CSN Login
Members Online: 8

You are here

Just had my half-way PET/CT scan for NLPHL

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

I have had two cylces (four treatment) of R-ABVD for NLPHL. I am scheduled to have four cycles (8 treatments; once every two weeks). Yesterday I had my PET/CT scan. My Dr. said the enlarged nodes have shrunk about in half but there is still some cancer activity, although less than before. He said that no new areas have shown up, but the suspect lymphnodes still lit up a little. Is this normal at this point? He was hopeful that at this point the cancer cells would not be lighting up. I'm trying to stay hopeful.

Jeff

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

Hi Jeff.  At least they shrunk and there is no new activity.  Hopefully the remaining cycles will do the job or they will do some tweaking.  I'm sorry it wasn't the news you were hoping for but I'm glad it's not worse.  Hang in there and keep your chin up!  You know we're here for you.

Jim

 

 

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

Stay positive Jeff!!!

Don't get discouraged, sometimes it just takes a little longer for us to see the results that we want. I know you will kick cancers butt and you will be fine in the end! Take care, I will keep you in my daily prayers!

Sincerely,

Liz

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Hi Jeff, I have Non-hodge and had a different chemo cocktail but I did want to share my scan experience.

My first PET/CT showed, just like yours, the cancer had shrunk by about half. I also still showed cancer activity. My doctor said it was a good report.

My second scan showed that ALL the original cancer activity was gone but there was NEW activity. My doctor tried to be encouraging but I could see he was worried.

My third and final scan showed complete response. Full remission. No evidence of disease.

That time between the 2nd and 3rd scans was the only time I was truly afraid. I have also never prayed so much in my life and many, many other people were praying for me.  I worked so hard to banish negative thoughts from my mind and heart, to turn the page in my mind when doubt started coming in. It was a very humbling experience. 

Your obvious strong faith is your biggest asset right now. You must work to stay positive and hopeful. 

Blessings to you and your family.

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3524
Joined: May 2012

Jeff,

Your results are great. You must have started with no more than Stage II to be scheduled for only four cycles. MY oncologist reviewed my PET after three infusions, and said "We are in taught in oncology internship to look for shrinkage you can see 'across the room', and that is what you have."

The drugs are beating the disease. Some folks get strong treatments and the PETS come back either unchanged, or with worsening. Yours is the best possible outcome.   Worst case might be that at the end of 8 infusions you need a few more, but that is unlikely.  Your doc would be glad to discuss this with you, but it sounds like things are going very well for you, based upon what I was taught.

max

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

When I responded to Jeff, I don't think I was running on all cylinders and I had strong empathy going on as well.  Just wanted to thank you all for doing a better job than I did.  Also, I've got this new "kid" (Foxy) and she's a firecracker.  I'm finding I have to take her to the park nearly everyday to wind her down - LOL.  She's a loveable little cuss though and I buy her little presents all the time so I guess I'm a "daddy" now ;).

Jeff, I think you're doing well.  Also, it's okay to be human and not be so "positive" all the time as long as it's not dominating you :).  Thank you for sharing with us and keep that thumb up!

Jim

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3524
Joined: May 2012

Jim,

I mentioned to Jeff a while back that his pic reminds me of a Marine Corps drill sergeant -- a tough guy.  Semper fi !

Best I can manage is an aged, semi-conscious cat !  Undecided  

 

max

.

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Thanks for encouraging me. My family has been great and you guys with all your comments are helping me too. I will keep focusing on the glass half full. It's not always easy!

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

Get a straw and blow bubbles - it will look more than half full!  Tongue Out

 

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

Hi Jeff,

 I had a different chemo than you..CVP-R and then 2 years of Rituxan Maint infusions. After my 3rd round of chemo, CT scan showed all of my tumors had shrunk 60%. Then after my 6th round, all had shrunk completely except for one tumor which stayed the same for the next year and a half. FINALLY after 4 scans and a year and a half later my doctor said I was in total remission. Thought I was home free until this April when the damn crap came back in my right eye, right cheek and right paratracheal node. But...the good news is that even if it does come back we can keep treating and beating it back. I just take each day one at a time and try to be as positive as possible. Attitude makes the difference with this whole cancer experience being an ordeal or an adventure. I'm trying to look at it as an adventure...doesn't always work, but it makes the days easier to get through when we stay out of the gloom and doom zone. Hang in there Jeff, and go fishing every chance you get!! It sure is great therapy for me! Keep us posted.  Sue

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

Well said, Sue.

Hugs

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Thanks....I like your idea of the adventure. We both need to win this battle so we can have fishing adventures.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3524
Joined: May 2012
JamesLamb's picture
JamesLamb
Posts: 1
Joined: Jul 2014

Hello Jeff, Congrats for making it halfway!!

I also have NLPHL, and have just finished my first cycle of ABVD.    My situation sounds similar to yours, as my PET scan highlighted two other areas which had little sugar uptake showing, one near my spleen and one down near my liver.  There isn't really much showing, but I thought I would mention that because there is spleen involvement in my situation, they have just changed my Chemo over to CHOP-R. 

 

Cheers, Hope your doing well!!

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3524
Joined: May 2012

Welcome, James.

Although NLPHL is pretty rare (about 1 or 2% of all new lymphomas diagnosed annually, or about 5% of all new Hodgkin's type diagnosed annually), about a half-dozen or so of us are regulars here.

I have never heard of CHOP for NLPHL, since CHOP is mostly a NHL combination.  I am interested in what stage you are, if you wish to share. I was a heavily involved stage III myself, but with no organ involvement .  Of course, NLPHL is an odd bird, and has been at different times considered an unusual B-type NHL, but is officially at present a form of HL.

Love the superbike. Looks like some sort of sports-touring machine. I used to ride.

max

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

It's never easy, but it could be worse. Most of my info can be found on my blog at olympiajeff148.blogspot.com. We will beat this!!

Subscribe to Comments for "Just had my half-way PET/CT scan for NLPHL"