First time here, God bless you
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- This topic has 31 replies, 6 voices, and was last updated 12 years, 3 months ago by marions.
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September 12, 2012 at 11:48 pm #64164marionsModerator
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,
MarionSeptember 12, 2012 at 7:36 pm #64163lainySpectatorLiliana, 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!
September 12, 2012 at 7:11 pm #64162soimalbMemberHello, 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
September 11, 2012 at 5:19 pm #64161marionsModeratorLilian…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,
MarionSeptember 11, 2012 at 2:01 pm #64160lainySpectatorLilian, 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.
September 11, 2012 at 11:23 am #64159soimalbMemberGod 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,
LilianaSeptember 10, 2012 at 10:01 pm #64158marionsModeratorLliana…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,
MarionSeptember 10, 2012 at 10:01 pm #64157marionsModeratorLliana…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,
MarionSeptember 10, 2012 at 8:29 pm #64156lainySpectatorLiliana thank you so very much for the update! This is why we call it a roller coaster ride. Up and down and up and down. All in all this is good news as now they can take care of these problems and Guy will feel so much better. Oh, I am so relieved for you both. Please keep us posted on his progress, you may not agree with me but you are doing just great! Be strong!
September 10, 2012 at 8:19 pm #64155soimalbMemberHi, everyone
My husband passed trough the night. UH of Leuven send it theyre ambulance this morning – God he already couldn’t get up – and he is now at the Emergency department – this guys from here are really fantastic, from the emergency. Guy has Cellulitis. Because his body was full with fluid before, the skin was making litle tinny breakes, unvisible for our eyes. And, with a low blood counts an such alot of chemo before, it was just enough for the bacterya to atack. The doctor was telling that he took it already from the hospital before.
So they told that people taking chemotherapy may have find themselves in situations like this. We arrived just in time for the treatment, cause the infection was starting to arrive in the blood.
So, i am happy now and hopefully Guy will not need skin remove. Anyway, the area affected it was reduced already at 50 % as it was when we arrived. So the antibiotic is working. They gave to him also a blood transfusion conssidering his anemia.
Just to update and to thank you for encourangement.
Thank you Lainy,
LilianaSeptember 9, 2012 at 8:08 pm #64154soimalbMemberWich person normal in the brains could believe this. Suddenly it reminnds me of Romania in the bad days. Even now is almost the same.
To see this happening in Belgium, the center of EU and NATO, it seems surreal, but it is happening. I saw so manny people in this 2 years and 6 months sended at home in poor situation, with the explanation -” a week at home will do you good and then you can back”- and i received from their families that they died.
The explanation is very simple but very disgusting- they “cannot” affort to have a patient treated by them dying in the hospital. The U Hospital from Leuven has a very good rate in Europe. Now they are busy to bild a city of it. They “cannot” have mistakes and failures – if you know what i mean – bad publicity, the famous name will suffer.
I am 140 km from Leuven, they will send an ambulance in the morning. It is also important to be there in Leuven because they know all his history.
Anyway, for sure i will call emergency if i see is going bad.
i have to go,Liliana
September 9, 2012 at 7:48 pm #64153lainySpectatorLiliana what an interesting life you have led. I still find it so hard to believe that the Hospital/Doctors are allowing your husband to be in this bad situation. How far are you from the Hospital and I think I would take him in to Emergency to get the treatment he needs. I hope you have a white night also but I would get on the road.
September 9, 2012 at 7:34 pm #64152soimalbMemberHi, Percy
Hi, everyoneUnfortunately, i am not in a medical field, my specializasion is in psichology – i am a shrink and shrinks are not doctors. We just had studied the Central Nervous Sistem and Psichogenetycs and Pathology as a part of Medicine field. And a bit of everything from medical affections wich can need psychological therapy.
I wrote about Avelox in particular – made by Bayer – and not about other fluroquinolones. Anyway Avelox it is also given in USA and those 8 deaths are occured in USA. Bayer had writen this letter only in EU and didn’t have the williness to write also for USA. On internet you will find alot of complains of american people wich were treated with this particular medicine and they are all trying to aware other people what this medicine did to them.
Avelox’s dangerous side effects are apearing in delaye – after 10 to 30 days after administration. At this moment, after 20 days of taking Avelox, my husband is suffering of acute kidney failure, possible liver failure. Tomorrow we are going back to the hospital, we called already, and because we are farr from Leuven, Belgium, we have to wait until then. I am dressed right now and observing my husband’s state of beeing durring his sleep and prepared to call 112 emergency, in case something is going wrong. In the mean time the Universitary Hospital of Leuven is calling me each hour to see how we are and giving instructions.
So, here, in Belgium, i will have a white night and, hopefully not a death night.
My husband is full of fluid and looking like an elephant and having short of breathing.
As medical preparation, i must tell, i had practice first aid in the oblygathory army service in comunistic Romania, where i was born – i know resuscitation, how to give treatment, trachetomy and so on and so on, i can recognise different situations of life threat. As for the fact that i know some more things without beeing in medical area of expertise, this is comming from my second job as a reporter – so i have to have knowledge, i have to investigate and i am very good on searching on internet and other information places.
Thank you very much for your reply. It is helping to speak with somebody that is taking me serious, cause here, in Belgium, nobody will listen – they are too much of thik necks. Sorry i am just in a kind of high stress right now.
If you don’t mind i’ll put this message to you also on the topic.
Thank you again Liliana
PS: Excuse my English
September 9, 2012 at 6:54 pm #64151lainySpectatorHi Percy, Teddy had at least 2 blood infections a year for sevEral years that required hospitalization. He was always put on Levaquin IV which worked right away and never had side effects! On the other hand, my mom who lived to be 94, would not drink enough water and kept getting dehydrated. She didn’t want to drink water as she said it made her go to the bathroiom more! LOL At any rate they would put her on Cipro which caused her bladder infections. So there we go. We all react differently to different meds. My personal belief is we need to listen to our doctors until proven otherwise. And as usuasl you give such good advise. Getting my Passport ready for that big cruise!
September 9, 2012 at 6:27 pm #64150pcl1029MemberHi, everyone,
I did response to the email she had sent to me with the above link included.
All the adverse drugs reactions that Avelox has had been reported to the FDA and appeared in both Levaquin and Cipro professional package inserts.
the most important adverse drug reaction with the black box warning for most the fluroquinolones is tendinitis (swelling of the tendon) and tendon rupture.
STS and TEN ,anemia , jaundice and increase liver enzymes , hepatic failures including death had been reported but rarely.
BTW thanks Liliana to increase our awareness of the side effects of the medications we took.God bless.
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