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New NLPHL Diagnosis

Hockeymomof2
Posts: 4
Joined: Apr 2017

Hello,

Glad I have found this forum, I have been reading posts on here for a while as I waited for my biopsy results.  I have had two mesentric lymph node biopies and the 2nd one has come with a diagnosis of NLPHL.  The larger mass was found by accident on an ultrasound in Feb and since then I have had a CT scan and two biopies.  I am currently waiting to see an Oncologist (next week) so I am just reading up to be prepared for my visit with him.  No one has told me what stage yet, although they believe it is early as I had had an ultra sound 7 months prior and nothing was noticed - hoping they are correct!

Just wanted to introduce myself and I will continue reading the great info on here!

 

 

 

 

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

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
Posts: 4
Joined: Apr 2017

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!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

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

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

 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's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

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

lindary's picture
lindary
Posts: 657
Joined: Mar 2015

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's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Thanks Linda.

My earliest memories of retailers going out of business dates to around the late 1960s.  Some I recall who went under (at least throughout my region of the nation) were the following. Some of these might not have been nationwide, but I believe most or all were.  Limited to what a person 60 years old or thereabout would have seen fold...almost all of these were huge corporations, with hundreds or more locations.

 W.T. Grant; J.M. Fields; Montgomery Ward; Woolworth's; Sports Authority; Circuit City (current efforts to refloat); Eckerd Drug; Rexall Drug; Texaco (assumed by Chevron, still sells Havoline Motor Oil); Hess Gasoline (corporation is still in business refining, but has shuttered all retail operations; toy trucks still available online);  Kerr Drugstores; Pure Oil Company (refloated in the 1990s, now has over 300 stations);  Pontiac; Oldsmobile; Saturn Car Company; American Motors ("AMC'; previously Rambler Motors; parts of company became part of the short-lived Eagle Car line in the 90s); Delorean Motors (DMC); Plymouth; Saab; Howard Johnsons (bought by Wyndham; one Howard Johnsons restaurant remains in existence, in NY). B Dalton Bookseller; Waldenbooks; Kinkos (bought by FedEx); Thom McAn Shoes (all stores shuttered, brand still sold at KMart); A&P Grocers (for 60 years, the largest grocer in the US); Blockbuster;

Others seem to constantly drift in and out of bankruptcy, like Radio Shack.

For most, seeing these pass is saddening. My uncle was a regional manager for Montgomery Ward in the Kansas City, Kansas area; my sister-in-law had a KB Toy store, before it was bought by Toys-r-Us.  K.B. Toy sent her an award for "shutting down her location with great efficiency and in minimal time." Damn !

ShadyGuy
Posts: 407
Joined: Jan 2017

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
Posts: 184
Joined: Jul 2016

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

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

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

Rocquie

 

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

You have Max on your side and from reading his post over the last 4 months and doing my own research he is very knowledgeable. I was diagnosed with NLPHL the end of February. Mine had transformed to another more aggressive NHL type so I had both at the same time. Looks like yours was caught early. Almost all of what I have read those with this type of Lymphoma respond well. Max is much more knowledgeable on the ABVD treatment. I am receiving R-CHOP because of the NHL type I have that is more aggressive. I know there is nothing easy about hearing you have cancer. The treatments are never fun no matter how few side effects you have. Just remember there are better days ahead. Each trial we go through helps us I believe be a better person. I can say after never having any real health problems prior to this it has changed me. I am much more understanding with people that have health issues. Sometimes we do not appreciate our health like we should until something happens.

I have PET scan in 3 weeks and hopefully just 2 more treatments. Just take it one day at a time. No matter what you do if you have any questions come to the forum. Most likely someone has crossed that bridge and can give you some advice. 

Wishing you the best and praying for a great outcome!

 

Cammyboy
Posts: 1
Joined: Sep 2017

Hi,  I've been lurking on this site and others for the past 3 months reading about peoples' experiences and trying to understand as much about NLPHL. I was diagnosed 3A in early June and was put on Rituxin pluas ABVD. Happy to share I received the news the other day that I've shown complete response to the treatment after 3 cycles and just started the 4th. So happy! I'm a British expat living in Hong Kong and this was the last thing I expected to happen when we moved here 18 months ago.

I just wanted to say thanks to you all for sharing your experiences - I have found your posts on this and other discussions informing, encouraging and inspirational. In particluar Max, who is is a great source of knowledge.

Thanks

Cam

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

 Congrats! Wishing you the best.

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