kid with swollen lymph nodes

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi, I am 13 years old. About a year ago I noticed a small bump on my neck. I forgot about it for awhile because I could only really feel it when I bent my neck. Over the summer it started getting a lot bigger. Now it is about 3.5 cm by 2 cm. I wasn't worried because I read online it is only a .4% chance of cancer in my age. However, today I noticed a bump above my collarbone. I think it is a superclavice lymph node. It is about 2.5cm by 1cm. I have no over symptoms except for stomach aches on the left upper side of my abdomin and a annoying cough. I hoped someone could give me some advice about this. I am a fairly famous movie actress and in the middle of a huge project right now and can't really go to the docter.

Boldelly · Posted: Fri Feb 02, 2007 4:44 pm Post subject: Dont wait

Go see your doctor same thing was going on with my daughter and it turned out she had hodgkins. If you wait too long you risk it spreading if it is hodgkins.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Thank you so much for your reply. I will go to the doctor soon if you think there is a real risk that it is cancer. I am going soon for a physical and will bring it up. COuld you tell me the chance of it being cancer? Now I am gettting kind of worried. Thanks again for your time.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

I am going to the doctor tomarrow, because of my cough. Do you know what kind of tests they will do on me?
Also, I broke my arm a couple weeks before I first noticed the swollen lymph node(the one on my neck) could this have caused it to swell?
How is your daughter? I hope she is ok. Good luck with her treatment.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

I just got back from the doctor. I had a 9AM apointment. I went in for the the cough but when I mentioned the swollen lymph nodes the doctor felt them. She imediatly got this really scary look on her face and asked how long I had, had the cough. I said about 3 weeks. She sent me with the nurse to have blood taken and to be weighed. I went from 92 pounds to 84 pounds in the past two months. I am 5 ft 3 in. Is that normal weight loss? I haven't been exersicing more but I didn't notice I had lost weight my pants and clothes were just a bit loser. Anyway I think the doctor might be wrong about that. The cbc showed that I have really really low platlets and I very high white count. Dr. also felt my spleen and said it was very enlarged but not to the point we should be worried about ruptue. Your spleen can rupture? My Dr. talk me and my mom into her office and told us to sit down. THis is when I got really scared. She said I need to see an oncologist/hemologist for some tests. I asked what I had she said see wasn't sure yet but I needed to see the other Dr. soon. I could tell she suspected something so I asked her to tell me the truth. She said it is a could have lympthoma and it might be in my bone marrow. I am not supposed to be worried yet but I am. I will see oncologist/hemologist at 1pm this afternoon. I am scedueled for a bone marrow biopsy, lymph node biopsy and ct scan. Sorry that was so long but I have a few questions:
1- Will all these tests hurt?
2- How soon will I know what is wrong?
3- If it is lymphoma can it be cured even if it is in my bone marrow?
4- How could I have cancer if I just have bumps, a cough, a nosebleeds every so often(didn't know these could be related so didn't metnion them.)

Thank you so much for reading this. Sorry if it doesn't make much sense but I am kind of freaked out right now.

Boldelly- Thank you so much for replieing. Without your answer I wouldn't have gone to the Dr. You may have saved my life if it is cancer.

Boldelly · Posted: Sat Feb 03, 2007 6:19 pm Post subject: I am glad you went to the doctor

I am sorry to hear about the doctor's suspicions, but I am glad you went to the doctor. As far as the testing they did on my daughter like the CT - you just lay on a table and they may give you a little shot of some dye and then you go through a really big ring, the Gallium scan was basically the same thing but the stuff they injected was radioactive isotop and she had to wait two days then they did the test - it will light up all the spots that the cancer is in. They then did a bone scan which is the same thing where you go through this big ring, nothing hurts except the bone marrow but they can put you in a deep sleep to have this done.

My daughter has had a minor set back - last night she started running a fever of 101.8 and called the oncologist and he said take her to the ER, well they admitted her (which she hates). We will be there for about 3 days we hope as long as all test come back negative.

Anytime I can help just write or my e-mail is Boldelly@aol.com or you can e-mail my daughter at xokissesnhugs@aol.com. Let me know how things go for you. Hang in there it will all work out.

As far as how long it will take to find out - my daughter had her bone marrow aspiration done on a Wen. and we found out for sure on Friday.

How can you have cancer from just a bump, well the way they explained it to us is your DNA gets damaged somehow along the way and it can show up at any time now why at 13 or 16 they do not know.

Hodgkins lymphoma is one of the most curable cancers in young people (thank God), they will probably do chemo and something call stem cell transplant, which takes your good cells and they inject them into your bone marrow and it helps your marrow to make good cells, I may be off alittle on the cell thing but there is like 80-90% cure rate for teens with hodgkins.

We would have never know my daughter was sick if it had not been for that cough that would not go away. Her doctor finally did the chest x-ray and found a large mass pressing on her lung and we were admitted to the hospital for testing.

Well please let me know how you are doing because I will be thinking and praying for you. Don't worry too much until your results come back - I know it sucks to have to sit and wait.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Thanks for the information.
I saw the oncologist yesturday. Had ct scan. That was really easy. They did a biopsy of the bump on my neck and the one above my collarbone. Also had bone marrow aspiration and biopsy at the same time. They didn't put me to sleep(just pain medicine and sedative) and I went home about 2 hours afterward. Didn't hurt much. Now I have pain pills to take if it starts to hurt. So far it hasn't much. My arm is in a sling so I don't move it though. This is kind of annoying since it is my right arm.

I learned a couple things from the oncologist-
1. They are about 95% sure it is lymphoma based on blood work. Probably Hodgkins disease.
2. Even the most advanced stages are curable in about 80% of cases.
3. If it is cancer I would have chemo to get in remission then stem cell transplant thing. 75% chance cured with chemo, 90% chance cured with transplant. Said that it will be my choice what we do.
4- He said with all the new medicines today people don't have as bad reactions to chemo.

Anyway, I will go back on Monday for results of biopsies. The oncologist mentioned having a spinal tap/lumbar puncture and MRI of my brain. Has your daughter had any of these?

To people reading this who are having trouble getting biopsies done quickly-
You should go to Dr. O'Conner at Memorial Sloane Kettering. He is really smart and gets tests done quick. Also, cares about comfort and pain control.

I hope your daughter gets better soon!

Thanks for reading this!

Boldelly · Posted: Sun Feb 04, 2007 8:17 pm Post subject: I am glad you went to the doctor

No my daughter did not have the spinal tap/lumbar puncture or MRI. I suspect that since your spleen is most likely involved they want to check to see where it has spread to. My daughter only had it for approx 2 to 2 1/2 months before we found it and she was already stage 4a ( a means that she did not have the night sweats, fevers, and weight loss. We found her early (Thank God). But keep your head up sounds like you have a great oncologist. My daughter loves her Oncologist, we are going to University of Texas Medical Branch (UTMB) in Galveston, Texas.

I have heard of them not putting you to sleep for the bone marrow aspiration, but I guess they put my daughter (Randi) to sleep with a coctail of drugs where she was still breathing on her own and they put her port-a-cath in at the same time they did the bone marrow.

We got to come home today because she did not run any fever last night or today. They had to give her two more units of blood and some antibiotics IV, but it worked her counts are better, not normal yet, but better. She has to wear a (nose & mouth) mask when she goes into the public because she has almost no immune system (white blood cells are down and they fight infection).

Well I am praying for you but no matter what the biopsies say stay strong and remember it is a highly curable cancer. I always tell my daughter that if there were any kind of cancer to get, I guess this is the one (just trying to keep her possitive, which has been hard lately).

Chemo is no fun but he is right when he says that there are losts of meds to control side effects, they say they do not take them completely away, but make then less bothersome. They are giving my daughter Zofran which is a nausea medication that works on the seritonin in the brain that tells the brain that the stomach is nauseated, this has helped her so much. 1st chemo she threw up 3 times, 2nd chemo 2 times, and then 3rd and 4th she did not throw up at all. Also they have her on Filgastrum shots for 10 days after each chemo which that shot helps the white cells in the bone marrow reproduce faster, makes her bones ache but works pretty good on her white cells.

Keep writing and letting me know how you are and if you just need someone to talk too. It will be a hard road but you will make it and when you do you will be stronger than before. They tell my daughter see will never be the same again. That means she will look at things differently (and she already does), you will find out you can do things you never thought you could do, you have to fight, etc....

Thank you for asking about my daughter. I will talk to ya soon. I have made this too long as it is. LOL Very Happy

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi, I went to oncologist today. Found out it is hodgkins stage 4b. The b means that I have a fever. It is in my spleen, bone marrow, 4 sets of lymph nodes, and chest + hip. The good news is that it is not in my brain or spinal area Laughing

. It was a big shock to hear I had cancer even though I thought I had prepared myself for the worst.

Basically I need more tests. I think they called it staging. Even though they already know what stage it is the oncologist needs more info to plan treatment.

I had lumbar puncture which I learned is the same as a spinal tap. Didn't hurt but after I had headache and morphine didn't help. I had 2 MRI's one with contrast, one without of both my spine and brain.

One more detail about oncologist I had a PICC put in because I can't have a port in my chest until my platlets go up.

Also, went to school for afternoon. I was the oncologists idea that I should do some normal things since this is all happening so fast. School was ok except that I am really behind. Havn't been able to sleep because of cough. I have tuters on set though that can help me at home so I should catch up. It was good to see my friends though.

I have one question, though your daughter could probably answer it better. It how do you tell your friends you have cancer? No one asked about bandage on my neck and sling because they are so used to me getting hurt skiing. Also, my boyfirend will be upset even though it is not too serious(I am 13 he is 14) we have been dating for 9 months. Just wondering how you told people.

Thanks for all the replies and I hope your daughter stays out of the hospital and starts feeling better.

Boldelly · Posted: Tue Feb 06, 2007 1:00 am Post subject: Hard subject

Well I told her about you when I first responded to your post, so she knows what is going on with you. We were in the hospital for a week just doing testing to find out for sure if it was hodgkins lymphoma. So she was out of school for a long time (has not been to school since end of October 06) so her friends began to ask why she was not in school and why she was in the hospital. So she told them that they suspected that she had cancer. So when we found out for sure it was cancer she told them that all the tests showed it was definately cancer. She told me to tell you to be honest with them and just explain about having the lump and going to the doctor and doing the testing and it was found that you have cancer. They will support you and be there for you as much as they can. My daughter misses school so much and she used to hate school. They said she could go up and visit the classes or go to luch with her friends but she usually feels bad the first week of chemo and starts to feel better during the 2nd week. I think she does not go too is because she misses it and it upsets her that she cannot go to school. She too has what our schools call home-bound where they bring her work to her and then they come to our house twice a week for about 2 hours and help her with her work.

We also suspected that it was cancer and we tried too to prepare ourselves for the final diagnosis and when they said it was cancer - it was hard. She cried and we thought we were prepared but it hit us like a ton of bricks.

Staging is more test like the gallium scan, bone scans, and PET scans which are more sensitive, but sounds like they have staged you at a 4b, they probably just want losts of verification like they did with my daughter.

Our oncologist also told us to keep life as normal as possible, but it was kinda hard when the chemo started making her sick. On her first chemo treatment she told me "mom I did not even feel bad and now they are making me sick". It is hard on a mom to watch their child suffer.

Just be honest with your boyfriend and your friends because there is nothing you can do about it now but fight with all your might to get better.

Write soon and let me know how your staging went.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Thanks! I had no tests today. I think I am getting a break but I do have a bunch of scans and maybe another biopsy tomarrow.(I don't know what is left to biopsy) I am getting tired of the tests and wish I could just start treatment becuase right now I feel like we aren't doing anything to get rid of the cancer.

Anyway, I told my friends. At lunch we usually go skating on the pond at school that has frozen over. Skating is on my long list of things I am not allowed to do. I figured I had to tell them instead of making up an excuse. My best friend almost cried after asking what stage it was and finding out it was 4b(her grandma died of 4b non-hodgkins). My boyfriend seemed upset but said he knew I could beat it. Everyone was really nice and supportive about it. Said to call them if I needed anything or just wanted to talk. My friend just dropped off first 2 seasons of Greys Anatomy and The OC. She said I could keep them to watch during treatment or in hospital. I still can't go anywhere because my mom got a list of ways to keep things normal and on it is to stick with same punishments so I am still grounded for not doing well on a math test. (My fault for staying out late instead of studying)

Also, I got one tip from my English teacher I thought I could pass along to your daughter. I don't know if she is can do this but my teacher suggested I buy the books we are reading in class on itunes(the audio version of book) and put them on my ipod so I can listen to them even if I don't have the energy or can't concentrate enough to read. That way I stay caught up.

Thanks, and please tell your daughter thanks for the tips about talking to friends.

Boldelly · Posted: Tue Feb 06, 2007 11:08 pm Post subject: Thanks for the tip

I know what you are feeling in this stage of waiting. You just want to start treatment so you feel like you are moving towards a solution or goal. Hang in there it will start soon enough.

I am glad you told your friends because they can and will be a great support for you through this. You may be different than my dauther but when she was getting treatment in the hospital she did not want her friends to come because she felt so bad and did not feel much like visiting. But about the 4th day into treatment (she would go into the hospital for 2 days because they would give her five medications on the first day and then two on the second day which made her not feel so well, then we would go back on day 3 as outpatient and get another treatment (etoposide) and then she would be without treatment on days 4,5,6,7, and on day 8 another treatment) she would let them come and see her and maybe on the weekend go to someones house for a little while or a movie. She was seeing a boy at the time she was diagnosed and after her first week in the hospital he quit calling. She cried and cried and I just wanted to rip his head off (mother instinct) but I told her she was better than that and maybe it was best if he could not handle it. She decided then she did not want to have a boyfriend until after all this was over. But you sound like you have one that is willing to stick by you, and that is wonderful and I am glad for you. Reassure your friend who lost her grandmother to 4b non-hodgkins that hodgkins is very different than non-hodgkins. Give her somethings to read about hodgkins. I don't know about you but we received tons of literature on hodgkins from our oncologist when we first started and there is a lot on the internet too.

It is good that your mom is keeping things normal for you as much as she can because once you start treatment it might not be so easy to keep normal to a certin extent.

That is a great tip about the ipod. I had no idea that it was even possible to do this. How and where would I find these books? Maybe I can talk to her home bound teacher.

Well my little fiend keep posting because me and my daughter really want to keep up with you. She says your welcome and any time you have a question for her or me, just ask.

megd93 · Regular Joined: 30 Jan 2007 Posts: 46

Hi!
I went back to oncologist today in the morning. I had a PET scan. It didn't hurt but I had to wait awhile for the dye to absorb. Then I had biopsy of lymph node under my arm. I think the biopsies hurt more after if you know what to expect. I will find out tomarrow about what chemo I will have and if and when I will have stem cell transplant.

I met with my guidence counseler and principel in the afternoon. I have always hated the guidence counseler and today was no exception. She said a bunch of fake sorry remarks and then said this will improve my chances of getting into a good college. Anyway, about keeping up:
1) My school puts people in classes regardless of what grade they are in for math, sceince and forign laungauges.
So, I am taking math B this year which is the last year of math you have to take. I am also taking the equizelent in Science.(Having tuters gets you ahead). The schools plan for me was to finish as many required things this year and then load up on AP classes for the 4 years of high school. Foreign languages- at my school you have to take Latin, Spainish, and then your choice and I choose French. I am a year ahead in Spanish but behind in the rest. English I am on grade level and the same for social studies. I don't take electives because of acting.

3) THE PLAN- I am done with science and math for the year. I can finish up NYS requirments my first year in high school. I will drop Latin and French for the next two years. NYS only says you have to take 1 laungauge- Spanish which I finished this yars requirments last year. So basically now all I have to worry about is social studies and English which I can do with tuters.

My friends have been totally awesome about all this. I got a bunch of flowers, and get well cards when I came to school even though I didn't go to any classes.( Though I was only at oncologist for 1.5 hour I live in Westchester County and have to go into the city for oncologist)

Family news- My dad flew in from London last night(he is an NBC reporter based there). He was not happy because I had been to the pediatricion a month ago and I told him everything was fine when I came to see him, (I fly to London just about every other weekend) he thinks the pediatricon missed something. He is just mad at everyone because I'm sick. I have to get a second opinion from someone he knows who is an oncologist at St. Judes.

I have two questions-
1) Did your daughter have any relatives who blamed the cancer on random people?
2) Did you get a second opinion and if so how long did it take?

The audiobooks- You can buy them on itunes music store.
There are two ways to find them-
1) Search in the top right search area just like searching for a song but add (unabridged) to the title. Ex. To kill a mockingbird (unabridged)

2) You can browse by clicking on audiobooks in the box on the left side of the itunes store first page
The books cost a little less then buying the actual book and take about 10 munutes to download.

I am sorry your daughter broke up with her boyfriend but she is better then him if he can't deal with cancer.

Sorry this is so long. Thanks! I hope your daughter keeps doing well.

jfkbluecircle · Posted: Thu Feb 08, 2007 6:14 pm Post subject: Link for youth cancer website

Hi, All:
I know there are several of you who are in their teenage years on this forum, or know someone in that age group who is facing cancer and all the disease entails. On January 30 (of this year) the New York Times published an interesting article, the link for which I will attempt to copy and paste here:

http://www.nytimes.com/2007/01/30/health/30canc.html?ex=1170824400&en=a31c339942703e42&ei=5070&emc=eta1

I am a subscriber, so I am unsure whether or not you will be able to open it; regardless, it mentions an organization devoted solely to youth dealing with cancer (their URL is: imtooyoungforthis.org). It is primarily a resource for finding online groups for teenage and youth support for cancer patients.

I am glad that you have found community here on this forum; maybe there might be others on some of those linked to imtooyoungforthis that might be useful and comforting as well.

Boldelly · Posted: Thu Feb 08, 2007 7:36 pm Post subject: Gald your test went well

Yes the PET is not bad except she said you have to lay very still for a long time. They called us and scheduled her second one after her chemo for Feb. 12th, they said that it would take about 2 1/2 hours. Then they have her CT scheduled for Feb 13th of her chest, neck, abdomen, and pelvic area, then on Feb 16th they do the bone scan and inject radioisotope for the gallium which has to stay in her system for three days before the can do that scan. Then we will get the results and know better where she will get radiation.

It sounds like you have your school work all worked out. Randi has had a hard time because some of the chemo drugs make her muscles weak and her hand have almost no griping to them so writing and opening things are very hard for her. She said that typing was even hard now. So we will keep trying but she is probably going to have to do some summer school. I will definately try the ipod thing, thanks for the info.

As far as your dad goes, he is just angry that you are sick. It is sooo hard for a parent to watch their child go through such a hard time of being sick and feeling so rotten. Just bear with him and he will come to terms with it. It is still really hard for me at times.

No we did not have a second opinon, but we have M.D. Anderson Cancer Center in Houston, Texas which is only about 45 minutes away from us and I had a lot of family and friends wanting me to take her there, but she likes her oncologist so much and he has been very good with her treatments.

I kinda wish that I would have followed up on something in October that she had done - her brother has a heart condition in which the left side of his heart does not push out enough blood and it could cause congestive heart failure if he does not stay on his medicine. His cardiologist wanted Randi to have a work up done just to make sure she did not have the same thing. Well we went and they did an echocardiogram (like an ultrasound of her heart) and they did see some shadowing on the echo but they just blew it off as just shadows. Well in hind site it was probably the mass in her chest that they were seeing, so I kinda blame myself sometimes for not following up more on that, but other than that no one has blamed the other doctors for not finding it or me for not taking her to the doctor sooner. But if you can go to St. Judes then I think that is great they are a world renound cancer center.

We also live in a very industrial area lots of chemical plants very close to us - this area has one of the highest rates of childhood cancers in the state. But no one can prove that this is what caused her cancer, but yes it is in the back of our minds. In March 2005 there was a big explosion at one of the plants and it killed 15 people, well for a few days there was a chemical called Benzine leaking out and it is a very cancer causing agent, but is this what caused her cancer - who knows.

Thanks for thinking of her and we both hope things go well for you. I know when you start chemo it may be hard to keep us informed but pleas every chance you get write and let us know how you are.

Well like you sorry this is so long but seems like we always have lots to say to each other LOL. Keep your spirits high and keep the faith that you will make it through.

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