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What's the worst scenario of having NLPHL ?

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

HI, I'll be 46 next month and just got Diagnosed this morning with NLPHL, DR says "to have a cancer this the one you should have". and he set me up with oncologist for next week, and he said the Oncologist will answer all my questions and I can't wait. Can someone help answer mine 'really appreciated'. 

-What to expect at my first visit with oncologist. 
-How he will stage my cancer based on what?. 
-Also what it could happen if I choose to opt out of treatment. 
-Finally how to break the news to my Fiancé 'I don't want for her to be with a dead man'.
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Bill,

Wow. You have the strain of HL that I had. Except for Aaron who is a regular here, I can't remember another NLPHL member. It is pretty uncommon, and accounts for 1% or less of all lymphoma cases. It is an "indolent" form, or slow-moving, and almost always very treatable.

Your onc will most likely load you down with specific information regarding your disease and propose a course of action. The treatment will vary with what Stage you are at. Early Stage (I & II) NLPHL usually consists of radiation only, or radiation and some chemo. Later stage (III & IV) is usually treated chemo-only. I was Stage III at diagnosis, and did chemo-only, never receiving radiation. My nodular involvement was fairly widespread.

Staging describes how widespread the cancer is. Divide yourself at the sternum and diaphram into four quadrants. If the cancer (as determined by CT scan) has crossed one line, that is stage II;  if it has crossed two lines, it is stage III.  (Actually, some doctors use a slightly differing technique, and some cancers like leukemia are staged differently, but this is a common technique, and Staging in general refers to how widespread a cancer is).  

Stage IV is when a cancer has moved from its original organ into a different organ. Lymphoma can move nearly anywhere, but by far the most common place for it to go to be considered Stage IV is into the bone. You will most likely get a bone marrow biopsy to test for this.

Not accepting trteatment is, eh, not a good idea. This stuff will never go away without treatment.

The most common chemo for NLPHL and most Hodgkin's Lymphomas in general is the combination therapy r-abvd. This is five chemo drugs given at one sitting, usually once every two weeks. All are by IV (none are pill form).  Of course, your doc might use some other drugs instead.

You know your future wife better than anyone else. You might want to wait until the doc describes his treatment plan, if only so that you can give her some more specifics about the near future.

NLPHL has exceptionally high complete remission rates, and you most certainly should be very confident that you will get through this mess with decades of heath ahead of you.

max

 

 

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

Thanks Max for the insight, I have one question: you said "has crossed one line, that is stage II;  if it has crossed two lines, it is stage III" Is cross lines here is the number of lympho nodes enlarged ? Becuse at my  CT scan prior to the Biopsy I have 2 axillary lymph nodes swollen. The largest was extracted for the biopsy.

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

I believe he means crossing the diaphragm. I'm glad to see you got over here bill, max is a wealth of knowledge and the folks over here are just plain cooler in general.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Bill,

Crossing an artifical line in the chest cavity has nothing to do with the number of nodes, except that the farther it spreads, obviously the more nodes involved.  Doctors do not sit and count nodes -- no.  Staging is a somewhat inexact science, and do not get too concerned with it. It basically gives the doctors an idea about progression, and how best to respond.  MY doc told me directly that the move from Stage III to IV is important, since it affects the "statistics" involved, but he told me that Stage IV is treated exactly the same as Stage III when dealing with NLPHL.

It sounds like you are very early on if that is all they saw on the CT. I had nodes across my chest cavity and down into the abdomen. The surgeon who did my biopsy said "it is all over the place."

Aaron is my good buddy and is finishing NLPHL treatment with in a few weeks.  By the way: I finished treatment three years ago with heavy involvement, and have been totally clean since -- what is called "Complete Remission." You will get there soon, maybe very soon.

max

.

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

I finished last Tuesday max

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

Max, Aaron thanks alot for answering my questions. My neighbor told me that her brother got it 19 years ago at age 39., and he is been clean of it since then which is encouraging. Anyway she said that he refuses to use chemo therapy only RT. Also I have a co-worker who has HL the classic one (not sure exactly which one) 9 years ago, and for some reason her DR did not suggest Chemo only RT and she been clean since then. Also I read in some reports on the web that a good number of people had complication later on from chemo treatment it self.

Is it an option to opt out chemo ?, and what you think about doing RT alone.

P.S : Please don't be annoyed by my questions. I just feel lost and do not know where to go for answers 

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

Max, Aaron thanks alot for answering my questions. My neighbor told me that her brother got it 19 years ago at age 39., and he is been clean of it since then which is encouraging. Anyway she said that he refuses to use chemo therapy only RT. Also I have a co-worker who has HL the classic one (not sure exactly which one) 9 years ago, and for some reason her DR did not suggest Chemo only RT and she been clean since then. Also I read in some reports on the web that a good number of people had complication later on from chemo treatment it self.

Is it an option to opt out chemo ?, and what you think about doing RT alone.

P.S : Please don't be annoyed by my questions. I just feel lost and do not know where to go for answers 

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

No such thing as an annoying question. Your at the time when your trying to gain as much knowledge as you can. From my research it seemed to me that radiation was nastier than chemo, just my opinion. Also depending on the staging they may want to go with chemo only, a lot depends on your Onc and their particular school of thought. In the end course of treatment will be your call but side effects are just part of the deal.

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

What you think about this :

http://www.newswithviews.com/Howenstine/james189.htm

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Bill,

The folks here will give you straight-up answers based upon their real-life experiences. We are all laymen, and I would STRONGLY recommend that you not go looking online for professional advice. I did not open the link you provided. The writers cannot possibly know the particulars of your case, and do not have your results, etc.  Did the patients you mentioned have NLPHL ?  Were they at your same stage? Were they your same age ? If not, what they did is really of no relevance to your situation.  Any reading I do about cancer online is from Academic, university sources.  Anything else is snake oil and more harmful than good. Most doctors advise their patients to stay off of the internet regarding their prognosis, for good reason. Support groups like this are an exception.

Any treatment plan your doc gives will be based upon standardized protocols that come from the data from thousands of patients that have been treated over many decades. If you show him or her some internet article that challanges them, they most likely will not be appreciative.  It would really be an insult to his competence and expertise.

If they recommend radiation, I would do that. If they recommended chemo, I would do that. If they recommend both, I would do that.  It IS quite OK to seek a second opinion, but that is very different from using an internet source. You are really putting the cart way in front of the horse. Let the doc at leat meet you first.

.

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

You arw absloutly right. I keep looking on the internet looking for some comfort, and endup more worry and lost. Thanks for the advice.

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Bill, as I almost always do I must agree with max. I remember when my journey began some 8 months ago I was also looking for alternatives to traditional treatment and " googling " way too much. I quickly realized that when it comes to hodgskins lymphoma the numbers don't lie. I guess the best example I can offer is one evening searching for alternatives I came across a sight promoting green tea or supplements or something like that and it had a HUGE disclaimer stating that when it comes to HL traditional medicine has the best success rate. The numbers don't lie.

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

I also notice starting about a week or so ago that I am sweating at neck and upper chest only rather than the whole body "wasn't a soaking sweat". I checked the bed sheets , my cloths I even wear a colored undershirt so I can see any wet marks, but no sign of any wet on my undershirt but I can feel the sweat on my nick.  Am I starting with B class staging?. did it happen to you. please inform. Thanks

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Bill,

Calm down guy. You see the doc in a day or two. From your CT results (as you described them), it sounds like you have a very minor, early case of HL on your hands. The onc will fix it.  My onc told me that I had had the disease over a year, maybe WAY over a year, and still he wiped it out in no time with the right medications.

Have some trust, and at least wait for his input. The sky is not falling.  Bless the news he gives you. I never had "B" symptoms, and therefore cannot comment on them.

Max

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

ُThanks Max, I found this about anxiety from mayoclinc site:
"The sweating tends to be confined to the head, neck and upper chest rather than the whole body is the most common caused by anxiety"

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

Hi Max, Aaron I have PET scan schuduled on Thrursday, i was thinking it's like Ct scan but itseems totally different and takes a long time. My main concern is while under the scan do I get hocked to an IV, if so it's true that they hooked the patient to urinary catheterization ?

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Bill, it's a lot like a ct just takes a little longer. They give you a shot of radioactive glucose, toss you in the machine for 20 min. And then send you home. I've had 2 of them and its really no big deal.

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Bill,

Sorry I haven't responded sooner but have been following.  Aaron is right, it's not a big deal.  It's kind of similar to a CT scan.

Jim

GKH
Posts: 328
Joined: Jul 2012

The absolute worst case is that an asteroid strikes Earth tomorrow wiping out all life. Of course in that case it will not matter what we have or if we are star triathletes. Sorry if this seems srcastic.I am just making a point that we must play the cards we are dealt. I think you are a very smart and pensive person. I hope you come to the right decision, one that works for you.

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

I ben told by the person at the PET scan that it may take up to 3 hours. I am really worry the most about the if I will be hooked into urinary catheterization. Did you guys ?

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Not for me, Bill.  I suppose if your cancer involves your bladder or kidneys, it's possible.  I have been catheterized in the past due to surgery.  It's primarily briefly slightly uncomfortable during insertion and removal but not too bad.  While  it was inserted, I constantly felt like I had to urinate which was odd as my bladder was empty.

I know you have fear and anxiety over all this and it's understandable.  We can be our worst enemies with anxiety.  I don't recall if you are on medication for anxiety but I promise it helps.  I'm pretty sure for me, the PET scans didn't last three hours though.  When you get a chance, it would be helpful for us here if you would fill out your profile (about me) section of your profile.  That makes it easier for us to reference some of your details without having to rely on memory or searching through posts :).  

All of this will get a little better once you start treatment and it becomes more routine.  It won't be a picnic but you will get through it , Bill.  Good advice from many here is to take things one day at a time and focus on gettng through the steps.  You are always welcome here.  We're all in this together.

Sending you big hugs and positive thoughts,

Jim

Bill_NC's picture
Bill_NC
Posts: 112
Joined: Jan 2013

Thanks Jim, I have one question to anyone who knows tah answer. Does lymphoma (HL) or (NLPHL) which effects the B-cell and T-ceel stop producing antibody and kill infections.

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