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Greg:
Is it true that if you do not have a relapse of DLBCL within 2 years of NED that the risk of it coming back decreases significantly?
Also after 5 years considered "cured"?
Hi Jordy,
That is absolutely correct. If DLBC is going to relapse then it is nearly always in the first two years. After that the risk of relapse drops dramatically. I think most people let out quite a big sigh of relief at that two year point. While relapses after 2 years are uncommon they do still occur in a small number of patients.
Once you hit the five year mark you are considered cured. At least by the medical community you cured. Getting something like life insurance may be a different mattter entirely. I have no idea if they use a different criteria.
Greg Dafoe
Webmaster: http://www.nhlcyberfamily.org
I agree with everyting you have said. I just want to make it past the 6 month mark. Twice now that is the point at which I have relapsed, and because of the relapses my chance of a cure goes way down. My hope is that we can keep it in remissions as long as possible, and may be even longer than 6 months. I have really been struggling of late having to face the fact that this is now my new life. At first diagnosis I though OK we'll fight this, get rid of it, and life will go back to normal. What ever normal is. Now I realize that this is my new normal. It will be with me the rest of my life. I feel as if I am sitting around wasting time, and yet know I have to go through the treatment, but when your life span gets cut so drastically you don't want to waste one second of it. At the same time I know how blessed, and lucky I am compared to so many others. I have tolerated my treatments well all things considered, and my hair has come back strong twice now. I have had a wonderful life, have three awesome grown sons, and two beautiful granddaughters. Who could ask for more. I finish my radiation in a couple of weeks, and then we wait a couple of weeks before they can do a CT scan to re-stage the cancer. Based on those results they will then set the new game plan. My hope for all of us is that we can have more good days, than bad, time with our friends and loved ones, and the support of each other here on this site.
Marge
Sure looks like you have been through the wringer marge. I hope the radiation gives you the remission you deserve. Perhaps you should ask your haematologist/oncologist about the Enzastaurin trial. It is being used to help prolong remissions for people with DLBC (and Mantle Cell Lymphoma) that is relapsed and/or refractory to treatment. You will find information on that trial on the relapsed DLBC page I posted above. Best wishes!
Greg Dafoe
Webmaster: http://www.nhlcyberfamily.org
Guess I fall into that "uncommon" group who relapsed 2+ years after NED. My first relapse with DLBC was right at 3 years, the next was within a few months after completing chemo for that. But mine has never been classified as agressive truly aggressive. Now 3 times with fNHL, I totally understand Marge what you're saying - this seems to be my 'new normal' as well. But all we can do is keep plugging along and knowing while this disease may be tha cause of our demise one day, it's just not going to be today.
Greg, I seem to have 3 nodes in my right cheek that just don't want to give up the ghost even after (the clinical trial of) ESHAP+Zevalin. I'm about 7 weeks out from receiving the Zevalin and the little beggars are still hanging around and seem like they are growing - slowly. I believe it's possible to have Zevalin treatment more than once but do you know of any studies where if a person is refractory the first time around that having it again will produce any better results?
Haven't scheduled an appointment with either oncologist yet. I'm watching the enlaged nodes and waiting for the end of my run of labs (in August) and my local onc to return from his summer vacation. I'm asymptomatic otherwise (always have been) and basically feeling fine. It's getting frustrating though.
As I've said before a SCT scares the beejeezus out of me but may be my only real hope for long term positive response. But - if I can't get into a maintained remission, could I even be considered for SCT? Figure it would have to be an allo because with the way this keeps flaring up, I'd probably just be replacing bad with more bad if I had an auto. Does that make sense?
Thanks for listening to me whine...... anyone have some cheese to go with it? 
Sharon
Sharon,
Your reluctance to have an SCT is understandable. It is not exactly a picnic. But you would also be surprised at just how much you, and other people can endure when faced with life and death decisions.
I am adding another article to the follicular cure post. Have a look at it. It addresses reduced intensity allogeneic transplants, and has some impressive results.
Greg Dafoe
Webmaster: http://www.nhlcyberfamily.org
Thanks for the info, Greg. The RIC does give me some measure of relief when thinking about the SCT possibility. Once again - treatment is as much of an art as it is a science, isn't it?
-Sharon
Sharon
It's been a few days since I last checked out the LLS boards. I'm sorry to read your pesky nodes are still there. The thought just struck me we both should form a club, as my mump is still there as well. Even after RCVP it never quite went away. How about "The Lobsided Chipmonk Chapter. LLS".........Tony
LOL Tony! I like that....although it would be yet another club I'm a reluctant member of. It will be a glorious day when the right therapy "cocktail" can be found to put us ALL into remission!
How are you doing these days? Staying off rooftops? Hope you're feeling Ok even with your mump.
Kind thoughts and good wishes from the hot and humid desert.
Sharon
Hi Sharon
I'm a happy little soul since I went back on the anti-depressants. Not that I thought I needed them especially as my sleep patterns are still as crappy as always. My Onc seems to think this may help me get into some sort of routine sleepwise. Instead of one of waking then crashing and waking again. Well I may as well give it a go lol. At the moment I'm having major probs with my teeth. I wonder if the Onc can explain this away so easily? Or anyone can. Darn dentist won't do anything because of my recent chemo other than refer me to the hospital for treatment. Risk of infections etc. BS I think but hey what do I know about anything. LOL...................Tony
The following discussion paper looks at the dramatic improvement in survival for elderly patients treated with R-CHOP as opposed to CHOP alone.
http://bloodjournal.hematologylibrary.org/cgi/content/full/116/12/2000
One small quote:
With R-CHOP (rituximab cyclophosphamide, doxorubicin, vincristine, and prednisone), the 10-year progression-free and overall survival rates for elderly patients with advanced-stage diffuse large B-cell lymphoma (DLBCL) are 36.5% and 43.5%, respectively, an absolute improvement of approximately 16% over CHOP alone. Only 39.5% of patients developed disease progression and the majority of patients remain alive and well or have died from unrelated causes.
Imagine that, a 16% absolute improvement, and only 39.5% of elderly advanced-stage patients had any disease progression after 10 years. What an improvement that is! When I was first diagnosed with fNHL most studies were saying that DLBC patients only had a 30-60% chance of progression free survival after 5 years.
Here is the link to the COMPLETE study, including graphs, data etc.
http://bloodjournal.hematologylibrary.org/cgi/content/full/116/12/2040
Greg Dafoe
Webmaster: http://www.nhlcyberfamily.org
Hi am new here and just looking for information.
I was diagnosed with Non-Hog B-cell stage IVB follicular lymphoma, grade 2 (mind you at this stage the only symptoms I had was slight tiredness and night sweats and still riding bycicles up to 20 miles a week before treatment stated). I was on wait and watch for two months before the lymph glands started to grow rapidly and my physician decided to start R-CHOP therapy probably thinking that it had become aggresive.
Well first treatment was done with just a slight reaction to Ritoxan, the rest of the chemotherapy went well. What I noticed within hours was a radical reduction in the size of lymph glands to the extend that I have actually lost about 10 Lbs in tumor weight alone and feel better than I have in years. My next treatment is scheduled for Oct 20th and the question is, what can I expect? Is this rapid tumor/lymph reduction common? If so what will I see in the oncoming treatments?
I prefer to have a good understanding of what to expect and then plan fo the best.
At this point in time, while yes I was taken back by the original diagnosis, I also quickly understood and came to terms that I was given a new lease on life and have to take advantage of it and to its fullest. Every day is new to me and I have to much to do and enjoy.
Sorry for my rants but sometimes we need encouragment, specially when some fog enters our life.
Life is how you deal with adversities, and I absolutely refuse to let a bump in the road of life let me down.
Cancer might take my life, but it cannot take the life-out-of me
Glad to be here and in good company.
Jim MD
you have an amazing attitude. you have helped me see things differently today. thank you.
Honestly, I just want to bring a little humor into life.
BTW I am contemplating and looking at my hair as it falls out/off....... saying good byes to such long and endearing friends..... but I am also looking forward to the Yul Brainer look.... time to see how it feels to be hairless without a need to shave.
Wife has also threatened me to take me out to the yard and scrub my body with a loofah sponge to remove all the hair and provide it to the birds for nest building. She also said I might just like to make the hairless head a permanent thing. But at this point the only thing I will miss is my mustache, but only time will tell, in the mean time I will search for the worse looking rug I can find and have a field day with it... wonder how many shocked people I will see.
Now if you see me at an event and I have a mask on, please do not approach me and ask what I have. I might just remove the mask for a few seconds, cough, and tell you that I am infectious, he he. Once your face changes to a worried look I will tell you that I am under chemo and have to take certain precautions to prevent myself from getting sick, while this will bring a chuckle to me and I risk being thrown out of the event, it will also alleviate your anxiety.
Kindness and Regards
Jim
Here is another study to give more hope, especially for those who have relapsed DLBC. Although a stem cell transplant is the option of choice for relapse, not everyone is able to have one. Lenalidomide is showing very encouraging results for this population. What is most remarkable is that those who have the non-germinal cell type of DLBC had far higher response rates even though this type has historically had a much worse prognosis. The two types of DLBC are often known as ABC (Activated B Cell) which is the non-germinal cell type and has a worse prognosis, and GBC (Germinal B Cell) with the better prognosis. This study shows the ABC type has a great response to Lenalidomide.
Hope abounds.
Greg Dafoe
Webmaster: http://www.nhlcyberfamily.org
(Other options for relapsed DLBC are on my website: http://www.nhlcyberfamily.org/types/dlbcrelapse.htm )
Hi Greg,
Thank you for this link. I am a new member. My twin sister has Stage IV DLBC primary breast lymphoma. After 2 cycles of R-CHOP, she reached complete remission. She has 1 more cycle (her 6th) remaining. Before we knew about the remission, we went to UCLA to get a second opinion, and they diagnosed her as activated b-cell sub-type, and recommended DA-R-EPOCH. The next day, we found out about the CR, and my sister's doctors decided to stick the with R-CHOP, since it was working so well.
I'm curious, if you know anything about how ABC or non-germinal center lymphomas are being treated. We were told there is no evidence-based treatment for these subtypes yet, and UCLA said their policy is an aggressive, experimental protocol. It's difficult finding comprehensible information about these molecular subtypes - how they are classified, how they impact prognosis, and how they are treated. I just wonder how important molecular sub-typing is in terms of treatment.
Thank you
Karin
Hi Karin,
What you were told pretty much agrees with everything I have read. Even more important is that they are finding other genetic features all the time, some of which appear to play a more important role in the prognosis than just the ABC or GBC subtype. Most studies seem to focus on using more aggressive treatment approaches (such as DA R-EPOCH). These studies seem to show good results, but I can't recall any where they did a head to head comparison with just R-CHOP. So it is impossible to know if more aggressive approaches are "better". You need that head to head comparison.
I don't know if you have looked yet, but at the bottom of my page about DLBC in the "Other information" section are a number of article that discuss what they know about these subtypes and how they affect the prognosis.
http://www.nhlcyberfamily.org/types/diffuse.htm
It is good that your sister achieved a CR after just 2 cycles. That alone is an excellent prognostic factor. Best wishes to her for continued remission.
Greg Dafoe
Webmaster http://www.nhlcyberfamily.org
Hi Greg,
Thank you for this response. It's both reassuring and enlightening! It's amazing how hard it is to get clear communication from the medical establishment sometimes. When I asked the UCLA doc what the difference was between R-EPOCH and R-CHOP, all she said was, "It's a style difference."
Thanks again,
Karin
Karin,
There is a little more difference than style. DA R-EPOCH has Etoposide (aka VP-16) in it, which R-CHOP does not. The DA stands for dose adjusted, which means they adjust the doses as needed to achieve the best effect. It is more aggressive than R-CHOP and as such would also come with more side effects.
Greg Dafoe
Webmaster: http://www.nhlcyberfamily.org
Aloha Greg and mahalo for all the information here.
After just shy of 5 years, my primary testicular DLBC relapsed, presenting itself with a large tumor in my brain. (The details are at ) Apparently secondary CNS relapses of DLBC are quite rare, so there doesn't seem to be a lot of info I can find. The blood-brain barrier is an issue for many types of chemo which seems to drastically limit options. I did find a recent retrospective analysis of this which may be of interest to others here, at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3118693/?tool=pubmed. If you have any insights to share about this sort of relapse, perhaps you could share it here. Thanks from the Big Island! 
Hi Big Island. What does CNS stand for? I'm sorry you are in the weeds again with this darn mess. Hope all goes well with whatever the decision is for treatment and I keep you in my prayers.
Fran
Aloha Fran and sorry for not including what that stands for, which is Central Nervous System. With the alphabet soup of acronyms in this business, one should always be careful to include that! 
When you see 'SCNS', that stands for Secondary CNS, which is the term used fora cancer that started somewhere else.
I actually am in treatment now, with eight cycles of the ultra high dose methotrexate done and four more to go. I'll probably be checking into the clink week-after-next for another week of fun. It's such a rare type of DLBC relapse though, that I was curious if Greg had any additional insights into this particular situation.
Yeah, it was sort of a tease to be so close to that 5 year mark and then fall back, but sometimes the dice just don't fall your way. I'm just thankful the the relapse, so far, has responded so well. They just ran another MRI this last Tuesday and this coming Tuesday I'll hear the results from the oncologist, so I'm a little nervous. I'm sure you know what that's like.
Thanks for your thoughts and prayers,
Al
Thanks for clearing that up for me Al. I know I heard it mentioned before but never got around to asking anyone.
I do know what waiting for those tests is like, YIKES.
Hope all continues to go well for you.
xo Fran
