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.

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.

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.