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Old 05-08-2007, 12:23 PM   #1
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Do I have anything to be concerned about?

Well, I feel a little ridiculous posting...but I have some questions and I am not sure if I should be concerned or not. I am not an alarmist by nature...so I am feeling a little bit unsure as to why I am so concerned about this.

Background: Last year I had a baby (#2). With my first pregnancy, it took me 2 years to get to my prepregnancy weight. This time it took me 5 months (I didn't diet either time), and the weight kept coming off. I am now at a weight I haven't seen in 15 years since high school. My weight has stabilized, I am losing weight at a turtle's pace now compared to before. Last fall I noticed some 'lumps' on the right side of my neck, hard nontender lymph nodes that feel clustered into one long group going lengthwise down where the jugular is about 3 inches. At the end of November I got a bad cold...and have caught every one that has come remotely near me ever since. That'sunusual for me...but I am so run down. My allergies are the worst they've ever been. I cannot remember the last time I felt rested, I constantly feel extremely exhausted. Unsure if this was due to the second child addition, I have waited to see the doc. Finally, in Feb. after realizing the lumps were still there, I went and saw my doc. She felt my neck, and confirmed what I felt, felt the other side and found a small one there which I had just noticed days prior. She sent me for a CBC, BMP and CT scan of my neck and upper chest. The labs were normal and the CT scan showed the largest (?) lymph node to be 7mm so she wasn't concerned. She said to follow up if things didn't get better. I did, and she just didn't know what to think so we agreed to give it a few months and see what transpired.

It has been 2 months, and I feel the same. The lumps are still there, but it's hard to say if they are any bigger or not. I noticed a couple of days ago as I was scratching behind my right ear that I have a lump there too...I just don't know if it's new or not. I haven't felt it before, but I don't know if I felt up that high. It is ~ the size of a quarter, flat but slightly domed and non tender. It is not behind my other ear. I also have been running low grade fevers off and on for months now, running about 99.5- but could that be due to being on birth control pills? The dr. wasn't sure.

I have decided that if things don't improve within the next month, I will go back in. Do I really have anything to be concerned about, or am I being ridiculous? Has anyone experienced something similar?

Thanks for your time~

 
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Old 05-08-2007, 12:50 PM   #2
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Re: Do I have anything to be concerned about?

Hi Ckkids,

You are not silly for questioning your health. You know better than anyone if you are not "right". I have been on birth control forever to regulate me and it has never caused a low grade fever. That is one of the many symptoms of lymphoma. So is the weight loss and fatigue. Have you noticed if you have awaken from sleep sweaty? Night sweats are also a symptom.
The only way to know if you have lymphoma is for you to have one of your lymph nodes removed and biopsied. It seems you really have to fight your doctors to get this done. Also, you may want to see if you could get into and ENT doctor. Tell him your symptoms and beg for the biopsy. Let me know if you have any other symptoms and I hope you get to feeling better!

Take care,

Deb

 
Old 05-08-2007, 03:52 PM   #3
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rob1985 HB User
Re: Do I have anything to be concerned about?

If this has been going on for a year I would highly advise getting a test now. A fever that is low grade and that is on and off consistently along with enlarged nodes and new nodes that keep popping up everywhere is something to be concerned about. You should see your doctor and get tested for it. It can't hurt and you should not be at all feeling silly. You can't be too careful. Hopefully it is nothing but if it is something serious the sooner you catch it the better.

 
Old 05-08-2007, 04:57 PM   #4
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Re: Do I have anything to be concerned about?

Thanks for your responses, Deb and Rob1985. I just don't know what to think. I appreciate your advice. No drenching night sweats...I'll wake up hot and a little sweaty (tmi-sorry) at least twice a week, but not drenching. I just don't know what to think...part of me wants to go in sooner, but part of me is scared to learn I really DO have something to worry about.

 
Old 05-08-2007, 04:58 PM   #5
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Re: Do I have anything to be concerned about?

Chances are, though, that this will pass and I am worrying for nothing. I am giving myself a month because I have convinced myself that all the lumps and bumps will be gone by then, and I'll have loads of energy to boot. :-)

 
Old 05-08-2007, 07:11 PM   #6
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Re: Do I have anything to be concerned about?

Dear Ckkids,
I was diagnosed with indolent stage 4 NHL in September 2006. Deb & Rob are right...but I feel the need to say it stronger to you....PLEASE go to your doctor and insist on a full node biopsy. They tried to diagnose me for months as well. They tested me for everything from cat scratch fever to lupus. They did 4 needle biopsies which showed nothing....we did not know what was wrong until they took out a full node. Then there was no question. Full lymphatic system involvement as well as my spleen and bone marrow. My symptoms were exactly the same as yours. The most prevalent for me was enlarged neck nodes and feeling tired. It has been a whirlwind of tests and chemo ever since. I can tell you NOT knowing what was going on inside me was worse than knowing. At least now I know my enemy and I can face him head on. If you have the biopsy....you will gain knowledge and power. No matter what the answer is. And you will find strength in yourself and your loved ones that you never knew existed. I am sorry if I am being pushy...but your situation just sounds so much like mine....be strong and please keep us posted.

 
Old 05-09-2007, 07:35 AM   #7
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Re: Do I have anything to be concerned about?

Thanks, Magickgirl. I appreciate that. Do you mind me asking about how big your nodes were when you first noticed them? Did they get bigger quickly, or was it a slow process? How long did it take them to diagnose you ultimately?

 
Old 05-09-2007, 08:54 AM   #8
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Re: Do I have anything to be concerned about?

I know how you feel. I am in the same boat. I have had a few nodes under 1 cm that I can feel but really no other symptoms for over 1 year now. In my research I have learned that when a node becomes enlarged it may NEVER go back to its previous size. If it is small, 1 cm or less and is not hard and stuck to anything you really have nothing to worry about. Hopefully that is where we both are.
What part of WA are you in?

Deb

 
Old 05-09-2007, 06:13 PM   #9
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Re: Do I have anything to be concerned about?

Hi Ck,
I had been feeling more tired than usual for several months...but you know how we type A personalities are...always an answer for everything. I told myself I was overdoing it, working too much OT, burning both ends of the candle etc.... Then one morning I was standing in front of the bathroom mirror with my arms up curling my hair with a curling iron. I noticed a visible lump in my neck the size of a small gumball. So I started feeling around on my neck...holy crud was I lumpy! I knew it wasn't normal. I have no idea how long I was lumpy without knowing. It's weird...but I use one of those "scruffy net thingees" in the shower or a washcloth...and when you really think about it....how often do you really, actually FEEL your neck? That's what I was thinking to myself. I have always been healthy...one of those people that never get sick...maybe a flu every year or two and that's it. This weirded me out...and I pay attention to things...so I went to the doctor right away. They seemed to really take it seriously...but were focused on auto-immune diseases and the like...especially after the needle biopsies were negative. The hard part was having the ENT specialist tell me "at least we ruled out lymphoma"....after the needle biopsies...and down the road learning that needle biopsies often miss lymphoma. After they ran out of tests and we all felt something was wrong....the only thing left was the full node biopsy. I am so glad I did it. I have had 6 rounds of CHOP...and have 1 of 4 rounds of Rituxin left...then another round of tests and another bone marrow biopsy to see if I am in remission. For me Rituxin sucks...I am one of the very few people on the planet who is deathly allergic to it (and it is one of the best lymphoma drugs that exist). The first time they tried to give it to me I went into full anaphylactic shock....that was a fun day on the chemo ward I can tell you! Now they have to put me in the hospital for a day hooked up to the bells and whistles and drugged up with massive quantities of steroids and benadryl to keep the allergic reaction to a minimum... to make sure I am OK...it takes 10-12 hours....but I know it will help. Look Ck.....all I can say is knowing is better than worrying. My diagnosis was a shock....indolent NHL is terminal...treatable...but not curable. OK...so I know more than most people get to know. I know I have less time to get around to everything I want to do than most people. But...there is power in knowing. I work on clearing out the closets and the clutter and putting my life and my affairs in order so no one has to "deal with my mess". That makes me feel good....because it is what I always wanted to accomplish anyways...I just didn't have the same sense of urgency before. I took time for granted. Not now. I plant flowers, I smell them daily, I love my man, I love my family, I love my kitties and I try to make a positive difference in things that matter to me. And that is all good girlfriend! I hope your lumps are just lumps!

 
Old 05-10-2007, 09:12 AM   #10
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Re: Do I have anything to be concerned about?

Hey Mackgirl,

I am just over the river from you in WA State. You have such a positive outlook! Question for you, how big were your nodes in your neck?

Deb

 
Old 05-12-2007, 04:16 PM   #11
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Re: Do I have anything to be concerned about?

Hi Deb!
I am in Portland! My lumps ranged from pea sized to gumball sized and a few that were weird shaped...larger and kind of elongated. The worst were on the left side of my nneck. Some on the right, one under my chin and one on the back side of my neck on the left at the base of my skull. The doc could feel my armpit lumps...but I couldn't feel them...all I felt was my flubby! My nodes have all shrunk except a few on the left side of my neck and some in my upper abdominal cavity near my heart. Also...to CK..I realized I forgot to answer one question...it took about 2 and a half months to finally diagnose me...but I am a persistent kind of gal and was lucky to have persistent doctors throughout this whole thing. I knew something was wrong and kept going until I had an answer. Deb....what is your story...if I can ask?

 
Old 05-14-2007, 03:39 PM   #12
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Re: Do I have anything to be concerned about?

Thanks again to you all for your responses...I still don't know what to do or think. I don't want to be this hysterical loon but I also just don't feel good. Wouldn't my weight loss continue at a rapid weight if I had lymphoma, or does it tend to come and go?

Once again I feel like I could fall asleep standing up, and that I am coming down with a cold. I am getting tired of this...

 
Old 05-17-2007, 02:50 PM   #13
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Re: Do I have anything to be concerned about?

Hi Ck!
I have heard the weight loss can be different for everyone. I have not had that yet. It would be perverse if I did...I have always been a big girl...and that would be a crappy reason to finally be skinny! I'll stay with fat & sassy! Throughout 9 of 10 chemo sessions (last one tomorrow!) my weight has fluctualed about 5-8 lbs each time. I tend to lose weight the first week after and gain it back over the next couple weeks. My doctor said he is glad...the steroids keep your appetite up and a lot of people on my chemo actually gain weight...God forbid! He also said being big was actually not a bad thing with my cancer....he feels it is possible it helped me tolerate the first 6 rounds so well. In his experience thin cancer patients had it tougher because when they lost even a little weight it had more drastic impacts overall. Yay! Flubby as defender! And if that is true I am mighty well defended! ;-) I have had only minor night sweats on a few occasions....but I am HOT all the time and run a low grade fever most of the time....around 99 degrees. Listen...if you don't change what your doing (not pushing and finding out for sure) you are just going to keep feeling like dog doo and worrying about what might be wrong. I say take charge! You can't have peace of mind or know what you might be facing unless you ACT. And what if it is something that is agressive? Waitning could make it more dire if precious time is lost before treatment. You already know what you are feeling is not normal for you...that is huge! Life is much too short to feel crappy all the time. Git 'er done! You can do it!
Magick

 
Old 11-27-2007, 11:27 AM   #14
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amiee79 HB User
Re: Do I have anything to be concerned about?

Magickgirl,

I noticed you said the only symptoms of the indolent lymphoma was the enlarged lymph nodes and fatigue. How fatigued were you? Also, how fast did all the lymph nodes start to get enlarged? I ask because I have been having health issues since I was 17. Started with kidney stones...found out I have Celiac Disease and just had my gall bladder removed a few months ago. During the past year or more I noticed this enlarged lymph node on my neck. I showed it to my doctor back in August and I am going to be seeing an ENT doctor. We noticed after paying attention to the lymph node that it waxes and wanes in size. I hear that is a sign of "indolent" lymphoma. Since I have had this enlarged lymph node I had noticed on the same chain that they are a little bigger, but not as big as the one I previously found. I know if my ENT dr wants to do a FNA then I am not going to and I am going to ask for a total excision of the lymph node.

 
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