recently diagnosed with NLPHL and scared out of my mind

Welcome
Hi ta8631 and welcome to the site. You will find lots of
caring and supportive folks here and soon others will respond.
I'm sorry you have to be here but you will get through this.
Lymphoma is very treatable and there are many success stories here.
I know how scary it is. You've got friends here who have been through it.

I was treated with R-EPOCH which is like RCHOP with another drug
(Etopiside). People react differently to treatment but the nurses and
staff will monitor you and give you medications to control/prevent or
reduce side effects.

Being scared is normal. Getting medication for anxiety helped me a great
deal (Ativan).

A positive attitude and humor are free weapons in this battle. By the
third cycle, you will be more comfortable as you will know what to expect
for you. I was very fortunate in that I didn't have any really horrible
side effects.

My treatment was given round the clock in the hospital over the course of
five days, six cycles. I started losing my hair big time right between second and third treatment. I basically had it all shaved off when it started falling out. My family
and I found fun hats and "dew rags" for me to wear. I'm relatively hairy so it was
a flashback to pre-puberty when I lost all of that too .

PREDNISONE - One thing you'll hear many discuss is Prednisone. It made me bounce off the
walls at times, couldn't sleep, increased my appetite - some days I ate 5 meals and asked for ice cream or cereal at 3:00am from the nurses station.
My emotions were kind of intensified and sometimes I didn't have a filter for
my mouth . Everyone understood it was the prednisone. After the prednisone wore off,
I pretty much crashed for a few days.

FATIGUE - Generally increased fatigue as I progressed through the cycles. I tried
to rest as much as I could

CONSTIPATION - The chemo can cause constipation. I learned to start taking Senokot
the day before my treatment started. They also gave it to me everyday during treatment
and told me to take as needed after. I tried to take walks everyday dragging that
dang IV pole with me through the 9th floors of three buildings that were interconnected.
The walks helped some with the constipation.

ACHEY BONES - NEULASTA - A drug which is given to help build your blood counts after a cycle can cause "achey bones". For me, it was my hips/lower back and sternum (breast plate) that hurt. I took pain medication during this time so I could sleep. It only lasted for about 2-3 days. While your blood counts are low (lymphocytes in particular), you need to avoid crowds, sick people and raw foods.

FOOD - I learned to avoid eating anything acidic during treatment and
for a few days after. I had one mouth sore my first cycle and I think it
was brought on by eating salsa. So after that, I avoided anything acidic
and didn't have the problem again.

As many say, take things one day at a time and focus on the end result. Though
this is not a picnic, you will get through it.

It would help if you provided more information in the "about me" section of your profile.

I'm sure you will hear from many of us soon.
Please know you are not alone in all of this.

Hugs and positive thoughts,

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

ta8631 said:

Thank you for your insite...
Thank you for your insite... i will update my about me right away :)I know i have a long road ahead of me and at this point i am so angry that i have this i haven't had time to be sad which is definetly starting to effect me I am taking one day at a time and just keep thinking that by god giving me this he knew i could handle it and someone else couldnt.

Thanks for updating about me
I see you started working on your "about me". Thanks,
that helps everyone .

Now I know you're a woman and you're in your thirties!
Your age will be an advantage. You may just sail through
this with very little hitches!

Hugs,

Jim

NLPHL
Ta,

Wow ! I finally run across someone who has the same disease I had. You may know that it is very rare. It is also one of the slowest-moving of lymphomas (what the docs call "indolent").

My doc gave me a differnt approach from what you are receiving, r-abvd. Your doc is apparantly approaching the disease from more of a NHL direction. NLPHL is not easily classified as either HL or NHL; it is a sort of anomaly between the two. Because I was a bit older at onset (53), I had a lot of serious side-effects from my drugs. I have not had yours and therefore cannot say a lot about them.

What Stage are you ? Hopw long is your proposed treatment ? These factors will suggest what sort of "ride" you are in for.

Hair will stay around until after the second treatment. By my fourth treatment, I had neuropathy (numb hands and feet) very badly, no sense of taste, no hair (including facial), and was extremely fatigued. My nails turned black, and I felt like I had the flu all the time.

But, I was on different drugs. Your experience may be much milder.

I am very interested to hear back from you. As I said, NLPHL is about 1 in 1 thousand lymphoma cases, so it is not as standardized in treatment approach as most other strains. As I said, doctors still argue over whether NLPHL it is really a form of HL or NHL (the "official" line is that it is HL).

Either way, the disease responds VERY WELL to treatment.

We are all here for you !

max

Max Former Hodgkins Stage 3 said:

NLPHL
Ta,

Wow ! I finally run across someone who has the same disease I had. You may know that it is very rare. It is also one of the slowest-moving of lymphomas (what the docs call "indolent").

My doc gave me a differnt approach from what you are receiving, r-abvd. Your doc is apparantly approaching the disease from more of a NHL direction. NLPHL is not easily classified as either HL or NHL; it is a sort of anomaly between the two. Because I was a bit older at onset (53), I had a lot of serious side-effects from my drugs. I have not had yours and therefore cannot say a lot about them.

What Stage are you ? Hopw long is your proposed treatment ? These factors will suggest what sort of "ride" you are in for.

Hair will stay around until after the second treatment. By my fourth treatment, I had neuropathy (numb hands and feet) very badly, no sense of taste, no hair (including facial), and was extremely fatigued. My nails turned black, and I felt like I had the flu all the time.

But, I was on different drugs. Your experience may be much milder.

I am very interested to hear back from you. As I said, NLPHL is about 1 in 1 thousand lymphoma cases, so it is not as standardized in treatment approach as most other strains. As I said, doctors still argue over whether NLPHL it is really a form of HL or NHL (the "official" line is that it is HL).

Either way, the disease responds VERY WELL to treatment.

We are all here for you !

max

PS ...

Ta,

I just recalled a few more things to mention. My next-door neighbor went on r-chop six months before I got diagnosed with lymphoma also. He received his r-chop as an IN-Patient. I believe this is the norm fo r-chop (I received all of my infusions as an outpatient at my center's infusion center.) He was a big guy, and he was skinny when finished. It can be a rough road.

I am not being a killjoy, I am just telling you that you have to have a lot of fortitude to fight this nasty disease. He was about 35 at the time, and when he came home from infusion, he never got out of bed. I thought that he had moved, so seldom did I see him !Literally, he only left the interior of his home for infusion, and was on his back the rest of the time. I do not know if this is common at all, and you may have a much easier time of it. As I mentioned before, I had a hard time on chemo (I had a lot of earlier trauma and sickness). By the end of my 12 cycles of treatment (six months), I was sleeping about 17 hours per day. This is NOT the norm. Some folks continue to work throughout treatment, for instance.

Since you will most likely be an inpatient, I am sure they will intall an IV port for you. This is a MUST ! It makes infusion much easier.

I always recommend patients to chemocare.com. A great authoratative website, well regarded by professionals. It will describe all of your drugs for you.

Max

Max Former Hodgkins Stage 3 said:

Yo !

Ta,

Please do not be ashamed of a disease all people of all classes get. Just be a pillar of strength and get yourself well. I know it is hardly "luck," but NLPHL is much more treatable than many other forms of cancer, so just ride out the storm !

NLPHL almost never has "B" symptoms (fewer than 10%). You cannot "hide" this thing. You will lose all of your hair; I even lost all of my eyebrows and eyelashes. Buy yourself a nice wig now, and continue to make yourself look good. Your hair will return within 1-2 months after infusions.

Your r-chop will most likely have all of the detectable cancer gone within 2 months or less, so plan for the future. My r-abvd had 70% of my tumor mass gone after 3 infusions.

NLPHL has some chance of recurrence years later, like most indolent cancers, but even then, it is very treatable.

Dream of tomorrow !

Please keep us advised,

max

How nice
Dear Max,

I believe this is the first time I answered any of your posts.

"Dream Of Tomorrow" What wonderful words. I just might end all my posts with the
very same 3 words. 3 simple words are such a inspiration for tomorrow. I am sure
others will agree.

Love Maggie

ta8631 said:

Finally Someone like me
Max,

I was beinging to think i was the only one in the world with this lol. I have also found that this is very rare and there is no standard protocal treatment for it which i feel is more frustrating.

My doctor and i have visited back and forth about what type of chemo to use as there is no set standard. He suggested i try the R-chop as it has been effective and it is less toxic than the AVBD type. He also indicated there may be less long term side effects.....

I am looking at 6 cycles 21 days apart and i will be doing it as an outpatient. I have my first treatment next wednesday. I just actually had my port put in yesterday and have started to realize that people are going to know i have this so i better tell them. I really had my heart set on that no one would ever know i had cancer and that i would breeze right through it. Reality finally hit and i now know that was wishful thinking. I have had great support so far and I know it will continue.

I am keeping my hopes up that i will be able to work through my treatments but only time will tell. I would rather be a work then sitting home feeling sorry for myself

Hello,
My husband just finished treatment for Diffuse Large B Cell Non Hodgkins Lymphoma. He had 3 rounds of R-CHOP, then 4 weeks of daily radiation. He felt very strongly about continuing to work every day and he did. Our whole family tried to maintain our normal every day routine. It was what he wanted. There were days when he was very tired, but he never had issues with nausea or vomiting. He actually felt worse during the radiation part of treatment. He finished treatment on May 31st and he's feeling good.
I just wanted you to know that it's possible keep working and keep life as normal as possible. Hang in there.

miss maggie said:

Tomorrow
Dear Max,

You are so kind, thank you. Yes, I have been around since 2010. I was dx in Sept 2009 when
my small bowel perforated. I was feeling so good at the time. No symtoms at all. My dx was marginal, stage 1, low grade B cell NHL. Sub type Extranodal marginal zone B cell Lymphoma. I was treated only once in Dec 2009 with Rituxan once weekly for 4 weeks. The last 2 scans were negative for activity. I am scheduled for another pet, ct scan this
July.

To date, I made sure I had every imaginable test out there to make sure there is no other
cancer. Still, Will things change when I have my scan in July? Do I dwell on it, NO.
Even though my oncologist anticipated the cancer might not return, but if it did it might
be 5 years or so. Then I would be treated again with Rituxan. I know from the reseaach I have done, marginal can return, or transform. The good news, as you said, our dx is treatable.

Gee Wiz, I am so sorry you received your dx from those 2 doctor's who had such a negative
attitude. I can't imagine how you must of felt hearing your dx, which is shocking enough.
Then to get the impression you are a short timer. I hope you crossed these 2 doctor's off
your list.

I will always be on this site. I have traveled on a journey with so many of my friends I have found on this site. They are and will always be my family. There are times I will disappear for awhile, especially in the summer. I will still see how my friends are doing
daily.

God Bless Max. "Dream Of Tomorrow" Maggie

Worry

Miss Maggie,

Given the sort of minimal advance the cancer had got on you, a relapse is unlikely, as you noted. I suppose everyone on earth fears a relapse. I do, despite my oncologist saying that it is quite unlikely in my case, for a variety of technical reasons. I have my six-month blood profiles in about three weeks. I think I will be three years out at that time, but I am not good with dates.

I used to sit for every infusion by a red-headed mom named Deborah, 40. She had colorectal discovered at late Stage IV five years before, but recovered and went CR (complete remission) for 4.5 years. She went for her five year anniversary, and discovered she was Stage IV again with heavy lung and liver involvement. She lived about 8 more months. So much seems like the luck of the draw, but it has a reason.

Live and pray. Cancer remission is sort of like the 12 Step programms, I suppose: One day at a time. I was told I had one hour to live once in ICU 25 years ago, following being crushed in an auto accident (liver failure, respitory failure, heart irregular), and then it looked terminal initially three years ago with my non-oncologist doctors.

My theme song is an old 70s hit by the Doobie Brothers: "Cheat the Hangman."

Bless your days,

max

ta8631 said:

Thank you for your insite...
Thank you for your insite... i will update my about me right away :)I know i have a long road ahead of me and at this point i am so angry that i have this i haven't had time to be sad which is definetly starting to effect me I am taking one day at a time and just keep thinking that by god giving me this he knew i could handle it and someone else couldnt.

Infusion

Ta,

Tell us how Infusion 1 went, when you feel up to it. I hope you are well.

max

.

Max Former Hodgkins Stage 3 said:

Heard anything

Jim,

Have you heard anything from Ta ? I am less proficient at this site than you are.

max

.

ta8631
Hey Max,

Woke up and couldn't go back to sleep .

She did comment on another post on 6/24.
(Working during RCHOP?)

"I just received my 1st cycle or r-chop last week and so far so good I have returned back to work. I found that so far the predisone isn't to bad if I take it early in the morning. I am hoping for the best and don't know what to expect with the other treatments but still planning each day as it is any other day and if I have to change plans so be it. I will continue to live the life I always wanted.....with or without cancer"

http://csn.cancer.org/node/242238

Hope you're doing well.

Jim