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Old 12-12-2009, 10:39 AM   #1
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Unhappy NH Follicular Lymphoma 3b grade

Does anyone have Follicular Lymphoma Grade 3b? Looking for information about it such as treatment and prognosis. My husband was just diagnosed with it and I can't find much on the web. He will be a stage 3 or 4. Still waiting on Bone Marrow Biopsy. Almost everything on the web is all about Grades 1 and 2 Indolent. Grade 3b is a rare kind and is aggressive. Any help would be appreciated.

 
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Old 12-13-2009, 07:25 AM   #2
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Re: NH Follicular Lymphoma 3b grade

Quote:
Originally Posted by hopeandbelief View Post
Does anyone have Follicular Lymphoma Grade 3b? Looking for information about it such as treatment and prognosis. My husband was just diagnosed with it and I can't find much on the web. He will be a stage 3 or 4. Still waiting on Bone Marrow Biopsy. Almost everything on the web is all about Grades 1 and 2 Indolent. Grade 3b is a rare kind and is aggressive. Any help would be appreciated.
I do not have follicular lymphoma myself, but have read about it. I think there may be a little bit of confusion here over the term 3b. Follicular lymphoma is an indolent form of lymphoma, which means it progresses slowly. The staging is not a measure of how aggressive the lymphoma is, but how widespread. Grade 3 means that there are enlarged lymph nodes both above and below the diaphragm. Stage 4 means that it is no longer contained within the lymph nodes, and other organs are involved. The a or b designation refers to whether there are systemic symptoms present, e.g. weight loss, night sweats, itching.

There are a significant number of new treatments for lymphoma, and there is a lot of excitement about the role of rituximab in the treatment of follicular lymphoma, which has produced much longer periods of remission than chemotherapy alone. I think it is probably too early to say whether some of the patients treated will remain permanently in remission, but clearly that is what is hoped for.

Hope that is helpful in some way.

 
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Old 12-13-2009, 05:34 PM   #3
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Re: NH Follicular Lymphoma 3b grade

Hi,

That is the exact diagnosis I had in the spring of 08. My doctor told me I am cured. I finished treatments in August of 08 and went through 6 rounds of chemo. I know am on a mainanance for two years and am given Rutuxin every 6 months for two years. I have had two of those treatments and have two left. I feel great and pretty much back to my old self. If you have any questions, I would be happy to answer any questions I can for you.

Good luck with your process. He will get through it with a lot of help from you, I am sure!!!!! : )

Last edited by moderator2; 12-13-2009 at 07:09 PM. Reason: posted contact info - please read the posting rules

 
Old 01-02-2010, 12:36 AM   #4
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Re: NH Follicular Lymphoma 3b grade

Dear Cross,

I have stage 4 follicular and my grade is a 3b, but I was told no follicular can be cured. Can you please send me an email. I'd like to hear yout story. thanks

 
Old 01-03-2010, 05:22 PM   #5
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Re: NH Follicular Lymphoma 3b grade

Would love to hear your story as well. How long have you had it? Are you in treatment now?

Last edited by moderator2; 01-03-2010 at 08:10 PM. Reason: posted contact info - please read the posting rules

 
Old 01-28-2010, 08:14 PM   #6
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Re: NH Follicular Lymphoma 3b grade

I was diagnosed with FL3b Jan 09 at Johns Hopkins and was treated with R-CHOP (have been in remission 9 months now). 3b is aggressive (my oncologist says it responds to treatment used to treat LBC)...they think it happens b/c of genetic mutation (18th and 14th chromosones reverse somehow in our DNA...b/c we contract viruses or through exposure to pesticides/herbicides, etc) that alters how we make some of our blood cells...based on how many messed up blood cells we have in our blood sample, one gets the 1,2,3a, 3b designation...these unhealthy cells don't do their job and prevent what healthy ones we do have from properly doing their work of fighting infection...that's what causes the symptoms like tumors, weight loss, sweats...

My oncologist says he treats with a curative intent, but that 3b almost always comes back...(b/c of the genetic damage I wonder?) My hope is to stay healthy and happy for as long as possible, so that when it does come back, there might be new treatments out there (like Rituxan was) to treat it next time. R-CHOP is the gold standard of treatment but b/c of toxic side effects (to heart function mostly), it is usually only given once to a patient. Please keep posting updates so we can help one another. Hang in there.

 
Old 01-28-2010, 08:42 PM   #7
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Re: NH Follicular Lymphoma 3b grade

I've had it for 15 months & not in treatment now. < edited >
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Follicular Non Hodgkins (fNHL)
Stage 4 (transformation occured)
Age 36

Last edited by hb-mod; 01-29-2010 at 01:06 AM. Reason: Please do not post personal information, such as name, telephone or email address. Thanks!

 
Old 01-29-2010, 07:25 AM   #8
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Re: NH Follicular Lymphoma 3b grade

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Originally Posted by BchGrl View Post
I've had it for 15 months & not in treatment now. < edited >
Hi,

I joined this message board for comfort but I have to say, I do not feel comforted by it at all. The more I read people's messages, the more I see people making their own diagosis and even telling me my Oncologist is wrong...

I am going to print out these messages and show them to him and get his reaction.....I will let you all know his response.

 
Old 01-30-2010, 10:07 AM   #9
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Re: NH Follicular Lymphoma 3b grade

I'm very sorry we have not comforted you. I do think it's important you are aware of the facts though. You probably misunderstood your oncologist. He may have told you that you have Diffuse Large b cell & that you MIGHT be cured. I think the cure rate is about 50% for the agressive type. He most likely said that you are in "complete remission".
If you do have Follicular Stage 3,there is not a real oncologist out there that will tell anyone they are cured. I know you like him & trust him, but if that's what he's telling you, you should RUN to another Dr. You may be just fine for a number of years though.
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Old 01-30-2010, 12:13 PM   #10
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Smile Re: NH Follicular Lymphoma 3b grade

Quote:
Originally Posted by BchGrl View Post
I'm very sorry we have not comforted you. I do think it's important you are aware of the facts though. You probably misunderstood your oncologist. He may have told you that you have Diffuse Large b cell & that you MIGHT be cured. I think the cure rate is about 50% for the agressive type. He most likely said that you are in "complete remission".
If you do have Follicular Stage 3,there is not a real oncologist out there that will tell anyone they are cured. I know you like him & trust him, but if that's what he's telling you, you should RUN to another Dr. You may be just fine for a number of years though.
Well, when you get your medical degree, I would be happy to hear your prognosis but until then I feel extremely comfortable and confident with my Oncologist and to be quite honest, I think people like you are doing a disservice to people like me who come on here to be supportive and positive and my personal advice to you is to stop spending so much time diagnosing people on here and live your life!

 
Old 01-30-2010, 01:23 PM   #11
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Re: NH Follicular Lymphoma 3b grade

I was trying to be helpful but have it your way. I totally disagree with you that I'm doing a disservice. There are so many things I've learned about my disease & treatments that I found out too late! Example, the closer you get R-CHOP treatments together, the better your chance of longer term survival. But because my blood counts were low, we waited 24 days when even 14 days proved to be better than the standard 21 days. I'm so mad that I wasn't told that by my Dr.

Unfotunately when I was diagnosed, I was so far gone that the lymphoma got into my bones on top of in my marrow & treatment had to be started immediately. I wish I had time to come to boards like this to get other people's knowledge & advice. Ii am THANKFUL for all of the information I get from other knowledable patients who have been through this.
And by the way, I do have a medical degree. Not in oncology though. I won't try to help you anymore, but you will find out that what I told you is exaclty right. You should apologize for your horrible rudeness! That was a ridiculous reply. What is wrong with you?
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Follicular Non Hodgkins (fNHL)
Stage 4 (transformation occured)
Age 36

 
Old 01-30-2010, 01:48 PM   #12
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Re: NH Follicular Lymphoma 3b grade

Hi PA mom,
(I know someone on here will badmouth me for giving my input but I will do it anyway because if it were me, I would, and do, want to know everything). I think the more knowledge we are armed with, the better decisions we can make & the more empowered we'll feel). But I wanted to tell you about a fairly new clinical trial that was reported on. It shows that Treanda & CHOP shows an average of 54 months remission compared to the average 34 months with Rituxan & CHOP. (that was for 1st line tx). Less toxic & side effects too. (boy I wish I would have known about that trial but, I'm hoping that means that upon relapse, we can use that. A hematooncologist at Memorial Sloan Kettering told me that you can have R-CHOP more than once. I've always read that it's a one time tx, but 2 onc at the top cancer centers have told me that. They also told me that you can do bmt's more than once.
Treanda is actually an old drug before the Rituxan days so I'm not sure why this was not known all ready. An almost 2 year difference in remission time is Huge! My next apt. I'm going to pick my Dr. brain about it & how that will affect our next tx choice.
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Follicular Non Hodgkins (fNHL)
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Last edited by BchGrl; 01-30-2010 at 01:49 PM.

 
Old 01-30-2010, 03:37 PM   #13
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Re: NH Follicular Lymphoma 3b grade

Oncologists are not fortune tellers...they don't know the future...and each patient is different - their bodies and their histories...Really all doctors are making educated guesses about outcomes and careful well thought out choices about treatment and care (doctors promise first and foremost 'to do no harm')

I beat two cancers last year with the help of a breast oncologist and a heme oncologist...and it was their careful diagnosing, their slow unraveling of exactly what was wrong with me that saved my life - b/c I received the correct chemos in the right order along with surgery to eliminate the tumors from my body. I had seen another oncologist who had misdiagnosed me, and the second opinion in this case made all the difference.

My heme oncologist says "What is a cure? It is a remission that never ends..." And while many of his colleagues say follicular lymphoma is uncurable, he believes in the possibility of those incredibly long remissions...

I am sorry you find little comfort...it IS hard to carry the burden of a lymphoma diagnosis...I have sad times, too...But I decided last year while undergoing chemo that I would not let a cancer diagnosis own me...I am so much more than my cancers. And while I knew that my breast cancer could be eradicated forever with a 95% certainty, I also came to accept that the best way for me to relate to my lymphoma was to think of it as a blood disorder chemically rendered dormant and to do everything I could to keep it dormant along with my physicians. I try to stay as healthy in general as I can...to have the resources in my body to be able to deal with whatever. I read a lot of different posts on this site, and I am grateful for the sharing, for people making themselves vulnerable in their messages. None of us asked to have lymphoma...a site like this lets us be less isolated in our diagnosis...we're not alone.

 
Old 01-30-2010, 03:59 PM   #14
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Re: NH Follicular Lymphoma 3b grade

Well the comfort I have is in the knowledge I gain. I'm heavily involved in support groups throughout the country that deal with NHL & fNHL. I'm also involved in research foundations so that I can keep on top of new treatments that may one day have a possiblity of a cure.
There are many cases where fNHL can have decades of remission. In my case though, I am younger & am a stage 43b. I've been told by the best oncolofists, pathologists & researchers that unfortunately, it will come back& there is no chance that it won't. I appreciate honesty, I can handle it. If they tried to give me some false hope, I would feel cheated because I would not be trying as hard to keep on top of the information and ASH convention topics etc.

I have people high up in the medical field in other countries even keeping their eyes & ears open for treatments that the FDA may not allow us to know about yet. I'm a fighter & and adnovate for patients right to know.

I get 4th & 5th opinions if my answers are "iffy" & each time I get iffy answers, I go to a better facility (at least as far as we hear about in the cancer world) M.D. Anderson etc. here in the U.S.

It's not right for everyone but I feel we only have one shot & if things aren't done correctly, I'll have regrets that I wasn't my own advocate to find out more knowledge than just what one Dr. told me.

For me, it seems doctors only talk to me with Q & A for about 20 min per apt. You can't possible have enough info about a terminal disease in 20 min. It's up to the patient to find out more in other ways because most doctors don't have that much time to talk ( or don't want to) Alot of older patients don't adk or care to know & that's ok for them.
For me, I seek out the newer, quicker, less radiation producing, better imaging cat scan machines. No Dr. ever told me I had a choice or that there even were those new less harmful machines. But when I ask, they agree with me & send me to the place I request. (some things drs just don't think about probably). Those little things add up to make a big difference for me.

If someone is not wanting to hear any of what I've learnec, please dont hesitate to tell me. I'm very honest & when it comes to being sick, some people prefer not to have so much honesty. I can see if there is a way to block someone from my posts or maybe it has to be the other way around. I'm not here to scare anyonee, just the opposite.
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Follicular Non Hodgkins (fNHL)
Stage 4 (transformation occured)
Age 36

 
Old 01-30-2010, 04:17 PM   #15
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Re: NH Follicular Lymphoma 3b grade

BchGirl, thanks for the Treanda thought...always considering my options as I navigate my health. My oncologist says there are many chemo combos to try if we need to again and that I should not worry. So I try not to! Keep posting.

 
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