12 replies to this topic

[tinac21]

Hello everyone,

Its been a long long while since I have posted here, although I miss and love you guys all, I have had no news for CML in quiet some time. So secretly I wish I was only posting right now about the best of news, like not having to see my Onc for the next 6 months for the first time in 8 years! Unfortunately my news today was with a referral to the head and neck Onc down the hall. After being nearly choked to death and squeezed the H&N has determined the lump under my jaw, and the one to the left (and four more un-know to me) are in fact swollen lymph nodes and we will need to schedule a biopsy to be sure. I'm due back to my least favorite place at Moffiitt to willing let my face be chopped open all in the name of medical whats-a-this-lumpy-thingy. As some of you might know, I have been a Cml'er for the last 8 years and have been in molecular remission since Dec 2009. I'm immune to gleevec (was 800mg and then 600) and am currently on sprycel 100mg. My lump(s) appeared roughly two months ago of which it took me nearly all that time to get someone to refer me to a H&N doctor! Gotta love insurance companies. Anywho, whats a girl to do now with Cml and the possibility of a new DX of Leukemia's BFF Lymphoma too? I have a totally of five lumps starting under my jaw Silvia glad area and running down my neck in "clusters" (as the H&N doc put it) down the left side of my ear/neck. Anyone hear of such a thing with cml? I am aware what we have lymph nodes for but once we determine if they are cancer or not, what on earth do we do about them? Can we just cut them all off and call it a day? Oh if only all cancers were that simple right! lol. I am not going to lie, being Dx with Cml was a walk in the park in comparison of the events in my life that has followed after it, but I am really flipping bricks over the idea of them putting a knife near my face. Crazy right, I mean I let them stab, poke, and prod else where so whats the big deal if they need to cut into my jaw. Id love it if you guys could help me with some questions, the only one Ive compiled so far is if it would effect my Salvatore glads since the one they are taking (I mean literally the whole node) is right under my chin by that gland. I am really stumped about what else I should be asking as this is a whole new thing for me. Shoot any information and love from you guys/gals is always welcome Im not sure if I should be sad due to the bad news or mad that its putting my baby plans on the back burner. Does anyone have a body double I could borrow? This one is just falling apart these days...

Tina

forgot to add my Thyroid checked out fine so that is ruled out and counts are still zero across the board

[Trey]

Have you taken antibiotics to see if it is an infection?  That is the normal first step before any lymph node biopsy.

Generally, CML patients do not have groups of enlarged lymph nodes as a result of the CML.  An occasional one or few can occur, but not always related directly to the CML.

There are numerous viruses, infections, etc that have similar symptoms and can look like lymphoma.  A partial list is:

Mononucleosis, Lupus, Lyme Disease, Encephalitis, Sarcoidosis, chronic fungus diseases, Cat Scratch Fever, Denge Fever, Rheumatoid Arthritis, HIV, etc

There are over 500 lymph nodes in the body, and they perform an important function.  They are part of the lymphatic system which is connected by veins like the blood circulatory system except there is no heart-like pump for the lymph fluid, but rather it moves around as the person moves and the muscles squeeze on the lymph vessels.  The lymphocyte WBCs (B-cells and T-cells) generally live in the lymph system after first maturing in the marrow. 

Removing a lymph node in the neck should not affect the salivary glands (they are different things). 

See pictures of lymph system and lymph node locations:

http://www.lymphomat...g/lymphatic.htm

http://www.nhlcyberf...y.org/nodes.htm

[tinac21]

We are scheduled for a CT scan first and perhaps that might reveal enough to cancel out the biopsy of the node. However I think they might remove it for safe measure. Thank you for the info about the salivary glads, as I wasn't sure if they lay together or near one another. I am honestly not sure if the CT scan will show much, but I hope its enough to prevent the surgery

[Trey]

Most lymph nodes are too deep to feel through the skin.  A CT scan will reveal whether they are enlarged, and also spleen status.  It is important to find out which locations are enlarged.  The more isolated the enlarged nodes, the more likely the issue is local to those specific nodes. 

[Tedsey]

Dear Tina,

All I have to offer are virtual hugs and concern.  I hate that you have to go through this.  I will keep my fingers crossed and send good vibes your way. When you can, please let us know how you are doing and post anytime you feel like talking/venting/whatever.

Tedsey

[tinac21]

Thank you so much Tedsey

I promise I haven't been avoiding the boards. Since they changed to the newer format I have kind of slipped away. Plus with my treatments settling down I have gone back into "cml" hiding so to speak. Honestly other then the multiple swollen nodes all over my neck/jaw Ive been peachy keen. They are just there causing painful pressure on my ear making me feel as thought I have an earache. With a little help from google I now know which nodes they are, the first is a submental, second one over up top is a subandibular, third (the very first one) is a tonsilar, and lastly fourth & fifth are anterior cervical. I am guessing they are all connected in some way. Wonder how common is it for someone to have so many in one area infected? Also why none on the other side? These are all on the left. Guess at this point its just a waiting game until Thursday. Until then I can not take any pain medication that can thin out the blood and unfortunately my ear is throbbing full blast right now. Hope I can make it threw out the week.

[Trey]

You didn't respond as to whether you had taken antibiotics.  That would be something the doc should do first since most of these issues are related to infections somewhere in the body, even if at a low level where you do not know you have it.  Since most swollen lymph nodes are related to  infection or virus, at this point there is no reason to assume lymphoma.  You may even have an ear infection -- do not assume it is the TKI and thin blood causing it.  If it were me, I would see an ENT doc.

The lymphatic system is divided into two separate areas (right side and left side) and they are not connected.  So it is not uncommon for only one side to have enlarged nodes.

http://www.lymphnote...cle.php/id/151/

[tinac21]

Hey Trey,

I am seeing an ENT he was the one who decided on the surgery for the biopsy. I have not been given any antibiotics for the swollen nodes. I was just recently off an antibiotic for something different. So I guess I will just wait to see what the ENT says on thursday.  Thanks for the link

Tina

[tinac21]

So tomorrow is the big day. Have to be up early for the biopsy and I cant sleep. Running all the possibilities of what it could be in my head. One thing I noticed on the "final report" I was giving it mentions this...

there are multiple masses within the neck consistent with lymphadenopathy medially in a patient with history of CML. The findings are most consistent with leukemic infiltration or lymph nodes.

I looked up lympadenopathy but I can make much sense how its possible that leukemic cells have traveled to my nodes when my bone marrow in Jan was perfect and my blood work in Feb was too. Ive had the first node since Nov. Now I have 9 based on the CT scan results. Google is making me crazy and quiet mad at all the information I am finding. This has been the very first time I have spent more then a year in remission since 2004 and its just plain old depressing to think that the "pill" to erase my cancer isnt working. Its like being re-diagnosed all over again, except this time I am more confused then I was then. Will update soon how everything goes, in the mean time, just needed a little vent time.

Goodnight everyone

[Megz]

Dear Tina,

Im pretty new to CML so I can't give you too much, but i'm a dental hygienist. Usually when the teeth are infected or if there is an infection in the mouth anywhere those lymph nodes will pop up. The front teeth along with the lower lip and the gum tissue inbetween all drain into the submental lymph system. Then the rest of the face (for the most part) drain into the submandibular lymph nodes. So if there is an infection (bacterial usually but also viral) in that area,  those lymph nodes will be the indicator. A lot of time leukemia is visible in the oral cavity (tonsils swollen, fire engine red gums, inflammation of gums, shiny appearance, significant bleeding and pain). The ENT should know all this so have him check your mouth and palpate the area. You never know, it could be nothing, I have one lymph node behind my right ear that they still don't know why I have it, they decided it's benign and nothing to worry about. So I hope that for you too!

Good luck tomorrow, im sending positive energy your way! Try not to stress too much, it'll be okay, and you'll get some answers about whats going on. That's always better then worrying about something you don't know the answers too..

Meg

[tinac21]

Thank you so much meg, We have discovered that I have an uncommon form of reactive EB Virus. Apparently it has gathered in my lympnodes and created a mess. After three steroid packs they are still visible but down to a normal size. All is well now, Thank you for your help

Tina

[hannibellemo]

Good news, Tina! At least it's better than the alternative they were first discussing.

Pat

[JeffJ]

Glad to hear you are ok Tina.  I have not been on here lately, but at the end of Feb/12 I too had enlarged lymph node under jaw on right side.  My onc had a biopsy performed same day I saw him by the ENT specialist across the hall at another clinic and CT scan done, as Cml is the second cancer for me.  The first was bone cancer when I was a teenager.  I am very lucky my doctors take no chances with me, and check things out very fast. The lymph node was benign, but last month another larger lump was found as well I have been getting more rashes. So after being on Sprycel (100 mg) for 10 months, my Onc decided to try stopping drug for a few weeks.  Within 5 days the lymph nodes were back to normal size, and rash is almost gone.  Just letting you know.  Enjoy your day.  Jeff