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Diffused Large B-cell Lymphoma Returning?

Lym999
Posts: 34
Joined: Feb 2020

Has anyone who had Diffused Large B-cell (non-germinal) Lymphoma had it return? I had just finished up 2 R-chop treatments in March and currently in remission. I have another CT Scan scheduled for late August. I had Lymphoma of the right lung and it spread over to my Spleen. At first, I had been diagnosed as having Lung Cancer (never smoked) by two different doctors. If it wasn't for my wife of thirty years and her insistence on doing the biopsy, that saved my life. I had all but given up on my situation and wasn't going to do anything else until she yelled at me on the way home from the doctor's office, "I don't want to be a widow!"

That really hit home for me and after seeing my kid's reaction I decided to schedule the biopsy the next day. I then was told a few days later that it wasn't Lung Cancer, but Lymphoma. I am told if it doesn't come back in the first two years that the chances of it returning are slim. I was wondering if anyone had it return. I am currently a 60-year-old male. Thanks!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Sorry no one with your particular strain has yet responded Lym.  Diffuse Large-B is the most common of aggressive NHLs, and so of course lots of people have experienced relapse.  There used to be a common blurb , mostly regarding organ cancers, that any cancer in remission for five years or more was "cured," but that never involved a guarantee, and there were exceptions all the time.

While no cancer is ever 'lucky,' the survivability of relapsed lymphoma is massively better than lung cancer.  Most people achieve full remission following salvage therapy.

max

DJS628
Posts: 64
Joined: Mar 2018

Hi Lim,

Sorry you had to join us on here, but very happy to hear your treatment worked and you are in remission.  I hope and will pray your tests in August tell you you are still in remission.

2/3 of us with DLBCL are cured by "conventional treatment," meaning R-Chop.  You said you had two treatments? I had 3 treatments. I've also heard the "still in remission at 5 years? You're cured!" But that may not be necesarily true in some cases.

DLBCL is "easily treated," and I was told if I were able to choose a cancer, this would be the one to choose! Yeah, like we're going to choose a cancer, right? Oh, my!  I attend a cancer support group and several of the members were told they got the "good" cancer, too. 

I'm glad your wife insisted you have that biopsy. I'm surprised you had it done so quickly. That was a good thing, as with cancer, you don't want to wait too long to take action.

How did you do with the chemo & have you regained all your strength and feel back to "normal" now? 

Most DLBCL's are cured, but like I said, if you're in the 1/3 that aren't, it recurs.  I was also told if it was to come back it would more than likely come back within the first 2 years.

I don't want to scare you, but you asked and I will be honest about my situation.

I am a 61 year old female (as of June 28th), so just a year older than you!

In Sept. 2015, I found a lump in my groin and found out it was DLBCL, stage 1.  I had 3 R-Chop treatments, followed by 15 rounds of radiation.

I was in remission until July 2017 (2 months shy of the 2 year mark) when it came back on the oppocite side.  This time I had the 3 R-Chop treatments, then I was in remission and had an autologous stem cell transplant (auto=your own blood; allo= a donor's blood). I was in the hospital for 24 days.  It was an intense treatment.  The actual transplant happened on Jan. 3rd, 2018.  

I was there for 3 months. They admitted me in the hospital two days after Christmas and I came back home on Feb. 2nd.  I slowly re-gained my strength and etc. and was doing fine.

But in Sept. 2018, 8 months later, it came back again, almost in the same spot as the last recurrence. This time, I got 30 radiation treatments and we were thinking of having me do the CAR T-Cell Immunotherapy. But my insurance denied it. I didn't have active disease since the radiation took care of the cancer.  So I was relieved I didn't go through with it. But.....I may have to if it does come back again.

I'm doing great! This coming Sept will be 2 years since my last recurrence.  By the way, Sept. is ironically Lymphoma Awareness Month.  Hmmm? 

Welcome to our club no one really wants to join, but I'm glad you did.  We're here to support each other. I hope the old members find us (they changed the site and things are quite different than before).

Take each day as it comes, try to be positive & enjoy life! If you live in fear, you're really not living. I have my moments of wondering if it'll be back again (esp. before follow-up appointments), but I try to be positive.  You will have people who may say "you're in remission, you don't have cancer any more, so forget about it and get on with your life!" Well, until they have experienced such a diagnosis, they really don't understand what we go through.

Take Care and I wish you well.

Sincerely,

Debbie

P.S.

Please remember that not all cancer patients are alike. Even if you have the same cancer, your treatment may be different, or your body may react differently than others. So we all have different outcomes...

Also, remember that if/when your cancer comes back, technology and treatments are always changing, so there could be better ways to deal with it the next time around.  So there is always hope for a cure.

 

Lym999
Posts: 34
Joined: Feb 2020

Thanks, Debbie, and Max for responding. Deb, my chemo went extremely well. I had very few issues with it except for some Neuropy and constipation. I tried to work out as much as I possible and was walking about five to seven miles a day. My Oconologist seems happy with my progress and hopes to remove my port by the end of the year. The Lymphoma in my chest had grown so quickly that it had covered my Bronichail tubes leaving me basically with only one lung functioning. I couldn't even walk up a set of stairs without going up on my butt to rest at each step. It grew very quickly and was still getting bigger when I finally got to my first chemo treatment. It was amazing after my first treatment that within just a few days my right lung had reopened. I am nearly back to normal and don't think about it all that much. I don't know what i will do if it were to return, but i guess i will cross that bridge if it happens. 

DJS628
Posts: 64
Joined: Mar 2018

Hi Again,

Whoa! this is teensy print! I clicked on 5? Hmm?  Anyway, it sounds like you really did well with your chemo treatment. You were able to walk 5-7 miles every day and work out? The chemo didn't give me much energy to do that! Keeping active probably helped you, though. When I had the R-Chop, I would get nausea 7-10 days after my treatment and it would last a few days or so.  It felt like I had a mild flu bug, but I only threw up a few times.   It made me very fatigued.  

You only had one lung working? That must have been scary! 

I was surprised at how fast the chemo worked, too. After my first one, it shrunk to half the size, and after the second treatment, you couldn't feel it any more.  I asked the oncologist if I still had to have the third treatment and he said if I wanted to get rid of all the cancer, I do.  I had a pet scan some time after the chemo and before radiation and it didn't show anything.  So I asked if I really needed to have the radiation.  He repeated more or less, if we wanted to get rid of all the cells, we do.  I didn't understand at the time that the pet scan shows lumps/masses/tumors, not actual cancer cells.  

I had a friend who died of lung cancer (never smoked) and she told me that a lot of people kept telling her how brave she was.  She told them that she really wasn't brave, but did what she had to do in order to try to save her life.

I said the same thing to someone: I don't know what I'll do if it comes back.  He said more or less, what did you do when you first got it?  You fight it the best you can...you'll do it again.

I hope you won't have a recurrence.  In the meantime, enjoy every day and try not to worry about it.  

Take Care,

Debbie

Lym999
Posts: 34
Joined: Feb 2020

Hi Debbie,

 

I was really worried about doing the Chemo treatments. I had heard from numerous people how awful it had been for them and I even asked the nurse if I would be bedridden from it. They never told me I couldn't work out and I tried to do as much walking as I physically could. My Oncologist assured me I would never get sick and I never once did. I had been also worried about having problems in the bedroom and he once again assured me that wouldn't be a problem and he was right again. The only problems I incurred were some Neuropathy in my hands and Constipation. Overall my Chemo experience wasn't all that bad considering how much they were pumping into me. I believe there were 13 different things listed from just Tylenol to all the different Chemo's and ten days of Revlimid. I guess in a way I had been lucky.

I tried also to get out of doing all six treatments but that went nowhere with my doctor. He was like your doctor and said we needed to all of the treatments to make sure it was completely gone. There are times I completely forget about it, but then realize what I had gone through. There aren't very many people who want to talk with me about it and it is nice to have a board like this that understands how others feel. I want to thank you and the others for being supportive and hope others will join in.

 

John

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

I was diagnosed with DLBCL stage IV in August 2015. My first indication was a fast growing tumor in my breast.  Had 6rounds of R-Chop and 3 of IV methotrexate. I was in remission for 5months and had a relapse on the lining of my lung which was caught early with a 3 month CT. I then had RICE, BEAM and Autogolous SCT.  It will be 4 years on September 27th Since my SCT.  I am worried everyday of another relapse.  I have another 6month CT coming up in two weeks and am already nervous!  In the meantime I have gotten on with life and have a beautiful grandson that just turned 1.  We watch him 2 times a week.  With Covid around it was a hard decision, but at the same time I don't want to miss out on my grandchild when I never know what the future will bring.

Sharon

DJS628
Posts: 64
Joined: Mar 2018

Sharon, so glad you've been in remission for 4 years now!  Here's hoping you will remain that way!

I experience that same anxiety before a follow-up appointment and scans. Some people tell you you don't have cancer now; forget about it! But until they experience a cancer diagnosis, they won't understand how hard that is to do.  Especially after a relapse.

Enjoy the grandson! 

---Debbie

P.S.

I had an Auto SCT 2 years ago (Jan. 2018) and it'll be 2 years in remission since my recurrence in Sept.  of '18 (8 months after the transplant).  Did you know that Sept. is Lymphoma Awareness Month?

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

I tiotally agree with the anxiety before scans. People who have never been diagnosed will never understand. I know I didn't.  I remember years ago when a friend of mine was starting chemo and talking about losing her hair.  I made the comment " it's only hair" and she snapped back, "yes, but it's not your hair". I regret saying that now because of course when I went through it, it was different!  She was one of my biggest supporters!   

Yes, I do know that September is lymphoma awareness month!!!  My very first Chemo was September 19th, 2015.  The hospital floor I was on was all decorated! I wasn't aware until that moment! 

Sharon

DJS628
Posts: 64
Joined: Mar 2018

Sharon,

Your experience sounds like mine (somewhat).  Glad to hear you've been in remission for 4 years (and counting!) since SCT. Please keep us posted on how you're doing.

---Debbie

Lym999
Posts: 34
Joined: Feb 2020

Sharon, My thoughts and prayers are with you. I am still new to all of this and really haven't had time to even think much about it returning. I know they are others not so lucky and I hope everything turns out good on your next CT Exam. Thanks for sharing!

 

John

Scubamom for two's picture
Scubamom for two
Posts: 25
Joined: Apr 2018

Greetings Lym999,

I understand how you feel.  I was initially diagnosed with High Grade DLBCL at age 53, with possible brain infiltration in August of 2017.  The Lymphoma was very aggressive and before I was eventually properly diagnosed, we were treating what we thought was a rotator cuff injury to my shoulder.  By the time I got the correct diagnosis, the Lymphoma had gone after my left hip, my skull, both femurs, and a couple of ribs.  I had 6 rounds of DA-R-EPOCH, 11 intra-thecal (lumbar puncture/spinal tap) chemo injections, and 2 rounds of High Dose Methotrexate.  THe excellent news is that I responded very well to the treatments and have remained completely without evidence of disease for 2-1/2 years now.  My amazingly talented and nationally known expert Oncologist at MD Anderson tells me the odds of the cancer returning after the 2 yr remission mark is very low.  I do have some residual damage to a couple of areas and some very mild neuropathy, but finally after reaching the 2 yr NED mark, I actually stopped thinking about a relapse and felt like I could finally really live my life without worrying.  That lasted for 5 months and then I just had a scare.  I had taken a bad fall about a month ago while on a 7 mile hike with my family.  The path was fraught with tree roots, rocks, and debris and I got my left toe hooked onto a tree root (according to my sone who saw the fall) and down I went, smashing my face into the trail.  We both thought I broke my nose at first.  An x-ray showed that I did get a permanent deviated septum that was not present prior to the fall) thanks to having all those prior CT scans, I know that).  Anyway, about two weeks later I started feeling a nagging occasional burning pain in my right hip and pain in my shoulder that felt suspiciously like the Lymphoma had felt.  The pain was mild and would come and go, but since this type of cancer is so aggressive, I contacted my team after it continued for two weeks.  We were able to get blood work, a CT of my neck, chest, abdomen, and pelvis, and an MRI of my brain all done within one week from when I first contacted my team in Houston.  We had all the tests done in my hometown in far northern CA because of the COVID-19 dangers.  Thankfully, all the scans showed no evidence of any new disease, so it seems this was a false alarm.  I have my phone appointment with my Dr. in Houston on August 10th, but I was able to get a copy of all the reports from the scans and bloodwork and I am now thinking the pains were residual from the fall and maybe related to not being a youngster anymore.  Facing the idea of a possible remission was not as awful as I thought it would be.  I was just taking it one step at a time, although I did go back into my research mode, so I learned again about the best and most common salvage and third line treatment options, as well as worked out a way to watch a brand new webinar on CAR-T.  The experts are constantly developing new and better treatments in the unlikely event we do encounter a relapse, so that is comforting.  I hope you have clear scans and remain in remission!  Stay Strong!

Cheers,

Scubamom for two!

Lym999
Posts: 34
Joined: Feb 2020

Hi Scubamom,

Wow! I can't believe all the places you had Lymphoma. It is unreal all the different places it can occur. I know when I contacted the Lymphoma society they said it can occur anywhere. I am glad everything is working out for you. I hadn't thought a lot about it returning until recently since my next scan is only a month away. It is nice to be able to talk with others about it as most of my family and friends don't want to discuss it. I plan at this point on doing my next Ct scan alone. My doctor will get the results from it immediately so I will know quickly where I stand. I wish you the best!

 

John

Scubamom for two's picture
Scubamom for two
Posts: 25
Joined: Apr 2018

Hi John,

In my case, the DLBCL went after my bone marrow and bones and I never had any enlarged lymph nodes or other organ involvement.  I am told this is a less common presentation.  I am happy to hear you are in remission and you have every reason to believe you will stay that way.  It is also great that you can get the CT done and get the results so quickly!  Hope all stays well and stay strong!

Cheers,

Diane

DJS628
Posts: 64
Joined: Mar 2018

Scubamom for two,

I remember you from the "old" forum.  Glad to hear you are still NED!  Ouch on that fall! I hope you have healed up from that?

Take Care,

Debbie

Scubamom for two's picture
Scubamom for two
Posts: 25
Joined: Apr 2018

Greetings Debbie,

Thank you so much and yes I have mostly healed up from that fall, although it looks like I may have a scar above my lip to go along with that deviated septum.  I hope all is well with you and thanks for the kind comments!

Stay Strong!

Cheers,

Diane/Scubamom for two

DJS628
Posts: 64
Joined: Mar 2018

Hello,

Sorry I haven't been on here for a while.  Didn't this forum used to send us an email when we get a reply?

Glad you are all healed up from your fall. That is no fun!

I am still in remission.  I am very thankful!

I should post about my most recent appointment with a fill-in oncologist since mine left the area. It was very interesting, to say the least.

Do you know if the transplant forum is still around? I can't seem to find it? PoGuy made it available?

Anyway, I hope your summer is going well?  My garden did pretty good this year!  I've been eating lots of green beans, & tomatoes! I have a few watermelon getting big, too!  Yum!

Hope to hear from you soon.

---Debbie

DJS628
Posts: 64
Joined: Mar 2018

Hi John,

Just wanted to wish you luck on your next scan! You have probably learned that some people don't know how to react to your diagnosis or your up-coming tests. Just know that we're here for you!

You really did well with the chemo.  I read all the comments up above (haven't been on the forum awhile, sorry). I'm very grateful that I was retired when I got my lymphoma as I wouldn't have had the stamina to continue working during treatment.  Everyone does differently; glad yours went so well!

Take Care and let us know how you're doing, ok?

---Debbie

Lym999
Posts: 34
Joined: Feb 2020

Hi Debbie,

 

Thanks! This is my first check-up since my chemo ended in March 2020 and up to a few weeks ago I really hadn't thought a lot about it. I do feel confident right now, but that could change at the last moment. It is nice to talk with others who had been through this and as I mention in the past there aren't a lot of others I can talk with about it. I am not sure if that is the case for most here or if it is something that only effects myself. Thanks Again!

 

John

 

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