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Another New NLPHL Hopeful

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

I've been reading this forum for a few days now and am thankful for all the supportive and amazing people! I'm 48 and just diagnosed with NHPHL in the mesentery. I had two nodes taken out three weeks ago and the small one tested positive for folicular in situ and the large (3.5 cm) for NLPHL. I have no symptoms, just found out through a CT check-up for a stomach issue I had 11 years ago. I get to have my PET/CT and port placement tomorrow and then start R-ABVD next Thursday. Not looking forward to any of it. I hope they don't find anything else. Doubt I'll sleep much tonight. Any other NLPHLers out there? How about in the mesentery? I feel like I'm dreaming. 5 weeks ago I was going for a run and a swim, feeling great and looking forward to two of my kids graduating. Now they will have this tough looking bald dude hanging with them at commencement. I'm lucky to have a super supportive wife and parents though!! Thanks for listening to me.

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Jeff and welcome to the group.  Sorry you have to be here but you will find caring and supportive folks here.  Please know lymphoma is very treatable and some types are considered curable.  I had Diffuse Large B Cell Lymphoma and am approaching 3 years remission.  I highly recommend anti-anxiety medication because it keeps the "worry monster" at bay and allows you to sleep better.  You can click on anyone's name or pic to get to the "about me" section and read more about their experiences (if they filled it out).  There are others here with similar diagnoses and treatment as you and I'm sure you'll be hearing from them.

You will find that your port becomes your friend as you go through treatment.  I still have mine and told my oncologist I don't want mine removed until I hit the 3 year mark which is coming up later this year.  The feeling of dreaming is very normal as well as anxiety, fear, etc.  It's kind of a roller coaster but it gets better as you progress through treatment and know more what to expect. 

I always tell new folks attitude and humor are free weapons in this war - use them to your advantage.  Regarding hair loss, it will probably happen.  It helped me to just buzz mine off early on so I didn't have to go through losing it in clumps, etc.  You can involve your kids/wife in making it a little more "fun" by picking out crazy head gear to wear.  This will give them a chance to be involved in a positive way and feel like they are doing a little something to help.  Treatment is not a picnic but it is doable and you will get through this.

Others will chime in soon.  Please know you are not alone and you are welcome to come here to vent, ask questions, share and when you feel up to it, offer support to others.

Big hugs to you and your family,

Jim

http://www.youtube.com/watch?v=bahQG0n7cV8  Smile

 

 

 

 

Shoopy
Posts: 210
Joined: Jul 2013

While I'm sorry you have to join this group...I will certainly help you in anyway.  Instead of repeating my history...just read the post "Shoopy Update" (4/4/14 create).  Before you read it...realize that I don't believe I don't have the run of the mill diffused large B cell lymphoma. 

Anyway, you will be amazed what friends, family, faith, prayer, positive attitude...and a ton of toxic drugs will do for a guy!

Honestly, two things in almost equal doses have gotten me through this ordeal: faith and positive attitude.  Those two things should account for more than 70%-75% of your treatment plan.  Most of my other comments are covered by Jim, Becky & Bill.

Don't be afraid to ask, my friend,

Karl

illead's picture
illead
Posts: 846
Joined: Aug 2012

Bill and I would also like to welcome you to the group.  Bill has Mantle Cell lymphoma, so I can't really speak about NLPHL.  What we all have in common though is our feelings when we are first diagnosed.  I remember after about a week from his diagnosis, we were sitting on our deck and he said "I can't believe I have cancer"  It was like it finally dawned on him.  It takes over your thoughts and is something entirely new that we have to process.  Like Jim says though, it is very treatable and even if some are not curable, most are maintainable, which I think makes it much easier to keep a positive attitude and to be able to go on with life.  You no doubt will be able to do all the things you have always done, and in hind sight this will only seem like a bump in the road.   Your wife and family's support means everything, they have a long row to hoe also.  Please know that our thoughts are with you all as your battle begins and echoing Jim, come back anytime, we're here to comfort and support.

Becky & Bill 

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

All of you seem so very brave. Thanks for the support!!! The port placement was actually a good time. I didn't go for sedation and the Dr. and nurse played 80s music and let me watch the monitor to see the wire going in. A bit sore tonight. As for the PET/CT, not fun laying in a tube with hands over head for 45 minutes after drinking the sludge. They did play music too, but not as fun as the port. I kept imaging I was body suring and was getting tubed..until I had to go to the bathroom so bad. The best part was when they added the potion that makes your body warm, I will find the results by weeks end. Prayer request...no further hot spots! By the way, I've tried adding a picture, but I can't seem to get it to work. Also, where do you add the story. I really feel much better about this knowing there are others that have gone through or are ging through something similar. Thanks again!

Jeff

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Jeff...and "Welcome".

  I had to laugh when you mentioned the warm feeling during your scan. I just had a CT Scan last week and had forgotten about the "warm" Surprisedsensation when the dye goes in...thought forsure I was going to wet my pants and then remembered it was just the dye. Gets me everytime! SmileI do not have your subtype NLPHL ...mine is Follicular NHL-grd2-typA-stg3. I have been in remission since 2012, but found out this month that it has now recurred in 3 new area's...right eye, right cheek, and right paratracheal. So...I am full on in the same mode you are in...testing,biopsies, blood work, etc. My port has been in for 4 years, so I don't have to deal with that. Anyways...if you want to create a "about you" page go to the top of the page and click on...Click here to create or update your member "About Me" page. It is self explanatory and easy to do. Now adding a picture is another thing entirely and I have not been able to post pictures since they updated the site last year. Hopefully one of the other members can walk you through the process. My prayers and positive thoughts are with you as you start this new cancer journey. We are always here to help, so don't be shy. Best wishes...Sue

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Jeff,

Welcome to the group, I also don't have the same one as yours. Mine is Splenic Marginal Zone Lymphoma, mine is also not curable but very treatable! I have been in remission for a year now and hopefully will stay like that for many more. I know how scary it is right now but like Jim said as time goes by you will learn and become an expert on everything that has to do with lymphoma! I will keep you in my prayers that your treatment will be easy for you! Take care

Sincerely,

Liz

Joemory21's picture
Joemory21
Posts: 41
Joined: Feb 2013

A few of us here have nlphl I'm one of them. mine started in the mesentery but made it all over the place before they found it. But I'm ned as of now. Sorry you had to find this group but we are here to help. The next week is going to fly by. 

Best of luck

jonathan

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

What is ned and how long have you been ned?

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Jeff, NED = "No Evidence of Disease" :).  

 

 

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

Thanks for the prayers...good news on my scan. It seems the NLPHL is only in my abdomen (three spots). Start R-ABVD on Thursday so I'm going to enjoy the next 6 days (fishing, hiking, swimming with the family, etc.). Thanks again for your thoughts and prayers.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Jeff,

 NED stands for no evidence of disease. We all strive for NED, but terms like remission and stable are also good places to be. I was considered stable for the first year after my first line chemo was finished, because one pesky tumor didn't shrink as much as all of the others tumors did. I finally reached remission after the first year of doing my maint Rituxan in 2010. February 2013 I finished my Rituxan maint and was still in remission until now. I don't concern myself too much with the labels they give us...NED, stable, remission...I prefer to go by how I'm feeling and use words like...ok...good...and great when people ask where I'm at with my cancer. Anyways...I'm anxious to hear how your first day of treatment goes next Thursday...hopefully uneventful and as peaceful as possible! I agree...get out there this next 6 days and have fun! Take care...Sue

Bill_NC's picture
Bill_NC
Posts: 128
Joined: Jan 2013

Hi Jeff, and welcome to the group.

There are 5 of us here as far I know, with NLPHL at different stages an dseems we all at same age group . let us know if you have any questions. MAX is a very good resource in regard to NLPHL. Wish you the best.

Max (Max Former Hodgkins Stage 3)
Sureshwani
Aaron
jonathan (Joemory21)
Bill_NC

dawn_nlphl's picture
dawn_nlphl
Posts: 1
Joined: May 2014

I just recently found out I have NLPHL, but Jeff seems to be moving along quicker with a treatment plan. I don't know......I guess everything moves slower in Florida including the doctors.

Nice to meet everyone!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

It is all that horrible heat, Dawn. Makes folks lethargic and slow-moving.

Welcome !  I hope the folks here are beneficial to you.

Max -- former Stage III NLPHL.  Treatment with r-abvd.  Complete remission for five years in August.

.

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Welcome to the roller coaster journey that no one asks for!  You'll find great people here who are supportive and caring, Dawn.  Please feel free to come here and chat, vent, ask questions, etc.  It's difficult right now as we all know and the waiting can be horrible.  If you are not already on anti-anxiety medication, it really helps.  I say that so much but it really does.  Another thing I say is humor and attitude are free weapons in this battle so use them to your advantage!

Please keep us updated and again, welcome here!

Hugs - Jim

illead's picture
illead
Posts: 846
Joined: Aug 2012

Welcome to the group.  I can only say what has already been said.  We're a fun group, very supportive and even a little zany at times.  My husband has Mantle Cell Lymphoma, pretty rare.  He relapsed in Feb, which was a shock as he was and still is feeling great.  He is on a new wonder drug called a target drug that they have very high hopes for.  So we keep on keeping on....what else can you do?  This is always an ominous thing to deal with at first but you will find that your nurses and doctors and we are very supportive and it is not as bad as one thinks.  So hang in there and know that we are always here and have run the gamut of emotions.

Thinking of you, Becky & Bill

Bill_NC's picture
Bill_NC
Posts: 128
Joined: Jan 2013

So 6 of us now. Do not worry you will go through it, and kick that cancer butt. Wish you the best and keep us updated. 

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

Hi Bill, it is always good so hear from you. And thank you; somehow Dawn's entry flew under my radar so I'm glad for your post in that regard also. I hope you are doing well and enjoying your summer so far.

And to Dawn, welcome to the group! I hope to hear more from you.

Rocquie

 

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