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

Cocamoxb
Posts: 7
Joined: Nov 2016

Well, after finding and reading through this forum, I've gotta admit it's both refreshing and discouraging all at the same time. The length of the cancer fight some people have gone through is inspiration from the human spirit. Learning that I may "live" like this until death is, well, less than inspiring.

 

I found the forum because I was looking for resources over the weekend while the doctor's office is closed about side effects post-chemo and discovering death from the cure is about as common as from the disease. At least that's how it seems from the internet.

 

My discovery of the DHNHDLBL was the tumor adjacent to my right kidney. It started as simple discomfort while laying in bed at night. No troubles during the day. It progresssed as cancer does to a constant discomfort, the pain, then the pain became constant. So i went to a Gastroenterologist because I thought it was a digestive issue.

Had an ultrasound at about 9:30am on a Monday. By 11am, the GI doctor called and asked how fast I could go back to the imaging center for a CT scan.

 

I don't recall what day it was, but one night in the last week of May I was almost asleep and started getting shivers that I couldn't control. Called the EMTs and by the time they arrived, things had calmed down. Short version, all was normal. Apparently it's called riggers and not uncommon in cancer patients. The oncologist says it may have been from the cancer, anxiety, dehydration, or a combination.

 

Long story short, I was referred to Rocky Mountain Cancer Center & had a PET scan and bone marrow biopsy. The PET scan showed a 3cm mass next to my right kidney. I had the biopsy completed as well and confirmed it was DLBCL. They scheduled me for the following Tuesday to start 6 cycles of R-CHOP. I also had a port implanted on my right chest. 

I went in the next Tuesday 31-May-2016 for my infusion and the doctor received the bone marrow biopsy that morning and it was determined that I had both DLBCL (tumor) & small cell (bone marrow), both double hit NHL with Myc & BLC2 mutations.

 

I was an over achiever in the world of cancer. The oncologist basically said I effectively hit the cancer grand slam in the bottom of the 9th inning in game 7 of the World Series all while down by 3 runs!!!

 

The oncologist asked if I could go to the hospital Thursday 2-June-2016, two days later. He said RCHOP didnt show good results over the longer term for DHDLBCL. He said a newer treatment called Dose Adjusted R-EPOCH showed much better results. The catch was that I'd have to stay in the hospital from Thursday-Tuesday, 5 days of chemo and Tuesday was Neulasta day.

 

Well, by golly, give me the best you got, Doc!!!!

Round 1-3 were no trouble at all. So non-eventful, I had to ask the oncologist repeatedly if it was working. My recovery was very predictable and quite easy. Go home Tuesday, sleep for 14+ hours, then 2-3 more days of blurry vision from the prednisone and a bit of neuropashy. In fact, it went so well that by the 3rd night of round 1, I couldn't even feel the tumor!

Round 4, a little more sleep and a little bit of bleh feeling for about 4 days. Then getting back to the "normal" feeling.

Round 5 & 6 were a bit more "bleh" feeling & in terms of neuropathy, it stuck around but steadily decreased until the next round.

Fast forward to September 15, 2016. I'm done with 6 rounds of poison to kill the disease that was going to kill me. We wait until 10-Octobe-2016 for the PET scan. Next day, results come back negative with a mild concern about the scar tissue that is regularly left behind. I'm told that is normal for lymph nodes post-chemo but it's possible but appears to not be any DLBCL tumor left behind.

The bone marrow biopsy takes place the following Monday, 17-October.

I go on a work trip from 24-October through 4-November and have no issues at all.

 

Tuesday 1-Novembe-2016 I get a call from the oncologist's nurse. Complete REMISSION!!!!!! YAY!

 

 

 

Now, the reason I'm here......... post-chemo side effects are FAR worse than those during treatment.

Things that are better: no neuropathy; cancer appears to be gone but may be back.

Things got much better from my discharge through just a couple days ago, Thursday 10-Novembe-2016. I'm laying in bed almost asleep when my breathing seems like it doesn't contain any oxygen. My pulse jumps, I'm getting dizzy, and riggers start up like the night I called the EMTs back in late May.

 

I call the EMTs and go for a ride. I'm having trouble controlling my body from the riggers. In the ambulance I nearly lose consciousness but hold on. He gives me oxygen and takes vitals. Heart rate is slightly low, 55 bpm. Nothing of concern but I still am having trouble breathing and my chest gets heavy.

We get to the hospital ER and they access my port and start IV fluid. My heart feels like it's trying to explode from my chest and I'm having a hard time breathing. Mostly the chest pain. I'm admitted and stay until Saturday. 

They run every heart, lung, blood & infection test they have and everything is as ideal as it can be.

Thursday & Friday nights I'm back to 12-14 hours of sleep.

On Saturday before they discharge me, they give me Zofran and it makes me feel much better within 30 minutes.

 

Today, Sunday, I'm home but with post-chemo side effects like sore joints, trouble eating, diarrhea, sore muscles, and slight hints of the shakes, but ever so slight. They come and go. I don't seem to have much appetite.

 

It seems rather odd that such intense side effects are happening 8 weeks after treatment, to the day, this all happens. It's also been exactly 1 month since my PET scan. So it's possible the NHDLBCL tumor is back near my right kidney. Seems like what's going on

 

Then again, my experience seems so nominal when compared to so many others. I'm wondering if it is just anxiety. It appears that my digestive track is involved because I can feel any solid food leaving my stomach, goes across the bottom of my sternum, and down my small intestines. It's similar to before I was diagnosed but back then it just hurt, it didn't move with the food.

 

 

 

Any-who, advise is welcome. Typing this on an iPad was a mistake. Please excuse any typos. Goodness!!

ggraphix
Posts: 4
Joined: Jan 2017

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!

triplehit's picture
triplehit
Posts: 1
Joined: May 2017

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.

Garden
Posts: 1
Joined: Jun 2017

So glad I found this site. As a caretaker, I am researching as much as I can. My husband is very weak. He has had Chemo in the spine as well as the R-EPOCH. After the 2nd spinal tap he had spinal fluid leakage, almost bedridden for 49 days. We had a feeling it wasnt' the chemo reaction because he had (knife stabbing headaches) and exteme dizzyness when head raised. If he laid flat it would subside. Told doctors and nurses repeatedly about spinal leakage. I guess it's rare. Finally they did a blood patch.  He just finished round 4 of 6.  After going to infusion several times and a Blood patch, I believe the spinal fluid leakage is fixed Appreciate the discussion that's ongoing.

Semone12
Posts: 2
Joined: May 2017

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.

po18guy
Posts: 967
Joined: Nov 2011

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.

Cocamoxb
Posts: 7
Joined: Nov 2016

I increased from 1-4 and stayed there because my tumor showed almost complete response,like your husband. I just recieved my one year clean scan. I was informed that the level is adjusted based on response. I think your husband was treated correctly. 

Nicholas25
Posts: 7
Joined: Jul 2017

just completed 3 round of chemo, not sure what fatigue means although I have heart pounding when I get up too quick and then it settles down.  I am trying to move slower and sit more....can anyone tell about other symptom?

po18guy
Posts: 967
Joined: Nov 2011

There is no way of knowing what your exact circumstances will be. Generally, fatigue, nausea, appetite loss, and hair loss to some degree. Everyone reacts differently. I was stupid enough to work 10 hour night shifts through two months of dose intensive CHOEP-14 (full strength EPOCH drugs minus Rituxan), but I survived. Well enough to go through another regimen called GVD immediately after (for T-Cell Lymphoma), then five other regimens, and topped off by a transplant conditioning regimen and a post-transplant immune suppression regimen. Pleasant? No. Survivable? Yes.

alylima
Posts: 1
Joined: Nov 2017

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.

 

 

Evarista
Posts: 242
Joined: May 2017

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
Posts: 1
Joined: Dec 2017

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.

 

PBL
Posts: 171
Joined: Jul 2016

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3154
Joined: May 2012

I extend a welcome to you also, samiz. And I am glad your husband is making good progress.

Like PBL, it is my understanding that any chemo agent can be lowered to avoid side-effects. What part of any chemo's effectiveness can be attributed to any one drug is mostly (educated) guesswork, since how these drugs interact is so complex. It is a version of polytoxicology:  The general effects of two drugs by themselves often will NOT match the anticipated effects of using the two drugs together. For instance, a glass of whiskey might be estimated to cause a given level of respriatory depression, while one dose of a narcotic might cause a different level of depression. But when combined, the effect is NOT additative, but more-or-less geometric.  So sorting this out is next to impossible.  And R-EPOCH has not two drugs, but 6.

I did 12 infusions of Vinblastine in R-ABVD. Vinblastine is a sister drug to Vincristine, made from the same plant (periwinkle), and the same mode of action: both are so-called antimicrotubule agents because of how they cut DNA strands when cancer cells divide.  Both are very prone to neuropathy.

I got bad neuropathy by about the 4th or 5th infusion, but my doc said to keep getting it full strengthy through all 12, which I did.  By the end I had total numbness most of the time to the upper wrists, and up to mid-thigh in the legs.  I later participated in a nationwide study for an anti-depressant based cream (topical) for severe chemo-induced neuropathy, which was judged later a failure.   But in the process I got to know a lot about the condition, which was very interesting, and also why I try to reply to most posts regarding neuropathy.  The RN who was my study contact, and who in fact was running the study at my hospital for the nationwide review, told me she had met neuropathy patients over the years whose entire bodies went numb. Very rare, but possible.

I would suggest that if OK with your husband's doctor, he reduce the Vincristine or eliminate it completely.

Gereralities:  Neuropathy does not occur in all Vincristine users, and most who get it have mild experiences. MOST people with neuropathy eventuall have it go away or reduce in severity over time. But "time" can mean a year or more later.  My neuropathy has not diminished much at all after seven years, but this is uncommon.  I have great difficulty keyboarding, and cannot turn pages in a newspaper or magazine hardly at all still today.   Cold weather worsens my situation.

Be aware that chemo-induced neuropathy and diabetic-induced neuropathy, while displaying the same symptoms, are different. The method of nerve damage is different: Diabetes depletes oxygen to the nerve sheathing, whereas chemo (simplified) chemically burns nerve sheathing away, because nerve sheating is fast growing, like hair and the stomach lining.  Think of the nerves as tiny wires.The sheating is their insulation, or wrapping.  When the insulation is killed off, the "wires" literally short-circuit across one another, causing the buzzing sensation, which is (again, literally) microscopic electrical voltages shorting out.   

Know also that diabetic-neuropathy drugs are NOT effective for chemo-neuropathy.  Last time I checked, there was still not an effective treatment for chemo-induced neuropathy, but one drug had been FDA approved.  These are derived from anti-depressant drugs (SSRIs), which is why they contain Suicide Warnings.

I wish the news were better regarding this condition.  It is better to eliminate the cause early-on than to hope for good luck after the damage is done.

max

tbone45
Posts: 8
Joined: Mar 2018

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. 

Evarista
Posts: 242
Joined: May 2017

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.

Evarista
Posts: 242
Joined: May 2017

Sometimes people say "stomach ache" when referring to the whole abdominal area.  Do be sure that he is "on top of" lower GI motility issues, i.e., constipation.  Colace, Miralax if needed, tasty fiber cereal, prune juice (yuck), whatever works for him.  This can become a serious and painful issue if not managed properly.

Luckyp
Posts: 11
Joined: Feb 2018

similar to many here with double hit, I had one dose of r-chop before the test came back saying double hit. I had 5 rounds of Da-Epoch-r and managed it very well. Received remission after 4th round but still took 2 more rounds. i had this Nov 2015 through Mar 2016. I was 70 yrs old at the time. I have been in remission over 2 years and now only have scans every 6 months. Other than weakness in my legs and very slight numbness In 2 fingers I am doing great. The chemo was a little rough, especially having to be in the hospital, but so fortunate for this outcome. My double hit was stage 3. i was in such bad shape that when they put my port in as an outpatient they could not let me go home. I was admitted and they found 2 embolisms had formed so blood thinner was started immediately and chemo was started in 2 days. I noticed immediate relief as I had lost my ability to swallow. So grateful that I was able to tolerate the epoch r and had such good outcom. Hope you are all as fortunate

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

What is a double-hit?

Evarista
Posts: 242
Joined: May 2017

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...

ShadyGuy
Posts: 349
Joined: Jan 2017

it means the cellular DNA in the affected b lymphocytes is damaged in two locations, not just one. I am sure Po or Max can go into detail for you but in its simplest terms that is it.

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Thank you all. Treatment hitting a whole new level come Tuesday with R-CHOP. After all the posts and discussions...I will definitely keep our Lymphoma family posted on my progress for what it is worth.

Stay Strong...Fight hard.

God bless.

Aaron

tbone45
Posts: 8
Joined: Mar 2018

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.

 

tbone45
Posts: 8
Joined: Mar 2018

We just had the mid treatment PET scan (after 4th treatment DA-EPOCH-R). My husband returns to hospital for 5th treatment tomorrow and we'll have the results from the scan maybe Tuesday. Trying to think positively and keep anxiety in check. He's been tolerating the dose increases pretty well except for some numbness in his fingers, the Dr. is backing off the Vincristine to prevent more nerve damage, hopefully it's not permanent. His main troubles now are headaches and a nasty fatigue and insomnia combination where he is soooo tired but still can't sleep. He has not lost any weight but has lost muscle tone. He's started doing the "chemo stairmaster" when he is in the hospital which entails going to the stairwell with his chemo pump and walking up and down the stairs,(as far as his tubing allows; 5 steps) as fast as he can for 10 minutes at a time a couple of times a day. He says he's not in "denial" of this cancer but  in full on DEFIANCE of it.

tbone45
Posts: 8
Joined: Mar 2018

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.

 

Scubamom for two's picture
Scubamom for two
Posts: 15
Joined: Apr 2018

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

tbone45
Posts: 8
Joined: Mar 2018

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. 

Luckyp
Posts: 11
Joined: Feb 2018

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

tbone45
Posts: 8
Joined: Mar 2018

Luckyp < did you do radiation after your 6 cycles of chemo?

Luckyp
Posts: 11
Joined: Feb 2018

no, my Dr did not mention radiation

May 1
Posts: 2
Joined: Jun 2018

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!

Evarista
Posts: 242
Joined: May 2017

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.

hshaari
Posts: 1
Joined: Jun 2018

Hi,

I am new in this group.

I was diagnosed with Follicular Lymphoma and treated wit R-CHOP in 2010 followed by 2 years on Rituximab maintainance.

After 7 years I relapsed. My Doctor started me on 2 Cyle of R-CHOP then followed by Bendamustine.

Just completed my 1ct cycle.

Has anyone out there experiencing this medication.

Appreciate if you can share your experience.

Cheers!

Luckyp
Posts: 11
Joined: Feb 2018

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

SonOfDHLBCL
Posts: 1
Joined: Feb 2019

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
Posts: 5
Joined: Feb 2019

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

Evarista
Posts: 242
Joined: May 2017

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
Posts: 8
Joined: Mar 2018

Hello everyone, I haven't posted in a while. My husband has been in remission since July 2018, his first 6 month scan was in November and was clear.We have been doing alright, adjusting to the new normal. The main challenges for him are continued fatigue and chemo brain, it's a lot harder to do his job but he keeps chugging along. His LDCBL was stage 2E and the tumors were localized in his lower right quadrant. A couple of weeks ago he noticed a pea sized lump in his neck, he had swollen glands we were thinking maybe he's just fighting off some bug that's going around, the lump went away and the swelling has gone down . He has his regular scheduled blood draw and appointment with his oncologist tomorrow and has not been able to sleep for the last few nights. We also got some sad news over the weekend that a good friend who'd been through multiple relapses and rounds of treatment passed away. This guy was my husband's inspiration for his incredibly positive attitude. I am a freaking wreck. I can tell he's worried. When we completed treatment the oncologist said if it comes back, it's most likely to happen in the first 2 years and if it comes back, it's automatically considered stage 4....when we met 17 years ago I was a widow and when we got married we had a deal: he is supposed to out live me. He is not allowed to break our deal....

dewdrs
Posts: 5
Joined: Feb 2019

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
Posts: 8
Joined: Mar 2018

dewdrs,

Thanks for the reply, coping with the fear of relapse ,that really is the question isn't it? Our experience seems to have left us hyper vigilant. Today the doc said his numbers look good (from the blood work) and he did not feel anything in my husband's neck that was cause for concern, that it was just an immune response to fighting off a cold (which is what we'd hoped it was). I really feel for your wife and her not wanting to be looking over her shoulder, waiting for the other shoe to drop. I have no idea what ASCT is and have not read up on CAR-T and maybe I won't until it and if it becomes nescessary.... new projects and new plans, I think you have the right idea. I started taking fiddle lessons again to goad me into focusing my practise and learning new tunes, my husband throws himself into work (at a job he loves) Anxiety comes in waves, we are learning to take it as comes and keep on keeping on.

 

dewdrs
Posts: 5
Joined: Feb 2019

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

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