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Question about swollen nodes!

boy34
Posts: 20
Joined: Aug 2011

FOLLICULAR NON-HODGKINS LYMPHOMA (A) STAGE 3 GRADE 1.5 ..Im doing the watch and wait therapy and its been 6months so far since my diagnosis...My nodes were swollen on the left side groin and neck area. The nodes in the past week have shrunk significantly this week to the near normal size. Believe me im not complaining and this tells me that the progression possibly slowed down, im guessing. Im sure the disease hasn't gone away. My question is this a normal occurrence and do they swell then go down periodically....Didn't want to bother the doc on something like this when im do for another pet scan in 6the weeks!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I think that you should call your doc's office and tell them you are wondering about this symptom you are experiencing and want to run it by him. Tell them that they could just ask him your question and then they can call you back so that you don't have to take up his time or if he wants to discuss it with you then fine.

My take on it all is that as cancer patients we have enough to think about and when medical situations arise - like the swelling and going down of your nodes (if that is what it is) - then you should feel comfortable going straight to the professionals for the best answers. I am a 25 year survivor of NHL and have found that if you are worried about a symptom - ask you doc for the best answer for your particular situation. I never had my nodes going down in size before treatments but you could be different and maybe there is something else going on with you in the same area that has nothing to do with the cancer - just something small but it might need to be looked at too.

Hope all goes well. Keep us posted.

Blessings,

Bluerose

boy34
Posts: 20
Joined: Aug 2011

Thank you for your response....I love hearing 25 years!!! Thats awesome!! Yeah im going to advise him...was just wondering if anyone had a similar experience....

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hi boy34,
well I'm also on the watch and wait Follicular NHL stage 4, its in my spleen. But I wanted to ask you something different from what you were asking. Do you have pain around your body all of a sudden, like sharp pains and do your bones hurt? I'm just wondering cuz I have some pain in my shoulders, elbows, knees, or sometimes its on my lower back, do you experience anything that is outside the common symptoms that you read about on the websites?
and about your question Bluerose is right, you should ask your Dr. about it you don't want to later find out that its something else, take care...

Sincerely,
Liz

boy34
Posts: 20
Joined: Aug 2011

Hi Liz,

My Doctor was advised and he was very excited and stated that's why we do the Wait and Watch!!!! He also said that he has another patient that has been doing the wait and watch for 12 years!! Its also in my spleen and yes, I do get all sorts of crazy pains through out my body. My bones do also hurt, especially towards the end of the day!!! I take Motrin and that seems to work on the bone aches. I also Fatigue easy too, mostly towards the end of the day!!

Stay Strong

C

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Well let's just hope they keep shrinking til they are totally gone. Have you ever had a second opinion from another oncologist? I think if I were doing Wait and Watch I would consider that. Doesn't hurt to know what the other docs think too.

Take care.

Bluerose

boy34
Posts: 20
Joined: Aug 2011

Hi....

I did get a second opinion at Sloan Kettering in NYC... Dr. Carol Portlock one of the best doctors in the area on Lymphoma, she also agreed on the watch and wait too...Also my labs have been seen by 4 different hospitals and all of them had the same findings! I believe where on the right path...im just very excited the nodes have significantly shrunk....

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hey boy,
I was reading somewhere on the internet that sometimes what your experiencing sometimes does happen. I don't know how it happens but it does I'm pretty sure you can find it if you Google it. Well its great that it hasn't gotten worse and that is the most important thing. Take care of yourself...

Sincerely,

Liz

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Okay I didn't realize you had so many opinions and Sloan is one of the best for sure so I think there is no doubt you can rest assured you are on the right path. I hope the shrinking of the nodes continues and soon they are just a bad memory. I am a 25 year survivor of NHL and that was in the days when treatments were much harsher and I'm still here. You will be too 25 years later, keep the faith and keep blogging.

All the best.

Bluerose

princessxena1962
Posts: 1
Joined: Feb 2012

Hi, I was diagnosed with follicular NHL in Feb of 2010. My doc encouraged the watch and wait, and so we did. I was trying to get into a clinical trial, so was quite content to wait. Well, the nodes started to shrink on their own, with the largest one disappearing all together!! Good for me, bad for clinical trial :( However, in 2011, due to personal, stressful issues, they came back with a vengeance!! So, yes, they do sometimes regress on their own, but we found that extreme stress CAN bring them back. In addition to the aches, exhaustion, etc, I had a problem maintaining weight. Finally, the clinical trial opened, but it was too late for me as the cancer had spread into too many areas :( However, in Oct, I was started on Bendamustine w/rituximab...had 1 1/2 doses of the Benda, 2 full doses of the ritux...had a rough time with the first few rituxes, and had to drop the benda as I had some really bad, allergic reactions. Am now on CVP-R, have just one more dose then I'm done. The side effects are a pain...literally...but could be worse. However, seems to be working...as all of the visible or easily felt nodes have shrunk. I'll probably have a CT scan once I'm done, but am confident that I have won this round.
So, to recap...yes, the nodes CAN shrink on their own, and come back, but the lovely thing about this cancer is that there are lots and lots of options for treatment. I will be getting ritux every 3 mos for 2-3 years as a maintenance in order to try to make the remission last longer. Make sure you have a doc who will take the time to listen & answer ALL of your questions, no matter how trivial they may seem. Mine is awesome!! He was instrumental in helping me get my kids in therapy, and has helped me with non-cancer related issues. He's very human & approachable & makes a point of asking about everything going on in my life.
Good luck! Oh, btw, I happened to get this at a much younger age than normal, but I am determined to beat it until I'm too old to care :D Like when I'm 137 yrs old :D
Keep the humor...black humor helps a lot...

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