Another New NLPHL Hopeful

Hi Jeff

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 

 

 

 

 

jimwins said:

Hi Jeff

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 

 

 

 

 

Welcome Jeff

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

Jeff148 said:

Thanks Guys

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

Welcome...

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" sensation 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! I 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

Hi jeff

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 said:

PET/CT Results

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.

NED...

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 said:

Hi Jeff, and welcome to the

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

Make that 6

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!

dawn_nlphl said:

Make that 6

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!

Welcome Dawn

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

dawn_nlphl said:

Make that 6

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!

Welcome Dawn

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.