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Old 07-01-2008, 02:43 AM   #1
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how long we can live with stage 4 follicular lymphoma

how long we can live with stage 4 follicular lymphoma without any difficulty(58 years old)

 
Old 07-01-2008, 04:50 PM   #2
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Re: how long we can live with stage 4 follicular lymphoma

That is a question we all ask! With several possible treatment plans, there is no reason why we cannot live for several years but everyone is different and there are no certainties in life. I think it is more important to live each day to the fullest and not think about how long we are going to be here. It is also important to get regular checkups so any possible recurrences can be caught early and either treated if appropriate or watched carefully. Having faith in one's oncologist and doing one's own research is of the essence too.

I was diagnosed with stage 4 grade 1 follicular lymphoma two years ago this month. I had no symptoms and I had 6 months of treatment. My oncologist would still like me to have maintenance Rituxan to delay any relapse but I am reluctant. I feel wonderful right now, so prefer to live in denial!

All the best.
Alison

 
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Old 07-04-2008, 08:02 PM   #3
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Re: how long we can live with stage 4 follicular lymphoma

I just read an article from the American Society of Clinical Oncology stating that the drug Rituxan is safe. A positive attitude is imperative too. I know how hard it is, I truly do. My husband has just been diagnosed with Perphieal T Cell Lymphoma.

I wish you the best. Keep us posted.

 
Old 11-18-2008, 08:22 AM   #4
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Re: how long we can live with stage 4 follicular lymphoma

I was diagnosed w/follicular nhl on 3/15/05. At the time i was diagnosed i was stage 4/grade 4. Went to duke for second opinion and was confirmed although they think i was stage 3. Have been thru many treatments all were tollerated well with little to no side effects. Cvp w/rotuximab was my choice rather than chop or rice which is what my onc recommended. I was lucky to have found someone in my area who had been dealing with follicular nhl for almost 11 years at that time. She has passed on this year making it 14 years from the time she was diagnosed. Her message to me was to try to live a good quality of life without using the hard chemo, which is what she did, and is what i've been doing as well. So although our cancer is considered terminal it doesn't mean your will die tommorrow. I've just gone thru a new treatment called zevilan r90. No side effects but very expensive rotuximab w/high dose radiation. Has put me in remission or as my onc calls it maintained for up to 6 years without any more chemo.

Last edited by moderator2; 11-19-2008 at 05:40 AM. Reason: posted contact info

 
Old 01-01-2010, 11:47 PM   #5
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Re: how long we can live with stage 4 follicular lymphoma

Can you tell me more about the Zevalin? Some of my docs think it's good, others don't. Did you only have your cvp-r the one time and when you relapsed, just used zevalin and are ok now? if so, for how long?
I have stage 4 that has transformed to aggressive but after r-chop am in remission. I'm just scared.
why did you chose not to do chop?

 
Old 01-04-2010, 02:33 PM   #6
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Cool Re: how long we can live with stage 4 follicular lymphoma

Quote:
Originally Posted by BchGrl View Post
Can you tell me more about the Zevalin? Some of my docs think it's good, others don't. Did you only have your cvp-r the one time and when you relapsed, just used zevalin and are ok now? if so, for how long?
I have stage 4 that has transformed to aggressive but after r-chop am in remission. I'm just scared.
why did you chose not to do chop?
I was given the option to take Zevalin or continue many more mainteniance treatments of rotuximab which I have been hearing not so good reports on. The problem with Zevalin is the cost of the drug even if you have full coverage. My insurance carrier covered 95% of the cost of the treatment which was almost $132,000.00 for the 2 treatments. So far I have been clear of any return of NHL but I can feel it comming back(nite sweats, lymph node swollen areas, Blood works has always been good. It has been 19 months. One thing I will say, that for the first time my onc has strongly recommended a healthier diet(limit red meats, carbs, fatty foods) and less work as I tend to be a work a holic. I have noticed when I eat, sleep and excercise properly my NHL does go away and no sweats at night. I have been thru 2 cvp-r over 12 month period when I was first diagnosed in 05. I choose not to do CHOP as I found a Friend here that had been living with folicular nhl for the past 14 years and she has always had a very good quality of life through all of her treatments which were primarily cvp/rotux/bexar/zevalin and in that order. Rotux is starting to get bad rap for long term usage so I decided not to continue the rotux maintenance. What are your Doctors saying is wrong with Zevalin? I had no I'll effects from it at all and will probably make it 36 months with no treatments of any kind. My Onc gave my est. of 10 to 12 years once I was diagnosed before my Quality of life will take a major turn for the worst. Nothing to be scared about unless you watch the news every Night. Whats going on in Mainstream of normal Life is way worse then what you and I have. Smile Life only gets better with age.

 
Old 01-04-2010, 03:51 PM   #7
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Re: how long we can live with stage 4 follicular lymphoma

I saw Dr. Roger Macklis at Cleveland Clinic (radiation oncologist) & he works with Zevalin because it is a form of radiation. He likes it but he said the hard evidence is not there. He's just a believer because what he reads of it's mechanisms makes sense.
My oncologist is not a beleiver, but I can't remember why. IT seems that she often is negative about something if I bring it up that "another Dr. mentioned this". If she didn't suggest it, she doesn't like it. I could be wrong, but I think it's an ego thing. I no longer go to her because I just don't trust her.
I didn't know zevalin was that much! If my ins covers it, they will cover 100% but I think that was the problem as of sept 2009. It wasn't approved yet, but Dr. Macklis said he thinks it will be within a matter of a few months.

My oncologists put me on Main Rituxan but that alone cost $15,000 & I'm sure she gets a portion of it. The Drs at sloan kettering said they don't use it, they see no benefit. My oncologist at City of hope said he's not sure, but leans toward, no benefit & builds a resistance. Theres a clinical trial that just ended but the results are not out yet.
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Stage 4 (transformation occured)
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Old 01-05-2010, 06:28 AM   #8
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Question Re: how long we can live with stage 4 follicular lymphoma

Quote:
Originally Posted by BchGrl View Post
I saw Dr. Roger Macklis at Cleveland Clinic (radiation oncologist) & he works with Zevalin because it is a form of radiation. He likes it but he said the hard evidence is not there. He's just a believer because what he reads of it's mechanisms makes sense.
My oncologist is not a beleiver, but I can't remember why. IT seems that she often is negative about something if I bring it up that "another Dr. mentioned this". If she didn't suggest it, she doesn't like it. I could be wrong, but I think it's an ego thing. I no longer go to her because I just don't trust her.
I didn't know zevalin was that much! If my ins covers it, they will cover 100% but I think that was the problem as of sept 2009. It wasn't approved yet, but Dr. Macklis said he thinks it will be within a matter of a few months.

My oncologists put me on Main Rituxan but that alone cost $15,000 & I'm sure she gets a portion of it. The Drs at sloan kettering said they don't use it, they see no benefit. My oncologist at City of hope said he's not sure, but leans toward, no benefit & builds a resistance. Theres a clinical trial that just ended but the results are not out yet.
I've been very lucky, as I have a young Doctor that seems to truly care about his cancer patients. (No ego involved with him) I always do my research on the internet after meeting with him and try to consult with other people who have folicular NHL. I don't always go with his recommendations when it come to ct scans or pet scans or bone maro biopcy as I know my body and I know when the Cancer is comming back. Unfortunatly in order for most insurance carriers to cover the expense of these treatments you must have conclusive proof which means ct scans and bone maro biopcy's are needed when the Cancer returns. I had My Zevalin in August of 2008 and it was approved back then. If your radioligest is telling you it hasn't been approved yet he is not correct. I was the Third person in my state to recieve it after approval. It may just be new to him. Before under going Zevalin you should make sure you are dealing with a Doctor who has dealt withe the Zevalin Treatment before. If not handled properly I'm sure it can be a problem. Zevalin is injected in two stages, the first is with rotuximab drip for 8hours then nuclear radiation(r90) then you wait 6 days and you must have a scan to make sure that the radiation is not tageting or staying around your vital organs before they inject the r111Zevalin w/rotuximab. I almost was not able to have the 2nd injection because the 1st injection was not clearing my system quick enough. I had to do a second scan the morning of the r111 to make sure my system was cleared. All went well and have been maintained for 18 months now. I had no ill effects from the Zevalin as of today, But you never know what all this radiation is doing to your body. I guess the thought behind all this is it really doesn't matter as people that have Folicular NHL will not be around latter in life to see what all the radiation would have done to your body...Nice talking to you, keep smiling, Scott49

 
Old 01-05-2010, 08:23 AM   #9
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Re: how long we can live with stage 4 follicular lymphoma

I guess I misspoke. The Dr. said zevalin is approved but only for certain situations. I think it was not approved for initial treatment. It has to be after you relapse (I think). Or vice versa.
The sad thing is, you're right. We don't have to worry about the long term effects of these treatments, because fNHL will get us first. Maybe they will find a cure while we are still living!
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