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Diffuse large B-cell follicular lymphoma

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

I was diagnosed with diffuse large B-cell Non-Hodgkin's Lymphoma in July 2012. The sub-class is a rare but aggressive "double-hit" translocation, as a result of two concurrent mutations: BCL2 & c-MYC. Consequently, the tumor was doubling in area every two weeks.

I started treatment in August 2012. My regimen consists of Rituxan (R) on Day 0. The next four days consists of 4 x 24-hour bags of Etoposide (E), Vincristine [a.k.a. Oncovin (O)], and Doxorubicin [a.k.a. Hydroxyldaunorubicin (H)]. On Day 5, I receive a cytoxan called Cyclophosphamide (C). I take prophylactic drugs, mostly anti-fungal, anti-viral and antibacterial. I also take Prednisone (P), a steroid as part of EPOCH regimen. R-EPOCH regimen (Day 0 - 5) is every three weeks, intended to be undergone for 6 to 8 cycles.

I finished the 5th cycle the week before Thanksgiving. I had gone through my first three cycles without hitting the "nadir" (becoming neutropenic). Dose-adjusted EPOCH is flexible in that the dosage changes based on how the patient responds to treatment. Since I didn't hit the nadir, my high dosage was increased by 20% in rounds 2, 3 and 4. By cycle 4, my dosage was 75% higher than in round 1. Because the dosages were increasing, another drug called Mesna was added to counteract the corrosive effects on the bladder and kidneys, from the cytoxan given in Day 5. After cycle 4, I became neutropenic and had a nasty case of oral mucositis. As a result, cycle 5 was delayed a week and my dosage was reduced by 10%.

I have a big decision to make in the next week or so: Do I complete the 8 cycles of R-EPOCH and call it a day, or do I stop at 6 cycles and move forward with the conditioning, treatment and procedure for the stem cell transplant. My biggest concern is the long-term effect of aggregate high dosage chemo; the risks increase with the stem cell transplant. For example, exposure to high-dosage chemo increases the risk of myelodysplastic syndrome (MDS). This is when the bone marrow no longer produces healthy red and white blood cells.

I am a relatively healthy and active male in my mid 40's. I would jog frequently and do other exercises for fitness. I cannot jog now (for risk of passing out), but I do walk a mile or so if it's a nice day and I'm feeling up to it. And I do modified exercises at home to stay in shape. I try to eat and drink nutrient-rich food (although I have my dietary vices when it comes to sweets like ice cream and chocolate).

I have a double-lumen PICC line in my right arm; it doesn't dissuade me from using it to do some basic lifting or isometrics (I don't go overboard). The key is to stay active--physically, mentally, and spiritually--whenever I can. There are bad days, where all I can do is stay home and rest. That's fine. Like everything in life, it's a balance.

To those going through similar treatment, my recommendation is to find the balance that works for you and stay positive! Feedback and suggestions from others in the CSN are most welcome! Thank you and my very best wishes to you all!

JP

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi JP, It was my understanding that stem cell is a option for relapse, at least it was in my case. Although, I was on the eight cycles of R-CHOP. Sometimes it may be worth a second opinion. Good luck on what ever course you take..... Vinny

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

Hi JP,

Thanks for your post. I agree with Vinny. I went through
the same treatment as you (R-EPOCH, 6 cycles) and was told we would
consider stem cell transplant if there is a recurrence.

Thankfully, I have been in remission now for a year. I agree
that you might want to get a second opinion.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Thanks Vinny! Thanks, Jim! I appreciate your input and good wishes.

Before starting R-EPOCH in August I went for a second opinion at MSKCC in NYC (I live in NJ). The Lymphoma Specialist at MSKCC agreed with the regimen my oncologist recommended, but he felt it was necessary to do the stem cell transplant in addition to 6 cycles of R-EPOCH.

I scheduled an appointment with lymphoma specialist and director, Dr Andre Goy, at John Theurer Cancer Center for mid-Dec. I'm also trying to get an appointment to see Dr. Morton Coleman at Presbyterian/Cornell in NY.

I'm not inclined to do the stem cell transplant, but I'm willing to listen to other expert opinions, esp. given the rare aggressive "double hit" form of this NHL.

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

Hi JP,

Thanks for your post and I think getting the other opinions is a good idea.
Hang in there!

Jim

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Would like to provide an update on my progress with DHL. I completed the seventh cycle of high-dose chemo therapy, and my first round of R-IVAC (previous six cycles were DA R-EPOCH). I opted to forgo SCT, despite the strong recommendation from MSKCC, and went with a more aggressive form of 5-day inpatient regimen, in which I received more than twice as much chemo from once cycle of R-IVAC than I received in six cycle of R-EPOCH combined. The doctors say you can't compare them quantitatively...the heck I can't. They're not the ones getting 36 grams of toxins pumped into their bodies in 5 days.

I'm feeling okay even though I've been severely neutropenic & thrombocytopenic for 4 days & counting (Jan 14 - Jan 17). My ANC has been at 0.0 since Mon & my platelets were at 9 & dropping (normal range is 150-400) on Mon. I had my first transfusion of platelets on Tue, and it's up to 32 (still very low). I'm on Day 8 of the neupogen injections. I get another CBC today (Jan 18) & hope that my ANC & platelets go up. The hospital I'm going to is flooded with flu patients. Influenza outbreak + very low WBC is a bad combo, but I'm still holding on! :-)

JP

-DX: "Double-Hit" NHL | High Grade, Bulky Stage II
Translocations: BCL2 (common with DLBCL) & c-MYC (common with BL)
-Treatment: DA R-EPOCH & CNS Prophylaxis, Aug - Dec 2012 (6 cycles) + R-IVAC starting in Jan 2013

coachmike
Posts: 147
Joined: Oct 2011

JP

I dont have to tell you this because you already know, but please please take careful health measures when going in the hospital. Lots of sanitizing, masks, and hand washing blah blah blah. Anyways I had DLBCL and did R EPOCH. Did 4 rounds of that then was switched to HYPER C VAD did four round of that and was 99 percent in remission. So I chose to do the SCT it was auto. Did three rounds of RICE to prep for the transplant then ultimately did the BEAM treatment. Six moths later im in remission and I have this same prayer for you. I also hope and pray that your counts will come back showing improvement and increase. Please keep us posted.

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

Hi JP and thanks for the update.  Do be extra cautious and protect yourself.  Hope you get good news today and that your counts are up!  Hang in there and know you have friends here.

Huigs and posiive thoughts coming your way,

Jim

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

JP,

 

Hope that your counts are up today.  And as others have said please do the mask thing, hand sanitizer, etc. I've been REALLY careful (my WBC is still lowish following chemo that ended in october) and I still got sick!!  Wish that your hospital had a special door for you to go in or something to stay away from the germy folks!

I love it that you try to walk or work out a bit when you can.  I always do the same and I think it really does help.  Not only physically but mentally and spiritually as well.

We're with you!  Keep us posted on your progress on this crazy journey. :) 

Donna

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

JP,

When  I went for an iron infusion today, I met a volunteer there who had your disease, or at least close: He said it was "B-cell follicular NHL." I do not recall if he meitioned "large B." He was about 57 at diagnosis, and had late Stage 4, with bone marrow involvement. He also mentioned that his nodes were affected "all over." He said his first month of chemo did not help, and he was moved to a clinical trial, and went on two combinations, much as you have done. They were not your two, however. He has been in C. R. for several years now, and looks great.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Donna,

I sold my canoe this week. I could not use it for over a year. It was a heavy beast, and not easy to paddle. I normally looked like I was dying when we got back to the pier (I know from photos taken of me.)

I do hope to get a very light kayak and return to lake fising next year, however. It looks like fun, rather than work, which is what a large canoe is.

max

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Max,

Kayaking is my favorite activity.  You can push yourself and get a great workout or.... drift along and relax. I feel like I'm sitting in a  recliner when I'm in my kayak.  I have a Loon 111.  It's a great boat -has a large open area and can be used for fishing (or having your dog sit in it with you) but weighs about 50 lbs.  There are several nice ones that are easier to manuver.  Old Town is a good reliable brand though...   Good luck!  Hope you get to check it out.

Donna

 

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

I know that Old Towne is a premium brand. Confluence is a realitively new canoe and kayak maker, started by a woman. They have got an excellent reputation already. Their facilities are about 50 miles from my house. I might look at their stuff.

max

catlinwade
Posts: 8
Joined: May 2011

I was diagnosed in 2011 with double-hit lymphoma (multiple trans locations). Had 6 rounds of REPOCH, a stem cell transplant(autologous) and 20 rounds of radiation. I have also have had colo-rectal cancer (surgical removal) and a very invasive squamous cell cancer (surgery and chemo). As of today I am clear and quite healthy. I exercise daily, do yoga 3 times a week, garden and am generally very active. Hope this inspires folks to "keep on, keeping on" . I am 70 years old. Every day is precious don't waste it!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Catlin,

I replied to this post of yours last week. It was quite innocoulous, pertaining to JP.   It was there for a while, and then disappeared.   Sorry the Great Oz has seen fit to remove the relevant information for no reason that I can fathom.  I used to operate near the Soviet lines in the Cold War.   Very similiar sort of people .

max

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