Hi there, if your axillary nodes or neck nodes are still swollen I would push to have a biopsy done. Have you had a scan of these areas? In order to gain any peace of mind, esp because you keep having these issues you need to get answers. It took me almost a year to get my final diagnosis. In short, swollen neck nodes, ultra sound, blood work, Antibotic, told I had Mono. Nodes still swollen, tired, sore, sent to Allergest, skin tests and blood tests, all negative, sent to ENT, more antibotics, no result, CT, suggested biopsy, biopsy of neck node, positive for Diffuse large B cell Lymphoma, full body scan, stage IV, port put in, set up for Chemo to start. But questions arrose about the type of Lymphoma so I decided to seek a second opinion and went to MD Anderson. They ran all the tests again, including bone and heart and the diagnosis was changed to SLL IV, which is a slow growing, incurable type of Lymphoma but did not require Chemo at this time and I am on Watch & Wait. So you can see how even after you get some answers, (and I hope you do) you will still have to make sure you are your best advocate. Good Luck to you and keep us posted. I hope you get good news when you get your answers.
Kathy

K.Beale, Thanks so much for your response. I have been sick for about a year and have actually been keeping a journal. Today I pulled out the ones from the beginning of the year and had forgotten some of the symptoms I had been having. I had forgotten I kept having intense itching on different parts of my body, I only thought it was my arm. Lately, I wake up and my lower back hurts so bad that I have to get up because I can't go back to sleep. It is not often but seems to be increasing. I just seem to have a lot of weird things, can't urinate, urinate constantly, feeling of needing to urinate. Horrible heartburn, not relieved by anything, needing to eat but full almost immediately... And of course, the weight loss, which is not an easy feat for me.

Luckily, I work in the medical field and am able to access information easily. I have a good grasp on medical information and know that I am my best advocate.

I have an appointment with a new internist with a great reputation next week. I have all my records and symptom lists to take with me.

Again, thank you so much for your help. Good luck with your treatment! I will keep in mind getting a second opinion, as well as making sure my biopsy sample gets sent to two different pathologists for diagnosis. I have Moffit Cancer Center nearby so if I need to, I can go there. At this point, as much as I don't want this to be the answers, at least I would know what is going on.. That is the worst, knowing something is not right but not knowing what.

Hi Mel

Have you explored the gallstone option? You've had abdominal scans so I guess it would have shown up then if it was that but many of the symptoms can be confusing as they can indicate both lymphoma and gallstones. Have had this issue myself and I have both small lymphocytic lymphoma and then got gallstones 2 years after diagnosis. Many of the problems I thought was due to the SLL were resolved by having my gall bladder removed. The intense itching, heartburn, feeling full very quickly, pain in the back and on the left side under the rib cage at the front (despite the gall bladder being on the right side). Also, I have lypomas on my collarbone as well, they're movable rubbery lumps and completely harmless apparently.

Have to say, if you do have lymphoma, I'm envious that you're losing weight...I just keep getting fatter!!

It's all so frustrating as lymphoma can be difficult to diagnose...doctors seem to go for the obvious choice...infections and allergies to asthma and other things.

KBeale, funny you mentioned the Allergist. I had 2 years of allergy shots to cure a horrendous cough, thought to be due to a bad dust allergy...turns out it was the lumps in my chest cavity irritating my lungs...though I do have a bad allergy as well!

Hi Mel

Have you heard of a drug called Pariet (that's its name in Australia but it may be different eleswhere). I take it every time I take any medication including things like Panadol. It seems to protect the stomach lining from the harm from the drugs and prevents heartburn and stomach pains I get from almost all drugs. I started taking it after getting bad side effects from antihistamines and anti imflamatories and it's a miracle drug as far as I'm concerned!

I'm a big fan of fish oils and have a great interest in vitamins and minerals assiting in preventing and curing illnesses etc but I have to admit to being a bit on/off about actually taking these things. Will give the fish oil another shot though thanks!