Re: First time here, God bless you

Lliana...Stay strong just as you have been all along.  I suppose that due to Guy's lowered immune system, he contracted an infection while in the hospital.  Good to hear that he is responding favorably to the antibiotics.  What about the fluid accumulation?  Have you noticed an improvement?  What are the doctors saying?
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: First time here, God bless you

God bless you people and thank you for your replies.

Just a short update: the infection is almost gone and the liquid is gone also. Can you imagine? So, the specialist from emergency suppose that the liquid acummulation in his body until now was caused by Cellulitis infection and not by the cancer itself. And that my Guy was "lucky" to arrive yesterday at emergency, otherwise they may never discover the cause of his fluid retention also. Unofficialy, this doctor told me - between two eyes only - that they have manny cases like that, just because they don't want to ask the opinions of other departments in the hospital. I answered to him - "That is good to know".
So i have gone today to the management of the hospital and i asked them very clear that, from now on, i want my husband's cancer to be threated in to a multidisciplinary way, otherwise i will ask his entire dossier and i will move him to another hospital. And that will be not in Belgium and not in Europe but in USA.

By the way, i want to ask a second opinion - i think it came the time to do that - on M.D. Anderson, Houston - Texas. 

I would like your opinion about this.

Thank you again,
Liliana

Re: First time here, God bless you

Lilian, you are amazing and look at the advocate and caretaker you are in such a short time. Not that we wanted the title but you are doing a great job. You can always get a second opinion by gathering test results and all LABS and faxing over to the Doctor, and yes one of the best is Dr. Javle at MD Anderson in Houston. I just switched here in Phoenix to our new MD Anderson (I have another type of rare cancer and in a watch mode) and I was so impressed. Another best is Sloan Kettering. Oh, and Barnes Jewish Hospital in St. Louis, MO a Dr. Chapman. Best of luck and I will be anxious to hear! So glad hubby is doing so much better.

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: First time here, God bless you

Lilian...you are doing a fantastic job.  Obtaining a second opinion is a "must" with this disease (this is what I believe.)  Already you have requested for a multidisciplinary team to be involved.  Question: Is Dr. Eric van Cutsem part of this team? 
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: First time here, God bless you

Hello, everyone,

and thank you for your replies and informations.

I am very tired, because the all day i am with my Guy there, to help and watch out. Things are going better. The guys from the emergecy are amazing how good they are. Guy is treated with DALACIN (Clindamycin) for the Cellulitis:

http://en.wikipedia.org/wiki/Clindamycin

But the fluid it was coming back. So they are giving to him also Burinex for the fluid and Clexane for the Thrombosis. His apetite is back ok. The anemia is still very much there but improving.
For his cancer, Guy has a team of 6 professors, all of them in the area of gasthroenterology and hepato-billiary areas of Onchology. 3 of them i know them by name:

Pr. Dr. Van Cutsem - gastroenterology - the big boss of all - so he is the superviser on the case of my husband;

Pr. Dr. Verslype - hepatobilliary area - our doctor of choice to comunicate, thinking out of the box - love him;

Pr. Dr. Prennen - hepathology; this one is with theclinical trials mostly.

Well they did a great job with Guy until now and they are still doing.
The problem is not with them but with their assistants, wich are not comunicating everything to the professors, not putting informations in the computer and they are taking decisions without asking or informing the professors. And like that mistakes were made, medication was prescribed - like Avelox. And after making mistakes they are gone, they have finished their stage in the department and other new are comming and taking from the begining. Some of them are correct and good interested to do their job, others are there just because their mom was wanting to have a doctor in the family.

And the second thing is that, here, the cancer it is not treated multidisciplinary. At least this is what we are experienced until now. It has to take alot of effort from the pacient that they are deciding to ask the opinion of an other medical discipline. I don't know anymore. Anyway, for my Guy i solved the problem. For others, let's hope. I requested that my husband to be evaluated and treated multidisciplinary. And they already started - Hemathology, Endocrinology, Genetics etc. etc. How manny times i had to beg them to do it, until i wrote the request, it didn't happened.

Ok, i hope you all are ok, people, and i would like to embrace you all - cause people like you are rare birds in the sky.

PS: About the second opinion we will have to wait, because of the anemia. Guy needs to recover first, before starting allover. But I am thinking MD Anderson endeed and also Switzerland.

Have a good time and God bless you all,

Liliana

Re: First time here, God bless you

Liliana, all in all it is a good report today. We also have what they call House Physicians in the Hospitals and I can remember when Teddy had one of his blood infections from the CC and a House Doctor came in and wanted to give him a transfusion. Well the ONC showed up at the same time and told him to get the hell out of the room! The ONC said, "I am the ONC, not you". It was kind of funny. We just have to be on our toes and be strong and insist. Listen, girl, you need to get some rest too, be kind to yourself, it's a long journey!

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: First time here, God bless you

Liliana...University Hospitals are teaching Hospitals. Here we benefit from the most up todate research and treatment however; the issue with the ever changing staff can cause some of the problems you have encountered.  But you have a respectable team of physicians working with Guy; just sorry to hear of the complications.
Liliana, have you been given an explanation in regards to the recurring fluid build-up?
I am crossing my fingers for continuous improvement.
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