Cancer Survivors Network - Neuroblastoma survivor with ?'s - Comments

HI my name is Erin I am 21

ErinNicole — Thu, 03 Nov 2011 01:57:55 -0400

HI my name is Erin I am 21 and a Neuroblastoma survivor I was diagnosed at the age of 9months with stage 4. My body is marred with the scars of a debalking, several line placements, an exploratory surgery to my left shin, and numerous small round marks to my lower back from bone marrow testing. I have been in remission for 18 years and had thought I had reached the point where Neuroblastoma couldnt hurt me any more. I am legally blind in my left eye from pressure to my optic nerve provided by a tumor, but that was my only lasting affect from my bout with cancer. However last year I fell very ill and my lack of an Adrenal gland was uncovered. During my debalking it had been removed, yet I was uninformed of this. My remaining adrenal gland does not function properly leaving me adrenaline insufficient. I now am on a daily medication that if skipped could send me into a "crisis" and potentially kill me. I am so frustrated with my physical and mental limitations. After i went into remission my parents were told i would be short, stupid, socially awkward, and much worse. Growing up i was a bit eccentric yet still thrived. I played the trumpet, basketball, served on student counsels, FFA leadership roles, showed live stock, attended youth group, was in honors classes and more. I have always had lost ofloved ones around. My family is very supporive and willing to tell me all about my illness. Yet I tried for so long to forget it. I am very high strung an prone to panic attacks. I have sensory memories from my bout with Cancer and things like florescent lights, white rooms,specific tone my mother has, trigger the sensations of that time. I feel almost as if I am haunted by the emotions of a toddler. I work closely with Children's Miracle Network in my area to raise funds for research to find cures and treatments for todays sick kidos. Yet, i have never met another Neuroblastoma survivor. I have so many questions and stories i would like to share. This evening I have wept for you in sadness and gratitude for your your plights adn survival. Please keep me in you prayers and include me in your conversations. I can see how this is an excellent opportunity for bonding and internal growth. I have often expressed my feelings as "broken" because i dont know how to ever get to a normal state of being. Normal people dont cling to a 20yr old Pooh Bear when the day has been so long and hard that the whole room melts away and its as if i am strapped to a board with a needle in my back and my mom is stoking my hair saying "just one more". Normal people dont forgo sad because its just easier to be mad. Normal people havent been told their whoel life they are put here for a reason, God allowed them to survive to accomplish something great and yet a 21 still haven't got a clue...I am inspired that so many of you have children because i so badly want to be a mother. Mine has been my everything all these years and i so desperately want to pass that love and legacy on to another life. ...Well enough of my sad story for one night. Thank you again for your honest life stories and i wish you all the best. hope to talk soon!

muscle scar tissue later

Carlas — Fri, 30 Sep 2011 12:18:07 -0400

I am 44 years old and had Neuroblastoma surgery (3 tumors) when I was 18 months old. I had radiation and some chemo. I also have a scar that stretches across my lower abdomen from hip to hip. At 27 years of age I was dianosed with arthirits in one of my hips and was told to deal with pain aslong as possible through self medicating up to 800 mg og ibuprofen as needed and years later would need hip replacement. Years have passed and I have since relocated to NC from OH. I have seen a new family doctor who appears interested in my history. He has told me he believes this pain is related to scar tissue pulling on the muscle due to my growth from infant to adult and stated it is not arthritis. He seems to recognize the pain I have as well as loss of range of motion. I have not been able to ride my horse for about 3 years and had some discomfort prior to that. Walking is also painfull at times. My doctor seems caring, but has only pointed out how lucky I am to be here today and that most people whom have had this serious surgery have to wear cholostomy bags today. He has not offered any suggestions (only to continue self meds) regarding the scared muscle and pain. I always have stiffness and the pain comes and goes though more now days and is extremely painfu. I am not looking to take heavy pain killers (prescibed). I am wondering if there is a treatment anyone knows for this? With my doctor's response, it seems as though I should live with this pain. I have never had children due to infetility and only had mentration from 15years of age to 27 years of age due to horomone medication doctors had me on. If anyone has any suggesstions let me know.

I had bilateral ( both hips) total replacement with anterior procedure done on 6/3/2011. The scars are on the tops of my hips. I feel so much better and the pain is gone. FYI the muscle scar tissue had nothing to do with my pain. I had bad arthritis in both hips. I kept after my doctor until he made the orthopedic refferal. I did not go with fist one which would have been done one hip at a time and I would still be in pain. I did the research and got a 2nd opionion and that doctor asked if I had thought about doing both the same time, because of the damamge I could have done to the one operated on having to use a bad hip to heal on. I would reccomend the rarely done anterior procedure ( most hospitals in US do not have the special expensive table required for this operation, though it is done regular in Europe)to anyone having arthritis in both hips. The neuroblastoma cancer is what caused the arthritis later in life in both of my hips. I will find out next week when I will be able to ride again. I was walking 2 miles 3-5 times a week in less than 2 months (end of July). I graduated from in home PT a week early and outpatient PT 2 weeks early. The recovery time is so fast it has been amazing and all my freinds say I look like a totally different person walking upright instead of swayback and limp is gone. I am so much happier being pain free.

Re: Thanks jillebob

Aquagirl18 — Thu, 08 Sep 2011 14:22:25 -0400

Thanks its always good to connect with other survivors,I'm on facebook and didn't know there was a group. I am on the N.C.C.S page though and Curesearch.

Questions about Neuroblastoma

Aquagirl18 — Thu, 08 Sep 2011 14:20:30 -0400

Hi reen, I am dealing with the same issue. I have very little information about my diagnosis. I do know that it was stage 4 and I was 13 months old when doctors told my parents the news. I had chemo and radiation and one of the drugs was experimental and it caused my heart to fail. I have been living with cardiomyopathy ever since. I had surgery to remove my kidney and adreanal glad. In also have many other late effects from my treatments. I was treated in what I call the "dark ages" in the late 70's 80's. (I am 32 now)The hospital I was treated at was able to give me some info on the drugs I was given but I have no file and there is no other information.

oops

jillebob — Thu, 01 Sep 2011 15:23:49 -0400

oops

More...

jillebob — Thu, 01 Sep 2011 15:21:35 -0400

Head on over to Facebook.. There is a group that are neuroblastoma survivors and other cancer issues in the groups page. Just search it.. you must be registered on Facebook...This is the site for neuroblastom survivor site...might keep you informed about the future...
https://www.facebook.com/home.php?tab=4#!/groups/2255398912/

More...

jillebob — Thu, 01 Sep 2011 15:21:29 -0400

daughter recently diagnosed

eanunez — Sat, 13 Aug 2011 02:21:12 -0400

my daughter is 21 months old and was recently diagnosed with stage 4 neuroblastoma. the tumor encased her left kidney so that had 2 b removed 2. she is about 2 start her 2nd round of chemo. i've read the list of possible side effects of all the drugs shes been given & i've spoken 2 the doctors but i would like 2 hear from survivors. when my daughter beats this i would like 2 prepare for any other obstacles she may come across. im particularly interested in the female perspective. Thank you

Glad I found this group too!!

Melntez — Sat, 04 Jun 2011 05:12:52 -0400

Hi all,

As a mother of a child diagnosed with Stage 4 Neuroblastoma in Sept 2006 (just before his 2nd birthday), I am so, so happy to read all your posts & discover how many of you there are!! Imagine how many there are out there who haven't found this site yet!!!

My son Tyler had an 8cm tumour removed from his abdomen & still lives with several lesions in his liver. He is almost 7. At diagnosis we were told he had 10-20% chance of survival. He had a couple of surgeries, high dose chemotherapy, stem cell transplant & radiation. In June 2007 we were told he had relapsed & were given perhaps a couple of months!! It's now been 4 years & it seems that diagnosis may have been wrong!!!

As a parent of a NB child there are ALWAYS so many fears & concerns, however, I will never keep his cancer a secret from him no matter how much I would like to try to forget about it. Life changed the moment he was diagnosed & was never, ever the same but he is so incredible & amazing (as you ALL are) & getting through this beast of a cancer is something to be PROUD of, don't ever be ashamed of that or any scars that you may have!!

I now wonder about the long term side effects that Tyler may face. I used to get upset thinking about the fact that he will most likely never be able to have children & am amazed that some of you have. I consoled myself by thinking that if he is still with us when he is old enough to have children then we will deal with it then & we'll just be so lucky to still have him!!

So far at school he is doing great & is enjoying sport & living a normal life. I'd say the thing we notice the most with him is that he can become very angry & very sensitive - very easily, but mostly he is a happy, normal boy.

I have a website that I kept during Tyler's journey that you may like to visit: www.4tylerjames.com

I will always be amazed at just how far Tyler has come especially as I know (& read of) many children daily losing their battle to neuroblastoma (& other childhood cancers) but I want to thank you all for giving me MORE HOPE that Tyler can oneday join this group himself as a LONG TERM SURVIVOR : )

We have scans coming up next week - the nerves are setting in . . . wish us luck xxxxx

Same here! It's almost like

Catiebugbee — Thu, 10 Mar 2011 12:01:22 -0500

Same here! It's almost like I have found family, the real family I belong to...

I wish CSN had sent this to

Catiebugbee — Thu, 10 Mar 2011 11:54:03 -0500

I wish CSN had sent this to my homepage! I ended up finding it when I went back through this forum topic... I'll send you an email now :)

donating blood

Carlas — Thu, 16 Dec 2010 14:34:38 -0500

This is surprising, because in High School I was told I could never donate blood due to my cancer history.

Living cancer free

Carlas — Thu, 16 Dec 2010 14:28:37 -0500

I can relate to you having beeen worried about the future of cancers, I was the same way as a teenager. I am now 44 years old and have had no reoccurance of any cancer. I was 18 months old when Ohio State University hospital did my neuroblastoma (3 tumors). I was followed every 6 months by Columbus Childre's Hospital until I became an adult. I would recommend focusing on the positives and be proud that you are a survior. Become involved in fun things to help with decreaing anxiety. I am 42 years cancer free and counting.

Kathryn824

moonkai — Sun, 28 Nov 2010 00:18:00 -0500

Hi Kathryn,
I too had neuroblastoma. Stage 4. I also had a scar that goes across my stomach ( one side to the other) I still feel funny about my scar, but i think its more about what other people will think if they saw it. Once i finished school i didnt worry as much. I have donated blood also, they accepted my without any questions. Its nice to know you can give back xox

Im so glad I found you guys!

moonkai — Sun, 28 Nov 2010 00:07:46 -0500

Catiebugbee, I think you are my twin hahaha. I just joined this page in hope I would find someone out there who has a similar story to myself. Thank god there is !!! I too had neuroblastoma, I was diagnosed with stage 4 at 6 weeks old in 1981. 13 years later I went into remission. The doctors told my parents that there was a very slim chance that i would make it to 6 months old. I live in Australia and for the life of me I can not find a person who has a similar story. I was told that I was going to be intellectually disabled, blind and infertile. I have proved them wrong on all 3 accounts. I fell pregnant accidently at the age of 18. I never really worried about the pill because they had said I couldnt have children. And since then I have had 2 more beautiful kids. Abeit Im a single mother, but wouldnt have it any other way. Im also a nurse and a photographer. So my eyesight cant be too bad haha.
My mother does not talk to me about what happened when i was sick, I think she finds it too hard to talk about, I have approached her a few times, but like you was told to move foward. How are you supposed to move forward when you have such a huge void in your childhood. I have always felt different to other children. I have scars that i was unable to explain to friends when i was little, so it was just easier to hide my body ( and I have done this to this day) I started puberty when i was 5 ( not period, just everything else)I thought that it was normal until I had a sleepover with friends one night.
I also have a high IQ, but I also have blonde moments where the simpliest things are hard to figure out ! maths is not my forte, so when everyone had posted that, it then made sense to me. I would love to chat with you sometime to we could swap more stories xox jade.ash@hotmail.com, please feel free to email me anytime xoxo

Neuroblastoma survivor with ?'s

reenicd — Wed, 21 Jun 2006 23:19:55 -0400

Hi, I am a 31 yr old female who had been diagnosed with Abdominal Neuroblastoma at the age of 5 months. I was treated in Boston, Ma in 1975-76.
My parents didnt speak much about it or inform me with any details of the treatments I recieved. Unfortunetly I have lost both my parents to different types of cancer and now I am old enough to ask questions, and I have many of them.
My first question is,
I have approx. 2 dozen scars on my back in the shape of circles probably the size of pennies. I am told that when I was younger they were very deep, and even today, several of them are still very sensitive. Is anyone familiar w/ the treatment that I might have recieved or what they were caused from?

Growing up as a child I can remember being embarrassed by them and my dad always telling me that they were victory scars and I should be proud to have them, which today, in my adult life, I am.

I am not even sure what stage my cancer was when diagnosed and which treatments I recieved. I was so relieved when I bought this computer and found this web site, now I have a chance to research exactly what Ive always wondered about.

I also have the scar around my waiste which I have seen and also read some info about. The scars on my back are nothing like Ive ever seen before on anyone else, and when I show doctors even they seem blown away, the best way to describe my back is that they are like a leopard print in pattern and shape.
I requested my files from boston when I carried my first of 2 children, and I recieved a minila folder with VERY little information, I am assuming its because of the # of years which have passed, is there any type of library in which I can utilize to research my case that anyone out there knows of?

I thank you in advance, like I said Im new to this, and Im very interested in finding as much knowladge of the possible treatments I may have recieved.

I tried to donate blood recently and I was denied because of the chemo I recieved, which kinda scared me and sparked my initial hunt.
Thank You Again.