Lymph nodes - please help!

pkwife · Posted: Mon Apr 24, 2006 6:10 pm Post subject: Lymph nodes - please help!

My loving, wonderful husband of 14 years has had about 12-13 lymph nodes swollen in his neck for over 3 months. He had a multitude of dental work done. But even after 4 rounds of antibiotics, the nodes are unchanged. All labwork and CXR have been normal. We have been relatively put off by primary MD as being overly worried. I scheduled him for a biopsy evaluation with an ENT tomorrow, by my own fear.

Any feedback on the most accurate type of biopsy? Anyone else had mostly a benign illness except for tons of swollen lymph nodes? Was in Hodgins or Non-Hodgkins?

My family is so distressed right now. I've been crying for days. I am a PNP and may know too much but could really use talking to others who have been through this.
PK Wife

Life_101 · Regular Joined: 22 Apr 2006 Posts: 20 Location: N.E. Ohio

PK Wife, As you know swollen lymph nodes can be caused by many
things. The ones in my neck were only slightly enlarged and my MD
put me thru the anti-biotic routine. I was diagnosed at various times
with infection. post nasal drip & acid reflux. Then I got fevers and night
sweats, was put in a hospital and tested for everything from AIDS to TB.
Then they removed one of my lymph nodes and it tested negative for
cancer. The oncologist did a bone marrow biopsy and it tested positive
for Hodgkins. As I understand it a needle biopsy is not very accurate but
it's probably what they'll do first.

Some people are lucky? and get diagnosed early. I first went to my MD
in Feb and they finally figured me out in Dec. when it was a stage 4b.

But I wouldn't think the worst, it may not be anything serious. It's all a
process of elimination. Hope this helps.

dragonlady · Posted: Tue Apr 25, 2006 8:08 am Post subject: Re: Lymph nodes - please help!

Hi pkwife,
I am not a doctor and have no medical training. My husband was diagnosed last month with Follicular Lymphoma (low grade, stage III). At the time we thought there were no symptoms other than the swollen lymph nodes in his groin (both sides) but looking back now we realise that there were many warning signs from as far back as 2+1/2 years ago: mainly lethargy; night sweats; rheumatoid arthritis in his shoulders; etc.

I think the most accurate type of biopsy is removal of a lymph node for biopsy. Also a CT scan is very good. Hubby's initial blood test and xray were normal but the lymphoma showed up in both the scan and biopsy.

I understand your fears and emotions having gone through the same myself. Be strong and try not to worry too much until you get the biopsy results which I hope will be clear.

Good luck and hang in there. Our thoughts are with you, your husband and family.

pkwife · Posted: Mon May 01, 2006 3:00 pm Post subject: Update

Thanks for the feedback. Of course the FNA biopsy came back inconclusive. It took a week to get that back. Now we will have to proceed to the open biopsy. His ENT offered an observation only. But, we need to know. Our older children are also very frightened and we are all struggling terribly with emotions.

We pray daily and although it seems promising to potentially get a negative study, I keep reading about so many of you that had negative biopsies yet ended up with cancer.

pkwife · Posted: Mon May 08, 2006 2:45 pm Post subject: Bad news

We got results today. My husband has small lymphocytic lymphoma non-Hodgkins. What are we facing? Anyone else have this?

Please help!!

pkwife

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

There are some really good websites about NHL. From what Ive read, I think that small lymphocytic lymphoma is a slow growing, or low grade kind.
I found a great website that just talks about this type of lymphoma:

http://www.thedoctorsdoctor.com/diseases/lymphoma_smalllymphocytic.htm

Hopes this helps.

-Chelsea

pkwife · Posted: Wed May 10, 2006 10:29 pm Post subject: Rituxan

We are waiting on the official PET scan results but based on clinical exam it looks like my husband is a stage I or maybe II. The oncologist wants to only do Rituxan and no chemo. Anyone else had this treatment? If so, were there bad reactions?

Is there anyone out there with SLL/CLL who has survived more than 7 years?

Thanks for the help!
PK WIFE

aims823 · New User Joined: 23 May 2006 Posts: 1

I also had a lot of lymph nodes come up this week. I am a bit scared too. I first had them about 3 weeks ago. It appeared at the left side of my back, a bit farther away from the ears just below the hairline. Then it was painful at first but the pain went away after a day or two. then the lump itself disappeared after a week. The next week it came up on the right, then after a week it disappeared again. then about 2 weeks after a new one came up on the left and this time it was really painful. So i waited one day and went to the doctor then a new one on the right came out. So the doctor prescribed augmentine (amoxicillin). Then after 3 tables (one and a half days), new lymph nodes come up on the left side of the neck a bit lower about 2-3 inches above the collar bone. Then after that a few more smaller lymph (less than half an inch i guess) nodes appeared on the lower portion of the neck (about 5 more). and Im worried that i might be getting more. the original ones though, the one i went to see the doctor for had been better and is slowly receding. the painful one almost completely gone.

i guess in general i am getting better, but in a way im worried because i keep getting more in a number of days. is this really normal? am i just being paranoid? could i be allergic to the medicine? also... i dont have any other symptoms other than the increasing lymph nodes.

sara · New User Joined: 19 May 2006 Posts: 4

hi pkwife and all of you...sorry to hear about your husband, i am not familair with that.. but from what others says, looks that he is going to be fine!! so happy for you! i wantd to ask you, how enlarged were your husban lymph nodes? i have some enlarged, but doctor says is to small to do a biopsy..mines are 12 mm.. i also have low fevers 99.5 the most, for many months, but in the last 2 weks i from 98 to 98.8, i has decrease..i dont have night sweats, but sometimes i get hot for a little bit, but no sweat.. i would appreciatte if someone can tell me about those temperatures and lymph node sizes... tank you very much! good luck!!
sara

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

Doctors usually say that lymph nodes need to be greater than 1cm to be swollen, but I have heard thatlymphoma nodes can be any size. There are also some lymphomas that will make nodes fluctuate in size. The point is, different things can happen, so if you are concerned then you should talk to your doctor. I am waiting for a CT scan and biopsy, so I dont know whats up with me yet, but I have recurring fevers of about 100.4. I have them for a week or so and then they go away for a couple of weeks, only to return. There are actually many things that can cause lymph node swelling and fever. so just talk to the doc. Good luck. Wink

-Chelsea

Debbiefix · Regular Joined: 01 Jun 2006 Posts: 15 Location: CT

[quote="pkwife"]

Is there anyone out there with SLL/CLL who has survived more than 7 years?

PK WIFE[/quote]

I have CLL and was diagnosed a year ago. I was told I've had this for at least 20 years. I've never had any symptoms except for enlarged lymph nodes which were spotted on a mammogram. From there I had a excisional biopsy. I've had 12 treatments of Rituxan which is monoclonal immunotherapy by way of IV. No side affects. No hair loss. No fatigue. All lymph nodes have shrunk and I'm awaiting my next CT and PET scans the 2nd week of June to see if I'm in remission. It's not so bad. By the way, all my blood work has always been perfect. If it haden't been for that mammogram, I never would have known.

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