CSN Login
Members Online: 0

You are here

Newly Diagnosed NLPHL.

Jazmin2
Posts: 18
Joined: Sep 2015

Just wondering if someone newly found out about NLPHL? My doctor is only asking for CT Scan. 

incrediblyblessed
Posts: 5
Joined: Sep 2015

Hi Jazmin! I just received a diagnosis of NLPHL yesterday 9/14. I am scheduled for blood work and a PET/CT on Thursday and a bone marrow biospy / aspiration on Friday. I haven't been too successful yet finding information or support online for this yet. HL is rare for lymphoma and NLPHL is the rarest of the HL's.

Jazmin2
Posts: 18
Joined: Sep 2015

My doctor somehow only wants to get CT scan done, even though every where I read it is suggested that PET needs to be done. I am calling Hopkins tomorrow to get some more information. 

I did the blood work today and getting a CT scan on saturday. But I will go for a PET also but need to talk to my physician and Hopkins tomorrow. What I have heard is that right diagnosis is the most important thing. My physician said to feel comfortable getting second opinions. 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Jazmin2,

Welcome to CSN Boards.  Several members here, including myself, have had NLPHL (two or three new cases in the last two months in fact).

While NLPHL is rare, it is also very indolent (non-aggressive, slow moving) and is almost always easily put into full remission. It is usually treated straighforwardly as a form of HL. Stages 1 and 2 are ordinarily treated with radiation and/or chemo (many studies suggest that using BOTH is more effective that just one or the other), whereas Stages 3 and 4 are treated with chemo only.  The most common chemo used agaisnt it is R-ABVD, but R-CHOP is substituted by some doctors. Other chemo combinations are possible also. 

As long as your biopsy is confirmed by a good lab, in most cases a person can be successfully treated for this disease at most regional or local cancer centers.  One need not search the earth for an expert, since it is not one of the tougher lymphomas to kill off.  Going to a place like Johns Hopkins will cost more, but otherwise is probably of no benefit at all. This is true of most cancers:  unless one is dealing with an extremely complex or aggressive disease with no treatment protocols, there is no reason to travel huge distances and spend an addition fortune to get the same care you could get in your home town.

I had advanced Stage 3 in 2009. I did six months of R-ABVD (never any radiation), and have been in complete remission since. Every NLPHL patient here in the last few years has gone straight in to complete remission,and none of whom I am aware has suffered any form of relapse.

max

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Better survival rates than most other forms of HL:

http://www.ncbi.nlm.nih.gov/pubmed/25863756

Discusses most common treatments:

http://www.ascopost.com/issues/december-15-2011/how-should-we-treat-nodular-lymphocyte-predominant-hodgkin-lymphoma.aspx

A more technical, scientific discussion of the particulars of the disease, including cell types, etc.:

http://asheducationbook.hematologylibrary.org/content/2013/1/406.full

 

Jazmin2
Posts: 18
Joined: Sep 2015

I am waiting for my cat scan on saturday and see what doctor say. I still wonder why not PET. But I guess one thing at a time. For right now my brain is fried with so much information. 

 

 

lindary's picture
lindary
Posts: 709
Joined: Mar 2015

I believe PET is a much higher dosage of radiation than a CT scan and it costs more. I had an unltra sound plus several CT scans before the drs felt it was time for PET. You should check internet of CT versus PET.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Many centers now have combined PET/CT.  I never had a PET before chemo -- CTs only for staging. My first PET was about two months into treatment to assess effectiveness.

Most of my CTs were "with contrast", which takes a good bit longer than a CT without contrasting dye. A PET is longer still; plan to be at least an hour for any PET appointments.

 

Regarding radiation, all doctors have just said that "the scan is absolutely critical."

Jazmin2
Posts: 18
Joined: Sep 2015

I thought everyone had a PET before therapy. I have a CT tomorrow morning and doctor said it is for staging. All blood work is done to check all the organs. I am very anemic and worried that it will cause a problem in therapy. 

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Sorry for your diagnosis.

Not sure if this is pertinent or not but I did have a CT first then a PET before treatment then another one after Treatment.   Mid way through I also had another CT. 

I'm a fan of any scan due to radiation exposure and being severely clasterphobic but mine was for staging.  I went from stage one to four, obviously finding more than they realized.  My cancer NHFL, diplayed in a swollen lymph node in my jaw line.  The pet scan showed it was not just there but several places through out my body.  

Personally I wished I hadn't gone through the two CT, X-RAYs, ULtra sounds, image guided biopsies and just had the PET scan.

In my experience i went through many unnecessary tests that the PET obtained more information than all of them combined.

Good Luck!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

CT is the norm before chemo begins. They will measure the size of the nodes and what areas they are in for later reference . This is standard practice, and he is not omitting anything.

Rocquie's picture
Rocquie
Posts: 855
Joined: Mar 2013

Me too. I only had CT scans before treatment began and my first PET/CT after two chemo treatments.

A CT scan ordered by my Family Doctor resulted in a diagnosis of Lymphoma. A CT guided retropertoneal needle biopsy confirmed the diagnosis and I was referred to my Hematologist/Oncologist. He ordered an ultrasound guided excision of an axillary lymph node to determine the type of lymphoma. Also a bone marrow biopsy to confirm the stage three lymphoma the original CT scan had shown. (If I had bone marrow involvement the stage would have been stage four, but I did not).

Best,

Rocquie

 

 

Jazmin2
Posts: 18
Joined: Sep 2015

Are you on any kind of medication now? do we have to be on some kind of medication for rest of our lives? 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Unsure of whom you were asking this question of, but if first-line therapy is successful against NLPHL, there is no further treatment given.

Numerous forms of NHL do require follow-up drugs, sometimes for many years.  This is called "maintenance"  therapy, and the drug most commonly used is Rituxan.  But as I said, this should not be in your treatment future, Jasmin.

Jazmin2
Posts: 18
Joined: Sep 2015

I was just wondering if we all have to be on life time medications. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I am not, I only take B12 and folate because I'm a vegetarian.

I will tell you, my original treatment was to have Rituxan and then maintenance of Rituxan for two years. I went to a specialist at Dana-Farber Cancer Institute in Boston in May and he recommended  not to do maintenance for two years.  My first doctor told me I would need maintenance for two years and my specialist said there's  evidence or need for the two years of maintenance. I'm not sure what your doctor will tell you, we're all different as are our  doctors. 

 Good luck and I hope this helps .

Jazmin2
Posts: 18
Joined: Sep 2015

Saw the doctor today, he said CT shows some very small swollen nodes in my neck also. He asked for getting a PET done. He said it is very important to make sure about the stage of the disease. He is hopeful. 

So let's see!!! for now praying! :-) 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

 

Jaz,

Regarding your last line: Me too !

Be aware that even in stage IV, your disease is almost always (>90% ) put into full remission. When I awaited my bone marrow biopsy six years ago, I asked the doc what a postivie result would mean, and he said,

"Not too much. The treatment remains identical. Survival chances would reduce slightly, but not a lot."

max

Jazmin2
Posts: 18
Joined: Sep 2015

I am not afraid of death. I know having cancer or not does not mean that One dies or not. I just dont like to see people around me suffer. 

Scharfschutze15
Posts: 12
Joined: Sep 2015

Hi Jazmin,

I just joined this forum at someone's advice since I'm looking for help as the carer for someone who's had a rarer NHL but your post is the first I came to so I thought I'd offer some random thoughts and background. I've read a few hundred 'cancer diaries' over the past 18 months or so and learned early on that after the shock settles, information is so important in coming to terms with where you are and where you (might) be headed. I'm not a doctor and opinions below are based on a lot of research and experience, only.

My wife was diagnosed with a rare form of NHL in March of 2014 after being ill for 2-3 months. She completed very severe chemo in the fall of 2014 and has been in remission since November, with a couple of scares along the way, including a new one this week. It's been a very rough path and there's so much information and emotion to process that a single post here could never cover it. Some key points though, that I'd now tell anyone in your position or similar:

Depending on your insurance coverage, get to a major cancer hospital. Don't let this go to a provincial hospital with a less experienced oncologist. The difference in treatment approaches between smaller regional hospitals and major centers can be very significant and important. Your insurance company will favor certain hospitals in your state based on complex metrics but these basically boil down to survival rate. This is especially true if your diagnosis leads to the possible treatment option of a stem-cell transplant. There aren't too many hospitals that perform this process but you should look for an experienced oncologist at one of those centers from the beginning so the transition is smoother when you're less well equipped to make it. We bounced around several different hospitals in 3 states before we found what we're now confident is a really smart, very experienced and honest oncologist we can communicate with. Having that is important. So, if you live close to a major cancer hospital, good. If you're somewhere more remote, seriously consider a second opinion at such a hospital with a researched/experienced onc. Diagnosis with rarer forms of NHL (especially) is a minefield and not uncommonly mistaken.

PET scan is essential in staging diagnosis (CT can't stage nor realistically detail) especially with NHL cancers. If your doctor doesn't align with this then find a new one ASAP. I didn't read the whole thread/replies so you might have resolved this already, but mentioning just in case. Our current onc was shocked that the first onc didn't consider a PET essential pre-treatment and we never had one, nor knew better. Run a mile from any onc who doesn't know this with NHL.

For most NHL bone marrow biopsy should also be done ASAP as part of staging. Discuss this in detail with your onc if it isn't raised. Also note, staging for NHL isn't so formal as it is with some other cancers, like lung cancer. You can hear terrible things like 'STAGE FOUR' and see a tombstone but it's not the same concept, exactly, for NHL. Staging talks about spread above/below the diaphragm and impact on other organs. Don't assume a higher number here is grave news. People walk away from later stage cancers or live a long time with worth-living lives.

Don't rush into treatment. Get a second and even third opinion on diagnosis as well as treatment plan. Obviously, you don't want to dawdle but this is time well spent. Remember the choice on treatment is yours - you don't have to do anything the doctor tells you to do. Once you get all the information on diagnosis, treatment plans, consequences and chances of surviving 5 yrs+, take a little time to absorb it. Be sure you want to start on the very hard treatment options, that the chances of it working, based on medical advice you trust, are worth the struggle. This is a personal opinion, of course, but I hate the idea of 'cancer is a battle'; it implies if you lose it's because you just didn't fight hard or smart enough. Treatment isn't necessarily the right way to go for everyone.

Find a doctor who never puts your appointments on the clock - if you walk in with 101 questions, he or she needs to be willing and able to cover them so you walk out with knowledge in place of fear. Terrible sickness and death is obviously frightening but nothing on what your imagination will do to you. It's easier to face the challenges this will throw at you with as much knowledge as you can collect.

Be careful what you read online, especially in terms of survival data for NHL. It's a difficult disease to beat, certainly. It's also probably going to kill you one day, or be partially responsible. However, with each day that passes now, your statistical chances of being here in 5, 10 and 15 and beyond years goes up. Also, your quality of life for that time increases as treatments are refined. A lot of the mainstream data on NHL survival rates is very skewed. Many of the studies are focussed on older patient groups and don't sort mortality rates or causes, i.e. where an older patient dies due to something related to NHL, that is recorded as a NHL death, however the fact that they were diagnosed at 75 and died at 80 is not statistically sorted as a differential from someone diagnoses as young as you. So, if you choose to research data look for medical journal documents where the data is more cleanly profiled. Can be heavy reading but it was somewhat reassuring when we found some context to the numbers.

Chemotherapy is not the horror movie experience it's been portrayed as in movies and TV over the past few decades. Of course, it's very rough, especially for NHL where many of the more severe chemo regimens are used, but it's not so terrible. The medications for controlling nausea and vomitting are much more effective these days. Talk to the doctors up front on this - get the options and understand that there are lots. If the hospital favored drug (often Zofran) doesn't work so well for you, demand Phenergan or one of the alternatives. Don't be shy about saying 'this isn't working - I need something else'.

Even so, it will knock you down very hard. Often the treatment days are very uneventful. The second day can actually feel quite good. Days 3-7 can be really hard. The exhaustion is very dramatic, for most. The hair loss very traumatic for some. Some again go through this with some surprise at how it doesn't feel anything like as hard as expected. There's no way to know but again, the worst is something you can survive.

Recognize that chemo is almost killing you in order to save you. Especially with NHL chemotherapy, the bone marrow and immune system are wiped out. It can take two years afterward before you even start to feel like your getting back to your own self, pre-cancer. It can take significantly longer than that to get back to 99% of who you were before but 99% of people who get through, do eventually. You can expect all kinds of post-chemo symptoms, including a foggy brain, neuropathy, limb and nerve pain, stomach issues. We're only 1 year past the last chemo session and are still waiting for lots of these symptoms to list, however my wife's immunology dr. insists he sees hundreds of chemo patients go through this and expect to bounce back too soon. However, he also insists that 99% of people do bounce back. All these unpleasant or downright horrible side-effects are the price of surviving NHL, he would say.

Have an advocate with you all the time, if you can. Whether a spouse or sibling or friend, take someone with you to all appointments and treatments. They can record conversations, take notes, hold your hand. Later in chemo, if you have to go that route, you may wel find your memory becomes cloudy and big questions get lost. If the exhaustion hits hard, you'll sleep a great deal in the weeks between chemo sessions so having someone (or several people) around to help keep live moving is really important. Someone with you can help carry that load for you so you can focus on getting through.

Above all, I'd try to remember this, and this is the part I struggle with most as someone taking care of someone further down a road you're just embarking on. We're all born with a death sentence - there's no way out of that. You might only have weeks or months or you might have another 40 years. A bus might squish you the day you learn you're in remission. The bottom line is LIVE. Even through chemo or whatever treatment you may go with, will likely be hard, do the things that matter most to you now. Don't take time for granted. Don't take a diagnosis of cancer as some revelation that you're going to die - you already were and never knew when nor how. One of the possible upsides of this diagnosis, if you get it, and there can be a surprising number, is how much you can value life going forward.

Anyway, end of midnight ramble. I hope you get good news on diagnosis and in testing you find out one of the (many) other causes of swollen lymph nodes is your foe. If not, I hope some of the info/thoughts above help in some way.

S.

 

Jazmin2
Posts: 18
Joined: Sep 2015

I eventually got PET done and shows few (3) more hypermetabolic lymph nodes. But as per the doctor NLPHL is a very slow growing and he thinks chemo and radiation has lots of side effects. he said that he will keep an eye and blood test will be done every three months. 

 

Knowing that I have cancer and i should wait and watch makes me a little nervous. 

 

The only thing I hate about all this is that in the end it is my decision......WHY??? I am going to a top specialist, I should not be making a decion my doctor should. Telling me that it is my call is CRAZY!!!! I am as confused as anyone can get. Now everyone suggests that I should another opinion. 

Scharfschutze15
Posts: 12
Joined: Sep 2015

Hi Jazmin,

Having hypermetabolic lymph nodes doesn't in itself at all mean you have cancer. PET scan measures metabolism, the process by which cells use sugar to produce energy. Hypermetabolic means those cells are metabolising more sugar than is normal for that type of cell. This is important in terms of cancer diagnostic because cancer cells have a much higher metabolic rate than healthy cells, thus they "light up" the PET scan. However, a bunch of other things can cause this reaction, including various infections, inflamation and other things. Of course, this finding should be taken seriously, especially if you have other imaging or biopsy results that conclude similarly.

It might be that slow moving NLPHL, watching and waiting to look for changes is appropriate. It doesn't sound right to me but I'm not an oncologist.

It does sound like you should get a second opinion on the imaging test but I didn't see anywhere in either post if you'd actually had a biopsy on a swollen node? That's the only way to confirm this diagnosis. Imaging and bloodwork alone can't do that. Have you talked to your doctor about biopsy options?

Jazmin2
Posts: 18
Joined: Sep 2015

Biopsy was done during my appendix surgery and it shows NLPHL. This is how it all started. But even after all of this, Oncologist from John Hopkins suggest Wait and Wacth. 

Scharfschutze15
Posts: 12
Joined: Sep 2015

Jazmin,

Ask your onc why wait and watch is the right path, given it's making you so (understandably) anxious.

Find a second oncologist for a new opinion, even with John Hopkins great reputation. Call the pathology department at John Hopkins Hospital and get them to send the pathology material and reports to the new hospital/onc for the 2nd opinion. They're legally obliged to do so. You will have to sign a release waiver, only.

If they come back with the same recommendation, you'll feel more reassured. If not, you have something to work with.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

 

Jasmin,

I have studied NLPHL for many years now, as a layperson, of course.  I have never heard of Active Survelliance ('Watching and Waiting') recommended for NLPHL, ever. No other patient here has ever had it recommended as a treatment option for NLPHL that I can recall, pre-first-line treatment. Active Survellance is sometimes an option for relapsed, indolent disease.

Look again at the SECOND link that I provided to you above last week. This is from the chairman of the German Hodgkins Lymphoma Study Group, the largest long-term study of lymphoma in history.  It mentions Watchful Waiting for pediatric, Stage 1 NLPHL patients, but never for adults.   This link, also from the German Study (English), says the following regarding HL (this is NOT written in reference to NHL):

"Treatment should start as soon as possible after Hodgkins Lymphoma was diagnosed to avoid further progression of the disease."  This is of course a German study group recommendation, and may not be widely accepted as normative in the U.S. or other countries.

http://en.ghsg.org/treatment

If you look again at the THIRD link that I provided, (2013), A.S. is never recommended for ANY age group (section "Early Stage Disease"), but interestingly surgical removal of single, Stage 1 nodes is occasionally used in Stage 1, PEDIATRIC patients (section "Surgical Resecton Alone")

Treatements for early-stage NLPHL are slightly different, but EASIER (and shorter) than after it is a later stage of development (again, see the Third link).   What you have been told is incomprehensible to me. I would indeed get a second opinion.   It sounds almost like insurance issues could be involved.

Your hematologist saying that he is "hesitant to use radiation or chemotherapy" is also one for the record books...

Be aware also that blood panels for some forms of lymphomas are nearly worthless.  I was late-stage 3 NLPHL (very widespread throughout the body), but my labs just before beginning chemo were very nearly normal across the board.  This is not an uncommon observation here: Many stage 4 patients were diagnosed via scans while still having normal, or very close to normal, lab results.  It is important to get these panels done, but very often they will miss what a scan will catch.

max

incrediblyblessed
Posts: 5
Joined: Sep 2015

Jazmin -

 

As you know we were diagnosed with NLPHL on the same day. Mayo Clinic in Jacksonville did my incisional biopsy that discovered the NLPHL and the hematology oncologist there suggested 6 months of ABVD. Went to Moffitt Cancer Center in Tampa (which is the only NCI accredited cancer institute in Florida and is in the top 20 best cancer institutes in the US) and their recommendation was careful observation (repeat blood work and PET/CT in 3 -4 months) as this time or "watch and wait" they offered 8 Rutuxan treatments as an alternative if I was not comfortable with careful observation but said that they would not do chemo at this point with my age and particular circumstances. They said that they have several patients in their care who have been under observation for any where from 3 - 5 years who have had NO progression of disease. I'm now quite torn and am currently trying to get a couple more opinions. I didn't even know this was an option and honestly went for a second opinion more to confirm that the particular regimen of chemo that Mayo was recommending was the best one for this (most successful with least amount of side effects) and I walked into Moffitt expecting them to either agree with Mayo or say no, we would recommend XYZ chemo regime (say maybe CHOPP which I've read is also used sometimes). Please keep me posted on how you proceed and if you get any other opinions or info.  Thanks : )

 

Christine

Jazmin2
Posts: 18
Joined: Sep 2015

I am so confused myself Christine. Doctor at John Hopkins wants to go watch and wait, don't even want to offer me any Rituxan. I went to my local Onc. today and he suggested after looking at PET scan that he will put me on Chemo. He thinks I am very young (45) and should get this done and over with. But At hopkins the doctor thinks I am very young and will deal with lots of side effects of Chemo and Radiation. He said I have to go back every 3 months for blood work. He said he will not do CT scans every three months because they are harmful also. 

After my local doctor told us what he exactly wants to do, I told him about my visit to Hopkins on friday and the doctor's suggestion,  and then he said " Well we can go that way too". But in the end he said it is will be my choice. 

How can I choose! it is so confusing!! every case is so different. I am not an expert. Ofcourse none of my close family and friends will tell me EXACTLY what to do, it is a huge risk. 

Did they ever tell you the stage? This is one thing I don't know about. I guess it is stage 3 or 4. Because they see Iliac nodes left and right and one in my neck. 

The only thing I have a confirmation about is that it is very low grade, very slow moving cancer. No one seems to rush anything. I have no other complications just that I am anemic. DO you have any other major complications? 

As of right now, both Oncologist will talk to each other and will let me know. 

Keep me posted also, I want see how you proceed also. 

Jaz

Subscribe to Comments for "Newly Diagnosed NLPHL. "