how do you know you're gonna get well?
how do you know you're gonna get well?
I'm norwegian. I hope it's ok for me to write in english. I can read german, so please answer me in which language you prefere! It doesn't exist any good cites for Hodgkins in Norway, so I'd like to join you. There is about 80 people getting Hodgkins in Norway every year. They don't seem to want to talk to eachother; I will have to talk to you. Of course I hate it. I'm fine almost all the time. I'm AIV. I'm getting 6-8 treatments of ABVC... I don't even know the name.
Hi marte!
Welcome to our forum. Feel free to write in english. Certainly most of us will understand you.
If you have any questions or just want to talk, simply post here or by personal message. The people in this forum are very helpful and many of them are sitting at home, having time. 
There are also a lot of ex-Hodgies who are already cured but still visit the forum.
Very important for you, in case you don't already know: Morbus Hodgkin is normaly curable! It is not nice to have it, but you'll get rid of it for sure!
What do you mean by "I'm AIV"? Is that Hodgkin stadium IV without special symptoms? We call it IVa here.
I myself also have stadium IV. I'm not sure if it is A or B since I had symptoms but only very seldom.
In germany the standard treatment for advanced stadiums is BEACOPP. ABVD is given for lower stadiums but normally only 2 - 4 times. It's interesting to hear about the differences in other countries.
Did your treatment already began? And is it given outpatient or do you have to stay in a clinic the whole time?
Just try to think positive and visit the forum. Then MH won't have a chance!
Holger
Welcome to our forum. Feel free to write in english. Certainly most of us will understand you.
If you have any questions or just want to talk, simply post here or by personal message. The people in this forum are very helpful and many of them are sitting at home, having time. There are also a lot of ex-Hodgies who are already cured but still visit the forum.
Very important for you, in case you don't already know: Morbus Hodgkin is normaly curable! It is not nice to have it, but you'll get rid of it for sure!
What do you mean by "I'm AIV"? Is that Hodgkin stadium IV without special symptoms? We call it IVa here.
I myself also have stadium IV. I'm not sure if it is A or B since I had symptoms but only very seldom.
In germany the standard treatment for advanced stadiums is BEACOPP. ABVD is given for lower stadiums but normally only 2 - 4 times. It's interesting to hear about the differences in other countries.
Did your treatment already began? And is it given outpatient or do you have to stay in a clinic the whole time?
Just try to think positive and visit the forum. Then MH won't have a chance!
Holger
25.08.05: Diagnose MH, Mischtyp, Stadium IVa (Milz- und KM-Befall)
Therapie: 8 x BEACOPP eskaliert, recht gut vertragen
Nachwirkungen: z.T. Gelenkschmerzen u.ä.
11.04.2006: Laut PET-CT alles wieder weg!
...
2009: nächste Kontrolle im Dezember
--> Vorstellung<--
Therapie: 8 x BEACOPP eskaliert, recht gut vertragen
Nachwirkungen: z.T. Gelenkschmerzen u.ä.
11.04.2006: Laut PET-CT alles wieder weg!
...
2009: nächste Kontrolle im Dezember
--> Vorstellung<--
-
arminio
Hello Marte,
you are very welcome here.
In Germany the Hodgkin disease counts as remediable up to 95 %.
And I am shure, you also get cured.
If you understand the Geman, you´ll gonna find al lot of informations about the treatment of Hodgkin. You can use The "Suche"-function at the bottom of this side.
You can ask all you want - there is always someone here answering you.
I wish you a good time without feeling too bad.
Nice greetings to Norway.
Armin
Its long,long ago i wrote the last time something in English
but it gives me experience
What is AIV
you are very welcome here.
In Germany the Hodgkin disease counts as remediable up to 95 %.
And I am shure, you also get cured.
If you understand the Geman, you´ll gonna find al lot of informations about the treatment of Hodgkin. You can use The "Suche"-function at the bottom of this side.
You can ask all you want - there is always someone here answering you.
I wish you a good time without feeling too bad.
Nice greetings to Norway.
Armin
Its long,long ago i wrote the last time something in English
but it gives me experience
What is AIV
hallo marte
auch von mir ein willkommen. da kann ich meine englischkenntnisse ja gleich mal aufbessern. aber schreiben tu ich nicht in englisch. will mich nicht ganz blamieren.
schön, dass du das forum gefunden hast. frag ruhig , was dir am herzen liegt. wir sind hier ja grenzüberschreitend und sogar österreicher sind willkommen
alles gute für dich
sassi
@holger. vielleicht könntest du das, was marte schreibt übersetzen? ich glaub es gibt doch einige, die es nicht verstehen. und du bist ja einer , "der nur zu hause sitzt , und zeit hat"
auch von mir ein willkommen. da kann ich meine englischkenntnisse ja gleich mal aufbessern. aber schreiben tu ich nicht in englisch. will mich nicht ganz blamieren.
schön, dass du das forum gefunden hast. frag ruhig , was dir am herzen liegt. wir sind hier ja grenzüberschreitend und sogar österreicher sind willkommen
alles gute für dich
sassi
@holger. vielleicht könntest du das, was marte schreibt übersetzen? ich glaub es gibt doch einige, die es nicht verstehen. und du bist ja einer , "der nur zu hause sitzt , und zeit hat"
Diagn.7/99:MH 4b,BEACOPP,.Bestrahlung, 2010-Brustkrebs
http://forum.hodgkin-info.de/viewtopic.php?p=9147#9147
SASSIS HP
http://forum.hodgkin-info.de/viewtopic.php?p=9147#9147
SASSIS HP
Hi Marte,
welcome to you.
Jetzt schreib ich aber auch in deutsch weiter. Der Signatur kannst du meine Hodgkingeschichte entnehmen. Bei Fragen kannst du auch privat anfragen. Englisch verstehe ich und kann mich auch verständigen, jedoch die Schriftsprache ist nicht so gut.
Liebe Grüße
Robert/roro
@ Armin, Holger: Hier wäre angebracht, die Übersetzungsseite her zu verlinken. Ich denke ihr wisst, welche ich meine.
welcome to you.
Jetzt schreib ich aber auch in deutsch weiter. Der Signatur kannst du meine Hodgkingeschichte entnehmen. Bei Fragen kannst du auch privat anfragen. Englisch verstehe ich und kann mich auch verständigen, jedoch die Schriftsprache ist nicht so gut.
Liebe Grüße
Robert/roro
@ Armin, Holger: Hier wäre angebracht, die Übersetzungsseite her zu verlinken. Ich denke ihr wisst, welche ich meine.
Die Musik drückt das aus, was nicht gesagt werden kann und worüber zu schweigen unmöglich ist.
Victor Hugo
http://einklang-katrin.blogspot.com/
Victor Hugo
http://einklang-katrin.blogspot.com/
Hej marte
Welcome to the forum!
How many treatments havew you had already then? I have also heard of the 80 Hodgkins per year in norway. That actually makes it hard to find companions in the own country... (piece of luck you're not from Iceland, eh? ). I know of a dansk forum, but that one isnt very active. Another 80 MH's, i guess.
Anyway, just feel free to ask anything like!
Jason
Welcome to the forum!
How many treatments havew you had already then? I have also heard of the 80 Hodgkins per year in norway. That actually makes it hard to find companions in the own country... (piece of luck you're not from Iceland, eh?
). I know of a dansk forum, but that one isnt very active. Another 80 MH's, i guess.
Anyway, just feel free to ask anything like!
Jason
IIa/IIIa, Diagnose 06.2004, 8 X BEACOPP esk. 08.2004-03.2005, Remission 04.2005
MH 2004
Rezidiv 08.2012, 2 x R-DHAP, anschl. Hochdosis & Stamzelltransplantation
MH 2012
R-DHAP - Blog
''Move ahead
And your ass will follow...''
FSK
MH 2004
Rezidiv 08.2012, 2 x R-DHAP, anschl. Hochdosis & Stamzelltransplantation
MH 2012
R-DHAP - Blog
''Move ahead
And your ass will follow...''
FSK
-
Priapismus
- Beiträge: 74
- Registriert: 02.06.2005 17:18
- Wohnort: Münster
Hi Marten,
a warm welcome to our forum. As the others mentioned: feel free to ask whatever you like.
Morbus Hodgkin being a rather rare type of cancer , it's not suprising yo don't find any norwegian sites about it.80 norwegians been hit by hit per year isn't that much, in germany there are about 1500 people being concerned.
->We are more or less lucky to have a broad base for sienticif research.
Anyway, i hope your doctors are familiar to the disease and know how to fight it, otherwise you'll get much knowledge by reading this site. .
Best wishes for a successfull treatment.
Pria
a warm welcome to our forum. As the others mentioned: feel free to ask whatever you like.
Morbus Hodgkin being a rather rare type of cancer , it's not suprising yo don't find any norwegian sites about it.80 norwegians been hit by hit per year isn't that much, in germany there are about 1500 people being concerned.
->We are more or less lucky to have a broad base for sienticif research.
Anyway, i hope your doctors are familiar to the disease and know how to fight it, otherwise you'll get much knowledge by reading this site. .
Best wishes for a successfull treatment.
Pria
17.05.05: MH 1a (mischtyp) , rechts supraclavikulär Bulk; ab 29.06.05: HD 13 Studie, 2 Zyklen Av+ 30 Gy Strahlen; 10.04.06: drei Manifestationen in der ektomierten Milz; Therapie ab 25.04.06: 8 Zyklen BEACOPP esk.; Remission seit 17.10.06
hi marte,
nice to have you here at axel´s forum. i would say it is the worlds largest and best hodgie-forum.
if there are any questions...........please ask. here are so many stupid hodgies and ex-hodgies
and they have so much time to answer anyway. we all have the same disease and it is like a big great family.
so long
matze
nice to have you here at axel´s forum. i would say it is the worlds largest and best hodgie-forum.
if there are any questions...........please ask. here are so many stupid hodgies and ex-hodgies
and they have so much time to answer anyway. we all have the same disease and it is like a big great family.
so long
matze
07/1985 - Stadium PS IIa - 40 Gy, danach 6 Zyklen COPP
07/1993 - Rezidiv Stadium IIIb - 4 Zyklen COPP-ABV-IMEP
16 Jahre in Remission
05/2009 Hinterwandinfarkt
12/2009 schwere Mitralklappen- und Trikuspidalklappenrekonstruktion
03/2010 Neuerkrankung hochmalignes NHL, schnellwachsend, aber gut auf die Therapie ansprechend. Geplant 4 Zyklen DEXA-BEAM, gerade mitten im dritten Zyklus.
carpe diem
07/1993 - Rezidiv Stadium IIIb - 4 Zyklen COPP-ABV-IMEP
16 Jahre in Remission
05/2009 Hinterwandinfarkt
12/2009 schwere Mitralklappen- und Trikuspidalklappenrekonstruktion
03/2010 Neuerkrankung hochmalignes NHL, schnellwachsend, aber gut auf die Therapie ansprechend. Geplant 4 Zyklen DEXA-BEAM, gerade mitten im dritten Zyklus.
carpe diem
hejhej Marte,
välkommen här ... det är verkligen bra att du har trovat var "morbus hodgkin forum"! Jag pratar lite svenska och jag vet att maniskor fram Norge och fram Sverige kan versta varandra .....
It must be hard being from a country where only so few people get this illness (finding information and support) .... but I am sure you have excellent treatment possibilities
I wish you only the best,
Ina
välkommen här ... det är verkligen bra att du har trovat var "morbus hodgkin forum"! Jag pratar lite svenska och jag vet att maniskor fram Norge och fram Sverige kan versta varandra .....
It must be hard being from a country where only so few people get this illness (finding information and support) .... but I am sure you have excellent treatment possibilities
I wish you only the best,
Ina
Zuletzt geändert von Ineli am 24.10.2005 09:53, insgesamt 2-mal geändert.
@Sassi: Ist ok, wenn ich auf was englisches von Marte stoße, mach ich mal den Übersetzer.
Das was die anderen auf englisch antworten soll ich aber nicht auch übersetzen, oder? Sooo langweilig ist mir dann zu Hause auch wieder nicht.
Wie beim Schach-Thread gilt aber: Es dürfen gern auch andere!
@Marte: Wenn ich falsch übersetze, sag bitte Bescheid!
Also hier das was Marte am Anfang geschrieben hat:
Das was die anderen auf englisch antworten soll ich aber nicht auch übersetzen, oder? Sooo langweilig ist mir dann zu Hause auch wieder nicht.
Wie beim Schach-Thread gilt aber: Es dürfen gern auch andere!
@Marte: Wenn ich falsch übersetze, sag bitte Bescheid!
Also hier das was Marte am Anfang geschrieben hat:
Woher wißt ihr, daß ihr gesund werdet?
Ich bin Norweger. Hoffentlich ist es ok, wenn ich hier in Englisch schreibe. Ich kann deutsch lesen, also antwortet bitte in der Sprache, die ihr bevorzugt. Es gibt keine guten MH-Seiten in Norwegen, daher möchte ich mich gern euch anschließen. Es gibt jedes Jahr ca. 80 MH-Erkrankte in Norwegen. Die wollen aber anscheinend nicht miteinander sprechen; ich muß mich an euch wenden.
Natürlich hasse ich es. Es geht mir die meiste Zeit gut. Ich hab Stadium IVa. Ich bekomme 6-8 Zyklen ABVC... weiß nicht mal die genaue Bezeichnung.
25.08.05: Diagnose MH, Mischtyp, Stadium IVa (Milz- und KM-Befall)
Therapie: 8 x BEACOPP eskaliert, recht gut vertragen
Nachwirkungen: z.T. Gelenkschmerzen u.ä.
11.04.2006: Laut PET-CT alles wieder weg!
...
2009: nächste Kontrolle im Dezember
--> Vorstellung<--
Therapie: 8 x BEACOPP eskaliert, recht gut vertragen
Nachwirkungen: z.T. Gelenkschmerzen u.ä.
11.04.2006: Laut PET-CT alles wieder weg!
...
2009: nächste Kontrolle im Dezember
--> Vorstellung<--
hey marte,
a very warm welcome to our forum! it's really great getting international even though it's not for a joyful reason 
as you can see there are many of us you can correspond in english (and holger will translate for the others
), so feel free to ask any question which might come across or just share your feelings with us!
this forum is a great help and very supporting, especially during bad days
if you need help with any german answer or phrase, we will be there to help you (maybe sometimes it will be hard to get the the ironical tongue-in-cheek in the right way....).
you can learn more about the individual members in the "mitgliedervorstellung".......
we are all very optimistically (or at least most of the time) and MH is curable up to almost 90%. "if it must be cancer, than luckily it's MH!"
i'm sure you will win this fight and i'll keep my fingers crossed for you.
greetings to norway
molly
a very warm welcome to our forum! it's really great getting international
even though it's not for a joyful reason
as you can see there are many of us you can correspond in english (and holger will translate for the others
), so feel free to ask any question which might come across or just share your feelings with us!
this forum is a great help and very supporting, especially during bad days
if you need help with any german answer or phrase, we will be there to help you (maybe sometimes it will be hard to get the the ironical tongue-in-cheek in the right way....).
you can learn more about the individual members in the "mitgliedervorstellung".......
we are all very optimistically (or at least most of the time) and MH is curable up to almost 90%. "if it must be cancer, than luckily it's MH!"
i'm sure you will win this fight and i'll keep my fingers crossed for you.
greetings to norway
molly
Diagnose 03/2005, MH Stadium IIIA, 8 x BEACOPP esk. ab 04/2005 - Bestrahlung überstanden und fit für neue Schandtaten
Thank you all for the warm welcome!
When I wrote, I was in the middle of a small anxiety attack, I'm afraid.
I have been very strong, most of the time. My doctors told me early that this is curable, so I decided to do my best at relaxing, and to take one step at the time. But sometimes I feel like I have no one to talk to, and that bad news is just around the corner.
You probably know exactly what I mean.
In Skandinavia the treatment for IVa is 6-8 cures of ABVD, and with no radiation. They say this is the most up to date treatment there is. Do any of you know anything about that?
Jason, you are absolutely right, it's called IVa, not AIV... I was a bit fast on the buttons, there. I have a stadium IV with increased lymph knots above the diaphragm, but with some spreading to the lungs.
I have had 4 cures, that is, 8 times ABVD. Had a CT-scan in september, wich showed a decrease in the largest lymph knot from 3,5 cm to 2.0. All the knots had decreased. That is a very good sign, of course!
Again, thank you so much for including me!
Love, Marte
When I wrote, I was in the middle of a small anxiety attack, I'm afraid.
I have been very strong, most of the time. My doctors told me early that this is curable, so I decided to do my best at relaxing, and to take one step at the time. But sometimes I feel like I have no one to talk to, and that bad news is just around the corner.
You probably know exactly what I mean.
In Skandinavia the treatment for IVa is 6-8 cures of ABVD, and with no radiation. They say this is the most up to date treatment there is. Do any of you know anything about that?
Jason, you are absolutely right, it's called IVa, not AIV... I was a bit fast on the buttons, there. I have a stadium IV with increased lymph knots above the diaphragm, but with some spreading to the lungs.
I have had 4 cures, that is, 8 times ABVD. Had a CT-scan in september, wich showed a decrease in the largest lymph knot from 3,5 cm to 2.0. All the knots had decreased. That is a very good sign, of course!
Again, thank you so much for including me!
Love, Marte
Zuletzt geändert von marte am 26.10.2005 18:53, insgesamt 2-mal geändert.
Hier die versprochene Übersetzung für alle, die Marte sonst nicht verstehen:
I'm not sure if the BEACOPP treatment is newer or older than ABVD, but as posted before it is used for higher stadiums in germany whereas ABCD is used at lower stadiums. Maybe you ask your doctors about it, but probably it won't be a good idea to change from ABVD to BEACOPP in the middle of your treatment.
Holger
marte hat geschrieben:Ich danke Euch allen für die warmherzige Begrüßung!
Als ich geschrieben habe, war ich mitten in einer Panik-Attacke, fürchte ich. Ich war die meiste Zeit sehr stark. Meine Doktoren haben mir früh gesagt, daß MH heilbar ist, also habe ich entschieden, mich möglichst zu entspannen und alles Schritt für Schritt anzugehen. Aber manchmal habe ich das Gefühl ich habe niemand mit dem ich sprechen kann und daß schlechte Nachrichten gleich um die nächste Ecke warten. Ihr wißt bestimmt genau was ich meine.
In Skandinavien ist die Behandlung für Stadium IV 6-8 Zyklen ABVD ohne Bestrahlung. Sie sagen, das ist die aktuellste Behandlung die es gibt, Weiß jemand von Euch etwas darüber?
Jason, du hattest recht, es wird IVa genannt und nicht AIV... Ich war da ein bißchen schnell beim Tippen. Ich habe Stadium IV mit vergrößerten Lymphknoten oberhalb des Zwerchfells, aber mit Lungenbefall.
Ich hatte bisher 4 Zyklen, also 8 mal ABVD. Im September hatte ich ein CT, das eine Verkleinerung des größten Knotens von 3,5 auf 2,0 Zentimeter zeigte. Alle Lymphknoten sind kleiner geworden. Das ist natürlich ein gutes Zeichen!
Nochmal vielen Dank, daß ihr mich aufgenommen habt!
Love, Marte
I'm not sure if the BEACOPP treatment is newer or older than ABVD, but as posted before it is used for higher stadiums in germany whereas ABCD is used at lower stadiums. Maybe you ask your doctors about it, but probably it won't be a good idea to change from ABVD to BEACOPP in the middle of your treatment.
Holger
25.08.05: Diagnose MH, Mischtyp, Stadium IVa (Milz- und KM-Befall)
Therapie: 8 x BEACOPP eskaliert, recht gut vertragen
Nachwirkungen: z.T. Gelenkschmerzen u.ä.
11.04.2006: Laut PET-CT alles wieder weg!
...
2009: nächste Kontrolle im Dezember
--> Vorstellung<--
Therapie: 8 x BEACOPP eskaliert, recht gut vertragen
Nachwirkungen: z.T. Gelenkschmerzen u.ä.
11.04.2006: Laut PET-CT alles wieder weg!
...
2009: nächste Kontrolle im Dezember
--> Vorstellung<--
-
arminio
Wenn ich mich nicht täusche, ist Beacopp ein Ergebnis der deutschen Krebsforschung. Das Beacopp-Schema wird fast ausschliesslich in Deutschland angewendet, teilweise auch in den Verein. Staáten.
Standardtherapie für Morbus Hodgin weltweit ist immer noch das ABVD-Schema. Die ersten Beacoppstudien in Deutschland 1998 oder 2001 ausgelaufen bei Google mal HD 7 oder HD 8 eingeben.Auch in den meisten europäische Nachbarländern gibt es fast immer ABVD mit/ohne Radiatio.
LG Armin
Habe mal in Deutsch gepostet ist so kompliziert für mich alles in Englisch obwohl ich ja mal in Canada gelebt und gearbeitet habe- ist aber so lange her.
Sorry, Holey Moley
Standardtherapie für Morbus Hodgin weltweit ist immer noch das ABVD-Schema. Die ersten Beacoppstudien in Deutschland 1998 oder 2001 ausgelaufen bei Google mal HD 7 oder HD 8 eingeben.Auch in den meisten europäische Nachbarländern gibt es fast immer ABVD mit/ohne Radiatio.
LG Armin
Habe mal in Deutsch gepostet
ist so kompliziert für mich alles in Englisch obwohl ich ja mal in Canada gelebt und gearbeitet habe- ist aber so lange her.
Sorry, Holey Moley
Holger: How nice of you to translate everything!!!
I just hope you don't find it too annoying, I might not dare to write, not to cause you too much trouble
And I'm sorry, it was you Holger, not Jason, who clearified the AIV-IVa thing.
I know of course that I can't change the treatment in the middle of it, but I'm just curious, since it seems you do it differently in Germany. It is all these things that I do not know, that makes me nervous sometimes.
I have been browsing the site today, finding, if not so many answers, at least a lot of comfort from all of you, seeing that it's not only me struggeling with Hodgkin's.
What a fantastic site!
Marte
I just hope you don't find it too annoying, I might not dare to write, not to cause you too much trouble
And I'm sorry, it was you Holger, not Jason, who clearified the AIV-IVa thing.
I know of course that I can't change the treatment in the middle of it, but I'm just curious, since it seems you do it differently in Germany. It is all these things that I do not know, that makes me nervous sometimes.
I have been browsing the site today, finding, if not so many answers, at least a lot of comfort from all of you, seeing that it's not only me struggeling with Hodgkin's.
What a fantastic site!
Marte
Norwegian girl, age 30. Diagnose July 2005: MH stadium IVa with some spreading to the lungs, 6-8 ABVD.
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