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

ggraphix said:

Following

My husband was diagnosed with triple hit DLBCL (with the C-MCY, BCL2, & BCL6 genes).  The diffuse tumor is (or was) in his abdomen.  He was diagnosed in Denver in late October in Denver, but just finished 2  long cycles of CODOX-M/R-IVAC .  We are still up in SLC with bloodwork and labs.  The chemo put him into AFIB and up in ICU three times, but other than that, the worst side effects have been the mouth sores from the Methyltrexate and the nosebleeds.  I pray you both can be cured of this terrible disease!

I'm responding to ggraphix as we meet so few people with this diagnosis. Steve is receiving in patient R-EPOCH. After the first chemo, he landed in the ICU and had such a long recovery (pneumonia, sepsis syndrome, too weak to walk) he missed the second round of chemo. He finally recovered and went through the second round much better (they reduced the Cyclophosphamide - day 5 slightly), and he is getting ready for Round 3. His tumor is in his inner auditory canal. He won't have a PET scan until he is preparing for round 4 of chemo. We live in Columbus, Ohio. I hope to hear from you and hear how your husband is doing. I had a bear of a time as a caretaker in the beginning, but am getting the hang of it.

Hello!  My husband was diagnosed with Double Hit Lymphoma (Stage 2A Bulky) earlier this year.  He has been on the Dose Adjusted (DA) R-EPOCH regimen and finishing up cycle 6.  His mid treatment scan showed that he is in complete remission.  Our final scan will be in mid September.  My question is about dose adjustment.  With this regimen, you are supposed to be updosed with each of the 6 cycles.  We were updosed from cycles 1 to 3.  After cycle 3, my husband was down dosed because of neutronic fever and has stayed on this level for cycles 5 and 6.  Should we be concerned that he was not able to be get the higher doses of this treatment?  Does it impact the end result?  Would appreciate others' experience and information. Thanks.

Semone12 said:

DA-R-EPOCH for Double Hit Lymphoma

Hello!  My husband was diagnosed with Double Hit Lymphoma (Stage 2A Bulky) earlier this year.  He has been on the Dose Adjusted (DA) R-EPOCH regimen and finishing up cycle 6.  His mid treatment scan showed that he is in complete remission.  Our final scan will be in mid September.  My question is about dose adjustment.  With this regimen, you are supposed to be updosed with each of the 6 cycles.  We were updosed from cycles 1 to 3.  After cycle 3, my husband was down dosed because of neutronic fever and has stayed on this level for cycles 5 and 6.  Should we be concerned that he was not able to be get the higher doses of this treatment?  Does it impact the end result?  Would appreciate others' experience and information. Thanks.

Full dosing would have risked his life to sepsis. It's just that simple. It may never come back. If it does, there will very likely be a better, less toxic treatment when it does. Or, if his basic health is decent, he would be a transplant candidate - but that is another universe.

alylima said:

R-EPOCH DA

Hello!

I'm glad I've found this forum. I've read some threads and everyone is just so nice.

I was diagnosed with a mediastinal grand b cell lymphoma last August. I'm a 33 year old woman.

 

I'm about to start my 4th out of 6 in-patient chemo in about 1 week.

 

I'm very scared because the dose will be upped this time and of course each time it gets harder, even though I haven't suffered much. 

 

My symptoms so far have been (if this somehow helps anyone that might read this):

- hair loss (all of it fell about 20 days after my 1st round);

- numb fingers (which may cause for my doc to change one of the substances of the R-EPOCH protocol - I'm a little concerned about this);

- nausea

- sour gums (it has just occurred - I hope it doesn't get nasty - any tips, anyone?);

- constipation;

- swelling face from prednisone.

 

I also take Granulokine  (~Neulasta) for 7 days after each round to increase my defense cells (it causes pain because your bones expand to produce a higher quantity of those cells).

 

I was a little scared to read in this thread that it gets worse after the treatment is finished, because I was hoping to feel better right after hahahahaha 

 

The worst part is being hospitalised for 6 days each round, with nurses checking my vital signs all the time (that have never altered once), checking how much I eat and even pee (yes, I have to keep record of that in a chart!).

 

Emotionally it's a struggle. I'm tired. I had to take a medical license from work and now I don't even imagine how it will be to get back.. I work for a big company and was a workaholic... Now things don't even make sense to get best to how they were.

 

I have a very loving husband that is taking care of me all the way. God bless him.

 

Well, this is my mid treatment experience. I hope to find more threads about R-EPOCH so we can share.

 

 

So sorry to hear that you are having to go through this, but try to stay positive.  You are now half way done with the chemo...Be glad for that.  Me: 68 yo F with DLBCL, aggressive, double expressor. In bone marrow failure at the time of diagnosis (= already seriously ill). I did the 6 rounds of DA-R-EPOCH from Feb to May. I'll offer what I can in the way of how to cope:  

Hair loss: started falling out 1 week after 1st round. All gone by 3rd round, but growing back by 6 weeks post-chemo.  Now (~24 weeks post), full head of hair

Numb fingers: tell your doctor; there is an assessment scale that they use to determine if the "O" (=vincristine) should be lowered or changed. 

Nausea: ask for additional Zofran if you need it.  There's a dosing limit, so you may need something additional (I think they use Phenergan).  Ginger ale & ginger chews can help, but watch your overall sugar intake.

Sour gums:  ask for a prescription for "Magic Mouthwash" ASAP.  You may find that this gets worse.  MM contains lidocaine, so if you are allergic, you'll need a different formulation.  Absolutely avoid salty foods like chips, salted nuts, etc.  To get appropriate sodium intake, eat foods with "hidden" salt, such as cheese. 

Constipation: most people here seem to use the Colace approach, staring 2X per day one or two days before chemo round and continuing until reaching your "comfort zone" after chemo.  Drink water (yes, you will pee more, but you need the intestinal lubrication).  Walk as much as you can.  Eat high fiber cereal/foods.

Swelling: didn't have this, but did have fluid accumulation that was treated with Lasix. 

Neulasta bone pain: many people report that Claritin helps.  I found this to be true and used it after terrible first round bone pain.  Generic is OK, but needs to be "loratadine" (other anti-histamines do not seem to provide the benefit).  Start a day or two before the Neulasta. This remedy is anecdotal and you should check with your doctor before taking.

Fatigue: yup.  Try to be as active as you can when you can.  The more you can stay "ahead of the curve", the easier it will be going forward.  But fatigue is part of it.  If you can find activities that get you up, even if it's just taking your dishes to the sink, do them!

Boredom in-hospital:  again, try to find activities that you can do.  Walk or try to at least sit up as much as possible.  I crocheted, which helped me "measure" the numbness in my hands. Podcasts are good, as are audio-books.  

Husband: worth their weight in gold!  You are so lucky to have him there for you. Good luck with the next round and please come back to let us know how you are doing.

samiz said:

Neuropathy After 4 Rounds R-EPOCH for DHDLCNHL

Hi,

I'm very grateful for these boards and being able to read of others' experiences.

My husband is 75 and was diagnosed 5 months ago with Double Hit Diffuse Large Cell Non-Hodgkin-Lymphoma. He's received 4.2 rounds of R-EPOCH but the 5th had to be aborted following a fall which caused his port to leak chemo. Neurological tests show him to have significant neuropathy presenting as generalized weakness, unsteadiness while walking, tingling fingertips, and loss of reflex-response in the left leg. The oncologist says that we can reduce the Vincristine and that should help but he has also referred us to UCLA for a second opinion and we are not really clear as to why. With the holidays it's been impossible to get hold of him for clarification this past week and we can't see the UCLA doctor for another week at least. Are there other options they might they be considering for my husband, and what could they be? Does anybody have any experience with this? Do doctors ever stop chemo altogether?

His mid-treatment scan was very reassuring and showed he is responding very well to the tratment in terms of it killing the cancer cells, but with a reduced dosage of some elements of the chemo, surely this compromises its efficacy. I guess my question is, in terms of achieving remission, how big a hit are we taking if they reduce one or more elements of the chemo?

Many thanks to anyone who can help me with these questions. Feeling very anxious about the hold-up in treatments.

 

Hello samiz, and welcome to the forum. A couple of preliminary remarks:

Neuropathy is a fairly common side effect with Vincristine, and it is not unusual for doctors to choose to modulate the dose when that side effect kicks in (generally towards the end of treatment) in order to spare the patient's nerves.

R-EPOCH is often referred to as "DA", i.e. "Dose-Adjusted" - meaning, as I understand it, that the various chemotherapeutic agents are administered to the patient at the highest tolerated dose, with the dose being reduced (or "adjusted") in response to the patient's side effects.

Your husband has already received two-thirds of his chemo regimen and is showing good response, so this should be reassuring to you. Not heeding the neuropathy could leave him with permanent damage, whereas reducing or eliminating the Vincristine at this point can afford him some degree of recovery from the neuropathy.

Regarding your concerns that this dose-adjustment might compromise his chance of achieving remission, I will share my own experience:

I have Follicular Lymphoma, and received R-CHOP (i.e., the same as R-EPOCH less the Etoposide) from March to June 2016. I have been in remission since, despite the fact that the hematologist decided to pull the Vincristine from my cocktail after the first dose, due to severe neuropathy. When I asked whether that might compromise my chances of the treatment being successful, he replied that the Vincristine was not the most essential component - so, not to worry!

I guess the main point here is that with chemotherapeutic treatments doctors walk a thin rope between curing the patient from cancer and leaving the patient permanently damaged...

Hope this helps.

PBL

My husband was diagnosed with double hit LDBC Lymphoma, he sailed through the first cycle of R-CHOP before we knew about the double hit part. So the chemo protocol had to be changed. He just went through first cycle of DA-EPOCH -R and it is a totally different animal. He tolerated the infusions very well but we've been home from the hospital 5 days and the side effects are hitting pretty hard. He is having a terrible stomach ache, not nausea, just pain. Anybody have that? He has to go in for a blood draw tomorrow and we'll ask the doctor about it. 

tbone45 said:

side effects DA-EPOCH-R

My husband was diagnosed with double hit LDBC Lymphoma, he sailed through the first cycle of R-CHOP before we knew about the double hit part. So the chemo protocol had to be changed. He just went through first cycle of DA-EPOCH -R and it is a totally different animal. He tolerated the infusions very well but we've been home from the hospital 5 days and the side effects are hitting pretty hard. He is having a terrible stomach ache, not nausea, just pain. Anybody have that? He has to go in for a blood draw tomorrow and we'll ask the doctor about it. 

Stomach ache, profound fatigue, very irritated bladder.  These are the things that I recall most clearly from a year ago.  I kept my diet very spare and gentle, but still lost weight.  I let myself eat whatever sounded good, even if it was just ice cream. The good news (?) is that at about day 10 post-chemo, things got noticeably better.  So 5 days in which to gather strength for the next round.  While the fatigue was cumulative, a bit worse after each cycle, everything else stayed about the same.  I also learned to stay well hydrated because of the effect of cytoxan (cyclophosphamide) on the bladder lining.  Good luck with it...After round two, it was hard to face the notion of 4 more rounds, but I got through it (age 68) and with your help, he should too.  And make sure he has the Claritin for the Neulasta-associated bone pain (check with your doctor first). Be well.

What is a double-hit?

AaronW said:

Double-hit

What is a double-hit?

Shady has it right.  More specifically, double-hit refers to DNA changes in the genes MYC plus either BCL2 or BCL6.  The changes may be mutations and/or rearrangments.  The importance of changes in these DNA regions is that they are related to a phenomenon in lymphocyte turmor biology known as "dormancy".  The incidence of relapse is higher, therefore an overall poorer prognosis.  There is another category (mine), called double-expressor.  In this case, the products of these genes are expressed (produced), but the DNA sequence itself is unchanged.  However, the genes have presumably undergone some other subtle molecular changes, since they are expressing their products when they shouldn't be, i.e., they've been "turned on". The relationship/progression between double-expressor and double-hit is unclear. Likewise, the precise impact of double-expression on prognosis is unclear.  

One's status as "double-hit" is determined by the molecular (DNA) analyses done on biopsy material while "double-expression" is detected by flow cytometry analysis.

TMI?  Sorry...