records on line?  If not, sign up for them.  You can send a message for appointment or consult and so far, I have always gotten an answer from them in 24 hours.  There is also a number to call.  Request an appointment. 
Sorry I can't be of any help about relief for your son right now.  But others here who've had more experience will definitely help you. 
Sorry to be long-winded.  We are keeping you in our prayers.
Kathy

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

Kathy, thank you so much for your reply.  My son's doctor this time was Dr. Kenzo Hirose, so not the same as yours.  And we will absolutely ask for a different doctor when he has to return at some point.   He has an appointment tomorrow to see about the port in his chest, somewhere up in our area.  He was supposed to be slowly weening himself off of the IV nutrition, but has not been able to do that because he is still vomiting, 2 times yesterday.

I am so sorry that you had such a hard time in the beginning.  I am glad you were finally able to get satisfactory help.  That is a blessing.

No, I do not have access to records online, never heard of them, but will check on  that and mention it to my daugher in law.   She is handling everything.  The woman she spoke to at JH last week, about trying to get a sooner oncologist appointment was very disagreeable and rude to her, and she was not able to change the appointment.  I just don't understand how it is possible for her to be running into so many extremely disagreeable people now when we need help so desperately.  Everyone at JH was so wonderful 2 years ago. 

It is difficult to not have first hand info from the doctors myself, but at my age, 81, she has much more energy and resilience than I do for handling all this, She is getting really tired and frustrated at this point tho,  seemingly blocked at every turn .  Not only is the disease devestating, but the struggles finding effective care, all the roadblocks and red tape, make it even more difficult than it is already because we wind up so angry in addition to being heartbroken.

UH OH!!  Uh oh!!!   I just this minute got a text from my D in L, my son has had to go to the ER and may well be admitted to the hospital, Robert Woods Johnson U hospital. They are waiting on blood results.  And he may well have a CT to check the stent placement too.  I'm glad about that.

He has a fever, and they suspect the Picc line is infected.  AGAIN dr. Hirose, should not have sent him home from JH for IV nutrition without a port!!! since the picc lines can get infected.  That man has done nothing right, it seems!!!  Yes, I am sooo angry with him.
OK, I will tell another reason why I am so angry with this man for wasting our precious time. Probably not PC, but here goes...

For many weeks we were unable to get Dr. Hirose in JH to take the time to consider my sons condition. Prior to his being admitted this time, over the course of MANY long weeks of vomiting and inability to keep food down, and an endoscopy up here,  we were unable to get Dr. H  to reply to calls from our physicians up here, tho the local doctors had sent images and records of their attempts to help him.  He simply did not reply, no calls back.   He just didn't seem to want to bother with my son at all, and didn't return calls from my desperate D in Law either. Because of the extremely complicated surgery he had had 2 years ago, (the rouen-Y and lobectemy etc.) these local doctors were hesitant to take any steps, and wanted help from JH. Our doctors up here felt baffled, and I think that is understandable considering the complexity of the surgery he had in 2012 and how few hospitals do that sort of surgery.

Their GP up here, a caring and responsive man,  had an endoscopy and cat scan done and sent those to JH, but still no response from Hirose.   Finally after desperately taking him to an ER in our area to be hydrated, the next day, beside herself with worry and still having received no contact with JH, she finally just put him into the car and started down to JH, a 3 1/2 hours drive,   calling first to say they were on their way and giving JH a heads up.

Hirose had his nurse call back as they were driving  and said to turn around, go back home, and  take some milk of magnesia, and a couple enemas, that he was probably constipated.  He did that,  and as a result wound up in the ER again, even more dehydrated, and was admitted to the hospital in renal failure. 
How he could recommended Milk of Magnesia and enemas to someone who had been unable to keep food down for several weeks, and who had already been in an ER to be given fluids for dehydration,  I do not know!!!  Seems absurd to me, but yes, I know i am not a doctor, still.....

If he had not been sent home and had been admitted to JH, he could have been treated several weeks earlier.  as it was, It took Centra State up here almost 2 weeks just to get his numbers back to normal.  We are lucky he didnt' have a heart attack, we are so lucky we didn't lose him then.   Finally when they did get his numbers back to normal, they were able to contact JH, and that time they had to wait a few days for a bed, and of course the snow storm.  He was finally transported down by ambulance.

I have no confidence in this man at all.  Our new doctor already said he couldn't understand how JH could send him home without a port, and now we are seeing the results of that bad judgement with this possible picc line infection!!

Ok, I vented,  Maybe I shouldn't have, but it just seems that by his unresponsiveness to all the pleas from our doctors and my D in L over the last couple months we have lost precious months when my son should have been getting proper treatment.  I pray that all this lost time will not impact my son's treatment too badly. Really sorry if I have said too much.  Yes, my info is all 2nd hand, I realize that, but my D in L has kept me informed at every  move they make.  Poor woman is emotionally exhausted at this point, and their little 7 year old daughter is suffering too from seeing her father in such awful condition, over the last couple months.  I must stop, this is much too long.  Forgive me.

12 (edited by Lainy Mon, 10 Mar 2014 10:42:27)

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

Dear Makua, I am just so very sorry about your son but my gut feeling is he just is not getting proper care. If I may give you a suggestion of another kind.
When I had Home Hospice for my Teddy they were fabulous. The last 4 days of his life I transferred him to in Facility hospice. They not only dropped the ball but because of them he had a horrific end. Long story short we sued for Neglect and won. This is what I would do and it will also help put your anger somewhere. I would start a file in your computer from day 1. After it is complete up to now send it to DIL to check over for factual information. Keep it handy in case you need it down the road. I would say the ONC and Hospital have grossly neglected your son. The best attorney will take the case on a contingency. I think this will help you and your DIL and if you want to know any more please email me.  BTW you don't want a surgeon who has never worked on a CC patient before! Oh, you might want to get a copy of his records up to now as well. Take a deep breath, hang in hang on and You never know how strong you are until "strong" is the only choice you have!

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, thank you, Yes, I will try and compile a file of what has been happening, to the best of my ability.  At the moment, I am waiting for a text from my DIL to see if my son has been admitted to Robert Wood hospital.   
I am beginning to feel befuddled, and am having trouble concentrating, Just burned a pan I left on the stove, (didn't turn off the burner, DUH!)

I really want to thank you for letting me vent and for being there.

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

Makua, I can do those dumb things on a good day! I catch myself putting my phone in the pantry or fridge! I have never been on an anti depressant but went on one 2 months ago as I couldn't stop crying. I am on a low dose 10mg of generic Lexapro. It has done wonders for me. No side effects and takes the edge off. You might want to talk to your own Doc about something mild as it will help you to get through this. No Mother can bare to see her child go through this. On top of that CC renders us helpless, all we can do is be there as things are not supposed to happen like this. BTW I also look for my phone while talking on it!

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,  looking for your phone while talking on it,  I think I have done that, or at least I know I have looked for it, while HOLDING IT, couldn't find it anywhere of course, since it was in my  hand. :-)  And always returning to a room to remember why I left it.  I'm doing that a  lot now.
My DIL just texted that they are giving him his ct scan.  She still doesn't know if he will be admitted.  She didn't say anything about the blood results.

Back 2 years ago when my son had his big surgery, my doctor gave me a prescription for Xanax, and that helped during that emergency.
I get it renewed so I know I have it, but I hesitate to use it, always thinking I should wait for a really bad situation.  I have used it when I had to put a dear cat to sleep, that I'd had for about 17 years. 
I used it a couple times in the last couple weeks to help me get back to sleep at 2 a.m., and it works, I can take a whole pill, but I only take a half pill.   Maybe I should take a half pill now to unclench my stomach while I'm waiting to find out what's wrong with my son..

I am so glad that you have found a medication that can help you, Bless your heart.  I think I am going to try and call Dr Schulick in colorado again, Can't  hurt to try.

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

Makua....I am rather disappointed that you are not able to reach Dr. Schulick.  You might want to mention this foundation as well.
Good luck
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

Marion,
Oh, very good, I am about to call, and will certainly mention the foundation.  I have doubts that our other messages actually reached him.  Thank you very much.

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

Marion,
Thank you so much for the encouragement to try yet again to contact Dr. Schulick.   REALLY Good news!!!  I was able to contact Dr. Schulick's office this time, and spoke at length to his assistant about what has been going on with my son.  She listened very patiently and then said just a moment, and when she returned she said that Dr. Schulick wants to have all my son's records sent to him, and the name of the hospital where he is currently in the ER and having the catscan etc. and physician's name etc.etc. They will contact JH also.
I gave them the necessary info for getting the records, and his assistant said she would call me on Wednesday, and she would ask for all the records and let me know, but that if I wanted to call her in the meantime, she gave me her telephone number.  Phew!!!

I could feel my stomach unclenching!!  What a high!  Thank you so much!! This time I called the link you gave me, it was a different number than we called before.
UPDATE:
My DIL just texted that JH called and wants to know if Robt Woods wants to transport him down there, but he doesn't want to go, He says it is too far away, and he is sick, his temp is 102 at the moment.  they are waiting for the blood cultures to come back, but the cat scan showed that the tumor is wrapped around the stent and they can't tell if it is blocking the stent or not, (If it is, I suppose that could account for the continued vomiting.)  I don't know how this compares to the last scan taken at JH.   
Now I have another question.  Tho he does vomit every day, he vomits less than before the stent.  He was actually able to eat an English Muffin yesterday, (I was shocked to hear that just now)   And he kept the muffin down!!.  What comes up, he says, is like a sort of stomach acid, just liquid, so we do not really understand that. Something must be getting through the stent, so it can't be totally blocked. (seems to me)

My DIL was sooooo happy to hear I had contacted Dr. Schulick!!!   But then  now she is very upset by having to make yet another decision about whether or not to have him transported down to JH, or let him stay here.  I said she should wait and see what Dr. Schulick has to say on Wednesday, and in the  meantime, he is safe in Robert Woods hospital which is supposed to be a very good hospital and which is much closer to home.
She just called and is heading home,  didn't want to leave him, but she was up all night, checking his temp. etc. and is really exhausted and has to go to work tomorrow.  She will go check on him before she starts.
They are giving him antibiotics and we are hoping he will feel better tomorrow.
I am hoping my extremely swollen glands will go down, so I can feel safe to visit him without fearing I will give him some additional infection.

Thank you so much again. Bless you all, I am so glad I found this wonderful place.

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

Makua -
Sounds like things are headed in a better direction than they were. So glad to hear that. One thing you might suggest to your DIL is that she ask for Home Health (visiting nurses) at home when he gets to come home. They can help a lot with the management of all the stuff he needs at home including the PICC line, nutrition and Port when it is placed.
I will say though that getting a port will not be an absolute for no infections in the future. The PICC and the Port both will always increase the risk of infection just because it is a foreign body in your body. As a nurse I have dealt with many PICC's and Port including with my husband and have had good luck and bad luck with both. I generally prefer the port though just because it is under the skin and when not accessed is not a worry. In fact my husband's PICC got a blood clot around it and the Port was pulled for continual blood infections although the Port wasn't the source.
It's a good thing you were the squeaky wheel and it sounds like you really go the ball rolling.
Good luck and hopefully things are all going to be better now.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

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

Makuna I am so glad to hear that you got hold of Dr. S. Just want to say...look at you tonight! You have more strength than you ever thought because I see a great change from this morning to tonight. We all need a little hope and then we can climb the highest mountain! Stay strong you are not alone as we are all here.

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....you have accomplished  what you had set out do.  Congratulations and kudos to you.
Sending tons of good wishes your way.
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

Below is what I found Marinol. I don't have experience with this prescription pill but am glad you mentioned it as it may be of interest to others.  They mention importance of precise dosage, potential serious side effects from overdose and potential for serious withdrawals (indicating it can be addictive when used long term).
I also want to mention that Dr Sanjay Gupta is hosting a documentary tonight on CNN about medical marijuana in its various forms and uses. Interestingly, on the news this morning, he mentioned another CBD-rich marijuana medication (not Marinol) used as an antisezure med, even in babies, that has very little THC (the ingredient which make a person feel "high"). Other THC-based forms are for pain control, as an appetite inducer and anti-nausea med. The doc tonight is called "Weed 2: Cannabis Madness".

MARINOL ORAL USES
Marinol is aka Dronabinol and is used to treat nausea and vomiting caused by cancer chemotherapy. It is usually used when other drugs to control nausea and vomiting have not been successful. Dronabinol is also used to treat loss of appetite and weight loss in patients with HIV infection. Dronabinol (also called THC) is a man-made form of the active natural substance in marijuana.
How to use Marinol oral
Read the Patient Information Leaflet if available from your pharmacist before you start taking dronabinol and each time you get a refill. If you have any questions, ask your doctor or pharmacist.
Take this medication by mouth as directed by your doctor, usually 3 to 4 times daily if you are taking it to control nausea and vomiting or twice daily (before lunch and before dinner) if you are taking it to treat appetite loss. Follow your doctor's instructions carefully.
The dosage is based on your medical condition and response to treatment. If you are taking this medication to control nausea and vomiting, your dosage may also be based on your body size.
Do not increase your dose or use this drug more often or for longer than prescribed. Your condition will not improve any faster, and your risk of serious side effects will increase.
This medication may cause withdrawal reactions, especially if it has been used regularly for a long time or in high doses. In such cases, withdrawal symptoms (such as irritability, trouble sleeping, restlessness, hot flashes, and diarrhea) may occur if you suddenly stop using this medication. To prevent withdrawal reactions, your doctor may reduce your dose gradually. Consult your doctor or pharmacist for more details, and report any withdrawal reactions immediately.
Along with its benefits, this medication may rarely cause abnormal drug-seeking behavior (addiction). This risk may be increased if you have abused alcohol or drugs in the past. Take this medication exactly as prescribed to lessen the risk of addiction.
Tell your doctor if your condition persists or worsens.

Willow

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

Thanks to all for your kind replies and help.
My DIL just phoned me that Dr. Schulick's assistent just called her, she only now got the message my DIL left.
It seems that Dr. Schulick still does not know that my son is trying to contact him, the doctor is away for 2 weeks.  However, his assistant has all the records from John's Hopkins now. She cannot get the records from Robert Wood Johnson hospital since it seems hospitals do not give out any records until after a patient has been discharged.  I do not understand that at all, seems counterproductive to me.  In any case, the assistant said they will want him to come out to Colorado for an appointment on April 24, and he will be seen by a whole team of specialists.  My DIL was calling me from work, so when she enumerated all the specialists, I could not keep them all in mind, and she was talking hurriedly from work.  It seemed like every kind of doctor you can imagine, a whole team. 
I would imagine that if Dr, Schulick does not want this appointment to take place when he gets back, he will let us know.    I am very happy that they have made contact with my DIL, since she always has the most up to date info, and I, of course get my info 2nd hand.

My son is going to spend the whole weekend and some of next week in the hospital.  He evidently had a fungal infection which caused the 3.5 fever.
His temp is good now, the meds are working,  and he feels much better.  He has been keeping his food down and is on a more normal diet.  He cannot begin his chemo till his blood shows that all infection is gone.  Nor can he have any other sort of port put in place etc.
I have enomrous swollen glands, and feel awful, (I think it is all getting to me) so I won't be able to visit him in the oncology ward, but I call him on the phone.

I really misunderstood Dr. Schulick's assistant and thought she had spoken with him, but at least we have an appointment if the doctor wants him to keep it, and so there is nothing else for me to do in the meantime. I am so glad that they are in direct contact with my DIL now.

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

Makua -
Sound like things are headed in the right direction now. It's too bad he has the infection but at least he is in the hospital getting treatment now. The medications they are giving him are probably going to make him feel a whole lot better. Fluids and all the other stuff will help too.
We have been down the infection road several times too. Once just two days before his surgery.....when they placed his bile drain he got a blood infection. They treated him with antibiotics and anti-fungal medications and were still able to surgery. But he was on oral stuff for a month after surgery.
Then he had three more infections after that. Never did find the cause although they think it is from his gut where the surgery was. It seemed that every time we had chemo three days later he was in the hospital for a 5 day stay. So far none with the chemo we are one now.
I would suggest to your DIL to get Home Health involved since maybe they can help keep him out of the hospital and it is most likely covered with their health insurance. Will give her and extra set of eyes on him without having to go in to the doctor all the time.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

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

Dear Makua, I am so glad to hear your son is getting better. I am also extremely happy he is going to Colorado. The best thing is to have a team and now he has one! Your DIL seems so be advocating for your son very well and she relays the news to you and that is all good. It also sounds like you are both close and both have done a good job. I wish for your son to have continued progress and can't wait to hear what they tell him in Colorado. Best wishes and good 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.