Topic: First time here, God bless you

I just want to introduce myself to you, dear people

God bless you all and your families

My name is Liliana and I am from Belgium. I have double nationality - romanian and belgian.

Me and my husband Guy we live in Belgium. My dear husband is 55 years old and he was diagnosed with unresectable intrahepatic cholangiocarcinoma 2 years and 6 months ago. Since then we are living fighting to this illness, together with the belgians experts doctors from the Universitary Hospital from Leuven (Louvain) in Belgium.

I will be happy to share with you all our experience until now. Maybe, who knows, a good idea can come of it.

Excuse my poor English.
God bless you all, pacients and families and doctors and scientists

Re: First time here, God bless you

Dear Liliana, welcome to our exceptional family and I do believe you are the first one from Belgium. I love your beautiful name and English is just fine. By the way my best friend came over from Romania when she was 16. I am so sorry about your husband. Now that you know you can do the English so well can you please tell us a little more? Where is his CC and what are they doing or have done for him? We are all here to help each other in every way so you are not alone at all as we truly care. Looking to hear more about your husband and your family.

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

soimalb....welcome to our site.  First and foremost please know that you English is just fine.  We are always hoping to include more global patients on our site therefore, please know that I am thrilled to have you participate in the discussions. 
I would love to know more about your experience with this cancer; who is involved in the care, how does the medical system work in your adopted country.
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

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

Re: First time here, God bless you

Hello Liliana!
I would like to welcome you as well. I'm not so far away, i the south part. Of Sweden.
I was diagnosed 2 years and 5 months ago, almost like your husband!
I've been on gemox, gemsar xeloda and gemcis, 6 chemoembolizations and I feel fine. I have a lot of tumors in my liver, they hav shrunk and they have grown some also, but most important, I feel just fine!

It's easy to say don't be scared, it doesn't help anyone, but sometimes you do get scared anyway. It's ok. Life is scary sometimes!
Hoping for the best for your husband and you, he seems very strong!!!
Love
Maria

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: First time here, God bless you

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

Re: First time here, God bless you

Liliana, you are awesome! I know you are scared but your attitude as a whole is one of strength. Your husband has really been through the mill as we say. But we do love the words stability and shrinkage...our favorite words. Do not be alarmed about your husband coming home for awhile as Chemo will keep on working and the rest will probably be good for him as well as to help the anemia. We see this often when one is going through chemo. You might want to try our search button at the top and just type in anemia and see what some older posts say about it. Good night or should I say good morning now?

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

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: First time here, God bless you

Hello everyone,

I am so upsaid to tell you that, here in Leuven (Belgium), they want to send my husband at home to recover, in the condition that this morning he had a Hemoglobin of 6,2. And they say it is ok. Also in the condition of not giving any treatment for anemia at home, what so ever, and also with the cnowledge that he suppose to be the driver of the car in the way to home.

My husband it is trusting them and he wants to go home. Maybe he doesn't realise how serious and poor is his situation or maybe he is just... "selfish" - without thinking that he can cause an accident on the road? But, what about the doctors here - are they just having pumpkin seeds in the place of brain, or they just want to let him to die at home?

Or what about this "experts" here, are they simply crazy?

I don't know what i suppose to do now?

I feel so alone and treated like i am some kind of a stupid. But i learned enough in my life and in the oblygatory army service in Romania, to know the basics of medicine and life threatening situations.

Now you can have a very good example how is going on in Belgium with taking care of the peoples health. And they are many examples like mine. But, when it suppose to have your money they are all only a smile.

Please somebody help me with an opinion, even if it can be stupid just write to me.

Thank you for your understanding.

God bless you all, Liliana

PS: maybe an interesting link for those interested in the subject of ANEMIA DUE TO CHEMOTHERAPY


http://www.oncolink.org/resources/artic … mp;id=1009

Re: First time here, God bless you

Dear Liliana, I just don't understand how they can send him home with no treatment for anemia even at home. Have they told you what kind of treatment he can have at home for the anemia? Would it help to talk to another Doctor or even the Manager of the hospital?  Its is very early morning here but soon some others may come on with other ideas. This is maybe a weird thought but perhaps you can alway take him home and turn around and go to another hospital to the Emergency room if you see he is not getting better. I just don't know how everything works where you are.

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

Hello, God bless you

Just arrived at home with my husband - thank you Lord.
he is sleeping and i have to cook.

Will come with details later. Just a quick unswer: here is Belgium and not USA, if you can understand what i mean. Will come with explanation a later. Anyway, i cannot sleep.

See you later,
Liliana

Re: First time here, God bless you

Liliana, I found that "comfort" foods worked well for Teddy. He loved homemade chicken soup chock full of chicken, pastas (of course he was Sicilian) you get the idea. Cooking is good therapy as well. I hope your husband starts feeling better quickly and I have a feeling just being home will help. You need rest too, so please take care of yourself.

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

Dear Lainy and everyone,

In fact, i am happy that i am at home and we arrived safe and we didn't kill us or - more important - some inocent drivers on the road back.

We, the romanians, we have alot in common with italian food, greek food, spanish food and, in general meditereanean food. So, i am so pleased to hear that you also are cooking like that. Because is the best for the healt.
just right now i am very busy to coock a very rich Minestrone soop, in plus putting some chicken pieces. When my guy wakes up, he will have a happy surprise.

Now, about the treatment for anemia -blood transfusions, EPO - they say it is not working at the moment - but it worked before anyway. With the iron he is very well my Guy. On another hand, the main professor dr. explained to us that to give this treatment without the chemo together, can jeopardise his chance of curing in the future. And the reason is that, in the situation that he is now, it is better that he tries to make new blood cells by himself. Anyway he just called me and told to not be scared at all because with the food that he can eat at home and the high level of oxygen that the area where we are living is rich and also with the famous Belgian mineral watter from Spa - wich we have the luck to take it from the robynet, my husband will be back on track in a few weeks. He also called the regional hospital and medical assistance to come everyday to measure the blood and also to see his state of beeing. When the hemoglobyn will arrive to 9, my Guy will come to Leuven again and they will have allready a plan to follow further.

About what i was upsaid more is the fact that you can let a man to drive 140 kilometers in such of state. I told to him that this is unforgivable. Now, with no treatment i anderstood now but, for the other, i already made a complain to the board of the hospital.

The first nurse has to comein an hour.

So i have to prepare a bit here and i will come back with more interesting things than this story with the lack of responsability.

Thank you for your reply, see you later,
Liliana

Re: First time here, God bless you

Liliana, I am glad to hear things are calming down. This is why we call the journey of CC a roller coaster ride. One minute up one minute down. Thanks for the update and ....Mmmmm...I can smell your wonderful Minestrone!

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...hmm...why am I suddenly so hungry?  I am pleased to hear that you are home.  Your husband will thrive - great food, clean air, and a fantastic physician by your side.  Sounds like a wonderful recipe.
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

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: First time here, God bless you

Hello, people

In answer to PCL1029 about Avelox
Here is the official letter sended by bayer in 2008 to the healthcare providers in Europe:

http://www.mhra.gov.uk/home/groups/pl-p … 014103.pdf

Anyway, it caused severe side affects on my husband.

Liliana

18 (edited by PCL1029 Sun, 09 Sep 2012 14:44:10)

Re: First time here, God bless you

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: First time here, God bless you

Hi 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!

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

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

Re: First time here, God bless you

Liliana 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.

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

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

Re: First time here, God bless you

Hi, 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,
Liliana

Re: First time here, God bless you

Liliana 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!

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

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