New NLPHL Diagnosis

Wecome, Mom

NLPHL is a rare but very indolent (non-aggressive) form of Hodgkin's. Over the years only me and a handful of others here have had it, but a spate of new members recently have been diagnosed with it.

It does sound like your disease is incipient, but late stage Lymphomas are ordinarily about as easy to cure as earlier stages, something almost unique to Lymphomas.

I would just caution that you ensure the quality of the pathology report, as NLPHL is easily misdiagnosed. Mesentary nodes especially need to rule out Peritoneal malignancies, which are even rarer than NLPHL.

I hope you share what you learn in the forthcoming meeting,

max

Hockeymomof2 said:

Treatment for NLPHL

Hello Max,

Just touching base, I have seen the Onc and now have a treatment plan.  I will start 6-8 cycles (# dependant on results of testing I am doing now) of ABVD on June 2nd, he is also trying to get Rituximab (due to CD20 expression) for me through my private insurance as currently this drug is not covered by OHIP (Ontario Health Ins) as it is not recognized in treatment protocals from Cancer Care Ontario for Hodgkins Lymphoma (just non hodge) - fingers crossed my insurance will cover! He is also suggesting 20 radiation sessions at the end of Chemo.  I see a Radiation Onc tomorrow to discuss further.

I have had a number of tests and scans in the last week, another CT, MUGA, Bone Marrow Biopsy and have a PET scan scheduled for Thursday.  I will get the results of all of these next Tuesday (May 30th) when I see the Onc for the last visit before treadment begins.

As all this draws closer I am starting to feel very nervous about what is to come and how I will handle it.  To top it all off I have come down with a bad head cold which I am trying to shake before next week.  You all are an inspiration and I greatly appreciate you sharing your experiences so people like me can learn about the path of others in a similar circumstance.

Be well!

 

I'm glad you're moving forward well, Hockeymom.

I'll make two observations: 

1. The insurance unwillingness to pay for Rituxan matches what I said: Hodgkin's ordinarily has no CD-20 cells, only the rare NPLHL does. That is why Rituxan is routinely regarded as "a NHL drug." Getting an insurance company to recognize this will be Herculean task, maybe impossible. But ABVD without Rituxan is nearly always very successful against NLPHL regardless.  I know that it is confusing, as it is a confusing strain of HL, and has even in the past been classified as a rare, indolent B-NHL substrain. In some nations today, last time I read on the subject, NLPHL is still classified as indolent NHL.

2. Do not confuse ABVD "infusions" with ABVD "cycles." Six "cycles" is almost always the "high end" of ABVD dosing, for people with Stage III or IV (I received 6 cycles myself for disease everywhere from the neck to pelvic region, for instance). Eight cycles is almost unheard of, and is used rarely for extremely advanced Stage IV disease (I have heard it mentioned once or twice over the years here).  The problem with 8 cycles is that it almost always exceeds recommended lifetime doeses of a few of the drugs.

But 1 "cycle" of ABVD is 2 infusions of the drugs, one each 14 days. In other words, one "cycle" is a month's worth of treatment.  Hence, my 6 cycles lasted a full 6 months, and was 12 infusions.   It may be that you were correct all along, but 8 cycles is, as I said, extremely rare, and would suggest worry on the oncologist's part for some reason.  Obvously then, 6 infusions (more likely in your case) of ABVD would equal 3 cycles.  Radiation, if you get it later, is very easy, most people report few or no side-effects, at least short-term.  Minor skin burning at times, hair loss if applied near the upper neck etc.

One good thing about ABVD is that its cycle is one of the simplest in all of chemo: All of the drugs are given on the same day, each time; no staggering or doing differing drugs on differing days. The logistics of this are much easier than many other regimines.

I suspect the oncologist mentioned 6 "infusions," especially since he also mentioned the radiation. Radiation is seldom used on Lymphoma patients, except in early-stage, minor cases.   It seems that you are still what I suggested before: Stage I or maybe Stage II, without widespread or bulky involvement.  Please do clarify.

You should achieve full wellness from all this within two months or less,

max

Max Former Hodgkins Stage 3 said:

I'm glad you're moving

I'm glad you're moving forward well, Hockeymom.

I'll make two observations: 

1. The insurance unwillingness to pay for Rituxan matches what I said: Hodgkin's ordinarily has no CD-20 cells, only the rare NPLHL does. That is why Rituxan is routinely regarded as "a NHL drug." Getting an insurance company to recognize this will be Herculean task, maybe impossible. But ABVD without Rituxan is nearly always very successful against NLPHL regardless.  I know that it is confusing, as it is a confusing strain of HL, and has even in the past been classified as a rare, indolent B-NHL substrain. In some nations today, last time I read on the subject, NLPHL is still classified as indolent NHL.

2. Do not confuse ABVD "infusions" with ABVD "cycles." Six "cycles" is almost always the "high end" of ABVD dosing, for people with Stage III or IV (I received 6 cycles myself for disease everywhere from the neck to pelvic region, for instance). Eight cycles is almost unheard of, and is used rarely for extremely advanced Stage IV disease (I have heard it mentioned once or twice over the years here).  The problem with 8 cycles is that it almost always exceeds recommended lifetime doeses of a few of the drugs.

But 1 "cycle" of ABVD is 2 infusions of the drugs, one each 14 days. In other words, one "cycle" is a month's worth of treatment.  Hence, my 6 cycles lasted a full 6 months, and was 12 infusions.   It may be that you were correct all along, but 8 cycles is, as I said, extremely rare, and would suggest worry on the oncologist's part for some reason.  Obvously then, 6 infusions (more likely in your case) of ABVD would equal 3 cycles.  Radiation, if you get it later, is very easy, most people report few or no side-effects, at least short-term.  Minor skin burning at times, hair loss if applied near the upper neck etc.

One good thing about ABVD is that its cycle is one of the simplest in all of chemo: All of the drugs are given on the same day, each time; no staggering or doing differing drugs on differing days. The logistics of this are much easier than many other regimines.

I suspect the oncologist mentioned 6 "infusions," especially since he also mentioned the radiation. Radiation is seldom used on Lymphoma patients, except in early-stage, minor cases.   It seems that you are still what I suggested before: Stage I or maybe Stage II, without widespread or bulky involvement.  Please do clarify.

You should achieve full wellness from all this within two months or less,

max

 Max,

just wanted to let you know I have read many of your post. I also have NLPHL as well as NHL T cell rich B cell Lymphoma. While I know that adds an extra twist for me over most of the people who have posted I appreciate that you still post. Your post really helped when I thought maybe this was so rare I might not have a chance.

I am taking RCHOP because of recommendations from Vanderbilt,MD Anderson and 2 local onc. I wanted to make sure I took the right treatment since both types are so rare. I just finished treatement 4 of hopefully 6. 

PET scan and results in 2 weeks. Thanks again for staying active on the forum. 

Sandy Ray

Max Former Hodgkins Stage 3 said:

Super

Sandy,

Sounds like you are well on track to wellness. Some docs and medical centers do prefer R-CHOP for NLPHL, so it is not that unusual.  I would estimate in the US that treatment for NLPHL runs about 85% ABVD, 15% CHOP. I believe Stanford for instance also prefers R-CHOP for NLPHL. Several European countries use R-CHOP.  Three of the drugs are the same anyway.  (Adriamycin and Rituxan are in R-CHOP and R-ABVD. While R-CHOP uses Vincristine, R-ABVD uses the virtually identical Vinblastine.)  But you are getting the dreaded Prednisone, which I never had.

I would assume the PET will be all clear.  Do have the doctors do long-term follow-up because of the T-Cell mention.  It might be that your lab just analyzes stuff better than most and caught the T-cells, and that they are actually usually present with NLPHL anyway, but I do not know that.  It would be worth your while to email Po and keep in touch with him regarding T-cell monitoring.  My oncologist has put me in Lifetime Followship, meaning that I get a touch exam and blood panels every year forever.  ALL NLPHL has a 15% lifetime chance of relapse, but I view that as an 85% liklihood that it will not relapse -- pretty good odds in the cancer business.  Vanderbilt is among the best; my surgeon, who has done 5 operations on me over the last 7 years, was trained at Vandy.  I was born in Murfreesboro.

Like your pic.  Hoping to go out with my son this afternoon to the range and shoot the 300 Blackout conversion he bought for his AR.  So cool how modular those guns are: he can go from 556 to 300 in under 2 minutes. Most deer is hunted in SC with 30-06 or 308, but I prefer smaller calibers: .223, .243, .30-30.   I own an old Winchester 30-30 cowboy gun my dad bought at Western Auto. Does anyone remember 30-30s ? Does anyone remember Western Auto ? 

I taught history for a year, and know that most people don't remember last week.

max

I was working for General Finance in Chgo when they bought the accounts for Western Auto customers in Chgo. I don't remember if they were going out of business or just getting out of the "financing" business.

Max Former Hodgkins Stage 3 said:

Super

Sandy,

Sounds like you are well on track to wellness. Some docs and medical centers do prefer R-CHOP for NLPHL, so it is not that unusual.  I would estimate in the US that treatment for NLPHL runs about 85% ABVD, 15% CHOP. I believe Stanford for instance also prefers R-CHOP for NLPHL. Several European countries use R-CHOP.  Three of the drugs are the same anyway.  (Adriamycin and Rituxan are in R-CHOP and R-ABVD. While R-CHOP uses Vincristine, R-ABVD uses the virtually identical Vinblastine.)  But you are getting the dreaded Prednisone, which I never had.

I would assume the PET will be all clear.  Do have the doctors do long-term follow-up because of the T-Cell mention.  It might be that your lab just analyzes stuff better than most and caught the T-cells, and that they are actually usually present with NLPHL anyway, but I do not know that.  It would be worth your while to email Po and keep in touch with him regarding T-cell monitoring.  My oncologist has put me in Lifetime Followship, meaning that I get a touch exam and blood panels every year forever.  ALL NLPHL has a 15% lifetime chance of relapse, but I view that as an 85% liklihood that it will not relapse -- pretty good odds in the cancer business.  Vanderbilt is among the best; my surgeon, who has done 5 operations on me over the last 7 years, was trained at Vandy.  I was born in Murfreesboro.

Like your pic.  Hoping to go out with my son this afternoon to the range and shoot the 300 Blackout conversion he bought for his AR.  So cool how modular those guns are: he can go from 556 to 300 in under 2 minutes. Most deer is hunted in SC with 30-06 or 308, but I prefer smaller calibers: .223, .243, .30-30.   I own an old Winchester 30-30 cowboy gun my dad bought at Western Auto. Does anyone remember 30-30s ? Does anyone remember Western Auto ? 

I taught history for a year, and know that most people don't remember last week.

max

you guys really roll out the memories - Western Auto! Now thats a blast from the past! I too have the black rifle disease and own a bunch of them I built myself - 5.56, .223, .458 SOCOM, 300 BLK. Next project is an AR-10 pattern rifle in 7mm/08 And piston operated. Quite a challenge. Lot of machining. Odd thing is I rarely ever shoot guns except for my annual deer trip to Grayson Highlands where I use a muzzle loader. I just like the mechanics of them and making them work with both gas impingment and piston systems. I have to figure out who to leave them to. No one wants to live in the cabin and no one likes guns. My imminent demise means my handcrafted firearms will go unappreciated. The very large cabin I built and love in the mountains will be sold at auction. The legacy of lymphoma. Its a big part of being in this condition. Things just didn't work out.

PBL said:

ShadyGuy,

ShadyGuy,

I do not know you, although I have read your posts here. But I feel that your writing about your "imminent demise" (and I do hope it is not as imminent as you make it look) and some of the preoccupations that this prospect brings about, should not go unanswered.

No matter when we leave this life, and whatever the cause or manner, the objects we have surrounded ourselves with remain behind us. Thus, maybe they are to be enjoyed while we live, and not worried about for a future we will not see. Your family, friends, neighbors may have no interest in guns or cabins in the mountains but that does not mean that they do not love you or value your presence, nor does it mean that they will not cherish your memory.

Our individual life is always finite - even if we tend to forget that unpleasant truth. Keep enjoying whatever gives you pleasure for as long as you can.

PBL

Very nice post! Good thoughts for all of us. Thank you.

Rocquie

 Congrats! Wishing you the best.