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ericedwards
Posts: 2
Joined: Mar 2013

Hi all,

My name is Eric Edwards, 55 years old, male, located near Albany, NY, and first and foremost I'd like to thank all of you for your timely and supportive posts.  I'm also bipolar, suffer from major depressive disorder, controlled hypertension, high cholesterol, borderline but not diabetic, GERD, and am a recovering alcoholic (4 years next month); I fully understand the necessity of support and hope to contribute to as well as benefit from this discussion board.  

About mid-December of last year I noticed a mass on the left side of my neck which was increasing in size.  When I first saw my primary care physician about it on January 3, it was approximately the size of a deviled egg.  I'd been thinking that it was just a swollen gland like I'd had as a kid with a sore throat, so although my doc mentioned the possibility of a CT scan and a biopsy, we decided to spare the healthcare system and start with an anitbiotic.  By the following Monday there was no improvement, so I had a CT scan on Friday the 11th.  I was given the results by another doctor in the practice I visit on Monday, and very quickly (I thought) I was having a consult with a surgeon for a biopsy on Thursday.  The following  Monday I was admitted to Albany Medical Center, had the biopsy, met who was to become my oncologist/hemotologist (with New York Oncology Hemotology, NYOH), was given a MUGI scan and was released on Wednesday, Jan. 16, being informed that the biopsy results would take a week to ten days.  I had my first consult at NYOH the next Monday; the biopsy results had been completed and I was diagnosed with a Stage III highly advanced, highly aggressive DLBCL.  The initial treatment plan was for eight courses of chemo with a 4-6 day hospitalization with each.  That week brought blood work, a PET scan, a bone marrow biopsy, and another hospitalization to place a port and receive my first chemo treatment.  The following week's appointments included a Neulasta injection, blood work, and another visit with Dr. Brake, my oncologist.  With the PET scan results, I was told that my treatment would be only six courses of chemo, done on an outpatient basis, and that the lymphoma was not as aggressive as originally thought.  To this point, my thoughts and emotions had been a rollercoaster (to say nothing of my poor wife Lori), and I had experienced and appreciated a sense of urgency not previously demonstrated by my experience with the medical profession.  Dr. Brake told me that I had tested negative for the CD20 cell marker, disallowing Rituximab (the "R" of "R-CHOP"); the CD20 marker differentiates between B and T cells, generally allowing Rituximab to target only B cells.  Dr. Brake didn't seem overly concerned.

On February 8, my wife Lori and I traveled to Boston for a consult/second opinion with Dr. Arnold Freedman at the Dana-Farber Cancer Institute. I was impressed with the facility but unimpressed that the biopsy pathology had not arrived ahead of time, and Dr. Freedman wasn't able to discuss my specific case without benefit of a second analysis of the pathology.  He was more concerned with the absence of the CD20 marker, but didn't then know if the test had produced a false negative.  He mentioned the possibility that my case could involve plasmablastic lymphoma, which he said was extremely rare.  He has since reported that all of the results of pathology done by NYOH were accurate, and that the result of the CD20 analysis is a true negative.  I'll find out from Dr. Brake this coming Wednesday whether or not what I have is plasmablastic lymohoma.

I'm wondering if anyone is familiar with this strain of DLBCL.  What I've found online is that it is, in fact, extremely rare as presented in my case.  Generally, it is most common in those who are HIV positive (I had myself tested this week and am HIV negative).  More common, too, is that it presents with oral cavity involvement which, so far, it hasn't in my specific case (although Dr. Brake has been visually checking).  Not even a mouth sore of any type.  From what few statistics I've found, the prognosis is poor, but even worse for those who are HIV negative.  Although I've been surprisingly good with all of this, I could use some encouraging news.

Thanks to all in advance, and I look forward to becoming an active member of this discussion board.

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Eric,

Welcome to the group, I don't have the same type of NHL as you but I think we can all relate to the things that you're going through. This past year I was also told that I had diabetes, high Cholesterol along with other Illnesses. I'm trying to live a healthier lifestyle by walking for an hour and not eating meat but it is extremely hard. Others will chime in soon that are more knowledgable about your special circumstance, take care and please keep us updated.

Sincerely,

Liz

Anonymous user (not verified)

I know nothing of your particular type of cancer and I am afraid I have nothing to offer but my good wishes and a welcome. Have you used the search function at the top of the forum page to search for someone who may have mentioned your very rare condition in a post?

ericedwards
Posts: 2
Joined: Mar 2013

Thanks Liz and GKH.  I did the search and found a couple of threads, but nothing pertinent.  I'll certainly keep checking here for any info.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Eric,

 I'm in the same boat as the others as far as knowing anything in regards to your type of cancer. I would suggest asking your doctor if he has literature or books you could borrow. I hope someone in the CSN membership will see your post and help you out. Keep checking back, as many times it can a week or better for everyone to check the group messages...some don't check in for months at a time. Take care, and my prayers are with you. Best wishes Sue

(Follicular NHL-grd2-stg3-typA-Dx 6/10-age62)

Dallascheer6
Posts: 3
Joined: Dec 2014

Hello! My name is Lauren, I was diagnosed with Plasmablastic Lymphoma in my sinus when I was 20 years old. It is very rare and yes, normally in HIV positive males (which I am neither). I am the fourth person that I know of that (only three HIV negative people who had it starting in their maxillary sinus ever in scientific literature). Of the three people before me only one is alive, so naturally I am very curious as to whether or not you were diagnosed with Plasmalastic or a different kind of cancer. 

GPa Jeff
Posts: 1
Joined: Sep 2017

Greetings

I haave just been diagnosed with PBL.  The NCCN treatments are CODOX-M/ivac, DA-Epoch and Hyper CVAD.  All are extreme at beter.  Can anyone post there experience with any of these three?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2562
Joined: May 2012

A big welcome to you Jeff.

The thread you posted in has been dormant (unused) for about two years now.  Start your own thread by going to the first page here at Lymphoma, and there is a click for "Beginning New Forum Topic," or some similiar name.  It's free and will allow easier focus on you and your questions.

All of the regimens you list are fairly common against various forms of (usually aggressive) NHLs or Leukemia (numerous drugs are used against both Lymphoma and its sister disease, Leukemia).  And all are tough. All are usually given (at least parts) in an inpatient environment.   DA R-EPOCH is  probably the most commonly employed of the three agaist NHL.  Several writers here have used them and no doubt will share soon.  My former neighbor did 6 months of R-EPOCH about 10 years ago against an aggressive Large-B NHL, and achieved complete remission (and is still in complete remission). "DA" just means "Dose Adjusted" -- the doctor adjusts dosage up or down as necessary.  R-EPOCH is usually administered as an inpatient, but some here have received it (at least some of their infusions) in an outpatient setting.  (R-EPOCH is simply R-CHOP with Etoposide added.)  The CODOX***** is commonly used with various autoimmune deficiencies and comorbities. Choosing treatment will demand that you have the best doctors available for advising. 

I am including a link to chemo information run by the Cleveland Clinic.  You can read about each of the combinations, and each drug in detail there,

max

http://chemocare.com/chemotherapy/drug-info/default.aspx#.UwXxITAo670

The following is a handy listing of all of the common chemo groups employeed against most HL and NHL strains:

https://www.nhlcyberfamily.org/treatments/regimens.htm

 

.

po18guy's picture
po18guy
Posts: 650
Joined: Nov 2011

Such a rare disease needs the attention of an advanced hematologist. Those are normally located at National Cancer Institute designated comprehensive cancer centers. Based on continuing research, there may be more effective and less toxic treatments. I can tell you only about the following drugs:

Hydroxydaunorubicin

Prednisone

Etoposide

Vincristine

Cyclofosfamide

Gemcitabine

Navelbine

Pegylated Liposomal Doxorubicin

Romidepsin

Pralatrexate

Belinsostat

Alisertib

Bendamustine

Carboplatin

Mesna

Fludarabine

Four of those drugs I have received at least twice. I received as much of each as my body would tolerate, which includes 3X-10X normal dosing of the Mensa, Cyclofosfamide and Fludarabine as conditioning for a transplant. As ominous as it all sounds, it is all survivable. Nevertheless, please consult with someone at an NCI designated cancer center. It is worth every penny, and every mile of travel. 

My prognosis was poor in 2008, dropped to "extremely poor" in 2009 and has dropped below that at least three times since. Never mind the potentially fatal conditions which I picked up along the way. There is not a word in the English language to describe the utter unlikelihood of my being alive today. About 1% is the mathematical chance. 

There is always hope. Do not give up. 

Evarista
Posts: 67
Joined: May 2017

Hi Jeff.  Sorry to hear about your diagnosis.  As noted, each person's experience will be different, but I am happy to share mine (DA-R-EPOCH for DLBCL).  RE the recommendation that you find a Heme-Onc doctor: I concur. If you do not have an NCI designated cancer institute in your area, oft times your case can me "managed" by a specialist at an NCI center, while you get your actual treatment at your own local hospital.  I know several people who have done this with MD Anderson and Memorial Sloan Kettering Cancer Center.

I think about my experience as having two parts: 1) the treatment and 2) the effects of treatment.  I also think it's helpful to stay aware of things that you have some control over and to do everything you can to control what you can so that things go easier.  

So, DA-R-EPOCH:  1) I found the treatment itself tolerable.  Six cycles, each 5 - 6 days, in hospital with continuous I.V. chemo. Cycles repeated every 21 days. Boring. Some nausea that was easily controlled with meds. Some people have trouble with the Rituxan, but I did not. The spinal tap/intrathecal methotrexate included in the regimen was hard for me (done in 4/6 cycles). But strong headache med and hydrocortisone co-injection took care of that problem. Predinsone gave me considerable sleeplessness during the cycles, but resolved once home. 

During chemo that includes Vincristine, constipation is a huge issue for many.  You will see this mentioned a lot on this forum.  Constipation is one of the things that you can help yourself with and doing so will ease what can be an enormouse amount of distress.  My drill (after the first horrible cycle, when I was unaware of this problem) was to start stool softeners 2 days before a chemo cycle and continue them until at least 2 days after the cycle (doctor's permission of course).  I also brought my own fiber cereal to the hospital for breakfrast.  Be sure to drink water, even though you are getting lots of fluids I.V.

2) Effects/after effects/side effects:  there are 3 that people seem to consistently have trouble with.  Constipation (above), fatigue, and neuropathy. Fatigue will happen, but you can help yourself by doing everything you can to stay strong.  If you can get out of bed, get out of bed, even if it's just to sit in a chair.  If you can walk, even needing assistance, walk.  If you have an exercise routine, try to stay with it for as much as you can for as long as you can. Take advantage of the Physical and Occupational Therapists that will visit you in-hospital and accept at-home PT if it prescribed for you. I lost strength early, but got some of it back as I went along.  I could not walk unassisted after my first cycle (but I was in bone marrow failure, so pretty bad shape). I got back to a mile/day by Cycle 3 but by Cycle 6, I was walking much less well.  I'm now 15 weeks out and doing 1.5+ miles twice a day (68 yo F).  Not where I was before I got sick, but so much better than where I was before chemo. One home activity that I found helpful was jigsaw puzzles: To work on them, I had to get off the couch.  I had to move around the table, stand up, etc.  They helped with the boredom and were something to do when migraines got in the way of TV & reading. Like many people, I lost appetite for quite a while, but eating as healthy is important.  ENSURE daily for a long, long time.

Neuropathy: this is another Vincristine related side effect.  Hopefully you won't get it or won't get much.  I got numb hands and feet, but they are steadily better.  Hands almost normal and feet only problematic when I'm tired.

Many other small things that may or may not affect you.  You might want to go ahead and start a new thread, as I have not seen Plasmablastic lymphoma discussed much and you are kind of buried here.  Best of luck to you.

NANCYL1
Posts: 289
Joined: Jun 2012

Eric:

I don't have the answer.  Have you tried checking with MEMORIAL SLOAN-KETTERING CANCER CENTER in New York City?

 MSKCC.org

 

NANCY

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2562
Joined: May 2012

Eric,

There are many strange, even unique, variants among all types of cancer. What doctors ordinarily end up doing in these cases is treating it as if it were the next-closest, common strain. Accordingly, I would not be surprised if they did not end up giving you the routine protocol for DBLCL, whether that be CHOP, EPOCH, or whatever.

If you read the perscribing information on any chemo drug, it will list the most common diseases it is perscribed against, but will then state than an MD can perscribe it against pretty much anything he thinks it should be effective against. Your oncology team may be scratching their heads at the moment, determining what to treat you with. But, in the absence of clinical trials, it is an educated guess. A doctor should be totally up front with any patient regarding this, and let the patient have imput into the ultimate choice.

My own strain of HL is so odd (it lacks the defining cells found in HL) that over the decades diagnostic charts have at times even considered it a form of NHL, but today it is mostly classified as an atypical HL. And it has been treated by some with standard--fare NHL drugs, and by others with standard-fare HL drugs (there is tremendous overlap among these drugs, anyway).

You are doing the right thing by speaking with several different authorities at different centers. Please share what they decide to treat you with.

You may find the following link helpful. It discusses every FDA-approved chemotherapy drug used in the US. Note the heading "Chemotherapy Acronyms" also, since it lists most of the drug combinations (CHOP, EPOCH, ABVD, etc.).

http://chemocare.com/chemotherapy/drug-info/default.aspx

Again, having rare cancer is not rare,

max

 

.

givingrace's picture
givingrace
Posts: 148
Joined: Nov 2012

Hi Eric, 

I haven't got any answers eather but my thoughts and prayers are with you and your family. Keep strong and know this forum is here for you .

By the way Bill W. has been my friend sence 1996.keep up the good work. All of "that" will help carry you threw to healing.

Sincerely, 

~GG~

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