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Re:Hodgkins - what do you want to know? (1 viewing) (1) Guests
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TOPIC: Re:Hodgkins - what do you want to know?
#159
erinna (User)
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Hodgkins - what do you want to know? 1 Year, 8 Months ago Kudos: 0  
As someone whose had HL for about 2 yrs now, going into my third treatment schedule for it, I'd be happy to share my experience and understanding of it with others. Either on here or via PM.
 
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Hodgkins Lymphoma -
#1
Stage 2b - May 2006
Diagnostic Surgery & PICC Line
ABVD: July - Nov 06
Remission: Dec 06

#2
RELAPSE #1: Stage 3a - Dec 07
Diagnostic Surgery & Hickman Line
Hi-DICE: Jan - Feb 08
BEAM: March 08
Stem Cell Transplant: March 08

#3
RELAPSE #2: Stage ?? - June 08 (scan showed relapse and movement to left side)
Chemo Resistant
Radiation Therapy: July 08 - Aug 08

#4
Relapse #3 - Stage 2b I think
Now near liver and in bone of hip (I think)
Treatment - biopsy needed, and then probably BMT - thankfully my brother is a match.
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#174
ness17 (User)
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Re:Hodgkins - what do you want to know? 1 Year, 7 Months ago Kudos: 0  
Hi

Is it common for HL paitents to replase many times. I went into remission in aug 07 and replased in may 08 scared that this is not the last time that i have to go through this again. Any info would be great and how you handle it

Ness
 
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HL Diganosed dec 06 Port line
Remission Aug 07
Replase May 08
Stem Cell transplant sept 08
Currently waiting for radation to start
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#180
erinna (User)
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Re:Hodgkins - what do you want to know? 1 Year, 7 Months ago Kudos: 0  
Ness - Ive heard some people say that it is common to relapse.. others have told me otherwise, but it does depend on your own situation of course.

Ive relapsed twice - I start radiation on Thursday actually.

The first two diagnoses I was sad, stressed, tired and worried.. the third time I was just angry... now.. well, Im dealing with it by talking lots, seeing a counsellor regularly and trying to do things that make me happy and feel alive. Im an eternal optimist, so I dont see myself giving in to any of this.

Talking definitely helps! Support groups and associations are great, so Cancer Council, Leukemia Foundation, CanTeen etc are great places to look for help - and being around people you dont have to explain yourself to
 
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Hodgkins Lymphoma -
#1
Stage 2b - May 2006
Diagnostic Surgery & PICC Line
ABVD: July - Nov 06
Remission: Dec 06

#2
RELAPSE #1: Stage 3a - Dec 07
Diagnostic Surgery & Hickman Line
Hi-DICE: Jan - Feb 08
BEAM: March 08
Stem Cell Transplant: March 08

#3
RELAPSE #2: Stage ?? - June 08 (scan showed relapse and movement to left side)
Chemo Resistant
Radiation Therapy: July 08 - Aug 08

#4
Relapse #3 - Stage 2b I think
Now near liver and in bone of hip (I think)
Treatment - biopsy needed, and then probably BMT - thankfully my brother is a match.
  The administrator has disabled public write access.
#186
Cass (User)
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Re:Hodgkins - what do you want to know? 1 Year, 7 Months ago Kudos: 0  
HI

this is the first time i have logged onto this site...

i was diagnosed with stage 4 HL is Oct 2007 - i have 3 more weeks of radiation to go.. i thought it would then be over.. i cant even imagine a relapse.. Dont think i could handle treatment again!!!
 
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#187
Gra (User)
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Re:Hodgkins - what do you want to know? 1 Year, 7 Months ago Kudos: 0  
Hi my name is Graeme

I was diagnosed with HL back in dec 2005 and I have relapsed 3 times. I have had all posible chemo treatments and had radiation. The only hope I have now of remission is a donor stemcell transplant. I suggest to anyone who has relapsed multiple times to speak to their doctor about donor stemcell transplants as finding a compatible donor is very hard. It would be good to get the ball rolling as soon as posible. We have been searching for a donor since january
I am currently on a trial drug program which is stopping the HL from progressing but it wont get me into remission. The drug is called LBH589. Without this drug I dont think I would be here alive today. As with dealing with everthing over the last 2 and a half years, every day I wake up I am grateful that I am still here and try to enjoy my life as much as I can. I still have a chance of getting through this and that keeps me fighting.
"I strongly suggest to seek other opinions before comencing more treatments after relapsing" Just because he/she is a doctor doesnt mean his or her opinion is the correct one for you.
 
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#462
yummymummy23 (User)
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Re:Hodgkins - what do you want to know? 5 Months, 1 Week ago Kudos: 0  
hi erinna i had HL in 07/08 while i was pregnant im so scared of relaspe i have been in remission for a while and i responded really well to the chemo im just worried bout relaspe and the fact that i had chemo while i was pregnant and im so scared of falling pregnant again coz no one that i have spoken to can give me any answers sorry to dump on you not even sure if you will reply but thanks for listening
 
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