several swollen lymph nodes

summerlover55 · Regular Joined: 22 Mar 2007 Posts: 22

hi everyone.. i am a 17 yr old girl who has several swollen lymph nodes: 3 on the left side of my collar bone, one large one on the right side of my collar bone, several mild ones in my sternum, and several large ones in my abdomen (up to 10 cm in size). i have my 2nd biopsy in 5 days that tells me the fnal results and i am so worried..

i was tested for mono and hiv and the tests were negative..

my doctor said that if i do have hodkins that i am at stage three..

im so scared.. and sick of waiting.. do you know what else i could possibly have?! and what the chances are..

i have had symptoms of HL 2 weeks ago.. but i don't have them anymore aswell as i feel the nodes on my neck have gotten smaller..

any advice or information please!!

mizchief · Regular Joined: 18 Mar 2007 Posts: 14 Location: scotland

hi summerlover,

sorry that nobody has been around to reply to you. i know how you must be feeling though, so as a new member here myself, just wanted to add a few words.

i too have a few swollen lymph nodes, but haven't been diagnosed with anything yet. although i have googled for hours and learnt quite a lot. i can only suggest you do that. i learnt that if the lymph node just above the collar bone is swollen, it is usually a sign of disease and does need a biopsy. if mine remains swollen, that is what i will be asking my doc to do.

there are other reasons why lymph nodes swell and that's mostly due to infection. i'm surprised at your docs words... i thought a doc would never say anything like that unless they were 100% certain. it's a bit irresponsible of him in my opinion.

you just have to sit tight and wait for results. i hope it is something as simple as infection. don't get too down. i know it's a scary thing as my son was diagnosed with bone marrow failure a couple of years back. what i have learnt is, the most scary time is leading up to diagnosis. once he was diagnosed and we had a treatment protocol in place, i know we all felt much better and optimistic that he would pull through - which he did.

all the best with your results. please do keep me posted Smile

x x x

summerlover55 · Regular Joined: 22 Mar 2007 Posts: 22

Hey Mizchief!

thanks for your reply.. unfortunately i do have cancer. After I went for my second biopsy I was diagnosed with HL stage IIIB. I'm so glad that now i know.. i think it was the waiting period of not knowing that just drove me insane! now i am prepared to fight this! I start chemo this week.. ah

how are you? have you gone for any tests or have you been diagnosed with anything?

I hope all is well..

mizchief · Regular Joined: 18 Mar 2007 Posts: 14 Location: scotland

hey summerlover55,

awwww... i'm soooo sorry to hear you have HL - stage IIIB Sad

i'm not a doc, but through my son's illness, i learnt to learn lots - if you know what i mean. whilst the sound of your symptoms wasn't good, we always try to remain hopeful that it isn't anything serious.

but, i like your attitude - you go girl! the waiting period is the worst. once you know what you have and what treatment you have to face, you can get your fighting head on. i found that the final diagnosis for my son was like a great big sigh - a pause amongst all the anxiety, followed by a big "wohooo, we're gonna kick a**!" keep up the spirit and grab all the support you can.

as for the chemo.. when my son went through it (he was just 10), the doc said, the worst thing that patients feared was hair loss. i decided to let him take control of that and bought him a "purple ronnie" hair product gift package. it had a shaver thing, hand mirror and a lotion that was called "baldy buff" - basically a scalp mousteriser Very Happy

he took control and even though he was a week post chemo, his already short hair was falling out in patches, which was quite unsightly. one of the nurses hinted that other kids had used sellotape to pull out the other patches of hair! he chose to use his baldy buff package and took the lot off. keep in mind, when it falls out it is sooooo irritating, like when you have a haircut and it's all on your clothes. it's the same, but on your clothes, pillows and bed linen. we are all different and i noticed some kids preferred to keep their hair as long as they possibly could and ended up with the long straggly look - hey, whatever suits Wink

as for the physical side effects - keep in mind, the nurses and all medical staff are there to help you through this. you will get anti-sickness medication. but what works for one, might not work for another. if it's not working, ask them to change it. if you're uncomfortable in anyway, tell them. i'm sure they will do all they can to help. i sincerely wish you the best and do hope you keep me updated - please Smile

as for me... no better, no worse. i was supposed to see my doc last thursday morning after i finished my course of antibiotics. i hardly slept monday night with worry. i called the next morning and guess what - my doc was away on her easter hols - how dare she! Wink

so, i have to wait until at least tuesday to see her. i'm still hopeful.

you take good care of yourself.

hugz n xxx

kimlk · Regular Joined: 06 Feb 2007 Posts: 11

Summerlover,

I just wanted to let you know that I had the same staging as you with IIIB HL. I went through my treatment in 2005, and have been in remission for a year now. I ended up having 8 cycles, or 16 doses of ABVD chemotherapy. It wasn't the easiest thing to do, but I made it through, and I'm sure you will too. Best of Luck with your treatment & feel free to contact me if you want any more info.

Kim

summerlover55 · Regular Joined: 22 Mar 2007 Posts: 22

aww thanks so much guys!! it means alot!

and thanks for your advice... and about the hair.. i think im going to try and wig.. i hear they are very uncomfortable so we will see how long ill wear it for Wink

mizchief, you sound exactly like what i went through.. i had anti biotics for 1 week.. and then my doc went on vacation! i was so mad! don't you feel like you are waiting forever?! jeezz.. well thanks for the advice on your son.. what did he have if you don't mind me asking?

mizchief · Regular Joined: 18 Mar 2007 Posts: 14 Location: scotland

i'm glad you found my ramblings helpful Smile

my son had a rare bone marrow disease called aplastic anaemia. it's bone marrow failure. he was graded "very severe" as all blood counts fell to zero. he was diagnosed oct 2004 and had a bone marrow transplant nov 2004! so quick. it was a gruelling year or so and we are still regularly to the hospital for checkups. but, he's doing great Smile

i saw my doc yesterday and now have mixed feelings. i was disappointed that she didn't decide to bring my hospital appointment forward (due to see a consultant on april 27th). but i was pleased she didn't think it was sooo urgent. she also says the nodes on my neck are difficult to feel - i don't think they are. i have enlarged nodes everywhere, but an odd spot is inside the elbow. it's quite large, hard and numb. but my doc reackons there are no nodes there and says its a fat lump. i felt a bit of a fraud and felt like i was making this all up Sad

just a question to you summerlover or anyone else here.. when your lymph nodes are swollen, does the skin covering the area become numb?
sorry for briefly hijacking your thread Wink

how are you doing? do you know when your treatment is starting? i guess you will be in a children's hospital/ward? as for the wig - nice one - would you go smart of funky? my son chose bandanners and beany hats, but i do think it's easier for boys.

take care and pls keep in touch.

x x x

summerlover55 · Regular Joined: 22 Mar 2007 Posts: 22

hmm.. im suprised they havnt organized for you to go for a CT scan.. they should.. have you noticed any new lumps at all?

and about the question about the skin above going numb.. i didn't feel anything like that.. but it might be different for everyone..

so how old is your son?! if u dont' mind me asking.. hehe

well this weekw as kind of rough.. monday i had a bone marrow biopsy which i was awake for and it hurt sooo bad so i can;t even imagine what your son went through!!! it's still aching.. tuesday i got a PICC line inserted because the chemo im taking is really strong that it could burn or damage the veins in my arm so the picc line just goes into my arm all the way to my heart Smile

but i was awake for that too and it hurt a little.. and then wednesday i started my 1st treatment and was only sick once.. and i slept for over 24 hours!!!

as for the wig.. i think ill go funky!! hehe..

mizchief · Regular Joined: 18 Mar 2007 Posts: 14 Location: scotland

hey summerlover,

aww.. sounds like the tough times are starting - bless you. i'm surprised you had a BMB whilst awake, in my sons ward (all under eighteen) they had general for their BMB's and lumbar punctures. perhaps it's different over there Confused

he's had a few BMB's and also went under general anesthetic for his central line(s) too. he has counted and i'm sure it's around 18 times he's been to surgery for one or the other. he was 10 when diagnosed and is 13 this weekend! Very Happy

if that BMB was painful, you should ask them to sedate you a bit more. i'm sure they would. you have enough to go through and if pain can be avoided, they should help you with that.

i was interested to hear about your PICC line - i've heard of it, but only seen one kid with one. most of the kids we knew, including shane, had either a central line or port in the chest. the central line was cutely named "wiggly"

sorry to hear you were sick, but at least it was only once and.. you got a good sleep! sleep is probably the best thing right now and you should get plenty of it. i hope they are giving you anti-sickness medication. do you have to stay in hospital for long? do you have internet access there?

what i found really helpful was to keep a blog for shane. there were so many people asking after him, family and friends that i could not find the time to communicate with them all. a blog was the perfect solution. mind you, i did it for him, whereas you will obviously be feeling a bit too poorly to perhaps maintain one. it's not only a good diary, but very useful for logging dates of treatments Smile

as for me - i'm fed up with thinking about it all. yes, i have one new lump at the back of my knee and the others are all bigger and some of them numb. i read it could be an accumulation of fluid due to the enlarged nodes blocking the flow. and, that could be a reason for the numbness too. anyways, i'm not diagnosed with anything just yet, so i'm still in the "not knowing/very hopeful" stage Wink

you look after yourself and fight in your corner. whatever you think they can do for you at the hospital to make you more comfortable - ask for - don't be shy.

do keep in touch.

x x x

summerlover55 · Regular Joined: 22 Mar 2007 Posts: 22

hey!
ahh i know.. the not knowing part was just about the worst for me now that i look back on it!! you just can't stop thinking about it.. and eventhough you have googled every single website you can't stop looking for more info..
but i hope everything is well.. have you heard anything??!!
i am doing okay.. it's not as bad as i thought.. i think i got the worst overwith -the biopsies and the picc line- but now it has become so routined.. although i havnt lost any hair yet.. but im prepared for that.. i bought a wig but the thought of it makes me sick.. but besides that i only feel tired a few days after my chemo and a little sick here and there but im living my normal life..

but i am suprised it is taking so long for them to find out what you have! hang in there!

mizchief · Regular Joined: 18 Mar 2007 Posts: 14 Location: scotland

ellooo!

it's so sweet of you to take the time to reply and ask after me. i think you have enough on your plate with all that's going on. so pleased to hear you're doing well and are not feeling too bad at the moment - i obviously hope it stays that way for you. do you know how long your treatment will be ongoing for?

and no, no more news from me. still waiting until april 27th for my appointment at the hospital. i will definately pop back and let you know how it goes. my nodes are all much the same, but the the few on my neck are bigger. i had night sweats last week which then disappeared. someone suggested it might be TB! symptoms fit i guess, but i'm still waiting... Wink

you take care.

x x x

summerlover55 · Regular Joined: 22 Mar 2007 Posts: 22

ya?! well lets hope everything goes well.. you must be so impatient waiting and waiting! and let me know! Smile

mizchief · Regular Joined: 18 Mar 2007 Posts: 14 Location: scotland

hiya girl

i said i would drop back in and let you know how my hospital appointment went and i always keep my word. but first of all, how's the treatment going with you? i hope you're keeping on top of it and maintaining your fighting spirit!

saw the doc today and in a nutshell, he says he wasn't so concerned with my enlarged nodes on my neck because i have been having sore throats. ok, i didn't argue that one because he was clearly busy and only focusing on the *really* important things. no room for small talk Wink

he then did a full examination and sent me straight for a chest xray. said given the symptoms he must do that to exclude lymphoma. i didn't get the results today because it was 5pm by the time i finished. hopefully i will hear from the hospital soon.

he also wants a CT scan of my chest and abdomen so i have to wait for an appointment by letter for that. but more alarming for me - he thinks he can feel a hard mass in my left breast, so is referring me on.... to what i don't know. maybe a boob technician Smile

i'm just trying to remain optimistic. my step mum came with me and she was quite upset. i'm ok because it's still a waiting game and these are just to rule out any nasties.

fingers x'd.

x x x

summerlover55 · Regular Joined: 22 Mar 2007 Posts: 22

oh sounds like everything went well! that's good.. before ya know it you will know what's going on... ahh but about the mass in your breast Confused

hopefully that is nothing serious!!

the waiting game stinks Sad

hopefully it's nothing! i am praying for ya!

as for me.. my hair is now noticably balding Sad

i brushed out almost 3/4 of my hair today! it's sad but i just have to keep reminding myself that it is just hair!

you sound like you have a really good hea don your shoulders, and you sound prepared for whatever comes your way! GO YOU!

mizchief · Regular Joined: 18 Mar 2007 Posts: 14 Location: scotland

awwww... fanx for your support and compliments! of course i'm hoping everything turns out to be nothing but some kind of chronic infection. but, i'm too aware of what it could be also. no matter what it is, i'll deal with it Smile

sorry to hear about your hair. i know it has to be the worst thing and especially for girls. boys can even pass as kinda cool but girls can't quite get away with it in the same way. well, not in their minds at least. i have seen a few kids with no hair and they all looked so cute to me! i just wanna hug them!

and, the bald look quite suits some peeps. here's a pic (if the link works) of my son shane with no hair:

http://www.umadam.plus.com/DSCF0019.JPG

we actually had a bit of a giggle when asking the docs if he would lose his hair. they told him they would and that in their experience, it can grow back curly and even a different colour! shane's grew back massively curly - great tight curls. our hairdresser told us they were there to stay. but she was wrong. they did grow out after about 8 months and his hair went back to being completely straight again.

i know it sucks, but try to have a bit of fun with it if you can Smile

hugz n xxx

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