I would like all that are living with lymphoma symptoms and enlarged lymph nodes to tell me your story. I also had thymus gland removed.
I have noticed that there are many viewers but little replyers if at all. Join in and tell your story, I know I am not the only one with a "difficult" case.
Take care....gidget

Hey!

Have you tried mailing lists?

Fionn

Here's the link to a leukemia and lymphoma patient site which also has patient bulletin board. Don't know how helpful this would be for you as it sounds as though you haven't received a positive dx for lymphoma.

http://www.leukemia-lymphoma.org/ubb.adp?frame_url=http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro&item_id=9388

The link below is a lymphoma information resource for different lymphomas.
http://www.lymphomafocus.org/

Good luck,
Jay

Thanks for the replies,
I am a patient at the lymphoma clinic at MDACC
I have net been confirmes as the type of lymphoma and onc know I have it but not able to locate primary site that is now believed to possibly be in my spine. There is a shadowed area and it is a concern that that is hot spot.I also have paraneoplastic syndrome, confirmed with muscle biopsy. I have a free tickett to lymphoma compliments of the paraneoplastic syndrome.Onc said I could even go into leukemia will have to wait till becomes full blown or primary is located. I am in palliative care and have surgery monday to remove 2 lymph nodes from groin that are growing and siince last scan has grown more and is now the suspected area for answers, my lyymphoma symptoms continue and have done so for almost 2 years now. Last few weeks my night sweats are hitting me several times a night and soaking everything.I have had 2 mini-strokes that can be lymphoma related just do not remember how it was explained to me, my petiche is worse on legs and edema is bad in the legs and abdominal. I signed permission for onc surgeon to do whatever he felt was nessesary once I am in surgery.I have a great onc ans is doing everything he can and I am being kept comfortable.I am staged at w/w.with scans every 3-6mos. I hope monday will be a turning point and all can be confirmed.

MDACC is an excellent cancer center according to various cancer patient sites. Have you read up on the lymphomas? The second link I posted has descriptions of many types. [I'm more familiar with the AMLs.] Other excellent information sources for lymphoma are the Johns Hopkins, the Hutch, emedicine.com, Oncolink and Cancernet.

Night sweats - my child had this mostly during the first weeks of treatment. High fevers and huge weight loss at the same time. Scary. Suggestions: wear cotton PJs and put cotton terry cloth bath sheets/towels under your bed sheet and around your pillow to soak up the sweat. You'll still have to change sheets often, but you'll feel much more comfortable and have fewer chills because the toweling will wick some of the moisture away from your body.

Mini-strokes - Is your doc giving you any blood thinners, preferably low molecular weight heparin [Lovenox - sp?]? Our child had a significant embolism secondary to the leukemia and required heparin subcutaneous injections twice daily for a few months. One caution - this stuff stings/burns like the devil. The explanation as to why strokes/emboli happen is because the platelet cascade is disrupted with lymphoma and leukemia. In AML, this is due to too few platelets being made plus other factors.

Edema - Had this too, alternating limbs. Reason is more and more of the wrong stuff in circulation while the part of the body that normally handles circulatory waste disposal [the lympahtic system] is not functioning properly.

Some things that helped during all this - high density/energy foods and lots of liquids [water and Gatorade for electrolyte balance]. If you've lost too much weight, this may be a good time to indulge in more high-calorie foods esp if they're also high in protein and somewhat higher in fat than is usually recommended. Best bets - steaks with mashed potato, cheese [not the unpasteurized types], banana splits with real ice cream and whipped cream, etc. - you get the idea. Salads and other raw produce [esp with thin skins you eat, e.g. grapes, lettuce and strawberries] are not a good idea if you're neutropenic - the risk of bacterial or fungal infection is not worth it. Avoid high MSG foods as these can worsen your edema, and stay away from grapefruit [whole and juice] because it interacts with many drugs.

Good luck with your surgery on Monday,
Jay