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recently diagnosed with NLPHL and scared out of my mind

ta8631
Posts: 40
Joined: Jun 2012

This is a first for me. I was recently diagnosed with Nodular lympacyte predominent hodkins lymphoma and i am scared out of my mind. After weeks of tests and biopsy a treatment has been planned. I will recieve 6 rounds of r-chop...... i have no clue what to expect. what side effects are common, how long do i have before i lose my hair etc. If anyone could help me figure out what to expect i would soooo appreciate it :)

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jimwins
Posts: 2072
Joined: Aug 2011

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
Posts: 40
Joined: Jun 2012

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.

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jimwins
Posts: 2072
Joined: Aug 2011

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1191
Joined: May 2012

Jim,

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

max

.

jimwins's picture
jimwins
Posts: 2072
Joined: Aug 2011

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1191
Joined: May 2012

Thanks. I will follow her there.

I am well. My six month blood panel to be drawn in a week.

max

.

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

Ta,

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

max

.

ta8631
Posts: 40
Joined: Jun 2012

Sorry Max i am a bit new on when and where i should post :) Thanks for being concerned. I had a pretty good weekend just alot of flu like symptoms but so far so good. Just taking one day at a time now and hopefully it doesn't get much worse as the treatments go one. Going to see my friendly chiropractor today as i can't seem to get much sleep due to my shoulder and back aches, not sure if it is all the driving and sitting last week or just bone pain from the nulesta shot but it is driving me crazy. Hopefully it works :)

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allmost60
Posts: 3173
Joined: Jul 2010

Hi,
I had a different chemo protocol than you are having...CVP-R, which is a milder treatment than the R-CHOP. None of them are easy, but most are totally do-able. I have Follicular NHL-stage3-indolent. Finished my chemo in Dec 2011, and then started my 2 year Rituxan Maint 2 months later in February. I'll be finished with my bi-monthly infusions on Feb 14th 2013...just 4 more to go and then I'm done and will then start a "watch and wait" process. Hopefully with the grace of God, the cancer won't come back anytime soon! Jim covered everything on what to expect with your chemo, but if you still have questions, don't hesitate to come back here and ask. This is a scary time for you, so when your anger of having cancer changes to fear or sadness, just remember we are all here for you to get you through treatment. This group was a life saver for me! I'm happy your hubby is loving and supportive....mine was so scared in the first few months after my diagnosis that he couldn't even say the word cancer to my face. Once my treatments started he jumped right in and put his fears on a back burner and opened up to me. You take care, and come back and let us know how it's going for you. If you are comfortable with sharing your first name, it would be nice to know :)
Much love...Sue (FNHL-stage3-grade2-typeA-dx 6/10-age 61) Washington State.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1191
Joined: May 2012

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

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

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

ta8631
Posts: 40
Joined: Jun 2012

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 :(

ta8631
Posts: 40
Joined: Jun 2012

I am in a stage 3 with no symptoms

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

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

miss maggie
Posts: 929
Joined: Mar 2010

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1191
Joined: May 2012

Maggie,

I work odd hours, and am running out the door to work, but your reply is a real picker-upper for me. I see that because you joined in 2010, you have been around the lymphoma world for some time.

I have been involved with numerous friends in the last three years who have gone through many types of cancer, but mostly lymphoma and prostate. Most have been Stage IV, or very late Stage IV, and all but one are still hanging in there!

The family doc who gave me my initial CT results, and the surgeon who looked at the scan to plan my biopsy, basically acted initially like I was a "short-timer." It was only when I got to an oncologist that the news began to get better.

My attitude is that virtually ANY lymphoma or prostate case is treatable, and that we just need the resolve to fight, and try to be informed.

Let us get Ta well...

Max

miss maggie
Posts: 929
Joined: Mar 2010

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

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

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

miss maggie
Posts: 929
Joined: Mar 2010

Hi Max,

Just sitting here at my desk, saddens me reading about Deborah. I imagine myself in
Deborah's shoes, hearing such horrible news. She was so young. It is so very important for all of us to get our colonoscopy's, and yes, endoscopy also. Colon Cancer is so treatable
if caught early. I did mention I made sure I had every test imaginable since my DX in
Sept 2009. Too numerous to mention all the tests. Does it guarantee anything. NO. But,
at least I did the best I could.

I think it is also wise to keep in touch with our regular doctor's in between. I see my oncologist every 6 months. Even though she does some blood work, my internist does other
blood tests.

Between the 2 doctor's who mis-diagnosed your prognosis, and your prognosis from the
auto accident, you sure fooled them all. Great news 3 years in remission.

You too, bless each and everyday.
Dream of tomorrow. Love Maggie

nikkig43
Posts: 73
Joined: Feb 2012

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.

DadysGirl
Posts: 322
Joined: Aug 2011

Hi, is he in remission? What stage was he where was the cancer? I hope he is in remission and eventually will be cured...
Regards...
Also, how old is he?
My Dad has the same never went into remission :((( and now going in for stem cell transplant most likely tomorrow morning if platelets are high enough...

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anliperez915
Posts: 756
Joined: Sep 2011

Hi DadysGirl,
Hope that your dad's platelets are high enough so he can get his SCT! Keeping you and your dad in my prayers, hand in there sweetie.

Sincerely,
Liz

nikkig43
Posts: 73
Joined: Feb 2012

My husband has Diffuse Large B Cell Non Hodgkins Lymphoma Stage 2. It was primarily in his left tonsil and a couple of surrounding lymph nodes. A few weeks after his 3 RCHOP infusions, the PET scan revealed no sign of cancer. He then had 20 radiation treatments. His first post treatment scan is scheduled for mid July. Hoping he is still cancer free :) !! He is 51 years old.
I hope your Dad has excellent results from the stem cell transplant. Stay strong and think positively.
Take care, Nikki

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Aaron
Posts: 241
Joined: Jun 2012

I'm new to this thing only 10 days in from my GP calling me after dinner and dropping the bomb. Staging will be completed today and then I'll make the decision on treatment. LPHD is a tricky thing, I think I've had this for several years while my doctor told me it was all in my head and gave me happy pills(Xanax)and sent me home.Ta, like you I have a young child that will start kindegarden half way through treatment which I find a bit scary. As much as this disease sucks its comforting to me to be able to talk to others that have this rare subtype. I added you both to my friends list and hope we can chat often. Aaron

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Aaron
Posts: 241
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Hi Ta , how are you doing? Is treatment going alright? I hope your young ones are taking it easy on you and I hope your feeling alright. I'm starting in 2 weeks which has given me entirely too much time to think about all this but I'll be ported up and going in no time. Hope your doing well. Aaron

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Aaron,

Did you and your docs decide on a drug combo ?

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Aaron,

Did you and your docs decide on a drug combo ?

max

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

Aaron,

Did you and your docs decide on a drug combo ?

max

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

Sorry with the "Three-Peat."

The system was slow that, at 4:00 AM, I thought it might be down for maintenance...

max

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Aaron
Posts: 241
Joined: Jun 2012

Hi max, we're just about to head out the door for the second opinion now. After that I'll decide but I'm still leaning toward r-abvd. I'll let y'all know this evening how it all went. I think I'm going to ask my doc for something to help me sleep I'm really getting punchy from lack of rest, and I haven't even started treatment yet, yikes

ta8631
Posts: 40
Joined: Jun 2012

Things are going well, my parents are in from washington and keeping me pretty busy and helping with the kids :) I am feeling pretty back to normal but that will soon change i am up for round two next week. My hair did start coming out this morning and that was hard. I feel extremely lucky to be feeling so good that i started to forget i had this nasty thing until this morning :( The waiting for you is probably the hardest. I found that the more time i had to think about things and that was awful. Keep me posted on your treatment and happy late 4th

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Well, got second opinion today from dr. At SCCA ( fred hutch center) and confirmed dx. No organ or bone involvement so it looks like 3a going to begin r-abvd in 2 weeks. Ta I'm glad to hear your doing well and hanging out with your folks. My onc. Showed me a stat today that literally confirms that we NLPHL folks are one in a million, my wife always says I am I just never thought it would be this way. Max, looks like I'm going with the same protocol as you I hope I can tolerate it as well as you did. When I describe this to my friends and family I like to quote Morgan freeman at the end of shawshank redemption " the man that crawled through a river of sh&@ and came out clean on the other side"

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COBRA666
Posts: 2418
Joined: May 2010

Well at least I am glad to see you haven't lost your sense of humor. If you lose that then its over. John

Aaron's picture
Aaron
Posts: 241
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No John , I've tried but it just follows me home every time ;)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Aaron,

Sometimes it is a relief to just know what the docs are going to throw at you. I'm very glad the bone marrow was clean !

How many "cycles" (infusions) are they going to do ? Six or eight seem to be most common, but I did twelve.

I would recommend going to your favorite restaurant at least twice a week, and treating yourself until you start, because within a few weeks, you may not feel like it for some time.

R-abvd does not have the "P" drug that is in r-chop, which for many users stimulates appetite (the drug has several approved uses). I lost about 15% of my weight by the end of infusions (which I needed to do anyway !).

As I wrote before, by my third infusion, I had over 70% reduction of tumor size. Bless you, and may it be a huge success.

I am here to share experience and insight on this course of action. Keep us up to date.

max

.

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

Aaron,

I am a submarine service vet, "fast attack" variety. My boat specialized in Under Ice operations.

I know what it is like to "crawl out" of something !

I recall Paul McCartney's refrain in Band on the Run:

"If we ever get out of here ! If we ever get out of here !"

You will get to the end !

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1191
Joined: May 2012

Aaron,

I am a submarine service vet, "fast attack" variety. My boat specialized in Under Ice operations.

I know what it is like to "crawl out" of something !

I recall Paul McCartney's refrain in Band on the Run:

"If we ever get out of here ! If we ever get out of here !"

You will get to the end !

max

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

It's going to be 6 months which I believe is 12 infusions. I must admit having so long to think about this makes me more nervious every day. Weighing the option of trying maintinence or shooting the moon has me tied up in knots. This thing is so counter intuitive I can't believe I'm going to put my body in such peril from chemo when I don't even feel sick. thanks for hangin in with me on this y'all, the roller coaster continues.

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

Aaron,

To the best of my knowledge, cancer never caused me pain or any side effect, except fatigue. The agony of chemo all came from the chemo.

But, it was the chemo that saved my life, and will yours, as well.

Do you have EnMed nausea medication yet? It is wonderful, effective stuff. Most docs use it now. Ask about it, if not.

Off to that desert, known as work...

max

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Yea it's weird the only pain it gives is a pain in the a$&. I'll make sure to ask the doc about en med, we just got back from stocking up on ensure, senekot and antibacterial wipes. On a lighter note I'm finally sleeping I think the reality of this thing finally set in and now it's time to dig in for the long haul. Max i really appreciate you and lots of others on this board talking me through this thing. I hope someday to be the voice of experiance on the other end that can help out another newbie.

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

Aaron,

About to head out of town for about three days. I minght not be at this site again till Wednesday.

None of r-abvd is pill form, it is all IV. My first infusion took abut 8 hours, but the first is the slowest, as they check for allergic reactions, etc. Two of the drugs require "push control" by the infusion RN: the Vinblastine, and the "a" drug ("Red Devil"). This is because they are blister agents, and cannot be spilled. Another reason to have a port !

Adramycin ("Red Devil")will cause your urine to turn red, or at least pink, for several hours to a day or so, but this is normal, and NOT BLOOD.

One of the drugs requires that you eat ice while it is administered, but I cannot recall right off which it was, but I think it was the Vinblastine. I just wanted you to not be surprised by this practice. I little crunchy ice is fun anyway.

Bless you guys,

max

.

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Thanks max, have a good trip and we'll chat when you get back

ta8631
Posts: 40
Joined: Jun 2012

Aaron,
My biggest frustration is that the chemo has made me sicker than the cancer...not sure that really makes sense but oh well. Started losing my hair over the weekend :( I will soon shave it as i am sick of it falling out all over the house lol.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1191
Joined: May 2012

Ta,

I recall when my hair began to drop out in gobs. It was emotional even for me, a guy. I eventually lost even my eyebrows and eyelashes.

The good news is it will be back soon... Hang in there !

max

.

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Ta, that makes perfect sense to me, I just got home from playing 27 holes of golf ( my last hoorah for the year ) and I feel great. That's what truly po's me about NLPHL, I don't feel like I need 12 infusions of chemo but I know I do. This thing of ours screws as much with my mind as it does my body. Btw my hair was to the middle of my back, I shaved it off last week and donated it to locks of love. There's no way I could have watched it all fall out. Take care y'all, we'll talk soon. Aaron

ta8631
Posts: 40
Joined: Jun 2012

That is so awesome you donated your hair.... mine wasn't long enough and i am a repeat offender to the salon for dye jobs lol. I did have my husband shave it off last night.... i thought i was going to have a heart attack but i had enough of it coming out. He was great about it and we laughed our tails off :) feel 100% better today just doing that.

DadysGirl
Posts: 322
Joined: Aug 2011

That's wonderful Nikki... Thank you so much we hope so too. Please keep,us posted and yes Praying for excellent continued clean results eventually cured....
Hugs..

Mueller
Posts: 3
Joined: Jul 2012

Hi mate.... I had 6 rounds of the beautiful r-chop... What I can gather is that all of these things affect people in different ways but my story pretty much goes like this...

First two days I felt hungover then the rest of the first week I felt flat. Week two I felt average, not overly bad but not overly good either. Week three I felt normal. My hair didn't fall out completely. Prednisone sucked especially stopping it. Day 7 was usually the worst day in terms of energy levels. The mid games I found were way worse than the physical issues. I carried on life as usual and pretty much tried to pay no attention to what I was going through. After the very last treatment every joint in my body felt like it had broken glass in it. That lasted about a week then all back to normal except 12 kgs heavier. Now four months after treatment I feel back to normal. Taking salvestrols every day.... Google that and have a read...

Steve

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Hi Steve, I took a look and it seems interesting and at a buck a pill pretty expensive. Can't put a price tag on your health and I'm very happy to see your doing we'll after treatment! Keep it up

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