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DLBC NHL, ABC type, 35% double hit

jbutler76
Posts: 7
Joined: Jun 2016

Hi Everyone, my mom has been diagnosed with stage 4 DLBC NHL ABC type (and 35% double hit expression). Her Dr started her on R-CHOP, but unfortunatley she wasn't responding like she should have been. She is in severe pain all the time which is sometimes adequately managed with morphine, hydrocodone, and a fentanyl pain patch. She has several masses (the one on the spine is gone), large spleen with heavy disease, with no bone marrow involvment. She had two rounds of R-CHOP then switched to R-EPOCH (just finished the first round of it) after the PET scan revealed she wasn't responding properly. I know the ABC type has a poor prognosis, but we are still hoping and praying she will reach remission, but with the setbacks and it took FOREVER to get diagnosed and treatment started, it's so easy to lose faith. It is very difficult to watch her suffer like this. It's hard to find others in forums with this type. Do any of you have experience with this or know someone? 

po18guy's picture
po18guy
Posts: 1223
Joined: Nov 2011

Is your mom being treated at a National Cancer Institute designated cancer center? If so, great! They have the best and brightest and offer clinical trials which can provide more hope. If not, a second opinion at such a center can make a huge difference. Such a second opinion saved my life more than once. The other option is to search for currently open clinical trials for DLBCL/ABC sub-type. Even traveling to a center which offers one may make perfect sense. 

jbutler76
Posts: 7
Joined: Jun 2016

She is being treated at Tulane in New Orleans. She is seeing an oncologist specializing in lymphoma. He said there are trials available and that will be the next step. She was less than one week away from next treatment, so I think he wanted to stay on track with that... switching her to the R-EPOCH.

Max Former Hodg...
Posts: 3699
Joined: May 2012

Tulane is one of the best, and it is great that her oncologist is a lymphoma specialist.

R-EPOCH is not a lot different from R-CHOP  (EPOCH adds Toposar and Cycophosphide to the drugs that are in CHOP, but deletes the Cytoxan).  But even one drug shift can make the difference in moving toward remission. Note: R-EPOCH is often administered to patients as inpatients, in a hospital setting, but from what you write is sounds like she is possibly already in the hospital.

My next door neighbor did six months of R-EPOCH for some form of NHL, not sure what strain, but it was aggressive.  The regimine was HARSH. He was a big guy, about 40 years old at the time. His routine was to spend four days in the hospital, and go home for a week or around 10 days. He became unable to walk, had to be carried to the car by his room-mate. Went from around 300 pounds to about 150.  But he fully recovered, and has been cancer free for seven years now. His experience was probably worse than most on R-EPOCH. A year later, I came down with Stage III Hodgkins. Three years later we moved a few miles, and my new next-door neighbor came down with Stage IV NHL.  All three of us are fine today.

I hope the R-EPOCH or the trial get her to full remission soon,

max

http://chemocare.com/chemotherapy/acronyms/default.aspx

jbutler76
Posts: 7
Joined: Jun 2016

Thank you for the encouragement, Max Former. We are really hoping the R-EPOCH will take care of it, but we are prepared to take her wherever we need to to get her well. It's just horrible to watch someone I love to suffer so much. It's been a difficult road for her, but I guess they don't call it a "battle" for nothing. 

Max Former Hodg...
Posts: 3699
Joined: May 2012

As General Sherman noted, "War is hell."   I had a different disease and used differing drugs, but at 53 years old then, I was sleeping 15 to 17 hours a day, and could not do much. Lost my sense of taste, all appetite, hands and feet went totally numb, my memory got burnt out, etc.  I had breathing difficulties. My nails turned black, and my eyes watered severely at times; the doc said a drug had inflammed the tear ducts. I felt like I had the flu for about five months, a syndrom common on chemo called "Flu-like Syndrom."  (Patients with FLS do not have the flu, or a cold, or any form of infection, just severe muscle pain and a hot, flushed feeling.)  A also had to take narcotics my whole treatment time: Loritab.

But I would start it again today if necessary. Like my neighbor, this ordeal got me lymphoma-free, for six years now.

Margiein tucson
Posts: 11
Joined: Jun 2016

I thought DA-EPOCH was for double hit lymphoma . Is it used also for non DHL?

Max Former Hodg...
Posts: 3699
Joined: May 2012

I was reading a review of treatments for the ABC substrain a minute ago, and it stated that some studies found improved outcomes with the use of Bortezomib (Velcade), and Lenalidomide (Revlimid).  As best I could tell, they are mostly used against relapsed Mantle Cell.   I would at least ask your oncologist about them.

max

jbutler76
Posts: 7
Joined: Jun 2016

Her Dr did tell me that Bortezomib has shown promising results in ABC type, but it isn't FDA approved for that so she would have to get on a trial. He said something about having to go to Washington DC for it, though (maybe at least get on the trial and then get treated in New Orleans... I'm not really sure how all of that works). I'm going to press him further about that. 

po18guy's picture
po18guy
Posts: 1223
Joined: Nov 2011

I do not know of its effectiveness against the ABC subtype, but I received a new regimen last year that was aimed at difficult B-Cell Lymphomas. Miraculously, it eradicated two relapsed, heavily pre-treated T-Cell Lymphomas in only two cycles. It is intended as a replacement for ICE. It is called TREC and consists of:

1. Treanda (Bendamustine)

2. Rituxan

3. Etoposide

4. Carboplatin

It is given on an out-patient basis, so no hospital stay. It is worth mentioning. 

Second, on another forum, a member there with DLBCL-ABC subtype is receiving a good response from Revlimid-Rituxan. http://www.cancerforums.net/threads/48263-Use-of-Revlimid-for-DLBCL-ABC-sub-type

I hope that this helps. 

1 day at a time
Posts: 9
Joined: Jun 2015

I just now saw this post, as originally the email that alerted me you'd sent a message to me only took me to that 1 message. So now that I explored further and found this post I see the answers to the questions I'd asked you about your mom. Sorry to hear that she has been experiencing a lot of pain. I'm sure it is brutal to watch your loved one suffer like that. I sure hope that they are perfecting the meds, and hopefully the pain will lessen as tumors shrink. Hopefully the switch to r-EPOCH will be more effective. All the best, hang in there.

mken03
Posts: 4
Joined: May 2016

I am completing the 5th of 6 treatments today.  The first 5 day series was delivered in the hospital but since then I have been doing it at home.  They send me home with a pump and chemo medicine which goes 24 hours.  We go back for a refill each day.  That is followed by Neulasta the following Monday and Tuesday/Friday blood draws.  The dosage is adjusted based on the last blood draw result before starting again two weeks later. 

I had good results after the first two treatments proven by a scan.  My side effects have been reasonable.  Not as difficult as some I have seen on the board.  

I wish you the best.  Please let me know if you have questions about side effects etc....

 

Margiein tucson
Posts: 11
Joined: Jun 2016

Father with NHL stage 4. Age 79. NO comorbidities. 

3 Rchops . His LDH was 500 on diagnosis, then 151 after RCHOP #1 but is steadily rising . Last LDH was 320. The doc does not seem overly concerned . Anybody have an explanation ? We are seeing lymphoma specialist this week for second opinion . Thank you . 

jbutler76
Posts: 7
Joined: Jun 2016

Thank you all for responding. My mom just finished up her 2nd R-EPOCH yesterday. She seems to handle the 5 days of constant infusion in the hospital pretty well, but now the side effects are beginning to really increase. She's very tired, nauseous, and has a little fever. Last time she had some diarrhea, but not this time... yet. She will have a PET scan in about a week to find out if this regimen is working. 

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