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Just Diagnosed Advanced Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL)

Ed_Encinitas's picture
Ed_Encinitas
Posts: 1
Joined: Jun 2015

Hello, I am really happy I found this site.  After being sick for 3 1/2 years, I had a myph biopsy and was diagnosed with SUSPICIOUS for Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL).  The doctor says he contacted the pathologist and Stanford Medical to confirm.  He says I most likely have had it a long time (makes sense since it is slow moving).  I have suffered from fevers and nightsweats (whole body drenching) for more than two years which he explained are B symptoms. I had a bone marow biopsy and have another PET Scan coming up.

He mentioned combining ABVD with Radiation (he called it less agressive) but said it could come back in 10-15 years and by then there would be an easier cure.  Alternatively, he says I can be agressive with R-ABVD (I think he said this) and be rid of it.

Anyone else been through this?  

Would really like to know pros and cons.

 

bros
Posts: 4
Joined: Jun 2015

with the bone marrow biopsy, if you are sensitive to pain - ask the doctor to give you a painkiller like percocet for you to take a bit before the biopsy. They can be quite... uncomfortable. It is best to dull the mind before one.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3524
Joined: May 2012

Ed,

You have what I was diagnosed with about six years ago. I was late Stage III (highly widespread disease, from my neck to pelvic region). NLPHL is very rare, constituting about 1% of new lymphoma cases per year in the US (NLPHL is 5% of new HL cases, but HL occures only about once for every three or four new cases of NHL, which comes out at approximately 1% of all lymphoma types combined).  As you noted, it is a very indolent form, quite slow-moving. When my doc told me that it grows very slowly, but that it was "all over," I asked how long I had likely had it, and he said at least a year, maybe a lot longer, which is similiar to what your doc told you. 

I did not have "B" symptoms; in fact, I never had any symptoms, except severe fatigue. My disease was discovered by accident, during a heart scan.  First line therapies are usually effective in achieving complete remission (no ability for PET or CT to detect residual disease), but it does have a 10-15 % chance of eventual relapse, and occasionally will morph into a more aggressive strain of HL. Late stage disease, the presence of B-symptoms, and being over 60 years of age at diagnosis all lower survival statistics a little.  Former Pennsylvania Senator  Arlen Specter died of NLPHL.  He went into full remission twice, but when he relapsed the third time, it came back as an aggressive NHL, which was the end.

But focus on the good news:  NLPHL is very treatable in virtually all cases.  I did the r-abvd option, and am clean nearly six years later.  Stage III and IV require six cycles, or twelve infusions, which takes six months of chemo. Extreme cases sometimes go eight cycles, which adds two more months.   Radiation is not very commonly used against most lymphomas, except quite minor, localized cases, or in cases of "bulky disease."  ABVD can have a lot of unpleasant side-effects, but not everyone gets these, and most diminish or go away after treatment ends.

Rituxan is not often used against Hodgkins lymphoma (HL), but it is used with NLPHL, because NLPHL presents the CD-20 cell, which is normally just seen in NHL.

 

I can recall two others here who had NLPHL:  "Aaron," and "Bill_NC."  We are here for you....

max

 

Additional:

I typed the stuff above at work on a phone. Rereading it now, I can see that I did not explicitly answer your question. It seems the oncologist gave you an option of (abvd + rituxan) or (abvd, no rituxan, and radiation).  Part of the decision depends on staging. If you are III or IV, I would go with r-abvd, which is the normal treatment, late stage.  Rituxan is not usually considered one of the harsher chemo agents (it is technically not chemo anyway, but rather a "monoclonal antibody"). Some studies suggest that combining chemo with radiation may occasionally, years or decades later, increase the chances of getting treatment-induced leukemia. Probably very unlikely, but it is something to be aware of.

I have never heard of an "either/or" proposition regarding radiation and Rituxan. That is, I don't think they are mutually exclusive, so why he posed the treatment options that way is worth asking him .

I hope some of this is informative and assists you in your decision making process.

A fairly good summation of how NLPHL is viewed by oncologists:  http://www.hindawi.com/journals/crihem/2014/427613/

.

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Ed,

I'm surprised that Max forgot about me. I'm a fellow NLPHLer. Max was my favorite info. provider.  I was stage one and went the route of R-ABVD. I have information on my "page" and blog. IF you click on my picture it will take you there. It's a tough battle, but winable. Stay strong and let me know if you have any questions. You can send email through this site to me. I started my chemo last year on May 1 and became NED in September.

Jeff

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

Jeff,

Definitely an oversight there, Jeff !  I forgot, but neither can I remember what I had for lunch (and it is 2:30 PM local time).  I am sure it wasn't a smoothie, however.

There was a female writer in our NLPHL club back in the day, very friendly.  I will try to recount her name as well, especially since NLPHL is infrequent among females.

max

Sdgirl96
Posts: 4
Joined: May 2015

I also was diagnosed with this type. I am stage 1 so I only had localized radiation. I just finished treatments last week and am waiting for the next round of tests to see if it worked. Good luck on your journey!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Welcome to our little band of indolents, Sd !

I hope all is clean on your pending scans,

max

Katie F.
Posts: 1
Joined: Oct 2015

Hello all!  I am so happy to have found this site!  My husband (age 33) was just diagnosed with Stage IV NLPHL.  We are in the process of getting a second opinion and confirming his treatment plan.  Our first doctor is recommending 6-8 months of ABVD chemo.  In the meantime, if anyone has positive stories to share, it would mean the world!  It's hard to find a lot of information about this type of cancer at this stage.  Thank you in advance and we look forward to connecting with you all!

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

Welcome, Katie.

I had late-stage 3 NLPHL (very widespread).  It is usually quite treatable. It is a rare disease, constituting less than 1% of all new lymphoma cases a year (5% of new Hodgkin's cases, bu Hodgkin's is much rarer than non-Hodgkin's).  I read a report that said that all of England has fewer than 300 cases per year, average.

What is your husband's age ?  What secondary organ did the cancer enter to render it Stage 4 ?  (Usually it is the bone marrow, but any organ is a possibility).

R-ABVD is the usual treatment for first-line NLPHL, probably 90% of all cases. Rarely, an oncologist will use R-CHOP.  I did six months of R-ABVD, but doctors do push that up to eight months in severe cases.  Radiation and surgery are never used against late stage NLPHL, unless it it to shrink a huge node causing pain somewhere.  Due to its rarity, there is not a strict protocol for treatment, but as I said, R-ABVD is the usual choice, and seems to work very well.  Having read about it for half a decade now, ABVD would be my choice if I were beginning first-line treatment again.

We have had about 7 or so NLPHL cases here since I joined a few years ago.  100% went in to full remission, and no one has relapsed to my knowledge. All but one used ABVD.  ABVD is ROUGH when used long-term (several months), but most side-effects go away over time.  I am almost six years clean of the disease currently.  It can relapse years later, and does so in 10-15% of all cases.  It is the cancer that Sen Arlen Spector of Pennsylvania had -- our one claim to fame !  

Please do stay in touch and give specifics of his case.  I am sure we have valuable insights to share.

max

Bill_NC's picture
Bill_NC
Posts: 133
Joined: Jan 2013

Hello Max, Jeff. it's been a while. Missed you guys. 

Hello and welcome ED , Sdgirl96 and Katie. 
 
Hope all doing well. Sorry been away for long just got sucked back to the busy life. I need to slowdown and thank God for his Blessing and Mercy. Last July was my 2 years mark of NED. I was stage IIIA , I only used ABVD alone. Since my last visit to the ONC he said we are stopping the CT scan every 6 months to once a year. When I first diagnosed I never thought I'll be here witting 2 years later. 
 
To ED and Katie husband roll your sleeves up and raise your heads up because I know you will beat that sucker.  
 
I am sure you will see more of me here in future. All stay safe and take care.
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Delighted to hear you check in, Bill.  The results are wonderful.  At about three or four years NED, your oncologist will end all CTs, and just use blood panels and a physical exam to monitor you. I have not had a lymphoma CT in a few years now.  Everyone in our treatement club for NLPHL (including Aaron also) has been disease free, to my knowledge.  Matthew Butts also, who was critically ill for a time, and who had to receive his chemo as an inpatient for a month or two.  He was NED, last I heard.

max

Don2088
Posts: 16
Joined: Aug 2015

It has been a while since I have posted. I was diagnosed in July with Stage 3 NLPHL. My first oncologist recommended R-ABVD. The secodn opinion oncologist from UPENN recomended R-CHOP. She said at my age (44), she would rather not give me the lung toxin in ABVD. I have had 4 R-CHOP treatments. I was scanned between 3 and 4. Everything outside my chest area was in full remission or significantly improved. There were a couple in my checst that still showed improved, but still fairly active. I have 2 more treatmetns (11/2 and 11/23). Hopefully in January you can add me to your list of NED patients.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Don2088,

It sounds like your progress is tracking in a pretty routine fashion for a patient who began with widespread NLPHL.  Based on what I have read here over the years and my own, personal experience, it would have been unusual for there to have been no tumor activity remaining at this time.  Your next PET will most likely wait until at least a week or two following your 11/23 infusion.  If anything remains at that time, depending on how minute it is, a cycle or two of the R-CHOP might be added, or possibly some radiation.  This would not constitue "relapse," since first-line treatment is not yet ended.  Your oncologist will answer what he or she thinks on this issue if asked, of course.

But we hope that all is totally and completely "clean" then.  We want you on The List !

max

 

.

Spanishlady
Posts: 7
Joined: Mar 2016

hey all,

finally decided it it was time to share a post. I was 48 years old when I was diagnosed with NHPHL. diagnosis did not come easily as I didn't have your typical symptoms. It was mid-July 2015 and I was experiencing a nagging unproductive cough for weeks. I went to my GP on two different occasions. The first time I was told  it was allergies, the second visit, I was told it was just a summer cold. it was the end of August and the cough was getting worse. I called my GP and demanded an X-ray. That is when my life changed as I knew it. to make a long story short, 2 weeks after the initial x-ray, I was scheduled for thoracic surgery to biopsy the 7 cm mass in my chest. I also had a 4 cm mass in my lower right lung. 

advanced stage III NLPHL. I was given 6 cycles of APVD which began in Oct 2015. In Mid December I was ordered another PET which came back as a "complete response." March 21 was my last infusion. IN the beginming, I could deal but at halfway mark I was starting to feel more fatigued, stomach problems, and swelling of my hands and face. I can't wait to feel normal again but what is "normal?" I focused so much on getting through treatment that I had forgotten to fully grasp the emotional toll it has taken.

this experience may have started out like a death sentence but it has made me realize that I am not in control of everything and its okay to feel vulnerable.

pintofplain
Posts: 1
Joined: Dec 2016

Hi all,

Just wanted to introduce myself. I am a 38-year-old man diagnosed 11/22/16 with NLPHL, which in my case we found investigating a cluster of enlarged axillary lymph nodes. PET scan for staging found disease in my bone marrow and spleen, so my disease is stage IV. I didn't have any other symptoms aside from the lump under my arm. My oncologist at Jefferson in Philadelphia started me straight away on R-CHOP, a planned 8 rounds. I'm 8 days into my treatment, and so far, it's been ok -- and my lump has all but disappeared. Good luck to all of you who are fighting with me or in remission!

Mabakhrts
Posts: 1
Joined: Jan 2017

hi! I typed this and thought it was posted but I don't see it. I was diagnosed jan2015 with nlphl stage 3b. R chop. Plus I was diagnosed with sarcoidosis st the same time. Ended up with thyroid cancer September 2015 and I am just finishing up everything with the thyroid. How are you feeling?  It's a rough regimen. 

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

Welcome, pintofplain !

As you can see, this thread is a detailed review of NLPHL, a rare HL.  I see you are getting CHOP, which means your doc is of the school of thought that views the strain as a variant of NHL.  Such is not uncommon, and NLPHL has gone back and forth in classification over the decades. In some European countires it is still formally classified as NHL.

Your screen name and use of the term "straight away" makes me think you are perhaps British...?

Almost every NLPHL is discussed above, if you want to scan through it.  Please keep writing, and feel free to email me on the CSN Email service here any time.

max

 

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lindary
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Joined: Mar 2015

Two years ago I was told I have folicular non-hodgkins lymphoma, stage IV. I had 6 cycle of R-Chop. Two things with this chemo. Wiith each treatment you will be more tired than with the previous. Second is the Prednisone. I took 100 mg daily for 5 days, starting on the first day of treatments.  It made me feel pretty good. On the 6th (first day without it) I felt ok. The 7th & 8th day had me sleeping any time I could put my head down. I found that if I took a nap on the 6th day and slept 9 - 10 hours at night the 7th & 8th days weren't quite so bad. Either way, I told my boss that the 7th & 8th days I would only wokr half a day so I could sleep the rest. 

I found R-Chop fairly easy to deal with, except for the Prednisone. Almost felt guilt telling people I was on chemo since I wasn't having any side-effects. However for me the R-Chop didn't get it all and I had to do 3 cycles of RICE, also given every 3 weeks. For this one it was 3.5 days in the hospital getting the chemo. It hits the blood cells really hard. By the 3rd treatment I had to get blood transfusion to keep the red counts up. Came close to needing platelets too but each time my body would come back enough to avoid that transfusion. 

 

Good luck with your treatments. 

 

Schembrak's picture
Schembrak
Posts: 8
Joined: Jan 2017

Hello, I got diagnosed with Stage 4b NLPHL with T-cell rich nodules, officially on 07/22/2016. From what my Oncologist told me....that the type of cancer I had only presented itself in only 10% of NLPHL cases. With me having 4 masses in my spleen and it being in my pelvic bones, changed from wanting to do the ABVD, to the RCHOP. He said the RCHOP is more aggressive than the ABVD. 

 

However, I was told on December 16th that I am in FULL REMISSION!!! He has scheduled for me to get my power port out in April!

What does NED, mean?

Prayers to everyone!

Kaitlyn

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Kaitlyn,

Welcome to you. I am thankful you have written.

NLPHL by itself is very rare, and then this T-rich substrain (as you mentioned) makes it even rarer (I am guessing, probably less than 1 in 1,000 new lymphoma cases).   It is something that the oncologist will probably want to watch for some time.  NLPHL is not a well-studied disease, and there is not a lot of research on how to best treat it, with the lucky part being that it ordinarily is easily beaten by whatever the oncologist chooses.  As your own history demonstrates, the combos of choice are almost always either R-CHOP or R-ABVD.

I hope you recover rapidly, and choose to write in the future,

max

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

No Evidence of Disease!

That is a great thing to hear. Congtratulations.

Jon_Paul's picture
Jon_Paul
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Joined: Jan 2017

Update

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

Welcome, Jon-Paul.

Many first-timers provide little detail; such was not your case. But more specifics are better than fewer.

You have found one of the more active NLPHL threads -- a great place to jump onboard.

I too had NLPHL (as following this tread has shown you), advanced stage 3, from the collar bone to the pelvic region, across axillary to axillary. Inside both lungs, wrapped around various organs.  NLPHL constitutes around 5% of all new HLs, but since HL is much less common than NHL, NLPHL is only about 1% or less of all newly-diagnosed lymphopmas annually.

It is quite indolent, or slow-growing, lacking in aggressiveness.  Because of its rarity, NLPHL lacks definitive medical recommendation for treatment, and in times past NLPHL was classified as a rare NHL, and some nations still regard it as such.  It absolutely lacts the Reedberg cells that are the hallmark of HL, and does stain for CD20, which no other form of HL presents.  Too few case studies with too few patients have left various schools of thought arguing about how to treat it, or when.  In times past early stage was sometimes treated exclusively with RT.

The best studies today recommend aganst solo RT treatment at any stage, showing much better long-term freedom from relapse with combined modality treatmetns that include chemotherapy. Or even chemotherapy alone, with no radiation. Many studies show that combining most forms of chemo with radiation statistically increase the likllihood of later morphing into a lelukemia, even if decades later. But of course, there are cases where absolutely both must be employed, to ensure immediate survival. (I am not speaking specifically of treating NLPHL with both radiation and chemo, but all chemos with radiation; there are over 200 FDA apprioved chemotherapy agents in the US currently.)

Neither I nor anyone here is a doctor or medical professional. We share layman's insight and experience.  But I absolutley would not have choosen solo RT as a form of treatment for NLPHL.  Doctors who view NLPHL primarily as aan HL ordinarily use R-ABVD, the most common first-line agent against classical HL (CHL); doctors who view NLPHL more as an oddball NHL use R-CHOP, the most common first-line combination used against most NHLs (I believe Stanford is in this latter general camp, but cannot say for certain; most of the patients here who have gone to Stanford with NLPHL reported being on R-CHOP).

NLPHL has excellent rates of CR (complete remission) or NED (no evidnece of disease), but lifetime relapse is fairly high, at about 15%. Because I was over 40 at diagnosis (53 then) and advanced stage my oncologist said I had a 60% chance of being alive in five years. Relapse of NLPHL can occur as NLPHL again, or as an aggressive NHL, or as a leukemia.   I am in CR after six years now, following massive involvement.  I have never read of a NLPHL patient here who reports relapse to date...there have been several Stage IV writers here over the years, although in my time here since 2012, I don't think I have encountered more than perhaps ten people who shared our disease.

Duke is world-class, and your RT knows what he is doing. The four of you all having cancers is indeed bizarre. May you all achieve and sustain full recovery. Yo uhave the intelligence, research, and swagger to get through this as a healthy old man.

I am going to post an article from a world-class expert regarding an overview of NLPHL here as soon as I can find it again.  Forgive the typos: permanent chemo fog, neuropathy, possible Parkinson's, and STRESS make keyboarding a challange. Grad school in Germanic history taught me the improtance of writing well, but it aint no longer an option.  And it taught me how to study fast, the old "drink from a firehose" image used in grad school. I knew absolutely nothing about lymphoma at diagnosis -- nothing.

Most people today can only Tweet 30 words or less anyway, or use emojis.  Soon society will be so dumbed-down than humans can only make grunting noises at one another.  We are devolving into what many cultural historians are referring to as a "new Barbarism": a level of crudness and lack of reason that has not been seen since prehistoric times a trend started at least by the 1950s.  I am just below Asheville in SC.  Our state motto is (from the Latin)

Whilst I breath, I hope

max

An excellent technical overview of NLPHL and its treatment history. I believe the author is a "Stanford guy."

http://www.bloodjournal.org/content/122/26/4182?sso-checked=true

nickbach
Posts: 1
Joined: Feb 2017

My son was diagnosed on July 11, 2016.  It was by far the worst day of my entire existence.  He was 5 at the time - 6 now.  

Leading up to it - how we discovered it - his dentist noticed a lump in his neck area.  We had never even noticed it, but looking back at his baseball pictures, you could see it.  We were told to get it excised, no matter what it was - it was a pretty hard little mass in there.  We hoped and prayed for a "cyst" or any kind of tooth situation...but on 7/11/16, my wife got the phone call and they said "Hodgkins".  I went into a pretty dark place in my brain and lost tons of sleep.  Impossible to not think the worst, but kept telling myself to stay positive.

One of the only things I ever took comfort in was message boards like these.  Reading other people's stories and how they made it through each day gave me comfort knowing we're not alone in this thing.  That's why I'm posting here today - hopefully to help someone out - maybe the next Dad or Mom that reads this....

Initially, the diagnosis came back as "Hodgkin's"...which made me sick to my stomach.  I researched it like crazy and didn't feel any better about it.  About 2 weeks later, we received a more precise diagnosis of Stage 1 NLPHL.  I hit my knees when the Doc said "100 % cure rate" - it was the most beautiful thing my ears had ever heard.  I no longer cared about the treatment, his hair, his schooling, none of it.  All I knew was that my little boy was going to live - and that was all I cared about.  

To make a really long story short - we went through 3 rounds of CVP for chemo.  His hair never fell out.  I never even told him what was going on.  I just wanted him to keep smiling and being a little boy.  I didn't want him to think he was "different" in any sort of way.  he called his port line "his robot" and I told him he was getting a "power disk" put into his chest just like Iron Man.  He hated "getting poked" - and that was by far the hardest part of all of it - seeing  him cry...but he made it through.

Results came back 100% full remission right before Thanksgiving.  We hit the road the ext week for Disney World.  I pray every day that it's over and done with.  I also pray to the Lord that the next person in my family to get sick in any sort of serious way will be ME!!!  I think he hears my prayers, and I look forward to every day now with a very different outlook.  I count the minutes now....not the dollars.  I just want to spend as much time with my kids  as possible.  It's been a huge blessing in perspective for my wife and I - and we're all still here alive and well.  Cancer sucks - but it can be BEAT!  

#StrongLikeNate

 

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

Strong,

Your story regarding Nate is remarkable. Kids seldom get indolent cancers, almost always aggressive types.

Its beauty speaks for itself. Thank you.  And know that he is absolutley the youngest NLPHL report here ever, and one of the yougest lymphoma patients ever reported here as well.

max

StephanF's picture
StephanF
Posts: 10
Joined: Apr 2017

Hey guys and girls,
my name is Stephan, I am 34 years old and I'm from Frankfurt/Germany. Since here in Germany are no good cancer forums (especially not for NLPHL) i was happy to find this one.

Short introduction to my person and the process of my cancer:

Somewhere in 2009: First time I recognized a bigger as usual lymphnode in my right groin. I didnt take it much serious.
10.12.1015: Went to a doctor and he measured it with ulrasound. It was 4 cm big in lenght. I decided to not take it out. I didnt had any B symptoms.
20.03.2017 Extraction of a 5*3 cm Lymphnode from my right groin because my doctor found in the ultrasound 2 more lymphnodes with each 2cm right beside the big one.

24.03.2017: Diagnosis NLPHL

Afterwards many visits at different oncologists and 2 CT's (Abdomen/Groin, Thorax). Unfortuntely they found 5 more "pathological" lymphnodes close to where they extracted the first one. Thorax was clean.
One of my oncs said, that it can be anyway stage IA, because the additional nodes are in two different areas, but these Areas are so close to each other that may we can consider it as one area and treat it only with IF.

Next week on the 18.04. i have my bone marrow extraction and ths is what i fear the most because of the possible result. I know that when they find there something, it will be stage IV and I'm going to have a hell of a time with Chemotherapy.

Of course I will let you all know what are the results.

Since I was reading a lot about this NLPHL i learned that IF is the common use in stage IA whereas others say chemo would be better, because the chances of relapse are smaller. Furthermore I would have to freeze my sperm before the IF because i plan to get children with my wife withinh the next year. Does anyone here maybe has any sources that can help me make a good decision on which therapy i should take?

And one more thing: I always thought i was psychological stable but since the diagnose i feel like i am getting crazy. I know the changes for cure are good but I am quite a pessimistic person adn I am ******* afraid of the therapy (IF or chemo, both are a massive attack on the body). Since then I take benzodiazepine each day because otherwise i wouldn't be ablte to sleep or calm down in any way.

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

Wellkommen, Stephan,

NLPHL is ordinarily easily put into full remission, regardless of Stage at diagnosis. But it is easily misdiagnosed, so be sure that the biopsy results are conclusive.   In the US, Stage I or II disease is ordinarily treated with radiation, chemo, or both. The studies I have read suggest that for early-stage disease, it is actually best to use BOTH.

Stage III or IV disease is usually treated with chemo only.

Some of the most commonly referenced Lymophoma studies in the US are from Germany and Hungary, so care in Germany I would imagine to be first-class.

Stage IV disease, if you have it, is not a lot more difficult to cure than earlier-stage disease. This is unlike most organ cancers, in which late staging is much worse than earlier.  most likely you will be cured in a relatively timely manner.

Several of the common chemo drugs for NLPHL used in the US are indeed harmful to reproduction, so do take safeguards in that regard.

max

 

StephanF's picture
StephanF
Posts: 10
Joined: Apr 2017

Hello Max,

thanks for your words, they calmed me a bit down. 
It's definitely NLPHL. I dont know how it's in the US, but here in Germany first one pathologist looks at the extracted lymphnode and afterwards another has to confirm it.
Of course, I am really "happy" to have this kind of cancer because I know it's so good to treat but I also do read about the side effects of the therapy which are for example other forms of cancer like leukemia which can come up even decades later. But then I think "hey, may in 20 years they've found a cure against all this".

Max, i read on your side here that you wrote that after this disease you will never be the same again. What exactly do you mean by this?
When this whole thing is over I dont want to be attached with it anymore and completely forget about it. I only want to have it out of my body and then never think about it anymore.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3524
Joined: May 2012

The overall "cancer experience" varies dramatically with each individual. Sort of like survivng a train wreck; some will be traumatized for life, some will not.  Most will feel something long-term.  MOST recover nicely and go on to have relatively "normal" lives.

But what is a "normal life ?"  Everyone faces trauma, sickness, setback, whatever. Everyone.  Who has had more trauma than a family like the American Kennedys ?  Wealth, fame, they guarantee nothing (Nichts !).   Cancer can be a time to step back and assess what you believe, why, and how you can grow. As I wrote at my "About Me" section, most ask after a diagnosis "WHY ME !"  I reply:  Why would it not be you ? Were you born outside the human condition ? 

Secular philosophy (Heidegger, Sartre, Kierkegaard, Schopenhauer) and organized religion  (Buddhism, Christianiny, Judaism) all agree that suffering and hardship are the essence of life.  It can be a catalyst for advancement, or pernicious, and drag one down.   Tranquil wellbeing is an illusion, posited by modern society and the media, both of which have no deep understanding of anything.  People can all be happy, but despite hardship, not by never knowing it.

The specific effects can be biochemical (from the drugs and disease), radiological (if radiation is given), psychological, spiritual, even financial and interpersonal. You are young, have a readily controllable disease, and a bright future ahead.  Be thankful, not anxious.  Move forward after this to life's next challange for you. Plan on living till 100.

Please share what drugs the doctors and you decide upon; those facts can allow us to give further insight into probable side-effects.

max

StephanF's picture
StephanF
Posts: 10
Joined: Apr 2017

I understand what you mean.
Sure, you can also see it as something valuable since you make an experience not vereyone makes and therefore widenyour horizon. I guess it's all a matter of your personal constitution and opinion  or point of view towards the disease and life in general.
For example many people told me not to read about it in the internet because this would just make me even more crazy and feeling uncompfy, but for me it's the opposite. Maybe because the disease isnt as bad as other cancers and the more i read about that people got in full remission the more i feel safe. On the other hand many doctors tell you different way of treatment and in the end you have to choose on your own which is the best for you whereby you can only choose this if you have the needed background knowledge.

I start recognizing that the more I know about NLPHL, the less afraid I am. Anyways, there is always the problem that once you got this disease, it can come back, or even worse, another, more aggressive kind of cancer, comes back. I think this will be the thing I'll have to work with from now on.
At this point I also do have my next question: Even if i will be diagnosed in stage 1A and they offer me IF only, shall I take it? I've read that it cures the cancer but the chances that it comes back is higher and also a radio therapy can make a bigger risk for other cancers like leukemia. Maybe I should take only Chemo? I wouldnt have a problem with the side effects, they will go away, but therefore i have a bigger chance not to hear anything from cancer ever again.

And something else: Looking at the statistics for this disease, did any of you ever thought about playing the lottery? xD

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

First, my second opinion Dr. recommended I read up on my lymphoma on the internet. I basically steered clear of anything that was more than 2 years old. 

As to after chemo. I know people who after they finished their treatments decided to travel, change jobs, or made some other major changes. Then there are others, like me, who couldn't wait to get back to working like we did before diagnosis. However, my husband who has been retired a couple of years at the time of my diagnosis has decided we need to travel. He has a list of place he feels we "need" to see. 

Me, I'd rather be spending more time with our kids and grandkids. 

Joemory21's picture
Joemory21
Posts: 41
Joined: Feb 2013

It's been a long time hi all. you got this I was stage 4bes kicked its butt and still going strong. I did r-abvd for 6 months. 

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