First time here, God bless you (Page 1 of 2)

Oh,

Thank you, Lainy, for your quick reply. God, I always loved the americans ... people of action. I am the same, no time to loose.

For short, because I am so tired now, walking kilometers per day in this Leuven hospital.

The CC it is iside the liver tubes, perihilar like they say. At the time of diagnose, the primary tumor was 17 cm large, with hepatomegaly and splenomegaly and metastasis to the hepatic lymphnodes around the liver and to the thymus. There were no metastasis to the liver or other organs then those that i mentioned. They gave to him 3 months to live, without treatment.

Now the treatment, very short: 1.Gemcitabine/Cisplatin; 2. SIRT with Yttrium 90 spheres; 3. 5-FU/Leucovorin; 4. one time FOLFOX 6.
He supported everithing magnificent I can say, considering. He had some side effects but nothing serious. Just tiredness and a bit of loss of concentration.

Now, the Gem/Cis worked fantastic. No metastasis anywhere, prymary tumor reduces to 6 cm. But, i forgot to meansion a thrombose in the portal vein, but not to worry.

After, SIRT and 5-FU leucovorin didn't work at all. More than that, some other litle tumors appeared in the liver (3 of 1 cm each of them).

In this condition, they had to start imediately FOLFOX 6 - this time under supevision and hospitalisation. It did very good. The last MRI was validated 3 days ago and it shows stability of the tumors and even a slight shrinking of all of them.

But now we are fighting with another serious thing - ANEMIA DUE TO CHEMOTHERAPHY. It is very severe - hemoglobyn today was 7,2. Thay cannot continue with chemo. When they gave him FOLFOX 6 the hemoglobin was under 9, but they did it together with blood transfusion 3 x 250 ml and one long term EPO. Now they want to send Guy at home for recovery of anemia and then an MRI at the begining of October , already programed. Now i am scared to get out from the hospital at home.

Ok i wrote already so much, i didn't realise.
What do you think until now Lainy?

Should i be scared?

I am not so easy scared and i am a powerfull and strong woman, it is just a tought.
I would like also to start a forum about ANEMIA DUE TO CHEMOTHERAPHY, because it seems that is very serious and alot of pacients with long term chemo will have, and they are not given treatment for it. And that it is very dangerous and can put in jeopardy all those wich have still chances to survive this illness.

Oh, i am tired, but so happy to finally be with you people. Who can understand you the best?

Thank you for your attention,
I embrace you all with love and care, Liliana

Oh, thank you, also, Marions, thank you all, but here, i just have to sleep now.
But just another thing, did anybody from the pacients that you know, took the antibiotic named AVELOX and made by Bayer, in additional to treat a cold or coughing?
If someone had, please tell me what was the experience.
If you didn't NEVER accept and NEVER take it. It almost killed my GUY. 
I will come as soon as i can with details. It is just a warning being concerned that at one moment they will give to someone of our pacients and they will suffer like my husband did.
Ok, it is just enough for today,
Bye, bye from Belgium
Liliana

Hi Liliana,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband. But thats good that you have joined us all here as you have come to the best place for support and help, and I know that you will gets tons of both from all of us here.

You don't have to make any excuses about your English, it seems great to me. I'm from Scotland and your English is better than mine! Thanks for sharing what your husband has been through, he sure has been through so much. Please keep coming back here and ask as many questions as you have. We'll do our best to answer them if we can. We don't promise to have all the answers but we'll help as best as we can.

Looking forward to hearing more from you.

My best wishes to you and your husband,

Gavin

Hi, everyone,

Avelox is in the same class of antibiotics known as fluoroquinolones--such as Cipro and Levaquin here in the States for treatment of pneumonia, and pancreatitis among other illness. It is a board spectrum antibiotics worth to be mentioned.
As always, most if not all , there are always side effects come with the medications and individual reaction to drugs can be different .
God bless.

Hi, 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.

Hi, Percy
Hi, everyone

Unfortunately, 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

Wich 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