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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 :)

ta8631
Posts: 40
Joined: Jun 2012

Sounds like the same side effects i have been having.... coming off that predinsone was probably the worst :( Did you lose your eyebrows and eyelashes?? I had my husband shave my head last night due to it falling out rapidly and am praying i can at least keep them while going through this nasty process.

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Hi TA :).

I'm glad you decided to shave the hair - it's simpler to get that
over with and at least you have some control over it :). If you haven't already,
find some crazy and fun headgear - your husband, friends, relatives can help.
As silly as it sounds, it takes the sting out of it to try to make it fun.
Headgear will also keep you warm. I found that I got cold easily due to no
hair on my head. I usually slept with a knit cap.

To respond to your question, I did lose most of my eyebrows and eyelashes.
I also lost most of the hair on my body too. On the positive side of that,
I certainly saved money on shaving and shampoo supplies :). Also, I hadn't
been so "breezy" in certain places since pre-puberty if you know what I mean ;).

It will grow back before you know it. Hang in there and laugh as much as you can :).
I think you're doing great!

Hugs and positive thoughts,

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

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Hi Ta, good call on shaving your hair off. I think it gives us some controll over a situation in which our hands are " off the wheel " most of the time. It also looks like you have a spouse that has a sense if humor about all this and has a deep Commitment to helping you through this thing. I too have such a spouse and am so thankful for it every day. I'm curious what made you go with r -chop over r-abvd? I posed the same question to max and I ask all others on the board that have or had NLPHL , what made you go with your treatment course when there is no one treatment agreed upon academicly.

ta8631
Posts: 40
Joined: Jun 2012

I visited with my dr extensively and he explained both have been known to work. He explained that rchop has been reported to have less long term effect and was less toxic. I also was a smoker and avbd has been know to pose more of a risk for lung problems with people that smoked. I researched both and didn't find the answer I wanted to leaned on my dr for his opinion. Have u decided what way u are going yet?

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

That's interesting, the docs told me abvd was the least harsh regImen. I have smoked for years as well (not for 10 days now) and the b drug in abvd is known to cause lung problems. I live in Seattle, where do you live? I wonder if it's a regional thing. Max got r-abvd and he's in south Carolina so who knows. I wonder if they just flip a coin before making suggestions, I suppose in the end it's not the road but the destination that matters. Here's to us all getting better and staying that way. Aaron

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1019
Joined: May 2012

Aaron and Ta,

I can't say what steers an oncologist toward one combination therapy verses another. I'd like to think that they have sound reasons. From what I have read over time, abvd is more commnly used for HL variants, and chop for NHL variants. Because NLPHL is an odd strain that has characteristics of both NHL and HL, and because it is rare, it is easy to see why sometimes a doctor or oncology group will fall on one side of the equation, and sometimes on the other. Over time, NLPHL has sort of evolved from "clearly" HL, and is in many circles viewed today as NHL. I know that only muddies the water more, not less, for us patients.

R-abvd was developed as a replacement for an older combo known as MOPP. The difference is that abvd is supposidly a lot less toxic than MOPP was, but MOPP was rough stuff, I am told. I have a friend who took it in the early 80s, and it was horrible, as he describes it. It saved him, however, and wih no relapses, ever. MOPP is still approved and is even used at times, but I have no idea why. I do believe that abvd is a little more commonly used for NLPHL, but I have no exact numbers for this.

I have not read a lot about r-chop. The bleomycin in abvd can be problematic with the lungs. It has a toxic reaction in about 10% of users, including me. Therefore, the doc will watch carefully for breathing issues. My doc had me go for a CT to verify that I was not having fibrosis when I started having shortness of breath, and I was not. I still have lung issues today, three years out, however. I certainly would not smoke during chemo. The good news is that 90% of bleomycin users have no lung side effects at all.

I have always heard that early-stage HL is often treated with radiation, and perhaps a few infusions, whereas Stage III or later ordinarily uses no radiation, and a long course of chemo. This is true of the three of us. I have also read that radiation on top of a lot of chemo significantly increases the chances of problems years later, so it is best avoided when possible. So there are a good number of similarities here, including the use of Rituxan.

It is very possible to worry yourself forever over these issues. I guess the best approach is to simply be aware of the potentials, trust, and know that both combos are highly effective, and that any chemo has the potential for serious side-effects.

Bless your treatments,

max

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Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Hi max, it's interesting you mentioned the radiation thing, the doc at SCCA said their goal is to get away from radiation altogether for NLPHL at all stages. From what I've read the chop is more for NHL and the abvd for HL but both work for NLPHL. Your certainly right that working myself into a lather over these things is not a good idea, Too much time to think about all this stuff I guess. Both oncologists that I've talked to think r-abvd is the way to go so like you said its time to trust the docs and go foreward.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1019
Joined: May 2012

Aaron,

Good deal. As I said, a person can "research" him or her self into a psychosis. Any board certified onc is going to know exactly what he or she is doing.

Chop and abvd are both a cake-walk compared to MOPP, so let's all be happy and pray for the best.

Bless you guys,

max

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Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Thanks max, your the man. Btw did you smoke before your dx?

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Thanks max, your the man. Btw did you smoke before your dx?

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Thanks max, your the man. Btw did you smoke before your dx?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1019
Joined: May 2012

Aaron,

I have never smoked. But, in 1986, my chest cavity was crushed in a car wreck, and I was on a ventillator for 16 days. I had a collapsed right lung, and I may (or may not) have had pneumonia during this time. Overall, 18 fractures and a torn-loose knee cap.

Therefore, I had serious lung issues before beginning abvd. Bleomycin mostly gives problems to the older (60 or above), or those with serious lung histories, like me (I was 53 when I began abvd). As I stated before, all of the chemo information sites state that Bleomycin has NO lung symptoms in 90% of all users.

I guess your first infusion is coming up soon. My first one was a long day, over 8 hours. They will go very slowly at first, watching for allergic reactions. You will get a fair amount of benadryl, which might cause you to doze off at times. Later, things will speed up a good bit. My later infusions took about 7-7.5 hours.

You will receive huge amounts of fluids -- many bags full. I felt like the Michelin Man when I left infusion.

Also, by about the fourth hour, I was going to urinate every 20 minutes or so.

One thing I did not do well is drink enough water: They will constantly hammer into your head to drink huge amounts of water. DO IT !

Dehydration is a very common problem in chemo, and it makes you feel much worse, physicaly. So, remember to drink water constantly for the next six months. Some people cannot drink enough, and have to go receive fluids at the infusion center itself.

DRINK !

max

MNK
Posts: 12
Joined: Jan 2010

I'm sorry that you have joined our special club. I was diagnosed with stage 3 NLPHL in September 2009. I had 12 infusions (6 cycles) of ABVD and 6 Rituxan treatments. What you will discover is that our disease responds very quickly to chemo, after 2-1/2 cycles and 2 Rituxans my disease was basically in remission. Since I stopped treatment in March 2010 every PET, CAT and blood test has come back clean. There is light at the end of the tunnel. Rememeber statistically our remission rate is in the upper 90 percentile. Please search this site since I have posted information/antedotes on what I did to deal with the potential stomach pain, how to prevent the bone pain if you get a neulasta shot and some of the long term side effects I incurred post treatment. Remember the key to this ordeal is your attitude. Good luck.

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

I've been trying to find your previous posts but to no avail. I'm new to the forum so I'm not too good at navigating it yet. I'm startIng r-abvd on Friday so I'm sure I'll be looking to you and max for insight and advice. Thanks, Aaron

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1019
Joined: May 2012

Mnk,

Greetings from Max as well !

It sounds like our experiences have been very similiar. I did 12 r-abvd also, but I got rituxan 12 times (at each infusion).

NLPHL is very treatable, as you note -- an "indolent," slow-moving cancer.

Because of my age when I began (53 at the time, Stage 3-A, no bone marrow involvement) my oncologist (a brilliant man, with degrees and training from Sanford, UCLA, and Duke) said my "Five year clean" chances were right at 60 % I have read the "90 %" number, which is an aggregate, and does not break out negative individual factors, such as age at diagnosis, etc.

Nonetheless, it is among the most beatable cancers for all age groups, including us, and a postivite attitude is seriously important.

Like Aaron, I find this Discussion format very cumbersome, and one of the worst for tracking friends. It needs serious sorftware improvements. But, it is a blessing for us all. Great having you with us.

max

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MNK
Posts: 12
Joined: Jan 2010

Max,

Every survivors' ONC has a different opinion as to remission and surivial rate. The real problem is the lack of statisical data to make any definitive predictions. My age was 48 when I got my diagnosis. (Funny how this is suppose to be a younger person's disease)

Aaron look for posts in 2010/early 2011 regarding NLPHL. My posts should be there. It was another NLPHL discussion. Yogurt for stomach pain, advil/aleve/tylenol before neulasta to eliminate the bone pain. Just post questions if you have any.

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