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Looking for treatment insight

Don2088
Posts: 16
Joined: Aug 2015

I am a 44 year old male and have been diagnosed with Hodgkins Lymphoma. Nodular Lymphcite Predominant Hodkins Lymphoma to be precise. In Feb 2014 I had an ultrasound for a possible appeniciitis that turned out to be a pulled muscle. There was a small abnormaity in my abdomen noted on the results. My doctor assured me it was probably nothing, but I should have a CT in 6-months. Thinking it was nothing I let it go until June 2015. The abnormality grew from 2 cm to 3 cm. Within a week of the CT I was in surgery for a biopsy. During the surgery they removed what turned out to be a lymph node. They also did a small bowel resection to remove a portion of the intesitne that appeared to be affected by the lymph node. The surgery went fine and I was home in 3 days. The lymph node tested positve for NLPHL. The bone marrow biopsy came back normal. The PET scan however showed  nodes in my chest and  in my abdomen as hot and presumed to be NPLHL positive. All the nodes are of normal size but they did show positive during the PET scan. My oncologist recommened 6 cycles of ABVD combined with Rituxan. My second opinion oncologist at an urban university hospital said the recurrence of NPLHL is high. Consequently they recommended 6 cycles of R-CHOP. They said this would be better in case I needed future treatments. They also said they took this to conference and 5 other lymphoma specialisets concurred that this would be the best treatment. Overwhelmed, I asked my second opinion oncologist to consult with the first oncologist in an effort to keep my treatments locally. I followed up with the first oncologist and he changed his recommenation to try the Rituxan alone first. He said after consulting with the second opinion oncologist and taking into account my lack of symptoms and the high recurrance rate, he wanted to try 4 weeks of Rituxin, followed by a scan 4 weeks after that. I am torn between the competing opinions. Given the indolent nature of the disease I am inclined to try the Rituxin first. The other half of me wants to go right to the R-Chop and hit hard from the start. Any insight anyone has on my situation would be appreciated.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Don,

Welcome.  NLPHL is rare, accounting for less than 1% of all new lymphoma cases annually (it constitutes around 5% of all new HL cases, but HL is much less common than NHL, around 65% vs 35%).   NLPHL is what I was diagnosed with in 2009, at a late Stage 3A disease.  Huge nodes from the neck down to the pelvic area, and across both sides.  NLPHL often "daisy chains", and I had strands wrapped around the superior vena cava, as well as all around mny escophagus.  I had cardiac pain from numerous huge nodes pressing against my heart. My biopsy tumor, taken from the left armpit, was the size of a golf ball.

There are five routine forms of HL, with NLPHL by far the rarest.  Its pathology is quite different from the other HLs (because it presents some cell types that are more commonly related to NHL), and does not present some of the defining cells that are ordinarily found in HL.  In fact, NLPHL has gone back-and-forth over the decades, and at times has been (in most circles) regarded as a form of NHL.  Currently, it is mostly regarded as a sub-form of HL in most Western nations.

Because of its odd-ball nature, treatments have also varied.  The most common current treatment is R-ABVD, which is what I received, and is what every NLPHL writer here that I can recall has received. No doubt, some one out there did indeed receive R-CHOP, which is mostly used for NHL.  Back in the 60s and early 70s, the MOPP combination was the standard treatment.  Recent NLPHL patients here besides myself have been Bill_NC, Aaron, and Paul. 

NLPHL is indeed two things that you mentioned: (1) Indolent, meaning of course relatively non-aggessive and slow-growing, and (2) given to relapse, with ten year relapses estimated at between 10% to 15%.  Of course, this also means that there is an 85% to 90% liklihood that any given individual will not relapse.  In the world of cancer generally, lymphoma is one of the safest things a person can have, which is not to minimize its deadly nature and how much suffering it causes.   But, for comparison, some brain tumors have 1% to 5% five year survival rates.... Late stage lung cancer and pancreatic cancers also have profoundly poor survival rates.

NLPHL's indolent nature means that it is easily put into complete remission, or what is now often alled NED --"no evidence of disease," that is, imaging can't detect any cancer.  Most healthy patients as young as you nearly always achieve full remission in first-line therapy.

All of the respondents here are laypeople; we write of what we have learned through self-study and treatment.  I will say that I have never heard of R-CHOP being regarded as more forgiving years later than R-ABVD if relapse occures and salvage (also called "second-line") therapy is required; I have just never heard that before.  Indeed, R-ABVD and R-CHOP contain several of the same drugs anyway.  CHOP differs mostly in that it includes the steroid prednisone. ABVD does contain Bleomycin which CHOP does not, and Bleomycin can cause lung damage at times. But both ABVD and CHOP contain Adriamycin, and CHOP has Vincristine, which is virtually identical to the Vinblastine in ABVD.   

I have also never heard of a Rituxan-only treatment plan for NLPHL.   Rituxan is sometimes used by itself in treating some indolent NHLs, but as I said, I have never heard of this for NLPHL.  Rituxan mostly kills the CD-20 cancer cell, but NLPHL also manifests other cancerous cell types, so I would ask your oncologist how he expects to kill these other cells if using only Rituxan. Based on my limited, laymen's level of knowledge, I would not go a Rituxan-only route.  Just me.

Like your first doctor recommended, since I was late stage, I received six cycles of R-ABDV, which is 12 infusions over a six month period.  It kicked my ***, bad, but it is less rough for most patients than it was for me.  Late-stage lymphoma seldom inviolves any radiation therapy, but early stage, milder cases sometimes do.  I went straight into full remission, and have had no lymphoma scares since, six years later.  Every NLPHL writer here whom I mentioned also went straight into full remission on R-ABVD.  I have had prostate cancer since, which is wholly and entirely unrelated to lymphoma.

 

Good luck in making your decision. I hope this is of assistance. We are here for the additional questions you no doubt will have,

max

 

CHOP:  http://chemocare.com/chemotherapy/acronyms/chop-r.aspx

ABVD:  http://chemocare.com/chemotherapy/acronyms/abvd.aspx

 

Don2088
Posts: 16
Joined: Aug 2015

Both oncologists gave the Rituxan only option from the beginnig, but neither recommended it initially. The second dr recommened the R-CHOP specifically to avoid the Bleomycin. She felt the R-CHOP would give me full remission without the pulmonary risks. This would also give me more options for treatmetns if the disease recurred. I almost feel like the Rituxin only recommendation is the first doctors attempt to keep an opinion that differs from the second. I like the idea of an non-chemo drug that may take care of this, but I don't want to do something naively and end up with doing chemo after a two month delay. I am leaning toward doing the R-CHOP, but am extremely frustrated that as medical proffessionals, these two oncologist couldn't consult and agree on a treatment.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Don,

Your case has intrigued me because the Rituxan-only suggestion is so different than everything I was told during and after treatment.  As I wrote above, Rituxan-only is commonly used for several forms of NHL; numerous writers here have gone through it.  At a seminar regarding lymphoma treatments after I had been in remission a few years, I asked the doctor running the seminar what I would receive as treatment if I relapsed. I clearly specified my disease type, and she said it would be ICE, followed by stem cell transplantation.  I asked about Rituxan onlly, and she said it would be useless against the diisease.    I later asked my own hematologist/medical oncologist, and he said that Rituxan would be useless against relapsed NLPHL also. I did not mention to him having spoken to the other oncologist, who runs the SCT program at our sizable oncology center inside a teaching hospital (about 45 total oncologists, plus numerous oncology surgeons).

Doctors are always experimenting with grant money, trying to see if new ideas are viable.  It would be wonderful if in fact Rituxan alone could treat NLPHL, since abvd is indeed harsh, with lots of side-effects.  Virtually no one gets all of them, but most get at least a few.

I would recommend that you read the link below, from the University of New Mexico.  The results are very, very poor (of 39 patients, over 20 relapsed, and nine of these morphed into aggressive B-cell lymphomas).  It says treatment significantly improved "a significant minority of patients", which means of course not even half.   

If I were going to consider Rituxan only, I would ask my oncologsit to read the summary, and explain why it is not problematic.

Again, I have no medical training, and have no credentials to question an MD.  But I have several degrees, and read damn well.   I am interested in what you learn as you explore these options,

max

http://cancer.unm.edu/2014/02/26/rituxan-active-in-nodular-lymphocyte-predominant-hodgkins-lymphoma/

Additional Rituxan-only study.  Note next-to-last paragraph in particular.  At 43 months, a full 25% had relapsed, and the patients under study were all very early-stage at the beginning of treatment.

http://www.ascopost.com/issues/april-15-2012/new-data-guide-treatment-for-rare-form-of-hodgkin-lymphoma.aspx

 

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Don2088
Posts: 16
Joined: Aug 2015

Thank you for your insight and information. The rituxin only information was a great help in my decision process. I am going with my second opinion. I feel more comfortable with the fact that it is coming from a teaching hospital and has been cooberated unanamously by 4 other oncologists. It sounds like I will wrap up my necessary preliminary testing this week and start 6 months (2x/mo) of R-CHOP next week. I will update as I go. Again, thank you. This has been tremendously stressful, but having an outlet like this is invaluable.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Don,

I am glad the journal articles were useful for you.  I would not hesitate to have your doctor review them and give his or her opinion if you still have doubts or questions. These two articles were readily available; probably, other articles say differing things.  They do not (I suspect)represent a "definitive opinion" regarding Rituxan and NLPHL.   Most doctors understand most questions, and do not take offense at them.

There is emotional peace in making a treatment resolution, even if some doubts persist.  I learned this especially well when grappling with prostate cancer last winter.  There are so many options, many with equal statistical outcomes, but each with dramatically differing side-effects.  The Prostate Board is mostly filled with guys trying to decide upon their initial treatment.  Very often, this decision making goes on for a year or more, since prostate cancer is also usually very indolent. 

Like most early stage prostate guys, I could have  had surgical removal, radiation only, or even "Active Survellance" (essentially just watching the disease until it bacame problematic and dangerous).  I chose the most radical: surgical removal. I was happy before, and am happy now.

If I were your quite young 44 years of age, I would have chosen the R-CHOP also, since your age leaves such a long time for potential relapse. If you were 60 or 70, the reasoning involved would perhaps be different, and rightly so.

My motto since day one with lymphoma in August of 2009 has been:  I'd rather have side-effects than have cancer.

Side effects virtually never kill, cancer almost always does.  Plus, dead, there are no side-effects.  Opinions here and at the prostate board differ on this thought also.  Each must choose his or her own path, and then live with it.

max

 

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Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

Welcome to the group. I am sorry to hear that you have two conflicting recommendations about how to proceed with your lymphoma treatment. As if the diagnosis itself were not stressful enough. 

A website I have used a lot, and learned much from is: Lymphomation.org.

One thing they recommend, and is not usually discussed on this site, is getting a second biopsy opinion. I had one and it changed my diagnosis. Also, feel free to seek a third opinion. 

I have noticed that a number of new members here are having a newer treatment, for the same type of lymphoma I have, only 2 1/2 years after I did. Things are moving fast. (Thank God). You will want to stay current.

The good news is that this form of cancer is very treatable and there is much reason for hope.

Blessings,

Rocquie

 

 

incrediblyblessed
Posts: 5
Joined: Sep 2015

When you say 2nd biopsy opinion do you mean having the tissues from the original biopsy reexamined by another facility or having a 2nd biopsy done?

Jazmin2
Posts: 18
Joined: Sep 2015

I have sent my pathology slides from my biopsy sent to John Hopkins also. Because at Hopkins, the doctor wants to see it under the microscope himself. He has given me his opinion based on the original pathology report but told me that he needs to see it also, which I like because nothing wrong if a director of Lymphoma department can see himself and confirm what a radiologist has suggested. He got those today and I am waiting to hear back from him. 

Anonymous user (not verified)

i was diagnosed with stage IV lymphoma in October 2011. I have a different strain than you, indolent FNHL Stage IV. After my biopsy and diagnosis I learned that I had numerous but small tumors very widespread througout my body. No immediate threat to any major organs. I did have a swollen liver and spleen. After two labs, one in MA and one in CA , confirmed the cancer it was determined that it should probably respond well to CD-20 therapy with Rituxan. Since it wasindolent, i decided to go with R only for my initial therapy. After 8 weekly infusions and a 60 day wait I was found to have a "total response". I had lab samples sent to MD Anderson and spent a week there And they confirmed my diagnosis and full response. After 28 months of maintenance R I was found to be still free of detectable cancer. Bottom line is R worked for me. I am  now showing some signs of relapse and will undergo another scan in September.

 

bottom line is R-only can work for some specific kinds of FNHL but I have never heard of it being used for your particular strain of lymphoma. Bottom line is if 1) you are not in immediate danger and 2) if you are CD20 positive why not seriously consider usuing the soft approach of R-only? Just my lay opinion. Best of luck to you.

Don2088
Posts: 16
Joined: Aug 2015

Well after 4 months of R-chop, I got the result of my scan. Devasting news. While some nodes improved, others are worse. In fact, some that weren't hot before now are. In a nutshell the chemo did nothing and I am right back to where I was before treatment. My local oncologist is at a loss. I am headed to my second opinion oncologist in Philly Tuesday. Anyone out there had a similar result?

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

I'm sorry to hear that your lymphoma proved to be resistant to R-CHOP. I'm sure that was devastating news. I will be praying for you as you prepare to see another oncologist. Please try to remember there are many treatments available and new ones are coming out all the time.

Blessings,

Rocquie

 

VMarie
Posts: 1
Joined: May 2017

Hi Max,

I've read your posts with great interest and would appreciate your opinion (and others are welcome to weigh in) on our situation. I am quite aware that no one here is an oncologist - and that's okay. 

My son, age 24 at the time of diagnosis in July of 2016, was diagnosed with the rare ALCL ALK-negative and given six rounds of CHOP+etopiside only to relapse in less than three months. He then had another biopsy which showed a misdiagnosis - it was actually Hodgkin's lymphoma all along. (Misdiagnosed by two seperate pahtologists at two different institutions. We paid for a second pathology/opinion).  While awaiting the final results of the second biopsy, CD-30 was confirmed, so they started him on Brentuximab (thinking it was still ALCL, of course).  He's now completed his third round of brentuximab and we are awaiting the results of the PET-CT to confirm NED.  Plan A is straight to auto stem cell.  We wanted to explore a Plan B - giving him what he should have had in the first place - ABVD as a chance for a cure.  Aside from the toxicity issue with double Doxorubicin, our onc now thinks that the two chemo regimines are so similar (??) that if he relapsed with CHOP, he would relapse with ABVD.  (Stem cell is no walk in the park as anyone who has had one knows, but it seems to be the fallback in oncology when they have nothing left to suggest.)  There are no studies or good evidence on what to do in this situation.  It may have happened to others, but if so, it's not recorded in the literature.  I don't quite understand  - if ABVD and CHOP are so similar as to be interchangeable, then why is ABVD the gold standard for Hodgkin's?  How does anyone know - maybe it's the belomysin and daxarbazine that give ABVD its edge in treating Hodgkin's?!

Thoughts?   -VMarie

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

I request that all here read this post not as a question to just me, but to everyone.

I have never had a SCT myself, and others know much more....please share thoughts.

max

illead's picture
illead
Posts: 846
Joined: Aug 2012

and please know that is only what they are, I am no expert.  SCTs have been perfected and had a lot of successes, that having been said and please take this with a grain of salt,  It seems that SCTs are now becoming very commonplace and it seems they are being used as a cure all.  Many times the patient still relapses after an SCT.  If I were you I would get a 2nd opinion to hopefully get a proper diagnosis.  If possible I would go to a good cancer center who has lymphoma experts.  There are many so I am sure there would be one that is fairly easy for you to get to.  I hope this helps a little.

Becky

 

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