Hi! I hope all of you are doing good! I had my new doctors appointment and he thinks I do have lymphoma. I didn't think I had to worry because my lymph nodes are painful, but he said that when you have multiple lymph nodes like mine (neck, under chin, collar bones, armpits, and groin) and they are long strips, not big balls that they tend to be painful. I guess some of them could be precancerous and some are cancerous, but they are all relatively small in size. I will be going to an oncologist on Thursday already. They said that it usually takes 2 months or so to get in, but they got me in in two days so I thought that was kind of weird. But the really weird thing it this: My boyfriends mom died of cancer 2 years ago and my doctor is going to be the same doctor as hers. When my ENT referred me, I thought the name was formiliar. Anyway, what tests do you think the oncologist will do? Will he do some on Thurday do you think?

Well, I hope you all are doing well! Please keep me updated! All of you have really been supportive through these 2 years in finding a diagnosis. Thank you! :wave:

~Nicola

Oh my goodness, Nicola. Two years for your diagnosis?
I'm so sorry to hear that. I have "Hodgkin's," and the more I learn (especially from this forum) the more I'm ready to take action and eliminate the cause. My first appointment with my Oncologist was last week, and it's a good thing I had my husband with me (take someone) because I needed his "ears" as well as mine. I took notes....you just can't remember everything. Everything is done is a seemingly "manner," and it's all routine for them---but it has a tendency to "upset our apple cart" and change your life....but only temporarily.
With every situation is different, I assume. You may not need lots of tests--I've had MRI's, PET scans, and blood marrow biopsy, blood work, etc...---and through it all...my friend "Ail's" was telling me "nothing is quite as bad as you make it out to be"...and she was right. Anticipation is the worst---as, I am still (as I type) going to one more doctor in a little while. My "journey" is finally winding down some---I need a "port" put in, since my veins are small. It's seems to be protocol, as of late. They say it's much easier for all involved to have a port put in.
Take a deep breath---and get informed. The other ladies on this forum have literally become my "life savers." As you know this is a curable disease--
I'm excited to think of being "normal" someday. I haven't felt "well" for years. Set your focus ahead & your sights on becoming a healthier version of you! Knowledge is also power, as I'm finding out. It's become quite a journey---a quite long one, and I haven't really even started my treatment...just yet.
Hang in there---and talk to these wonderful people that are virtually full of knowledge & lightheartedness. They've become my guardian angels..with an "edge."
I've been reading your posts, and I'll certainly pray :angel: for you.

S. p.s. I hope I'm giving you good advice, as I'm still "seeking" advice myself.

hello. It has been almost a year for me and they still dont know what is wrong. I wish you the best. I got your post earlier my name used to be star on here but I had to change it. I am in bed all day today due to my severe back pain. I have a doc appointment today hopefully he can tell me something. I am trying to get better because I am getting married next wk.

Nicola I am keeping you in my prayers. I am also about your age and have similar symptoms. I am going to see another doctor I think mine is giving me the run around.

Yes, you are right Singer, two years is a very long time for a diagnosis and its actually been a couple months over two years! I haven't felt well for years either. Going through this trying to find a diagnosis, doctors have told me: its heartburn, infection, I am crazy, my boyfriend cheated on me and he gave me aids (he really didn't but this is what an ER doctor told me, and he didn't even know my boyfriend) and many other very stupid "diagnoses".

Anyway, I don't think I am going to bring anyone tomorrow, my boyfriends mom died of cancer he still really isn't over it, and strangely out of all the doctors in the Milwaukee/Waukesha area, I am going to his mother's old doctor. I still can't believe that. I am probably not going to bring my mom either, because I don't want to worry her and she is very upset with doctors, since it took so long to get a diagnosis.

Don't worry Singer, you do give good advice :wave: as do many of the people on this board :angel: so, thank you everyone!

I just wanted to say thank you again for everyone whom have helped me along the way and who will in the future! You are in my thoughts and prayers :angel:

~Nicola

i hadn't come across this one yet, when i asked for the update. how did the ENT finally determine it was lymphoma, because if i remember correctly, u had been seeing him a while, and you said bloodwork would have showed lymphoma, but yours didn't?

good luck

Hi Nicola,

When will you have the answers as to if you have lymphoma or not?

I hope that they look after you.

I have also been ill for a long time, I am just glad that at least one of us will soon know the answers to what is causing the illness.

What points to lymphoma, you must have had some tests come back, as it's not something they would just say.

Good luck.

Hi!

I went to a new ENT and he said that my symptoms are worrisome and that he is going to refer me to an oncologist if he can't find any other reason for my symptoms like sinus infection... Well he finally refered me, and yesterday my oncologist did blood work and everything came back pretty good, except for I have low protein blood levels. I also have a disease called Reflex Sympathetic Dystrophy, and when you have that disease you have a much greater risk of getting cancer, mainly lymphoma. So, they think that I have the beginning or the early start of lymphoma so we are probably going to do IVIG to improve my immune system (because with RSD it affects your immune funtion without showing up in blood tests).

How are you ladies doing? Any luck yet with a diagnosis? How are you feeling? Well I go for an ultrasound on Monday because they think my spleen is enlarged or something. Let me know how you all are doing :wave: Ill talk to you later

~Nicola

Nicola,

What is IVIG?

Deb:confused:

IVIG stands for Intra-venous ImmunoGlobulin. Its basically injecting other people's immune system into your own bloodstream. If I get it its kind of like chemo where you have to go to the hospital or clinic and get an IV for a few hours. They said I might need a few treatments or I may have to get it for the rest of my life.

Hi Nicola,

sorry to hear that you have Reflex Sympathetic dystrophy, no wonder you have been experiencing pain, as this is a chronic pain disorder. At least it will explain the sweats and the enlarged lymph nodes as these are symptoms of the illness.

Have you found out what stage you are at for the disease?

I have low protein levels also, I seem to have a lot of problems with my immune system, I am just really pleased that you doctor is doing all the relevant tests, I have been put on stand still, as they are still trying to piece every thing together.

I hope that your ultrasound goes well on Monday, i hope your spleen isn't enlarged. What gives them that idea, are you in pain or is your stomach distended, that's how they found mine out also a Ct scan.

Have a good weekend.

all the best Susie :wave:

Hi Susie! Thanks for your reply! I have had RSD for over 3 years now, . I got it from being a passenger in a car accident. Howerver, I don't think the night sweats and fevers are from RSD, I think its from the lymphoma. As for the lymphoma, I find out for sure at my next appointment on next Friday, after I get some other tests done. But, I think what he said is we're going to do the IVIG thing and then see if that alleviates my symptoms or something like that. Does that sound normal? He also said he wants to wait to do a biopsy, until my lymph nodes grow a little bit more, (as they are long, but skinny).

I don't know, does all of this sound right to you, regarding the treatments and the diagnosis? What were your protein levels if you don't mind my asking? They just told me the results over the phone so, they didn't explain. What do low protein levels mean?

Oh yes, I almost forgot... To answer your question Susie, I think they are doing the ultra sound because I have pain in my upper left quadrant of my abdomen, and some little bumpy things.

You know, I have had blood work done for the past two years trying to discover what this is, and finally something actually showed up. I don't know how to described it, but its like my symptoms boomed or exploded over the last few weeks. So maybe thats why nothing showed up in my blood work until now. One of my doctors did tell me that it could take a long time before lymphoma will show up in your bloodwork.

I know you are not a doctor, but please let me know what you think, and if you think my doctors seem like they are on the right track or if my treatment/diagnosis seems a little odd.

As always, thank you so much to all or you I have spoken with. I can't even express how much I appreciate every one of you whom take the time to reply to total strangers! I think Singer put it best by saying you are guardian angels! :angel:

You are in my thoughts and prayers,

~Nicola

Hi Nicole I'm fighting with similar problems for two years. I had one biopsy, 2 times PET scan, and 3 times CAT scan in last two years. No diagnosis yet. Scanners shows stabile lymphadenopathy, but I don't fill so.
My doc. couldn't believe that my biopsy showed negative results. PET scan conformed that. He said it's something very unusual, and rear. Pathology report actually showed (how they said) SOME cells of sinus hysitocytosis, but my onc. knows that is so rare condition that he can't believe.
But who knows. Remember no diagnose without biopsy, no lost hope.

Check out the web site to see how many benign conditions can be with symptoms that you have.

http://www.pathologyoutlines.com/lymphnodes.html#reactivegeneral

Hi lion

They found exactly the same in my nodes, but my ent hadn't heard of it, what have you found out about it.

I hope you are well:confused:

Fairy-lights