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

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!!

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Comments

  • ggraphix
    ggraphix Member Posts: 4
    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!

  • triplehit
    triplehit Member Posts: 1
    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!

    Triple Hit Lg B Cell Non Hodgkins Lymphoma

    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
    Garden Member Posts: 1
    High-Grade Large B cell Non Hodgkins Lymphoma

    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
    Semone12 Member Posts: 2
    edited August 2017 #5
    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.

  • Nicholas25
    Nicholas25 Member Posts: 7
    R-Epoch

    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
    po18guy Member Posts: 1,261 Member
    edited August 2017 #7
    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 response is full response

    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.

  • po18guy
    po18guy Member Posts: 1,261 Member

    R-Epoch

    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?

    Side effects are cumulative and variable

    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.

  • Cocamoxb
    Cocamoxb Member Posts: 7
    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.

    I increased from 1-4 and

    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. 

  • alylima
    alylima Member Posts: 1
    edited November 2017 #10
    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.

     

     

  • Evarista
    Evarista Member Posts: 325 Member
    edited November 2017 #11
    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.

     

     

    You can do this!

    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
    samiz Member Posts: 1
    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.

     

  • PBL
    PBL Member Posts: 333 Member
    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.

     

    Vincristine...

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    PBL said:

    Vincristine...

    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

    Neuropathy

    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
    tbone45 Member Posts: 8
    edited March 2018 #15
    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. 

  • Luckyp
    Luckyp Member Posts: 11
    Double hit lymphoma and r epoch

    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

  • Evarista
    Evarista Member Posts: 325 Member
    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. 

    Yes

    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
    Evarista Member Posts: 325 Member
    edited March 2018 #18
    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 vs. lower GI

    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.

  • AaronW
    AaronW Member Posts: 45
    Double-hit

    What is a double-hit?

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    edited March 2018 #20
    Simply put ....

    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.

  • Evarista
    Evarista Member Posts: 325 Member
    AaronW said:

    Double-hit

    What is a double-hit?

    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...