CSN Login
Members Online: 14

Recurrance of NHL

myron
Posts: 8
Joined: Apr 2002

Has anyone out there had more than two reappearances of NHL and is there anyone in there late sixtys, early seventies who has survived this and can tell me about your treatment etc.

Myron

hollynn
Posts: 6
Joined: Apr 2002

Myron,
I recently read an article by a Dr. Wendy Harpham, that was about Cancer-related Fatigue. It was in CURE (cancer updates, research & education) magazine, Vol. 1, No. 1 Spring 2002.
In it, she state that she was diagnosed in 1990, and than had it reapepear 6 times. However, she now has been in remission for almost four years! So, don't despair, i guesss. As far as the latter part of your message, sorry. (I'm 19) :D

coondog
Posts: 9
Joined: Jun 2002

Myron, don't know if this will help but there is a guy at work who gets a recurrence evry 6 years. Seems strange. But he gets chemo only, it disappears then 6 years later returns. He has had it 4 times now.

wallpa's picture
wallpa
Posts: 24
Joined: Apr 2002

Hi Myron

I'm a member of the Yahoo Non-Hodgkin's lymphoma mail group and they have a huge amount of information available. (There are over 600 members--all with NHL.)

A lot of people think there are two kinds of lymphoma, Hodgkin's and non-Hodgkin's whereas non-Hodgkin's actually encompasses about 40 different kinds of lymphoma. The aggressive kinds are more dangerous at first (some can kill in a matter of months) but when aggressive kinds are successfully treated with chemotherapy, they are much less likely to come back than the indolent varieties.

From what I've learned, indolent non-Hodgkin's lymphoma almost ALWAYS reoccurs and there are a number of people on that list who have had many more than two reappearances of NHL.

It has been very educational for me to be on that list. If anyone wants to join but can't figure out how to get to it on Yahoo!, let me know and I will look up the address for you.

patty

myron
Posts: 8
Joined: Apr 2002

Patty,

I'm sorry that I'm just getting around to this but I have had a rather full plate lately. I would most cartainly be interested in knowing the address of the Yahoo, Non-Hodgkins mail group. If you wouldn't mind, please send it to megregg@msn.com. I will be in your debt.

Myron

dvlasek
Posts: 2
Joined: Aug 2002

Patty,
I am new to the group and just read your e-mail. I worry a lot about the lymphoma recurring even though I had rituxin and my doctor says I have a 70 percent chance of being cured. Could you send me the address of the Yahoo group. Thanks.
Don

dvlasek
Posts: 2
Joined: Aug 2002

Patty,
I am new to the group and just read your e-mail. I worry a lot about the lymphoma recurring even though I had rituxin and my doctor says I have a 70 percent chance of being cured. Could you send me the address of the Yahoo group. Thanks.
Don

sla
Posts: 3
Joined: Mar 2003

I would love to join the yahoo group. How do I. sla

daftmf
Posts: 4
Joined: Mar 2004

Patty, I just joined this group but would love to have the address for the Yahoo one as well.

sweetda
Posts: 6
Joined: Mar 2005

Hi Patty
I would love to know how to get onto the yahoo NHL. I am currently taking the Rituxan. I was diagnosed with Indolent NHL. Bone Marrow and spleen. Thank you so much

nts
Posts: 1
Joined: Oct 2004

Please send me the address for the yahoo non hodgkins group as I have been searching for this kind of help for about 2 years. I am in my 2nd year of remission for indolent lymphoma. NStephe194@aol.com Bless you, Nancy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

Patty,

I don't know of anyone here who thinks there are "two strains of lymphoma."  Most people I read here appear quite well-informed, and ask questions about their particular sub-variant.

Also, if you would, submit any scientific data you have to support the understanding that "indolent NHL almost always reoccurs." 

The assertion is light-years from my understanding.

Thanks,

max

LaurieKW
Posts: 14
Joined: Sep 2013

Hi Patty

 

i am also new to the group - i am recently in remission from  DLBCL and went through 6 cycles of rEPOCH (5 days continuous). Had a set back with the finding of GCT on ovary which was surgically removed and I am quite concerned about recurrence.   I pray a lot - would love the link to the yahoo group to find out how other deal with this.  

want2live
Posts: 1
Joined: Aug 2002

Help!! I'm scared. My remission period lasted only 3months. Has anyone else had a recurrance so soon after completing chemo. I received Rituxan, Fludara, and Cytoxan for 4and half months, all of my tumors shrank immediately. I have begun another round of Rituxan, but I've noticed that my tumors are not shrinking as quickly this time. Is it possible to grow immune to Rituxan? Anyone who has undergone a similar situation, or just knows more about recurrances and the effects of Rituxan, please let me know thanks. Want2live

mariaru
Posts: 6
Joined: Oct 2001

Dear friend, although my personal experience isn't helpful in replying to your question (my treatment for NHL was very different than yours) I would take encouragement from the things you can read in the preceding responses to Myron's original message, above. You are not alone! Multiple recurrances are not uncommon with some types of NHL and you shouldn't let it get you down! I love your screen name... want2live. This means a lot. Your spirit is strong, and your spirit can support your body's fight. You can do it! I'm a 16 yr. survivor! God bless you with peace and strength!

halfcast
Posts: 12
Joined: Mar 2003

Hi, my name is Jim Atkins, i was diognosed with stage 4 aggressive NHL,when i was 17, i am 43 now and am going through my 6th recurrance.
I was told that as i get older the cancer will turn up in harder to treat places, this time its in my left leg and im trying desperatly to keep them from amputating as the blood supply is getting cut off.I did have 10 yrs of remission and i was told that the chances of a recurrance after that long were remote, just goes to show how much they DONT know.I know one thing for certain though, this thing will not kill me untill i am ready to go. Keep the faith, Jim.

vylets
Posts: 3
Joined: Aug 2013

My husband is going through his third bout with NHL( he is almost 66 ).  Reading through these comments is very reassuring.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

When was he first diagnosed and what was his diagnoses. Grade, Type ?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

Myron,

Senator Arlen Spector went three rouunds with (HL)  lymphoma, and died relatively old, at 82. 

Most of his remission time was quality time, in good health, with vigor.  His remissions average 6 years each.  This, despite the fact that his first disease was discovered as very late stage 4. He beat it for 12 years, despite beginning the fight at the age of 70.

I followed him because he initially had the same indolent HL I had.  It came back 5 yeras later as the same indolent HL, and then came back as an aggressive NHL .

If diagnosed earlier in his first disease, his statistics would have been even higher, despite his age.

Despite his relapses, over 70% of all people with my strain NEVER relapse. Even in relapse-prone variants, most never do.

max

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Hello Myron,

My journey with NHL started in 04, at which time I had surgery on my neck and cheek, and 22 radiation treatments. Then I went 4.5 years. I was already celebrating. But shortlived in March of 09 it came back as Follicular NHL stage 4 with bone marrow involvement and other places. I was 59 when I started and am now 68 years young. I had more surgery in 09 and 8 rounds of chemo. Then my Oncologist did Zevalin a radioimmuntheray in December of 09 , and have been in remission since. So far I have lived through it. I have also other health problems. So I take one day at a time and thank the Lord that he allowes me to wake up every morning. So hope this helps you. Good luck, Hilde

GKH
Posts: 299
Joined: Jul 2012

FNHL is certainly a disease prone to relapse. Fortunately it is also very treatable. There are so many different therapies that they can try a new one with each recurrence. I have been told that with indolent FNHL there is no such thing as remission in the classic sense. Its always going to be there and could always relapse, though many people go for literally decades and fall prey to traffic accidents, falls, heart problems etc. long before FNHL is serious enough to cause death. One of my Oncologists told me his first patient had FNHL. That was 26 years ago and he still treats that man. Just hang in there and ask questions and don't hesitate to get second or even third opinions. FNHL appears to be a disease on the brink of a cure. Fantastic strides are being made and many in the medical field agree a cure is likely in the near future.

Someone asked if you can develop immunity to Rituxan. I asked that question at MD Anderson. Answer is yes but its not very likely. However the fact is no one knows for sure how likely it is. The scenario would be that the patient would devlop a strain of b-cell clones clones without the C20 marker. Rituxan would not affect these clones and they could conceivably run amok. It would be a very rare ocurrence. Even if it happened, standard chemo regimens would knock them out. I don't worry about meteor strikes and I put this scenario for Rituxan resistance in the same category.

yesyes2
Posts: 461
Joined: Jul 2009

Hi everyone,

 

I haven't been on the board in a long time but wanted to respond to you, GKH.  In January 2008 I was diagnosed with a very rare type of B cell NHL.  It is the same type disease people with solid organ transplants can get.  And it is an aggressive disease.  I was taken off my immune suppression drugs and given Rituxan, 4 weeks and than every 8 wks.  In June 2009 I relapsed, same disease but now CD20 Neg.  I relapsed while on Rituxan maint.  Treated with 6 rounds of RCHOP, remission after second round.  Todate I am still in remission.  Guess I was one of those rare individuals who reached a Rituxan immunity.  However I still receive this drug 4 times a year for my RA.

I hope all my old time peeps are hanging in there and doing good.

Best to you all,

Leslie

yesyes2
Posts: 461
Joined: Jul 2009

Hi everyone,

 

I haven't been on the board in a long time but wanted to respond to you, GKH.  In January 2008 I was diagnosed with a very rare type of B cell NHL.  It is the same type disease people with solid organ transplants can get.  And it is an aggressive disease.  I was taken off my immune suppression drugs and given Rituxan, 4 weeks and than every 8 wks.  In June 2009 I relapsed, same disease but now CD20 Neg.  I relapsed while on Rituxan maint.  Treated with 6 rounds of RCHOP, remission after second round.  Todate I am still in remission.  Guess I was one of those rare individuals who reached a Rituxan immunity.  However I still receive this drug 4 times a year for my RA.

I hope all my old time peeps are hanging in there and doing good.

Best to you all,

Leslie

GKH
Posts: 299
Joined: Jul 2012

My only experience is with FNHL. 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network