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Ganglioneuroblastoma
Having had a large mass removed from my adrenal gland, it turned out to be a cancer called ganglioneuroblastoma, a rare childhood cancer. Im 21!No one seems to know much about it and the doctors are keeping quiet until ive had further scans. I was wondering if anyone had come across this before or had any advice for me.…
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Research
Hi I'm not sure if this is allowed or not but I'd like to give it a go. I am a Wilms Tumour survivor currently in university. I'm beginning my dissertation, hoping to look at a topic regarding psychological health of childhood cancer survivors. I want to look at this to help future childhood cancer survivors and ensure…
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wilms tumor doctors
I am a mom of an 8 year old little girl that has wilm's tumor. My daughter was first diagnosed when she turned 5. She relapesed 2 times. First relapse on the liver second on multiple locations(bladder, kidney again and around the liver again). She recived different types of chemo, radation and surgery. She currently is…
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Ewings Sarcoma/effects after
I was diagnosed with Ewings Sarcoma at the age of 15. Went through a year of chemotherpay and a month of radiation. They told me that they didn't think I would be able to have children but I have two beautiful girls. At the age of 35 I was diagnosed with Cardiomyopathy and Diastolic Dysfunction and was on medication for…
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Coming to terms with it at 24, help please
Hey all, I have always religiously avoided these things, but I think that's part of the problem and why I'm here. I need to know if anything of this stuff sounds familiar because I realize it's starting to hamstring my life a bit. Background: Army officer, 24, from New York. Had ALL as a kid around 3, went into remission…
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My son has ALL
My son Thomas James (TJ) was diagnosed with early pre b-ALL on January 7th. He started chemo right away. He is doing better well except extremely hungry and moody from the steroids. I am so very scared. I keep thinking I'm going to lose him. He is only 2 1/2 years old, still in diapers, so young this should not be…
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survivor's guilt
Hi, I am a 22 year old long term survivor of childhood liver cancer. I'm wondering if there is anyone out there who feels guilty for making it when so many others don't. I've met so many people who have died from the disease, some even from my same diagnosis. I feel that it's not fair that I'm still here enjoying life when…
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Childhood Leukemia survivor Anyone ever have anxiety or depression as an adult
Hi my name is Ryan I had ALL at 4 years old. 22 year cancer survIvor. I am 29 now Has anyone dealt with anxiety or depression as an adult? Focusing issues? thank you
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Diffused Gliomatosis Cerebri
Hi I am the mother of a 9 year old you has been diagnosed with a diffused Gliomatosis Cerebri. The first symptoms she has was seizures which was in August 2014 after that in December 2015 she had a mri and CT Scan and then a biopsy which confirmed this. Since then she has had 6 weeks on Radiotherapy. She was to have…
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AT/RT Atypical Teratoid Rhabdoid Tumor
My 6 month-old nephew was just diagnosed with AT/RT, and given it's rarity, we are having trouble finding much information regarding it. I was wondering if anyone out there may be dealing with or has dealt with this type of cancer or knows where we might find more information regarding it. What we have gleaned so far is…
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myxopapillary ependymoma
Hi I am new to this site. My 10 year old son maxopapillary ependymoma has returned after he had a gross resection surgury in his L5 to s1 spinal cord when he was 7. The doctor said it has hemoraged thats probably when the pain started they operated and were hopeful they got it all. Now it has returned in the same spot in…
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No Subject
Hi, my name is Corrine. My son who is 5 years old, was diagnosed with Lymphoblastic Lymphoma (NHL), on Sept. 6, 2000. He is in his second Phase of chemotherapy. If anyone has anything to share, I would welcome your input. Thanks.
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Private Message Spam
Hello everyone, Thank you to all of you who have alerted us to the PM spamming from earlier today. I apologize for the inconvenience. While we do have securities in place, we are not always able to catch all spam, and we are trying to figure out how this one got around our system. If you received a message from jegac1…
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T-Cell Lymphoblastic Lymphoma Treatment
Hi all, I was diagnosed with Stage III pediatric T-Cell Lymphoblastic Lymphoma almost two years ago. I finish Maintenance in May. I went through induction, cosolidation, interim maintenance, delayed intensification, and now am in maintenance. Through induction, consolidation, and interim maintenance, I continued on the ALL…
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Not the type of survivor we're looking for?!
I recently had a startling email from a non profit event director. See I'm a painter andwas browsing Craigslist for art gigs to get my paintings out there. I stumble across what I thought was a perfect gig. They were looking for artists to do demonstrations and donate pieces for a local event to help raise money for…
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2 Broken bones and cysts
My 14 year old son is a Wilms Tumor survivor. Despite an obstruction a few year ago, he is relatively healthy. During a baseball game he broke his left hand. 3 weeks later he broke his right wrist during another game. 2 broken bones in 3 weeks. During the xray and CT scan, they also indicated that he had cysts. I know…
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Pregnancy After Cancer
Hello, My name is Kimberly and I am a 9 year survivor of Non-Hodgkin's Lymphoma. I am recently married (2 years) and am expecting my first child in December, 2001 at the age of 36. I am looking to meet others who have faced the issue of whether or not to have a child following cancer treatment. I would love to hear your…
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I am a childhood cancer survivor I had ALL if anyone has questions
I am a 32 year old that has been cancer free since 1997. I was diagnosed when I was 4 years old and went through experimental chemotherapy treatments and spent a lot of time in the hospital. I lost my hair 5 times because of my chemo treatments. I wanted to write this post to help anyone that may have questions or just…
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Long Term effects from chemo
Hi...I am a childhood cancer survivor (rhabdomyosarcoma). In 1973 it was very rare and I had almost nil chances of survival. I had aggressive chemo (vincristine,dactinomycin,cytoxan). I was 16 then and am 44 now. I have had a very hard and strange life since the cancer and am just finding out that I may have long term…
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Grade 3 anaplastic features - Pxa - 11 year old boy
My 11 year old son was diagnosed with a Pxa grade 3 with anaplastic features on Xmas eve He had surgery with full resection and were just about to start 6 weeks radio therapy, along side 8 month oral chemo I'm desperate to speak to anyone who knows about the above and what your experiences have been.. Please please contact…
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Alternative Treatments
First, get sugar out of the patients diet now!!! Cancer loves sugar, when the patient is better and you want to introduce sugar back into their diet, please become informed about the difference between processed and non processed food! Raw is best! Second, I am not here to debate treatment. I am here to help, to provide…
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Planned Outage on 10/9
There will be a planned CSN outage on 10/9/15 from 5am-8am EST while the site undergoes some maintenance. We apologize for the inconvenience. Rowan CSN Support Team
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chemo effects later in life
Hi, I found this site looking for support groups of childhood cancer surviviors. I am 19 and had stage 4 NHL when I was 2. Since I was 11 I have experinced many episodes of anxiety attacks and PTSD over the years. I also have difficulty in school particulary in math. I was just curious if anyone else has had these issues…
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Ewings Sarcoma
My brother is 22 years old diagosed in December with metastasis Ewings Sarcoma in his right pelvis (bone and soft tissue) and bilateral lungs. He has completed 6 rounds of VIDE and 1 round of VIA. After completing the VIDE in April his scans showed he had two remaining tumors in his lungs. They decided to remove his lower…
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Newbie with Questions about Life in Remission
Hello, My son had Ewing's Sarcoma and has been in remission for 4 years now. I have looked for support groups on having survived but have found that if your child survived, congrats live your life. However what if you still feel the cancer? What if it feels like the place you use to call home is now dead inside, infected…
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Anyone else on here a survivor of Retinoblastoma?
I was just wondering if there is anyone else on this site that has/had retinoblastoma. I am a 15 year survivor of Retinoblastoma and would love to talk. :)
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nasopharyngeal carcinoma of 11 y/o
My son is diagnosed as NPC late Jan. Now he is under chemo. Radiation will start next month. Just want to get connected to other survivors.
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Pilomyxoid Astrocytoma Grade 2
I am a mother of a 5 year old little girl recently diagnosed with a PMA brain tumor! She is currently undergoing chemo (carboplatin and vincristine) she has a VP shunt placed due to hydrocephaLuS! anyone else have this or have a child with this?
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2 year old sarcoma? pls urgent response
Dh and I have 4 kids. Our 3rd baby S.age turned 2 in January. I around the 20th I noticed a lump on her upper right shoulder. The next morning at 9am she was at the dr and then at 10 30 in getting and ultrasound. The ultrasound said a lump and was in the muscle (likely to be a lipoma). Then we got reffered to a specialist…
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Private Message Spam
Hello everyone, Thank you to those who've alerted us to the spamming from earlier today, and we sincerely apologize for the inconvenience. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this. If you received a message, please do not respond or…