CSN Login
Members Online: 14

Just diagnosed with NLPHL

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

Hi everyone, after years of something being wrong with me(I'm 45) and told its all in my head they finally figured out I have this disease. Had my pet scan yesterday the bone marrow biopsy is today second opinion is next week and treatment after that. Did anyone have sleeping trouble after diagnosis? I have barely slept in ten days.

coachmike
Posts: 147
Joined: Oct 2011

aaron...i am 34 yr old and was diagnosed with difuse large b cell lymphoma. I had a lot of anxiety from the diagnosis and was prescribed ambien to assist me in sleeping because I had lots of trouble trying to sleep too.
I pray that your treatment will cure your disease.

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Hi Aaron...Welcome to the group,
Actually, the first month after my diagnosis I was on the computer until wee hours of the morning trying to learn everything I could about my cancer, so there wasn't much sleeping. I was diagnosed with Follicular Non Hodgkins Lymphoma...stage 3, no bone marrow involvement. I remember sleeping in bits and pieces of time. My anxiety was so high that even when I did fall asleep from pure exhaustion, it would only last a short time. In time you will figure out a routine and sleep will be easier. Good luck on your BMB today. Try to take it one day at a time, but I know how hard that is to do, especially in the early period after diagnosis. If you are not already taking something for anxiety, you might consider talking with your doctor. No need to be more stressed out than necessary. You take care and please share back how things are going with you. Best wishes...Sue
(Follicular NHL-stage3-grade2-typeA-Dx 6/10-age 61-considered stable)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Aaron,
Yes and I was the one up answering Sue all night because I could not sleep either. It will takes it toll on you thats for sure. It will take a while to figure out a routine as Sue says. You have been hit with some startling news. It really has not sunk in yet. Just remember it is treatable and new strides and treatments are being met every day. I had a Follicular NHL disgnosis. Now in remission. I was grade 1 and stage 4 which means bone involvement. John

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Hey John..."LOVE" this picture of Katie...her long hair is so pretty! I know that sweet smile of hers just melts gramma and grandpa's heart...how could it not! Sue

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

I appreciate all the comments, I'm doing my best to keep my chin up. Perhaps after the staging is complete no matter the result the anxiety will let up a bit. I'll keep you all posted, this LPHL is an odd little variant.

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi Aaron,
Just wanted to welcome you to the group! Hope your BMB wasn't that bad and you get your results soon. My dx is different than yours, mine is Splenic Marginal Zone NHL stage IV, with tumors in spleen, liver, and bone marrow involvement. I was diagnosed in July of last year and I remember that I couldn't sleep well the first couple of months, just thinking and thinking. I think we all know what you're going through! Hang in there and please let us know what the Dr's said. Take care

Sincerely,
Liz

ta8631
Posts: 40
Joined: Jun 2012

I literally havent slept n months :( stress n side effects from the chemo haven't helped. Good luck n just look forward to the long life u have to live :)

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

The meds they gave me for the BMB gave me a bit of a rest this afternoon. Right before she stuck me with that huge needle my doctor told me there was no organ involvement per thePET scan whew! I really thought there would be. So if I can dodge the bone marrow bullet it looks like 3a and then it's off to treatment. Hang in there Ta I'm sure we'll be swapping chemo stories in no time.

CHRIS M001's picture
CHRIS M001
Posts: 23
Joined: Jun 2012

Hang in there Aaron. It is very normal not to sleep and be very scared. I am 41 yrs old and was diagnosed with Anaplastic Large Cell Lymphoma (t-cell) last October. I have had 3 PET scans 4 CT scans Heart scans Bonemarrow biopsy's and all the good stuff we get to go through. My chemo was from Nov 22nd to March 8th. I just found out last Thursday that I am in remission. After I was diagnosed I was very depressed and coulnd not believe this was happening to me. The more people I talked to about my cancer the more I realized how many people have cancer now or have had it in the past. Boards like this and local support groups are a big help. I am fairly new to this board but what you will find out is everyone here truely cares about each other. Everyone who has had cancer will always have that special bond. Dont be afraid to ask your doctor for Xanax or Ativan (for sleeping and anxiety). Keep us up to date on how things are going. You can do this.

jimwins's picture
jimwins
Posts: 2057
Joined: Aug 2011

Hi Aaron and welcome to the group. Anxiety and resultant sleep difficulties
are very common with this early on. I was presribed Ativan for anxiety and it really helped. I also got ambien for use during treatment because the prednisone wouldn't let
me sleep. Even with a strong dose of ambien and ativan, I could only sleep
about 3 hours at a stretch during my treatments.

Again welcome and you'll find wonderful and supportive folks here.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

miss maggie
Posts: 929
Joined: Mar 2010

Dear Aaron,

When if was first dx in Sept 2009, not only could I not sleep, the depression was unbearable.. I would lie in bed, mentally exhausted. Eventully when I learned more
about my dx, and the prognosis, a cloud was lifted from my heart.

Give it time until you find out more. I will pray for you. Love Maggie

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

I actually got my first good sleep last night. It was probably a mix of the drugs for the BMB and the relief of the PETscan showing no organ involvement. Hopefully restful sleep will continue. How is everyone feeling about the supreme court ruling? I think it protects folks like ourselves that need follow up monitoring and or care. I don't want to stir up a hornets nest of debate! I'm just curious what y'all think.

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Hi Aaron,
So glad you got a decent nights sleep and I'm very happy your scan showed no organ involvement. My BMB was very painful...sounds like yours went pretty good. You will find as each test gets completed, your stress will go down and sleep will come easier. Thinking good positive thoughts for you. Hang in there...Sue (FNHL-2-3A-6/10)
No comment on the supreme court ruling.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Aaron,
Instead of listening to the bleeding heart liberal news stations on the local commercialized TV you should listen to the the conservative news stations like FOX News. The results of the Socialistic health plan will curl your toes.If we are past 50 Years of age,but plan to be one day, we may have some real problems with our health insurance as time goes on. A lot of medications and test needed are already being talked about that may be no longer covered.America is going to Hell in a handbasket very quickly.Only God can save America now. We can help a little come November.I know this is a political statement but people can not sweep this under the rug. Its real and it is going to happen. John
BTW:I have been known to speak my mind on here a few times and also known to be flagged for my comments,but Oh,Well.

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

You'll receive no flag from me. I'm glad to hear what you think, I hope more folks respond with their thoughts.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Aaron,
I was never inferring a flag would come from you. There was a poster on here at one time that constantly flagged a lot of my responses. After checking into it I could find nothing about who it was. After a process of elimanation I finally figured it out. Then a poster wrote me a private message and said they also checked it out and she got an E-mail from Greta(the one that oversees the board) and for some reason gave the persons name who was doing all the flagging. It was the same one I figured it was. They very seldom post any longer so I may be safe. Keep us updated. John (FNHL-4-1A-5/10)

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

I've never understood flagging, as long as one makes their points in a collegial fashion they should always speak their mind freely. That's the true beauty of our country.btw thanks for the well wishes John, I begin 6 rounds of r-abvd in 2 weeks and can use all the good ju-ju I can get ;). Aaron

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Aaron,

You are correct, NLPHL is uncommon: HL is much less common than NHL. Among HL lymphomas there are five main variants, and NLPHL constitues few than 5% of those cases. Among all new diagnoses of lymphoma, NLPHL constitues around 1%. Non-Hodgkins Lymphoma (NHL) includes about 25 variants.

From what you mentioned in your personal information, it sounds like yo are most likely Stage 1. Sometmes early-stage is treated only with radiation, sometimes some chemo may be added.

Ta 8631 at this site and I were both Stage 3 at diagnosis and we both did, or are on, chemo. I did a long series of a combination therapy (five drugs) know as "r-abvd." Ta is currently on chemo, and receives "r-chop." Both are commonly used for late-stage NLPHL.

I have been in complete remission, and am at my 3 year anniversary. Ta is just getting started.

We are all here with a good bit of information for you. I tell people I "learned medicine" the hard way: By being sick a lot !

May your treatment be quick and easy,

max

.

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

Thanks max, I'm certainly stage 3 because it's in the armpit and groin on opposite sides of the diaphragm. It looks like I will also receive 6 cycles of r-abvd . Found out yesterday that there is no organ involvement now I'm waiting on BMB results. I'm so happy your cancer free after your treatment and I plan to join you soon at that great place! If you feel inclined perhaps you could tell me some of your experiances while on treatment. I've got a 5 year old to chase around and care for during all this, I sure hope Ive got some energy to do it ;). Thanks for the kind words and insight max. Aaron

ta8631
Posts: 40
Joined: Jun 2012

The 5 year old wont slow down for you :) Both of my kids have been the best energy booster ever. When i am tired just watching them play helps boost my energy because i am determined to get in there with them... i have been pretty lucky and havent had to much fatigue so they haven't seemed to notice anything yet. Not sure how i am gonna explain to my son whats going on when i start losing my hair but hopefully neither him or my daughter will remember this by the time it is over.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Aaron,

Yes, if you have involvement in the axilary (armpit) and groin area, to would be Stage 3. I had no organ or bone marrow involvement, but had large nodes across the chest and axilary region. I never had a lymphoma symptom (except extreme fatigue), and never felt a node anywhere. My axilary biopsy was about the size of a golf ball, the surgeon told me later.

The bone marrow test gets mixed reviews: Some say it is agonizing, others say it little affected them. As I recall, it was painful at the time, but I do not recall any pain later, even the same day. It is a somewhat "primitive" technique, however.

I did 12 cycles of r-abvd, or a six month treatment. You are a bit younger (I began at 53), which will help minimize side-effects. Generally, the fewer treatments, the fewer the side-effects, or the weaker they will be.

I had an assortment of fairly serious side-effects. Your experience will be DIFFERENT, and most likely EASIER. In general, my first one or two cycles were not too severe, although I did feel like I had the flu immediately, and this lasted for seven months.

Your hair will fall out after about three weeks. I lost even my eyelashes and eyebrows. But, it will rerturn within a month or so after treatment ends.

I got fairly severe neuropathy (numbness) in my hands and feet from the Vinblastine. I still have some of this numbness today. Some folks get it severely, some get none; most are somewhere in-between.

I had lung toxicity from the bleomycine, and still suffer from shortness of breath, but this may be because I had suffered severe chest injuries years earlier in an accident.
Around 90% of users suffer no ill effects from bleomycin.

I lost all sense of taste after about two months of treatment, but later regained normal taste.

I would caution againt fatigue. By the end of treatment, I was sleeping around 17 hours per day, and had lost about 15% of my beginning weight.

Do get an IV PORT ! This is something I highly recommend. Also, tell the surgeon that you want an IV port that is "CT Contrast compatable."

I also recommend to everyone the very hig-quality site "chemocare.com."

May your road be easy. For patients under 40, NLPHL has a 90%-plus complete remission rate at five years. But, do not fixate on "numbers." Just remember that it is a very treatable disease.

max

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

It's amazing how they find this stuff, I had a biopsy on my axillary node 7 months ago and it came back benign. Like you on an unrelated test(ct scan) they saw more nodes and the pathologist retested the sample along with folks from the university of washington and came up with the new diagnosis. I'm going to start a new thread about this but did you go through chemo with pets in your house? Ta I suspect my daughter will put me in the same position your children have put you, we have to keep moving cause our little ones leave us no choice. Max, are there others like us on this board with the same subset? I'd be very curious to hear other diagnosis stories. Frankly id bet the odds of finding this ( thing of ours ) before stage 3 is remote.

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

It's amazing how they find this stuff, I had a biopsy on my axillary node 7 months ago and it came back benign. Like you on an unrelated test(ct scan) they saw more nodes and the pathologist retested the sample along with folks from the university of washington and came up with the new diagnosis. I'm going to start a new thread about this but did you go through chemo with pets in your house? Ta I suspect my daughter will put me in the same position your children have put you, we have to keep moving cause our little ones leave us no choice. Max, are there others like us on this board with the same subset? I'd be very curious to hear other diagnosis stories. Frankly id bet the odds of finding this ( thing of ours ) before stage 3 is remote.

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

I just want to say THANK YOU to all of you who responded to this thread with all the kind thoughts and great info,y'all are great. You have all helped to make this week and dx much more bearable. Aaron

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

I'm running out the door to work in 102 degree heat. My diagnosis was odd: I had severe chest pain, and the docs admitted me to hospital for angina. Turned out my heart was fine: It was a huge node pressing on my heart ! Without that chest pain, I would be dead today, since I never had any symptoms of lymphoma, except fatigue.

I have lots of "Lymphoma Stories," if you wish to hear them...

max

.

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

I'd love to hear all the stories your willing to tell max. I'm not sure if its providence or dumb luck that got me to my dx . 102! Where do you live Texas?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Not Texas, SC. It has been over 103 for three days in a row (actually 105 here twice), and will be over 101 through Monday.

Let me know the exact treatment your doc proposes. I recall being very thiankful when the PET showed no organ involvement, and the BM test was negative.

Don't melt !

max

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

I'm over here just outside of Seattle in kent so the weather is just a bit kinder. We've been working like crazy trying to get this house ready for a chemo patient to live in. We're probably overdoing it a bit but who knows. I think we've talked ourselves into letting two of our 5 pets go(ouch)because we believe it will put me in a safer position regarding infections. To tell you the truth were not at all certain thats enough but I cannot find any solid info on having chemo with pets in your home. As far as treatment goes I'm leaning toward r-abvd but I'm holding off final call until my second opinion on Thursday. I'll get my final staging on that day as well, I'm pretty sure I'll be 3a but who knows.

Out of curiosity max, I'm sure you didn't have night sweats but did you ever spontaneously start sweating for no appearant reason or during eating? I'm not running consistant fevers so im just curious if it has something to do with the HD. The docs don't seem to have any answers so I figured I'd go right to the voice of experience. Have a good one Max, stay cool out there. Aaron

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Aaron,

You look too much like Kenny Chesney to live in the great Northwest !

We hit 107 yesterday at the airport -- an all time high. This is Arizona weather, totally unusual for any part of SC. Today is forecast to be much cooler.

I have not read a lot about the issue of pets. We kept our cats inside, and never had an inside dog. I took a neulasta shot two days after each infusion (which causes the bone-marrow to go into hyper-production of WBCs). My WBC counts stayed around 16,000, which is way high. The doc told me that my resistance should therefore be pretty good, despite the chemo. Of course, use common sense, and avoid crowds, etc. Keep a bottle of hand sanitizer with you all the time. I used to see a good number of patients at my infusion center wearing masks, but I never did. I believe that some chemo combos do WBC counts worse than r-abvd does. That is, some folks on various drugs are not so lucky, and do have low or marginal WBCs, even after neulasta, so you will just have to see how your results go.

Night sweats (a "B" symptom) are uncommon in NLPHL; over 90% do not have "B" symptoms with NLPHL, I have read. Before I started chemo, I never had ANY symptom of lymphoma, and I never had the odd daytime sweats that you describe. Actually, I felt chills on the drugs most of the time, and could not stand being outside in winter, even for a few minutes. Rituxan and a couple of the other drugs cause flu-like symptoms in many people, including chills. I had muscle aches from my the second day after my first infusion, until I finished six months later. It was rough, needless to say. The flu-like feeling hit me faster than anything else: neuropaty, hair loss, etc., all came much later.

My worse side-effect was lung toxicity from bleomycin, but I was older (53 beginning therapy). About 10% of bleomycin users have toxic reactions, which cause shortage of breath, but that means, of course, that 90% have no negative experience with it.

Chemocare.com has excellent descriptions of all aspects of chemotherapy. It might meniton house pets. Go to "Chemotherapy Drugs" for drug-specific info.

Let us know what treatment you decide upon.

max

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

Max, I'm curious what made you go with r-abvd instead of r-chop like Ta is taking? Ive been trying to research the differences in efficacy between the two and can't come up with much. I sure wish they had a clear concencious on how to treat NLPHL .

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Aaron,

See what I wrote on the other thread regarding the combo choice. For NLPHL, r-abvd is more common, both in the US and Europe. I suspect that either is excellent.

max

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network