1

(3 replies, posted in Grief Management)

Thank you Lainy,

   I don't know yet how I am doing, but I have Guy's ashes with me at home and that is helping alot. We both believed in spirituality and that we are never wanished after our bodies have stopped functioning in material way.

  So, Guy is with me and me with him. I feel him everywhere, helping me to say and do what I have to say and do here. He is guiding me always.

Thank you again,

Liliana

2

(3 replies, posted in Grief Management)

God bless you people and your families

   For you all, for your loveones, departed in a better world - where is no pain and sorrow - I pray for you and I dedicate this famous poetry, writen by the romanian poet, Mihai Eminescu:


       To The Star

Up to the star that's just appeared
The journey's long, and so
For thousand years its light careered
To reach us here, below.

It may have faded on its way
Of old, in blue spheres bright
Though only now its shining ray
Unfolds to this our sight.

The image of the star that died
Comes slowly to the fore:
It used to be when it would hide -
We see what is no more.

And likewise, while our yearning dove
Died in the deepest night,
The light of the extinguished love
Still follows us in flight.


And for my husband, Guy: I'll be with you soon, my Love

Liliana,
from Belgium and Romania

Hi, people

God bless you all and your families

My Guy just died on Sunday evening. He gone in peace, without any pain.

Thank you for your support.

I will continue to comunicate with you all and help you with important information, cause, at the and, is not cholangiocarcinoma was what kill him, so, maybe you want to know about it.

Again, God bless you and hope to hear from you,

Liliana, Belgium

4

(9 replies, posted in Introductions!)

Dear Leslie,

Wellcome. I am, also like you, a new member of this family here.
My husband, Guy (55 years old), was receiving radioembolisation with the product Yttrium 90 microspheres (SIRT) this year in january. His situation on that time was: primary tumor of about 6 cm diameter and a secondary very small tumor - both stable - and no matastasis. This result was achieved durring the treatment with Gemcitabine/ Cisplatin. But... Is always a "but". So, but our pr. dr. was saying to us that it is the time to try SIRT because the Gem/Cis seemed to not work anymore and Guy is at this stage a good candidate for SIRT. So we did it. After SIRT, at the begining of March this year we had the MRI scanning and it showed that SIRT didn't work what so ever so he was puted on treatment with 5 - FU Leucovorin ( he had 6 times transfusions of this regimen)- wich also didn't work at all. Now, he is in a very poor state and he is in the hospital with severe anemia and also ascites and also a Cellulitis infection. His bone marrow may be also affected, cause it seems that his anemia is getting worst and worst, day by day.

But what it is more important for you from my story here is that - FOR MY HUSBAND - radioembolization didn't work at all and also caused damage of the near healty tissues, fallowed by liquage and building up fluid. Our team of proffesors were arriving, on this fryday - and they validated a report-  to the conclusion that SIRT in january, combined with tumor progression after SIRT and 5-FU not working, is the cause of the poor state in wich Guy is today.

But, please, remember that this experience of ours it is just ours and for your husband may work. Anyway, a second opinion before deciding what to do i will recomand with all my heart, because i am really sorry now that i didn't asked.

With alot of hope for you,
Liliana from Belgium

PS: Please allowe me that this is also an update in my Guy's case also for everyone in our family here.

God bless you all

I am very scarred.

I don't know what to do. 6,2 hemoglobin and no treatment for anemia what so ever.
The rest is going in good direction.

thank you, and God bless you
Liliana

6

(25 replies, posted in General Discussion)

Hi, Jujubear

I think your mom should be taking care in the hospital. I will tell you why.
My husband has the same problem, Lasix didn't work. Taking oral treatment for fluid developing doesn't work. Medicine taken in perfusion form work directely, but Lasix seems to not work for any pacients that i met here, in Leuven - Belgium Universitary Hospital. Now, the professor of my husband, is giving to him Burinex - perfusion. It is working very good. I forgot to tell you that in the case of my husband a stent it is not possible to be implemented, it is to risky.

So, maybe this information will help you.

God bless you,

Liliana, Belgium

Hi everyone,
God bless you

I just found this recent article and i think it is very new and interesting.
It is alot to read and to digest but i would like your opinion about it.

Here it is the link:

http://www.discoverymedicine.com/Daniel … t-cancers/

And, because i am in Belgium, i will read you in the night.

hope to hear from you,
Liliana

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

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

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

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

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

Hi everyone

I think this topic will interess alot of us, so i propose it for our attention.

I will start with some links and i wait for some opinions and other informations from you.

Here they are:

1. http://www.hpb-center.ch/content.php?content=tumor
2. http://www.hpb-center.ch/content.php?content=bile_duct
3. http://www.hpb-center.ch/
4. http://www.gastroscience.ch/index.html
5. http://www.gastroscience.ch/research.html

Maybe the switszerland's way of aproaching our type of cancer can help someone.

Thank you for your attention,

Liliana

Hi, Marion

I reposted as you adwise me. You have right, there is the place for the topic.

Thank you alot,
Liliana

Here are some good websites and links:

1. http://www.apitherapy.org/

2. http://www.apitherapy.com/

3. http://www.mercola.com/article/diet/bee_pollen.htm

4. http://voices.yahoo.com/treating-anemia … 87228.html

5. http://www.livestrong.com/article/54469 … or-cancer/

Hello, everyone

For all of you, i opened this subject because, sooner or later, due the therapy of chemo or radiation, the majority of you will arrive to a severe anemia. This situation it is apearing by the wich kind of regimen of therapy you are taking and/or by cumulation in time of such powerfull stuff they are giving to you to cure you.
Severe anemia due to chemo and radiation it is a very difficult thing to treat and the most important thing is that they will have to stop to give you cure therapy. There are just a few treatments in our cases that it can be given - blood transfusion, EPO and iron - it depends how they conssider the best for you.

The problem is that the supplements doesn't really help, because our body doesn't assimilate the products that we are taking or the food that we are eating, not us much as we need to arrive at one Hemoglobyn of at least 9.

In the case of my husband, wich is in a very poor state of anemia due to long term chemo and radiation - 2 years and 6 months - he could resist this very well until now - without too much side effects than a slight fatique - because a few "simple" things and one amasing one. We turned back to the basics and let the civilisation away for others.

I will give you this:

- we sold everything that we had and puted the money in the bank for dark days or for eventually transplant;
- we moved in a very clean and high oxygenated area in Belgium named SPA - Ardenne - wich has lots of forest, peace and mineral watter to the robinet;
- we are not buying anything anymore - since 2 years and 6 months - from the supermarkets and we are having only products from the local farmers;
- the litle house in wich we are living now it is a very simple place with garden and green space and a caw named Arabella- caw from wich we have everyday raw milk - wich you cannot find anymore in the shops for food; i make my own yogurt and cheese and everything that you can have from milk;

Now, the "amasing" thing:

I took conection with a great romanian scientist in apyculture and he adwise us about the bee products: honey, pollen, queen milk and propolis.
The most powerfull it is the pollen and we had great results during the time, together with chemotherapy. It is just one condition- you have to find a producer of bee products in an notpoluted area and the pollen has to be raw and kept in the frizer. For my husband he had to take 2 tea spoons of pollen per day and keep it in the mouth until is disolved completely by the mouth juses and swolled. This is the way of taking wich my husband liked. A better and easyest way is to disolve a tea spoon in a half a glass of watter - not mineral watter but normal watter- and drinking. I asure you it is a great limonade.

Bee pollen is a powerfull booster, it works greater than any medicine for anemia and imunity and it is used in Romania terithory fror more than 3000  years.
Now, my husband started to take again the pollen and he is smoodly starts to feel back on a track. We will see on wednesday the blood levels. And in a few weeks i am sure he can have treatment again.

I will come back with some interesting  links for you all people.

God bless youl,
Liliana

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

Here are some good websites and links:

1. http://www.apitherapy.org/

2. http://www.apitherapy.com/

3. http://www.mercola.com/article/diet/bee_pollen.htm

4. http://voices.yahoo.com/treating-anemia … 87228.html

5. http://www.livestrong.com/article/54469 … or-cancer/

19

(5 replies, posted in General Discussion)

Here is more expert details about CLEXANE:

http://products.sanofi.com.au/aus_pi_clexane.pdf

Keep your faight up,

Liliana

20

(5 replies, posted in General Discussion)

Hi everyone,

My husband has portal vein thrombosis and he is treated with CLEXANE. Works fantastic.

I just have a very slight idea that the bleedings of your mom are not comming from the thrombosis but by severe anemia - very low hemoglobyn and hematocrit - wich are giving also as a side effect of hemofily. The blood is much too thinner and causes bleedings.

Clexane it is working very good for my husband and the bleedings are just now from the nose from time to time - well, thats because anemia is still not recover.

Here is a link about CLEXANE:

http://www.netdoctor.co.uk/heart-and-bl … exane.html

God bless you,
Liliana

Hello, everyone

For all of you, i opened this subject because, sooner or later, due the therapy of chemo or radiation, the majority of you will arrive to a severe anemia. This situation it is apearing by the wich kind of regimen of therapy you are taking and/or by cumulation in time of such powerfull stuff they are giving to you to cure you.
Severe anemia due to chemo and radiation it is a very difficult thing to treat and the most important thing is that they will have to stop to give you cure therapy. There are just a few treatments in our cases that it can be given - blood transfusion, EPO and iron - it depends how they conssider the best for you.

The problem is that the supplements doesn't really help, because our body doesn't assimilate the products that we are taking or the food that we are eating, not us much as we need to arrive at one Hemoglobyn of at least 9.

In the case of my husband, wich is in a very poor state of anemia due to long term chemo and radiation - 2 years and 6 months - he could resist this very well until now - without too much side effects than a slight fatique - because a few "simple" things and one amasing one. We turned back to the basics and let the civilisation away for others.

I will give you this:

- we sold everything that we had and puted the money in the bank for dark days or for eventually transplant;
- we moved in a very clean and high oxygenated area in Belgium named SPA - Ardenne - wich has lots of forest, peace and mineral watter to the robinet;
- we are not buying anything anymore - since 2 years and 6 months - from the supermarkets and we are having only products from the local farmers;
- the litle house in wich we are living now it is a very simple place with garden and green space and a caw named Arabella- caw from wich we have everyday raw milk - wich you cannot find anymore in the shops for food; i make my own yogurt and cheese and everything that you can have from milk;

Now, the "amasing" thing:

I took conection with a great romanian scientist in apyculture and he adwise us about the bee products: honey, pollen, queen milk and propolis.
The most powerfull it is the pollen and we had great results during the time, together with chemotherapy. It is just one condition- you have to find a producer of bee products in an notpoluted area and the pollen has to be raw and kept in the frizer. For my husband he had to take 2 tea spoons of pollen per day and keep it in the mouth until is disolved completely by the mouth juses and swolled. This is the way of taking wich my husband liked. A better and easyest way is to disolve a tea spoon in a half a glass of watter - not mineral watter but normal watter- and drinking. I asure you it is a great limonade.

Bee pollen is a powerfull booster, it works greater than any medicine for anemia and imunity and it is used in Romania terithory fror more than 3000  years.
Now, my husband started to take again the pollen and he is smoodly starts to feel back on a track. We will see on wednesday the blood levels. And in a few weeks i am sure he can have treatment again.

I will come back with some interesting  links for you all people.

God bless youl,
Liliana

Hello, everyone

For all of you, i opened this subject because, sooner or later, due the therapy of chemo or radiation, the majority of you will arrive to a severe anemia. This situation it is apearing by the wich kind of regimen of therapy you are taking and/or by cumulation in time of such powerfull stuff they are giving to you to cure you.
Severe anemia due to chemo and radiation it is a very difficult thing to treat and the most important thing is that they will have to stop to give you cure therapy. There are just a few treatments in our cases that it can be given - blood transfusion, EPO and iron - it depends how they conssider the best for you.

The problem is that the supplements doesn't really help, because our body doesn't assimilate the products that we are taking or the food that we are eating, not us much as we need to arrive at one Hemoglobyn of at least 9.

In the case of my husband, wich is in a very poor state of anemia due to long term chemo and radiation - 2 years and 6 months - he could resist this very well until now - without too much side effects than a slight fatique - because a few "simple" things and one amasing one. We turned back to the basics and let the civilisation away for others.

I will give you this:

- we sold everything that we had and puted the money in the bank for dark days or for eventually transplant;
- we moved in a very clean and high oxygenated area in Belgium named SPA - Ardenne - wich has lots of forest, peace and mineral watter to the robinet;
- we are not buying anything anymore - since 2 years and 6 months - from the supermarkets and we are having only products from the local farmers;
- the litle house in wich we are living now it is a very simple place with garden and green space and a caw named Arabella- caw from wich we have everyday raw milk - wich you cannot find anymore in the shops for food; i make my own yogurt and cheese and everything that you can have from milk;

Now, the "amasing" thing:

I took conection with a great romanian scientist in apyculture and he adwise us about the bee products: honey, pollen, queen milk and propolis.
The most powerfull it is the pollen and we had great results during the time, together with chemotherapy. It is just one condition- you have to find a producer of bee products in an notpoluted area and the pollen has to be raw and kept in the frizer. For my husband he had to take 2 tea spoons of pollen per day and keep it in the mouth until is disolved completely by the mouth juses and swolled. This is the way of taking wich my husband liked. A better and easyest way is to disolve a tea spoon in a half a glass of watter - not mineral watter but normal watter- and drinking. I asure you it is a great limonade.

Bee pollen is a powerfull booster, it works greater than any medicine for anemia and imunity and it is used in Romania terithory fror more than 3000  years.
Now, my husband started to take again the pollen and he is smoodly starts to feel back on a track. We will see on wednesday the blood levels. And in a few weeks i am sure he can have treatment again.

I will come back with some interesting  links for you all people.

God bless youl,
Liliana

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

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

God bless you all

It is just a try to get attention of this subject, and get any experience or information or opinion about it.

I will start with an interesting link:

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

Thank you for your attention,

Liliana from Belgium