It all started in February of this year. So much has happened since then I will try to be as brief and to the point as possible. It started with a swollen lymph node in the jaw line, lasted a month or so. In March noticed supraclavicular swelling(above the collarbones) on both sides of my neck, no nodes though, to much swelling, size of large eggs, vary in size hourly, never gone completely though. Lost 55 pounds in 4 months w/o trying. Severe itching to arms and legs. Constant infections that keep coming back, cause cannot fight them. Now swelling is not so large, but lymph nodes popped out and seem to be getting bigger. Also now feel a tightness, like a pulling sensation in that area. I'm tired all the time and get very hot for no reason, and very flushed. I sweat so much deodarant doesn't help. Lets see if I am forgetting anything? Oh yes of course, I have been to my doctor like 4 times and to 2 surgeons, and they all said it is nothing! Now what? The swellings are still there and there seem to be more than one lymph node now in the same area? What can I do, could this be a lymphoma? Oh, by the way I just turned 30 in August. The only blood work that was abnormal was my ESR, it was increased. I had a cat scan in May, but there was nothing there or the x-ray. Maybe to early, I don't know. If anyone has any suggestions as to what I should do please let me know, I would appreciate it vary much. I don't know if I should just let it go and deal with it. My doctor said there is nothing else they can do. I have been there at least 6 times since this all started. Thanks for reading this I know it is lengthy and I apologize for that.

[This message has been edited by chuch71 (edited 10-29-2001).]

[This message has been edited by chuch71 (edited 10-30-2001).]

Chuch71.

Sounds of odd that 4 doctors never gave you any information or follow-up. Talk to your family, perhaps they spoke to one of the doctors and amy have "some" type of information. If not i would visit my internist and DEMAND answers! Good luck to you.God Bless.........

Thank you for you're reply pelenaka. The only trouble is, I do not have an internist, and due to my HMO, the only way I can see one is with a referral from my PCP. He has already given me 2; one for 2 different surgeons. Neither times would these 2 doctors let me even get a word in. They couldn't feel anything, therefore nothing was wrong. I was there all of 10 minutes; if I was lucky. Neither of them, along with my PCP, know the full extent as to what is going on. They won't let me inform them. Once again, I sincerely thank you for your reply, and your blessing.

The only option I know that you have left is possible intracellular hyperthermia. This therapy heats the cancer cells up to thew point they can't survive from the inside out. The only problem with this therapy in a patient like you is it may kill so many of the cells in a short period of time that you may get a tumor lysis syndrome.

[This message has been edited by moderator3 (edited 10-31-2001).]

The only problem is that I have no idea what the heck is going on. They don't even know. They won't even try to find out. I am not sure if I even have cancer or not. None of the doctors will let me explain to them what is going on. I usually can get about two words in, and that is lymph node. Well they don't feel it so nothing is wrong. Yu know what if I am right, and of course the sooner the diagnosis the better. It has been 8 months now.

I have intermediate grade aggressive NH lymphoma and was told when you have a low grade 1st stage lymphoma they sometimes have to wait and see how it developes before they can treat it.

How long? Its been 8 1/2 months. And the last few nights there has been an aching type pain above my colorbones, on both sides, and the swelling isn't so squishy anymore, it seems harder somehow.

One question that I cannot find the answer to in any books is, how long can symptoms go on before you know for sure that it is a lymphoma?

[This message has been edited by chuch71 (edited 11-02-2001).]

Im not sure on that but if you e-mail me at 6807sadler@home.com I may be able to give you some more info.

Hi chuch71,
The lymphatic system is there to fight off infection (amongst other things). When they are enlarged, the most common reason is that you have an infection somewhere. The infection doesn't even have to be noticable to you. The itching, fatigue, and weight loss (especially the itching) sounds like a liver problem, maybe hepatitis. Have you been tested for that? Also, if you have an infection somewhere, and you fight it off, it can take several months for your lymph nodes to go back to a normal size.

Some infections that would cause enlarged lymph nodes in the neck are:

bacterial:
strep throat
other types of bacterial pharyngitis (sore throat from a bacterial infection)
cat scratch disease
tuberculosis

viral:
infectious mononucleosis
HIV disease (AIDS)
rubella (German measles)
viral pharyngitis
herpes infections

malignant:
Hodgkin’s disease
non-Hodgkin’s lymphoma
leukemia
metastatic oral lesions (mouth cancer)
other malignancy

thyroid:
Grave’s disease
goiter
carcinoma

other:
allergic reaction to a drug (medication)
food allergies
other allergic reactions

So see there are lots of things it could be. It is sad that these doctors are not listening to you. You really do need to get in to see one that will listen. Maybe a good thing would be to make a list of all the questions you have and hand it to the doctor when he comes into the room. Get mad in your mind when he starts to leave and go in with the attitude that "by golly I'm paying alot for this and I want some answers" Because really you are. http://www.healthboards.com/ubb/smile.gif


[This message has been edited by Carreen (edited 11-03-2001).]

Thank you Careen for giving me some other ideas to think about, it was very helpful. And Mur thank you for your e-mail address, I will e-mail very soon.

chuch71, I got your e-mail but it did not give me a return address to back to you.

Hi, in response to your problem.
First off...if I understand correctly, it has been almost a year since you have noticed this stuff.
In the last 2 years...there have been a few lymph nodes I have noticed as well as being questionable....they were able to be felt even though I had no sickness or infections....they were painless and in areas where most people who develop cancer first find nodes. For instace, I had what I believe to be a very hard lymph node above my right collarbone...or the supraclavicular region as you mentioned. I also had one in the cervical region...the lower neck. Anyways, I was VERY worried and almost convinced I had cancer and as a result read everything I could on lymphomas and Hodgkins.
Basically, they ended up being nothing...Ive had those nodes and they still are there. My point is sometimes it is natural.
Anyways...from what I know I find it unlikely that you will find these nodes...and then after 10 months still not be very sick or notice some problems in your bloodwork. Even slower grades of cancer....you will notice them getting bigger....have yours increased in size at all? Have they became harder over time?
You may be worrying so much that you are causing these other symptoms...the weight loss and night sweating from worrying....even though its probably nothing. Doctors are not dumb....they have to protect themselves if nothing else...from lawsuits. In other words....if your docs thought this was troublesome even in the least...or could be potentially someday...they would have referred you to someone or at the very least..performed a lymph node biopsy.
I really think you are fine....
Plus....if you have lost a lot of weight, you likely will be able to feel nodes that have always been there because fat is not there to cover them now.
In terms of the node in your jaw line...likely a salivary gland which can become very big and painful.
From what I have read as well....Hodgkins usually starts in the neck or collarbone...but in most cases it is documented that it only stays on one side of your body....so if you have nodes on your collarbone on both sides....that probably is a good sign that it is normal....anyways it usually starts in the neck and then goes to the mediastinal node...in your chest..which you cannot feel....thats why the chest xray is done. It would show a mass in your chest if this were the case.
Actually, Im just rereading your post and notice you said the nodes get bigger and smaller hourly. Cancerous nodes DO NOT shrink in size ever. They progressively get bigger.
I really think you have nothing to worry about and are causing yourself most of these sypmtoms because of stress...which can cause your immune system to weaken and thus might be harder to fight off sickness. You might want to see a psychologist or talk to your doctor about how you are so stressed about this so they can get you the help you need. Its doesnt mean you are crazy by any means....you likely have just been awakened by the notion that cancer can happen to anyone and can be deadly.

Hello chuch71, so sorry to hear that you are going through. I am patient at MDACC, lymphoma clinic and have what is called a difficult case. I am in a stage that is called watch and wait. They do not give treatment unless you are in full blown stage cause it does more harm than good. It is also called indolent, meaning slow growing. I have all the clasic symptoms too. You mentioned that your sweats needed deoderant, well the lymphoma sweats are not from being hot and sweating an odor that needs deoderant, it is just water pouring out that has no odor like when you are hot and sweating, I also freeze with these spells and feel real sick. Before medicine I would sweat 12hrs non stop changing into dry terrycloth robes and have thick body towels that I lay on to keep bed from becoming wet all I can say is the sweats I have are a nightmare. I have a medicine that I take that is woorking and has calmed it down and do not have to have those 12hr spells, but they are not gone and onc says treatment is only thing that will stop the sweats. Get a second opinon to confirm what is going on with ya. Here in Texas we can have a second opinon with laws to keep the dr from refusing or talk to your insurance to see what the policy is on second opinion. There is so many things it could be and there is the possibility of infectious diease but a PCP should send you to specialist to rule it out. Do not feel it is cancer,till all else is ruled out bbut your right time is everything and you should not have to go through the not knowing, if PCP will not check you out and give you thr referal you need then call and get new PCP that will listen to you and not blow you off. I am 46 and have been ill for over a year now, going on 2 years and I had trouble in the begining with my PCP so I got a PCP that would listen and run some tests. In no time I was sent to MDACC in Houston, Texas, to get the care I needed. They also found a tumor on my thymusgland and it was growing, at my age I am not suppose to have a thymus gland, it is suppose to dry up at the age of 10 when your immune system takes over. The thymus is your immune system from birth. I have enlarged lymphnodes in side and back of neck, back of my head [just above the neck], in my chest, under left arm or right cant remember right now],my groin and just below the groin in my legs, and hyperplasia of the lymphnode system. I also haave lymphedema from waste down off and on I have ct and lab work every 3-6 mos and 2 BM.I also had a muscle biopsy, anyway enough about me, you go get some answers so you can be at peace. take care gidget

[This message has been edited by gidget (edited 12-10-2001).]

Since when do surgeons diagnose hematologic conditions - isn't this usually done by HEM/ONCs?

gidget here, this is a reply to the last post. Surgeons and onc surgeons do not dx. It is the pathologist that does the reading of all biopsy. They can give an answer to what it is while the patient is still in surgery by doing what is called a frozen section or you are sewed up and biopsy results will come in about 3-5 days or so. I may not have understood the reply so if this is info you already know and not what you were asking, please explain what you mean a little better, this was my interpertation of the reply. Have a good one and take care to all.



[This message has been edited by gidget (edited 12-13-2001).]

To Gidget: I agree with you. The point I was trying to make is that surgeons do not have the competency to make such a diagnosis on their own.

To Church71: While you're searching and waiting for a diagnosis and potential therapy, keep a record of all of your doctor visits and test results [preferably, photocopied]. This will help you if you should change doctors, or go for more testing, and you won't have to worry about whether or not you've forgotten something.

To Jay Tor, I could not agree with you more; my first lymph node biopsy was done by a general surgeon who told my family, right after surgery while I was in recovery, that the lymph node did not look like it had any cancer! I should have gone to the cancer center for surgery and biopsy, I knew better but was to trusting.My biopsy was done by a reference lab that won the bid from out-patient surgery center. The in-house pathologist never saw my specimen. Reference labs work with quanity not quality!! Yes there was errors made. I also learned a valuable lesson and any biopsy not done at the cancer center gpes to the OUTREACH LAB where they except specimens for a biopsy from anywhere. Everyone should look into this for any biopsy that is done by someone other than the CC. take care gidget

Hi!

Someone said the "Cancerous Nodes never decrease in size". That is wrong. Mine did. I have Hodgkin's.

I am with you chemo-girl, mine in the back of my neck go up and down too. Not extreme but enough to tell that they have gonr down a bit just to fill right back up, onc said something about amt of trash flow?Mine are enlarging right now and seem to be growing faster than shrinking. Possible biopsy to be scheduled next clinic visit right after first of year. take care gidget

I just wanted to thank everyone for there replies. I just got my computer back, so that is why I haven't responded in so long. I am calling the Regional Cancer Center tomorrow, at least to see if I can talk to someone. I've decided screw the insurance, I will pay for the visit if I have to. It is worth that much to at least here what an oncologist has to say. If he tells me, no there is nothing to worry about, then I will drop it and let it go. But until then, I cannot. Something is wrong, I know my body. I don't know if this is of any signifigance, but for the last two months my hair has been falling out, which for me is unusual. It's all over the place, all over the house, the car, the furniture, the tub, everywhere. It is absolutely disgusting; I hate it! I will let you all know what they say. Thanks again.

Hey church do not let the insurance people bully you , you are entitled to a second opinon, It is the law here in Texas. Insurance does not want a fight on their hands or any bad publicity. They want you to give up and pay out of your pocket so dont let the insurance get away with messing with your life. Do you have a tv station with reporters that will expose the insurance company for walking all over ya? take care gidget

Hi!

Gidget do you have NHL then? How long have you had it for? What treatment are you on?
I'm on 6-8 months ABVD and I've also had 5xrads. I've had 4 chemos so far, scans in January. I get nervous.

P.S. Do I know your from the LRFA Lymphoma Bulletin Boards? I know Chuch has posted there.

This is an answer to the last post.
My real name is sunshine and yes I am from the LFRA board, sunshine was already taken for this one. This is a slow board and I only wanted to try it out cause I am searching for folks that are or have gone through what I am going through. I have not got a confirmed type as the primary is hiding You can read al about my story on the LFRA, I am too tired to repeat right now. You are sharp and my name here is a name they used to call me when I surfed many moons ago! Will not be posting here sticking with the other guys, they are great. I am proud of you to take the bull by the horns. I am also a employee on medical disability from the MDACC and a patient in the lymphoma clinic. My onc is great. Oh the name sunshine was given to me by the cancer patients at MDACC where I worked on a chemo floor. Take care and good days ahead for all

Now I know who you are. I was reading one of your posts a few days ago. Mostly I post on the Hodgkin's side as "happy-fionn" but occasionally I stray to the other side. Especially if teenagers are involved.