Double hit non-Hodgkin Diffused large b-cell lymphoma (DH NHDLBL) recovery returns relapse?

Thanks for the replies on this. We were able to get my husband's stomach and digestive symptoms alleviated . The Dr. gave him a proton pump inhibitor (Protonix) for the upper GI pain and Sennalax and Miralax for the lower GI. We've just completed the 2nd round of in-patient DA-EPOCH-R and he's doing okay. His dose was adjusted upwards by 20% and he reports that he feels the difference and is now experiencing headaches.

We had a mishap with the Nuelasta injector after we got home, he snagged it on a doorframe and it pulled off. This caused all manner of anxiety and stress and frantic phone calls. Since it's the weekend and he will have to wait until Monday morning to get the injection in the office...just barely within the 72 hour  timing window. We discovered that the reason for that 72 hour window is that, you need to have that shot 14 days before you start your next treatment because of the effect on your blood counts. So , if a Nuelasta automatic injector is part of your protocol, I suggest making sure it's taped on there real good, we're going to wrap his with an ace bandage next time to make sure it's protected.

All in all, we are highly optimistic. His double hit Large Diffuse B Cell Lymphoma is at Stage 2-E, the worst part for him is having to be in hospital for 6 days at a time.

PET scan results came in clear, one more treatment after this and we're calling it remission...now all we have to do is quit worrying about how long it will last.

TBone45. So glad to hear your good news. I have been in remission for 3 years this month after 6 rounds of DA EPOCH-R. I am getting to the point that I don’t worry as much and hope to begin thinking of myself as cured.  Best of luck to you

May 1 said:

I am so grateful for all your posts

I'm a a double expressor with lg abdomen tumour, just finishing round 2 at MSK.  You don't have to do Inpatient there - R EPOCH 4 days, walk to hotel, out patient w bag of goodies. Dr felt and sees shrinkage but I'm wary. 6 rounds planned, when will I feel like things are moving - will it be more discomfort?  should I up dosage - I think its based on your nadir and responses though - thx all and God bless us for miracles of healing...love to hear your thought!

And welcome.  Sorry to hear about your diagnosis, but it sounds as though you are in very good hands at MSK.  I was diagnosed with double-expressing DLBCL Jan, 2017. I had an adnexal mass as well as peri-aortic lymph node involvement. (Adnexal = "structures close around uterus, such as the ovaries, fallopian tubes, or any of the surrounding connective tissue").  Finished 6 rounds of DA-R-EPOCH just one year ago. After my 2nd round, CT scan indicated significant shrinkage of the adnexal mass, which was taken as a very positive sign by my medical team. So, you are going in the right direction and hopefully will continue to do so.

Discomfort question:  there seems to be a consensus here that the chemo-related fatigue will become more pronounced with each round.  It certainly did for me. If you find that your neuropathy gets significantly worse, you need to share that with your doctor.  I do not recall anything else getting worse with each round.

"Should I up my dosage?"  That decision will only be up to you in that you can decline an increase if you want.  The decision to increase/decrease will be based on your numbers:  WBC, ANC, and platelets.  With no neuropathy and a not-too-dismal nadir, your dose may be adjusted upward (Dose Adjustment in DA-R-EPOCH).  IIRC, it is only the vincristine (the "O" in EPOCH) that gets adjusted.  I begged for an increase, but they wouldn't give it do me.  I was decreased on one round due to very low nadir.

A comment about the inpatient/outpatient option for others readers:  we asked about this but our clinic does not have the space or staffing for it. Since patients must come in every 24 hours for "bag change", it does take additional staffing.  So inpatient-only for us until the clinic situation changes.

Best of luck going forward.

Scubamom for two said:

Wahoo tbone45!  That is

Wahoo tbone45!  That is excellent news!  I am only four months out from my last treatment for stage 4 DLBCL and I am trying to figure out how to worry much less about relapse myself.  It does get a tad easier as time goes by and the scans keep coming back NED though.  I have been back at work full-time for about three months.  I have heard from multiple sources that between 60-70% are declared cured (5 yrs of NED) and I think this stat includes those treated with R-CHOP and DA-R-EPOCH (of which I had 6 rounds).  I also had to have prophylactic IT chemo (12 times) done throughout the DA-R-EPOCH and 2 rounds of High Dose Methotrexate at the end.  I hope you and your husband find a good new "normal" and you get to resume living where you can schedule the ugly C around your life and not the other way around!  

 

Take care and be well,

Scubamom for two

Kind of discouraged right now, even with the good news of remission. Consult tomorrow with radiation oncologist, We really don't want to do radiation at this point, after 6 cycles of chemo and the scan being clear. It's all he can do to recover from the side effects  of chemo  try to feel normal again. The nueropathy in his hands and feet is annoying but not unbearable , the fatigue and weakness is causing depression. The thought of doing radiation on top of all that just doesn't seem worth it unless they can give an extremely convincing argument that this added treatment will increase his cure odds significantly...otherwise I think we'll say no thanks. 

no I did not have radiation. My Dr never mentioned it

Hello to everyone on here that has fought, is fighting, or is a care provider for someone fighting. I wish every single one of you did not have to go through this horrible situation. 

My father is 70. Back in 2006 he was diagnosed with folicular NHL. He was given a 20 year prognosis, which at the time was still very upsetting, but we were told he was very lucky to have caught it so early. He didn’t require much, if any treatment when diagnosed (I was not as involved then as I am now so I’m not sure what he had done, but it definitely wasn’t a chemo cycle. I believe it was a surgery and some type of infusion). My father, in spite of being a smoker and poor eater, I don’t think ever missed a day of work in his whole life. I won’t lie, after a few years, it almost seemed like he didn’t have the disease anymore. 

My father has dealt with lower extremity joint issues from work and untreated injuries for quite some time. It finally got to the point that about a year ago, he looked into having a hip replacement, as the pain was getting worse. This was right around the time of his last scan at MSK which came back clear. As finances was a concern, this surgery needed to be planned, so it got postponed until about 8 months ago when he started the process of clearance for his surgery, which was a lot. This whole time the pain got worse and worse and became shooting. He had bone on bone arthritis, but it was suspicious the level of pain he was having. He was also rapidly losing weight (260 to 235 in three months, he’s 6’3), which his surgeon told him to do, but this was more than he was making an effort for. He was given ibuprofen for all those months while awaiting surgery that was supposed to take place the beginning of October 2018. The surgery was canceled a few days before due to a finding of an irregular heartbeat. 

This brings us to the current condition we are in. Mid-October, while awaiting a follow up PET scan for his heart, my father almost collapsed and needed to be brought to ER by ambulance. Turns out it was a really nasty bleeding ulcer in his upper GI track. They get this under control, but while in the hospital, his gallbladder becomes emergent. For good measure, he develops a blood infection from that also. And remember, we don’t know where he stands for surgery with possible blockage in his heart. We get him transferred to St Francis in Roslyn (I say that cause they were excellent! Very young Staff but excellent!). They get the infection under control, check the heart (no blockage at all), and remove the gallbladder. Great news. However, one of the scans revealed a swollen node near his kidney. At that point, with so much else going on, they recommended a follow up with MSK for that, we agreed. They got him eating again, and he was released. But very very knocked down and weakened from this two weeks in total hospital stay, where he continued to lose more weight. 

Once hes home, he doesn’t get better. Abdominal pain, hip pain, loss of appetite, and weakness. We started the process of testing at Sloan, which took a Month and a half. He was released from St. Francis beginning of November and finally in mid December they got the results that his cancer was back. In that time, he dropped in weight from 235 to 195. I finally lost it on them at MSK. I went off on them and brought admin in on the case, that their hospital allows someone to lose 40 pounds while they are awaiting results for a month and a half? This is with three visits to their urgent care cause of the poor condition he was in on those occasions, including on thanksgiving, my dad’s favorite holiday, that he asked to go to the hospital. We were begging someone to take care of him. You had a family super involved. Again, tough guy that doesn’t miss work, asking to go to the hospital, they dismissed the urgency. That said, they finally diagnosed as a reoccurrence of the follicular that had spread. They were wrong. They released him and when he still wasn’t right, they biopsy him again to reveal that he was now dealing with stage iv large B cell lymphoma, and it had spread to his abdomen, chest, sinus and marrow. And yes, it was in his upper right femur where the hip pain was. 

The reason for his poor condition? Ulcers had developed all over his GI track and he was bleeding again. MSK repaired them as best as possible and he was given more protonix. Doctors wanted to start a half dose of r-chop, but warned us that this could open the ulcers. He was brought into ICU. They were expecting a complication we were told. Well... he did fantastic. He said he felt it healing him within two hours, this was great. He even did a demonstration for me where he stood on his bad hip next to his bed and said there was absolutely no pain. Second treatment, also half dose and also at MSK, they said there was also going to be a chance at complications. Again, nothing. He has also now gotten an appetite back and eating at home, and not only that but walking around with a cane, including not needing a wheel chair for his doctor appointments. So they said the rest would be full dose at out patient. We were finally getting some forward progress. Then he got the Neulasta shot...

The first two days were fine, but then the pain started to creep in. All coming from his upper right femur. They told us that it typically doesn’t come from a specific location, but that it should only be about five days of pain. We’re on day 13. We went to ER on oncologist’s recommendation two days ago, to get pain under control and get imaging done. No fracture, thank god. We have a consult with an orthopedic oncologist at Stony Brook. Hopefully we figure out why this level of pain from that location, because this was setting him back again with mobility and eating, which his PCP said that the most important thing for him now is gaining weight and staying as active as possible. They recommend Claritin and that maybe is helping a bit? Upped the amount of oxycodone for pain spikes, so more opiates now. We were again going backwards. 

Now for why I joined this group, specifically, as if the rest of that wasn’t enough. My fathers lymphoma oncologist called me this Wednesday to give me an update. He tells me that the genetic testing of the biopsy just returned and that my father has double hit lymphoma, and they want to change his treatment to the DA R-EPOCH. He spent about 40 minutes on the phone with me, and I’m educated enough to ask some stuff I thought was important to ask, but at the time I knew nothing of this subset. Since then I have discovered just how poor the prognosis is, although very mixed definitions of what poor means. Now his doctor did say that I should take comfort in the fact that a few weeks ago, they would have never considered this treatment for him, as they didn’t think he was strong enough to take it. It was because of his resilience and how well he handled the half doses that he is even a candidate to receive this now. Another hurdle, and this is a big one...

I apologize for the length of this post. I’m nervous, so this writing helped me process the whirlwind we’ve been through these past four months. My father was working and driving around two days before he went into the hospital by ambulance in October, now he can hardly get out of bed. It feels good to get that story off my chest. Now I ask for all of your insight and what I should be considering...

In his weakened state, is my father up for this treatment? This rapid change in condition, is he going to be able to handle treatment? Oncologist said that we can do this treatment outpatient, and my father wants that also, but should we insist on first cycle administered in the hospital? Has anyone had any experience this extreme with the Neulasta? CBD have any benefit with inflammation, appetite or pain relief? They anxiety and depression he has, he’s a shell of himself, aside from keeping him on target, any other advice? There’s apparently a ton of research in Japan on this, do they have any different approach there? Anymore success? Any help or insight would be so appreciated by all. I hope to be able to return the favor to someone else going through this one day. Thank you all. 

• Mark

dewdrs said:

DLBCL sub-type Triple Expressor

Hello everyone!

My wife is in MD Anderson receiving DA-R-EPOCH cycle 4 with a consolidation treatment plan including an Auto Logous Stem Cell Transplant. Her diagnosis was established by immunohistochemistry with over expression of  c-MYC, BCL 2 and BCL 6 as her FISH came back negative for c-MYC. Her case was classified as stage IV and her IPI was judged to be 4 for chance of remission. She too has been receiving prophalxysis interthecal injections of Methotrexate to guard against CNS.

We are appreciative to see so many here with similar diagnosis and hear their stories. Many positive outcomes.

We have a PET CT scheduled for the 18 and if it shows she is in remission she will move on to the stem cell side and mobilization for stem cell harvest.

So far we have read many remedies for side effects.  Hers have been mild so far. She did have a reaction to her first dose of Rituxamin with chills and nausea but not since. The claritin does help with her back pain from nuelasta and we had an issue cycle 3 with nuelasta injector malfunction. She uses Miralax to help with constipation and recently we started guarana which we read helps with fatigue. Seems to work. Does have a lot of caffeine though.

One thing I have not seen mentioned is blood transfusions. She has to have at least one unit by transfusion  every cycle and looks like she will have one tomorrow which will make her second transfusion this week. 

Has anyone else had a similar experience?

One other bit of news, we found out a friend has a nephew who is undergoing R-Ice now in preparation for CAR-T. Crazy thing is we ran into them in the hallway heading out for a walk. He is 2 rooms down from my wife . He has DLBCL also, sub-type unknown but he has had multiple relapses.

Thank you all for your posts. We wish all those walking in our shoes a durable cure.

dewdrs

Hi Dewdrs, I believe we talked before.  My diagnosis was quite similar to your wife's (DLBCL, double expressor, no hits).  I did have multiple transfusions during my R-EPOCH (6 rounds).  In the end, though, I only needed 4.  They decided them as we went along, based on my numbers (primarily hemoglobin).  If it did not fall below their cutoff, I did not get transfused (I cannot remember the exact cutoff, but my Hb definitely fell below 8.0.) This was the case both inpatient and at clinic visits in between rounds. I was always scheduled for a 4 hour outpatient appointment in case I needed one. 

Anyway, I expect that they will only transfuse her if she needs it, and wanted her to be psychologically prepared.  I didn't like them (who does?), but did not hestitate to accept them.  Best of luck to all of you.

tbone45,

Fear of relapse, that is what is driving our treatment decisions...as we move forward to autologus stem cell transplant later this month.  My wife was diagnosed with DLCBL through our primary care group and we sought a second opinion at MD Anderson where the diagnosis was confirmed and sub-typed as triple expressor with an IPI of 4. 

She has completed 5 cycles of DA-R-EPOCH in is moving forward with the ASCT in first remission in a consolidative therapy treatment plan that was presented as her best chance at a durable cure.  She does not want to keep looking over her shoulder and wondering when the other shoe is going to drop.

While she does understand that the ASCT is not a sure cure we are pursuing it in the hope that it will be.  While I hold that faith, I also know that in the event of relapse we will have new therapies to look forward to like CAR-T and CAR-NK among other promising therapies.

What really makes it hard is the fact that it takes time to recover from high dose chemo and ASCT from what I am told (6 months to a year) and with the fatique and new normal so many talk about it has to be super hard to forget about possible relapse with the all the follow-up in the first several years.

We feel your pain.

I am not sure how we will be able to move forward except to find new projects and make new plans.  I would love to hear others share how they cope with the fear of relapse.

How does one cope with the fear of relaspe?

dewdrs

tbone45,

Autologous Stem Cell Transplant (ASCT).  Starting from remission, the idea is the conditioning chemo (BEAM) kills any remaining abberant B cells and then they rescue her immune system by rebooting it with an infusion of her own stem cells.  It basically rebuilds her immune system and has been successful in curing approximately 40% (MD Anderson says 60%) of folks who have it.  Autologous as opposed to Allogenic (not your own cells) so there is virtually no chance of Host versus Graft disease or stem cell rejection.  CAR-T is an engineered T cell with a Chimeric Antigen Receptor attached to the T-cells to allow it to bind with the cancer cells and cause them to die via apoptosis.  The simple explanation of CAR T-cell therapy is that it takes a patient's own immune cells and reprograms them to fight the cancer.

It's good that you have a fiddle to fiddle around with!  I bought a fiddle once upon a time to learn the intro to Doug Sahm's version of Faded Love.  I learned it and then disgarded fiddle playing in favor of continuing my guitar playing.  Over the years, playing guitar has allowed me to cope with many things.  I can play and think about only the music and the technique for that period of time I play.  Like a mini vacation from my own mind. Now I write songs and learn an occaisional new song I hear or have never played before.  

We have still to master the state of being of keep on keeping on but until we do, we are living in a new world.  We hope to lean on family and friends as we keep going down the path towards a life where cancer is not a threat any more.

Sounds like your visit yeilded a positive outcome.  We hope you continue to hear positive news as you keep on keeping on!

dewdrs