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Richter's Syndrome

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Richter's Syndrome

by ultraman51 on Tue Jan 13, 2009 12:00 AM

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I was dx'd with richter's syndrome last week and have has first R-CHOP tx which went very well. I am quite upbeat and optimistic and view my dx as a challenge to overcome. I am wondering who else has had experiences regrading tx of Richter's and what regimens they were tried on.

RE: Richter's Syndrome

by jchalmer on Thu Jan 22, 2009 12:00 AM

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 Hi, my mother was dx'd with richter's transformation (large diffuse B-cell) and just underwent her second R-CHOP and, yesterday, intraferon injections. I would very much like to know more about your situation, since richters seems like a rare occurrence. My mother is a young 74.

On 1/13/2009 ultraman51 wrote:

I was dx'd with richter's syndrome last week and have has first R-CHOP tx which went very well. I am quite upbeat and optimistic and view my dx as a challenge to overcome. I am wondering who else has had experiences regrading tx of Richter's and what regimens they were tried on.

 

RE: Richter's Syndrome

by rahrahrah on Wed Feb 04, 2009 12:00 AM

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My father was told last week he had Non-Hodgkins. It wasnt until Monday of this week, when he got a copy of his records that it noted Richters Transformation. When he called the doctor to inquire what his actual diagnosis was, he was told yes, it was Richters. Also that his life expectancy was significantly shortened. My father did not question him beyond this. At this point he is scheduled for a round of chemotherapies starting next MOnday. I, his daughter, sit here trying to fill in the pieces. I have more questions than answers. Has anyone seen any positive outcomes or information on this Richters Syndrome?

On 1/22/2009 jchalmer wrote:

 Hi, my mother was dx'd with richter's transformation (large diffuse B-cell) and just underwent her second R-CHOP and, yesterday, intraferon injections. I would very much like to know more about your situation, since richters seems like a rare occurrence. My mother is a young 74.

On 1/13/2009 ultraman51 wrote:

I was dx'd with richter's syndrome last week and have has first R-CHOP tx which went very well. I am quite upbeat and optimistic and view my dx as a challenge to overcome. I am wondering who else has had experiences regrading tx of Richter's and what regimens they were tried on.

 


RE: Richter's Syndrome

by ultraman51 on Thu Feb 05, 2009 12:00 AM

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I was dx'd with richter's in December of 2008....I am being tx'd with R-CHOP and have had two chemo treaments so far..I seem to be responding quite well..lymph nodes have shrunk dramatically..my oncologist will do additional testing ..CT Scan and bone marrow aspiration after 4th treatment..I do know know the prognosis is quite bleak , However, I am firmly convinced I will beat this..I have been fortunate to this point as I seem to be coping well with chemo side effects and am gaining weight..I do also know from lots of research that many of us have a better prognosis when after chemo ( I am scheduled for 6 treatments) that an allogenic stem cell transplantaion is performed...I hope this helps

RE: Richter's Syndrome

by rahrahrah on Thu Feb 05, 2009 12:00 AM

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Thank you for the response. I am SO glad to hear you are doing well. I will show my dad your note and I know it will give him great inspiration. I can not begin to understand what you and my father are going through. I only wish that I can help him along the way. Good luck on your journey and I hope that we can touch base later to see your progression.

RE: Richter's Syndrome

by ultraman51 on Thu Feb 05, 2009 12:00 AM

Quote | Reply

 

On 1/22/2009 jchalmer wrote:

 Hi, my mother was dx'd with richter's transformation (large diffuse B-cell) and just underwent her second R-CHOP and, yesterday, intraferon injections. I would very much like to know more about your situation, since richters seems like a rare occurrence. My mother is a young 74.

On 1/13/2009 ultraman51 wrote:

I was dx'd with richter's syndrome last week and have has first R-CHOP tx which went very well. I am quite upbeat and optimistic and view my dx as a challenge to overcome. I am wondering who else has had experiences regrading tx of Richter's and what regimens they were tried on.
sorry it has taken so long for me to respond to your post...how is your mom doing at this point..being a "young" 74 I think enhances her chances for facing this challenge..I wish you and her the best and keep us posted

 


 

RE: Richter's Syndrome

by jchalmer on Fri Feb 06, 2009 12:00 AM

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On 2/5/2009 ultraman51 wrote:

 

On 1/22/2009 jchalmer wrote:

 Hi, my mother was dx'd with richter's transformation (large diffuse B-cell) and just underwent her second R-CHOP and, yesterday, intraferon injections. I would very much like to know more about your situation, since richters seems like a rare occurrence. My mother is a young 74.

On 1/13/2009 ultraman51 wrote:

I was dx'd with richter's syndrome last week and have has first R-CHOP tx which went very well. I am quite upbeat and optimistic and view my dx as a challenge to overcome. I am wondering who else has had experiences regrading tx of Richter's and what regimens they were tried on.
sorry it has taken so long for me to respond to your post...how is your mom doing at this point..being a "young" 74 I think enhances her chances for facing this challenge..I wish you and her the best and keep us posted

Thanks for responding. She's doing well. She lost her hair,  but she is merely tired from the chemo. She's in New York City, with a pretty good specialist doc. What has your experience been? Do you have a good doctor? Her cancer started in her nasal passage. I would really like to hear about your experience.

Best,

 Jessica


 


 

RE: Richter's Syndrome

by ultraman51 on Fri Feb 06, 2009 12:00 AM

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Hi Jessica,

I had lymph node enlargement for a good number of months in 2008.....I also had some pain on the right side of my jaw and was feeling much more fatigued then usual..it was affecting my running and working out (over the years I've ran a bunch of marathons and ultramarathons)......I thought I had an infection and made an appointment to see my dentist...he thought the problem was I needed a root canal and put me on antibiotics....I was on them for a few months and the lymph nodes swelling seemed to reduce somewhat in size..then in december of 2008 i went in for my routine yearly physical...my doc became very alarmed had me do a CT scan..became more alarmed after that...immediately got me in with a well known ENT doc where I live..he figured it was lymphoma of some type ..probably stage 2 and scheduled a bioposy for the next day..after the bioposy he let my wife know that I had cancer all over etc..I had gotten the name of a great oncologist from nurses at the hospital where I had my bioposy done and got in to see him day after xmas..by then the pathology report came back and after reading it and researching it assumed it was just diffuse large cell lymphoma...in meeting with my oncologist he told us that I had a slow growing lymphome that most likely turned into a fast growing one and that they would treat it as an aggressive lymphoma. R-CHOP was recommended and two days before chemo was to start I asked for a meeting of the treating team so we could go over again side effect/prognosis issues..I still had no idea it was definitely richter's but had read about it in my research..it was at thtat meeting that i was formally told I had richter's and advised that without chemo I'd rapidly deteriorate..develop "B" type symptoms and be dead in 6 months..first chemo was on 1/8/09 and my wife son and his g/f went with me..I'm lucky as i have good veins and a port was not needed..actually during chemo the lymph node swelling shrank a little in size and since that time the swelling reduction on both sides has been dramatic..my next tx is scheduled for 2/19 and three weeks later after the fourth treatment we will do more CT scans another bone marrow aspiration and have a better sense of where I'm at relative to beating this cancer... 

 Irwin

 

 

RE: Richter's Syndrome

by jchalmer on Fri Feb 13, 2009 12:00 AM

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I'm sorry it's taken me so long to reply to your message. I passed it along to my father, who is too overwhelmed, I think, to respond personally. But he was very interested. My mother is doing well. she's done her third chemo (along with an injection in her spine to kill a tumor near her brain). She's tolerating the treatment well though she seems very tired.

 

Jessica

RE: Richter's Syndrome

by ultraman51 on Thu Feb 19, 2009 12:00 AM

Quote | Reply

 

On 2/13/2009 jchalmer wrote:

I'm sorry it's taken me so long to reply to your message. I passed it along to my father, who is too overwhelmed, I think, to respond personally. But he was very interested. My mother is doing well. she's done her third chemo (along with an injection in her spine to kill a tumor near her brain). She's tolerating the treatment well though she seems very tired.

 

Jessica


Glad to hear she's doing well other then a little fatigue..I just met yesterday a woman in her fifties that was also dx'd with richter's over a year ago...she also has done the R-CHOP ( six treatments), is back to work and sees the oncologist once every six months for follow-up..she seems to be doing quite well...you might want to let your folks know about that...I am actually get my third treatment as I type and so far so good...

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