I usually post on the lupus site. I have lupus and scleroderma. A little over a year ago I had a couple of lymph nodes enlarge. One in my right arm pit and then swelling over my left clavical. My rheumi said these were concerning areas and sent me for a ct. nothing...So we decided it must be part of my SLE and increased my meds. Now a year later we have changed my meds I have been on steroids all this time and several different antibiotics. Still the nodes grow. I also have drenching night sweats, I mean I have to change atleast once a night! Low grade fever every day, but this can also be part of my lupus. My left arm has swollen 3/4 inch bigger than my left and I am right handed. My bp has gone up alot 170/100 and have been put on really strong bp meds. My neck is swollen with many nodes and my thyroid has been checked over and over which is fine. ok...now my rheumi has referred me to an oncologist to rule out lymphoma. my gp has joined in to try to figure this out. All we know is I am definately declining. The fatigue is so bad it takes me 2 hours to just put on my make up on in the morning to go to work and I am really struggling to do that now. I hate that part the most because I love my job!

I saw the oncologist today. I figured he was going to say that based on my ct 8 months ago which was clear he saw no reason to suspect cancer. I REALLY expected that. Instead he is sending me for a pet scan. They are removing atleast one of the nodes for sure. He said depending on the pet scan. If nothing more concerning shows it will be my node under my right arm pit which he said is definately larger since the ct could not pick it up 8 months ago and now it is atleast 3.5cm base on the palpation. I know it is larger than it was, I can feel it when I lower my arm. It also looks and has looked for a year now, like darker there. I use to wonder if it was just not shaving well or something. But it has always been tender so I figured this is a good thing since everything I have read said the bad ones are painless. They also said I have swelling in my upper chest. These are all things that have been going for over a year. The ct they did in Feb was normal.

He said the risk isn't high but it is there. I guess I am really just afraid to be afraid. Being afraid seems like I am admitting that there is a possibility. But at the same time, man I just want them to find out what the heck is making all of this painful swelling on my LEFT side and sucking the life right out of me! It is hard to breath, swallow and the pressure is unbelievable. They said they believe it to be SVC syndrome and that I have lymphnodes in my chest that are swelling and blocking a vein partially. They are also concerned about me having so many rib fractures in the past 18 mos (5 ribs at 3 different occasions) 2 occassions due to coughing and one time I have no idea what caused it.

God all I want is it to be fixed. If I have to go through some more rough times to get better, I am truly ok with that. Just as long as down the road I atleast have a possibility of feeling better than I do today.

I really don't think or feel it is bad (terminal). My gut tells me the blockage is the most serious part. I am just wanting to know WHAT the problem is and get it fixed.

ok...I vented...done. Any advice will be very much appreciated. There may be a small part of me that is a little more afraid than I want to admit.

Erin
Dallas TX

Hi,
Just want you to know, I sympathize with you.
I'm not familiar with lupus or scleroderma, but I've had members of my family tested for lupus. It turned out my particular family member didn't have it, fortunately.
You sound like you've been through the mill.
One thing I've found, through illness (I've gone through chemo & radiation) is that the "not knowing" part is much harder, than the actual "knowing."
When you find out exactly what's wrong, then you can arm yourself with knowledge and fight whatever it is.
Knowledge is power.
Good luck to you & keep us posted.
I just want you to know you're not alone.
S.

Thank you singer, I appreciate your reply. Still pretty down. I have so many lymph odes swollen, I really think it has to be part of my autoimmune problem. From everything I have read this is completely different from how it would act. I have been so sick. Every node I have is swollen now..neck, arm pit. The area on my chest above my left breast, now even my groin. It seems to be more like an infection or virus that is out of control than lymphoma. I was back in my internist's office today, begging for some relief. He gave me an antibiotic shot and increased my steroids and we are trying another round of antibiotics. He also ran some more blood work. Hopefully this is just that, a virus or infection out of control and they will get me back up and running soon. I even had him run another EBV test...just to make sure that isn't the problem too. I have just never heard of a person getting this sick and widespread this fast with lymphoma.

They scheduled my pet scan on the day after christmas so no carbs or sweets on christmas!!! Atleast it is at 10:00 am so I can have coffee and breakfast on christmas morning.... I am thinking PIE!!!

I really just want this over with so they can figure out what is kicking my BUTT!!! Hopefully when they do the biopsy on whatever node the end up picking they will be able to figure out what it is...


Erin
Dallas TX

Erin,
You poor thing.
It's terrible to feel bad, especially during the holidays.
But, the good news is you'll find out soon, so they can begin treating you properly.
That's terrible...
no carbs on Christmas! That's definitely a bah-humbug! Yep...pie sounds good in the morning. I've had a thing for keylime pie lately. Up north, you have to buy it frozen. It's just not the same as the kind you can get down South.

Hopefully, this round of antibiotics will do you some good.
Until then, keep the faith.
:angel:
S.

I am going for my pet scan tomorrow. I went to the GP yesterday. I have more nodes swelling. I had him run an EBV test just to see if maybe that was the problem. I mean we are talking about lymphoma, why not something more simple right?? Nope, it was negative. I showed him the two new ones I had and he said, maybe it is a muscle. It is round hard and the size of a large pinto bean and you can actually see it sticking out of the front of my arm pit. That is not even the one they felt at the oncologists office last week, why because it was NOT there! How would that be a muscle?.... I just looked at him. They wonder why we get so mad, but sometimes it is like they want you to think you are crazy or paranoid. I actually made my sister (she worked at texas oncology for several years) feel it to make sure I wasnt imagining it. I mean you start doubting yourself after a while. Am I being paranoid? I have been so sick for the last few months. I have my share of health problems but this was so much worse than before and I have been screaming at them it seems like saying, please listen to me, there is something really really wrong here! Now that I have been referred to the oncologist, I go back and forth between complete and total fear to thinking again, I am still paranoid. My throat is so swollen it feels like I cant swallow and there is just so much pressure my ears hurt. I actually even considered I was just having a panic attack because it feels like it is going to close up completely, but they don't last for weeks do they? I have been telling them that there is something swelling in my chest for months. I can FEEL it!!!! It hurts every day and there is just so much pressure. Cat scan said nope...crazy right. Yet here I am 8 months later, still getting worse, new knots everywhere. 4 different antibiotics and even an anti-fungal (steroids make me susceptible) and it is still worse. The last few weeks have really gotten worse though. I have even tried to tell myself that this must be some mass infection that they are just not hitting with what they are trying, but that is really starting to sound nuts. My white count is not even that high... 12K can be from steroids too. I am just praying that I do not light the pet scan up like a christmas tree. I just want them to find out what the heck is going on and tell me what can be done for it. To KNOW why I feel so bad and that I am NOT crazy.

Just needed to vent!!! I have to wait till my appointment on friday with the oncologist for the results of the pet scan. They will schedule the lymph node biopsy after that. Please tell me that he will tell me on Friday if I "light up". I am really hoping not. They will do the biopsy anyway and atleast be able to tell me what is causing all of this. I am just praying that if they see something on the pet scan before the biopsy they will tell me and not hold back anything. I need to know!! With the number of nodes I have swollen, if it is lymphoma, they should know from the pet scan. If it is negative then it will have to be due to my autoimmune problems and they will then be able to treat that.

It is ironic, for months I have have been hoping for a test to show what is making me so sick. I was beyond caring what it was, just find out so I can get treatment and get better or know I am not losing my mind and have crossed over to some hyperchondriac hell!!! lol... This is the first test that I have taken that I am completely terrified will be positive. With the CAT scans I was hoping they would find something...not on this one!!!

sorry for the long post... I just really needed to get this out and I can't put this burden on my family. I know they are scared too in their own way.

Christmas was so weird. I know they were thinking about it. It was like the giant elephant in the room that everyone pretended didnt exist, except to joke about the no carbs or sugar and watch me go into Dr Pepper withdrawals....Lol..

The only comfort I could take was thinking that it couldnt move this fast. I thought it took months or years to move from site to site..not weeks or days. That is really the only thing I can think of anymore to make myself even hope this test will be negative.

I know most that post on here have already been through their own hell with all of the fears that go with that and can probably identify with this. This is the first day I have actually hoped maybe.... I am crazy afterall!!

Erin
Dallas TX

Erin,
Just checkin'....
How did it go today? Pt/Ct scans are relatively 'uneventful,' aren't they?
Of course, no test is fun.
I know, it's the waiting that's rough.
I'm praying for you for an A # 1 scan.
S.

Singer, I got it done! They had to put the IV in my foot...that was new. I have had so many draws and IV's they never put one there... It didnt hurt at all though. The test wasnt bad at all... The hour nap in the dark was actually good. I went to work afterward and tried to keep as busy as I could. It is hard because I still feel so crappy, but laying in bed isnt helping either.

I was sort of losing it a bit last night. I have pulled it back together today though. I figure it is what it is. If it is lymphoma/cancer, with the number of sites I have and nodes the pet will tell them even before the biopsy. The biopsy will be just to type it. So, if Friday I dont get the news, I will breath pretty easy about cancer and then just hope the biopsy will atleast point them to what it IS.

Thank you for checking in though. I am sure you remember this time in your life too and I am so glad you came through yours. The not knowing is really the hardest. Once you know what you are dealing with you can pick up and start toward where you need to go. The limbo really sucks!!! lol

Erin

Dallas TX

Yes, the waiting is really brutal.

But, your attitude is great & time to move forward.

Wow...I never heard of an IV in a foot, either. That's good to know.
I have a port & "will" have it for some time---hopefully, someday "soon" it can be removed.

Stay in touch. I'm praying for a good scan for you.

S.

Just checkin' in....
Did you hear anything?
How're you doing?
S.

no... my appt at the oncologist is tomorrow..friday at 1:00. I will know then...tomorrow will either be pretty bad or it wont be lymphoma, that much I feel pretty confident of. I have too many for it not to very evident on the pet scan. If the test is negative, I will know it is autoimmune related (which it could very well be) or anything but cancer. If it is positive, it will be stage 3 atleast based on how many and how widespread it is. There really isnt a way to feel, you know. I am just preparing myself as much as possible while keeping a little hope too and not let myself borrow anymore trouble than I have to. I am going to work tomorrow...it helps to keep as busy as I can. I told them if it goes badly I will call them but will go home or whatever they tell me to do..but I won't be going to my work and disrupt things there and it will be a long weekend too.

I will let you know something tomorrow...if it goes ok I will go back to work and send you a line.

Keeping my fingers crossed!!

Erin
Dallas TX

Erin,
You know....all DAY I've been thinking today is Friday.
I'm so confused. The holidays really play havoc on you. And this was the year I wasn't going to "do anything,..." --yet, one thing leads to another, to another...
I had a nice Christmas, though. Like I've said before, my Christmas wish was already given to me earlier when my onc said, "cancer-free." Whew. Double whew....
In the meantime, you're in my prayers.
I think whatever it is you have to handle, you're doing a fine job.
And like you said, "then" you can tackle it, head-on.
Yes, please keep me posted.
The bestest of luck to you.
XO, S.

I know with the holidays and all I asked 2 times what day it was today. After tomorrow, when I will be able to thing a bit more clearly, you will have to tell me your story. I know it ends well since I have you here cheering me on...thank you so much for that by the way....you have really been a great help. Instead of telling me it was going to be ok...or feeding me medical statistics, you have been quietly supportive and completely empatheticly knowing that nothing will help right now except that appt telling me yeah or nay. Oddly enough I will still be sick, and still have no clue why...but I wont have a malignancy and well that can be nothing BUT good!

If it is not cancer, then I will just have to make them keep pushing to find out what it is.. at the rate these things are growing and recruiting friends, they should be able to nail it down soon. I am getting beyond the early stages of anything so the labs and biopsy should nail it down. I will still have to take chemo...there is no doubt of that. The next one down the line for us to try will be Cytoxan. It wont be the same by any stretch as the therapy I would have to do for lympoma though.

But, they better move pretty fast. My throat is in dire danger of closing up and actually feels like it has quite often. I get very choked and cant swallow. So whatever they hit me with it will have to be hard and fast before irrepairable damage is done.

Erin
Dallas TX

Erin,
Well...I'm still up...and today is your day.
Just want you to know I'm thinking of you & praying for you.
When you find out, post and let me know.
God Bless.
Singer

Hey, I just got in... it is not cancer! My pet is negative...The doctor was so cute about it. He said he doesnt get to say it very often but I am cancer free!! Now we just have to find out what it is that is doing this to me, but not there. I am so relieved and yet still frustrated...it is wierd. I still feel so bad, but I am so relieved at the same time. The only bad thing is I still have to find out what it is that is causing all of this which means more tests. That part I would have been happy to have over with. I go back to my rheumatologist on the 8th and they will be ordering the full panel of tests again along with a muscle and lymph node biopsy. He said it is going to be a part of my autoimmune problem either the lupus of the scleroderma that is causing all of this. The Scleroderma is new and I was really afraid of it when they told me about it. I think God has helped me with that alot this week. This was his way of telling me things could be so much worse. With the type of Scleroderma they believe I have, the first 5 years are the diciest... after that it smooths out and your survival rate goes up pretty good.

Thank you so much for listening this week. I was sooooo terrified. I could barely breath today. As bad as I have felt and as quickly as I have declined, and with all they have tried with no improvement, I was very very afraid it was going to be lymphoma. And with is so widespread if it was, it was going to be very bad. So I caught a big break today. I am really trying hard to concentrate on that.

I am off to bed. I am completely drained! lol... I will check in tomorrow. Again, I cannot thank you enough. I really needed someone to vent to this week and I just couldn't put any more on my family than was already there.

Talk to you tomorrow,

Erin
Dallas TX

WONDERFUL news!!!
Sorry I wasn't here earlier---computer problems....

That's great. Now, you've just got to do some probing & putting some pressure on the doc's to find out what's up.

I'm way up past my bedtime---couldn't get on the computer today...
Anyway, that's wonderful news.
Good luck with the next "round."
Stay positive.
Glad I could help some. I'm just a "post" away....
God Bless.
S.