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Looking for Others Radiated in Infancy
As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and…
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Sadness of cancer
Here is what i dont get, why is it that everyone is so worried about breast cancer when actual cancer is just as bad. I mean think of all these little kids and babies that don't live but a couple of weeks if that, but no one seems to make something for them to show that you care. Here is something else to think about,…
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Anyone else having this problem?
On 8/7/09 my daughter, Courtney was dx with Pre-B ALL at age 13. As of 1/2010, she became weak and lost her ability to walk,she received vincristine that was stopped and continued with 6mp and MTX, she has been wheelchair bound since then. During her treatment we found out that she could not tolerate the full dose of her…
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Research treatment - did anyone else have this?
Did anyone else have research treatment? What was the protocol? Any known side effects? For me it was a combintion of chemo, I can't think of the drug names off hand. Plus a combination of radination to my head. Though test showed I had no cancer there. They had to follow the protocol. This was back in the early 80's. I…
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Lump in 3 yr thigh lumphnode
My 3 year old son has had a weekend ammune system for as long as I can remember, he's struggled with sever anemia and low red blood cell count. He recently has developed a large lump in the lymphnode in his thigh, along with worsening of other symptoms he's struggled with such as extreme tiredness, facial flushing,…
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neuroblastoma long term effect
hi Iam Kim a 35 year old female My story begins in a early stage of 2 years old, I had a very thick tummy but the childnurses where my mom went to said that i eat to much. but finally and lucky for me there was one day a doctor who's recognized my tummy. from 1 to another in a few hours the world turned upsidedown for my…
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Anyone in there 20s that has survived bone/child cancer
I am a nine year survivior and am dealing with survivors guilt. I am going through alot of mental stuff and was just wondering if there was anyone who has survived this form of cancer that is a young adult. If someone would respond to this I would greatly apperciate it.
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Retinoblastoma Survivors
I'm looking to chat with survivors of Retinoblastoma. I'm having a recurrent problem and want to hear if others are too. Please email me directly at marcienelson@hotmail.com for more info. Thanks
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I would like to talk to other parents of children with Rhabdo Myo Sarcoma (Emryonal)
Hi, I am new here to this site. Is there anyone out there who is in a similar situation re you child has Rhabdo? My son is in week 13 of an intensive protocol. I would like to hear from anyone who knows about this topic!Our protocol runs for 54 weeks and we are doing well so far. We are in Australia. I think I just need to…
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Philidelphia Chromosome Positive Childhood ALL
My 7 year old son Julien, was diagnosed with Philidephia Chromosome Positive Acute Lymphoblastic Leukemia (Ph+ALL) 9 months ago. We were recently told that he is not able to move on to the maintenance stage of treatment as his initial risk level and response to treatment thus far do not support a decrease in theintensity…
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AML sub 2-Born Marrow transplant
Hi: My daughter was diagnosted with AML M-2 on Oct 12,2012, she went through induction I and II, righ now she is in intensification I. She got remission after induction I. Also she is enrolled into a clinical trial with drug Bortezomib beside ADE 10+3+5. She and her sister HLA are 6 pair match, right now we need to make a…
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anaplastic astrocytoma grade 3
Hi, I was hoping to find a parent of a child diagnosed with AA grade 3 to talk to. My daughter was diagnosed in March 2010 and has had 2 brain surgeries since then to remove the tumor. She is 12 years old and a loving, helpful, beautiful girl. I have been devestated over this diagnosis and I would like someone who has been…
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anaplastic astrocytoma grade 3 (15yr+ survivor)
Looking for other long term aa3 survivors to discuss possible long term side effects.
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Juvenile Pilocytic Astrocytoma (JPA)
I'm looking for other survivors of this cancer. I'm interested to talk about symptoms etc, and the after effects.
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ganglioneurblastoma
Anybody out there have any expirence with this in adults? I have learned it is found in children. I am old enough to be rasing my own children so I really need to hear from someone over the age of 20. Any info will be helpful.
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My 5 Year Old Daughter & her Grade III Bilateral Thalamic Tumour...............help?
Hi My 5 year old daughter was diagnosed in June this year with a Grade III Glioma Bilateral Thalamic Tumour - it is deemed inoperable due to its location and the prognosis is life expectancy of 1-2 years with treatment. She completed her course of radiotherapy and initial course of chemotherapy in September and first…
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2 year old dx Anaplastic astrocytoma stage 3
Hello, This September my son, Caden, was diagnosed with a diffuse fibrilary astrocytoma. After switching oncologists/hospitals the tumor has been upgraded to a stage 3. Waiting on a third pathology report from Duke University. We just had our first treatment of carbon/Vinc yesterday. On zofran for nausea, so far he's doing…
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Rhabdomyasarcoma
I had a stage 4 Rhabdomyasarcoma when I was 4 and now I'm 30 however I've suffered terrible problems. I'm wondering if there are any more survivors of this cancer as I've not found one yet!
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Hair Loss Years After Chemo
Hello - I am 27 years old, and a 25 year cancer survivor. The type of cancer I had was hemangeopericytoma(sp?) I had a year of chemo and radiation and have been considered cancer free since the age of 5. Ever since shortly after my hair coming back in following chemo, my hair seems to fall out at an alarming rate. Growing…
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Nasopharynx Cancer
My sister who is 16 years was diagnized with nasopharyngeal cancer last year on April. You can easily see the growth on both sides her neck. we were advised to go through both chemotherapy and radiotherapy which we didn't do. Can you advise
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help for my baby with a rhabdoid tumor on her kidney
My daughter was diagnosed with a rhabdoid tumor on her kidney that has spread to her lungs when she was 5 months old . The kidney tumor was too large to remove so we have been trying to shrink it with chemo so we can remove it. we r getting a mixed reaction with the chemo. it has worked in the kidneys but not her lungs.…
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Chronic and Severe Anemia in 2 year old
My little nephew has been anemic almost since birth. His doctor has put him on iron, which raises it to barely normal, and taken him off cow's milk. His mother is very careful with his diet. They own a farm and grow organic veggies and beef, etc. As soon as the iron supplements stop, his iron drops to a dangerous level.…
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my son's been off treamtent 2 yrs and now look
OMG I've been so stressed out for the last few weeks. My son at age 4 1.2 was diagnosed with ALL he's been in remission now since aug of 07 but now all the long term effects of his chemo are coming into play. he;s majorly borderline diabetic. and just in the last 2 weeks he was diagnosed with seizures they are unsure if…
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Article links Treatment for Children's Cancers like Wilm's Tumor to Breast Cancer Later
I just recently found this on Wall Street Journal about Wilm's Tumor survivors. http://online.wsj.com/article/SB10001424052702303506404577444773557318752.html#articleTabs=article Chest Radiation for Girls Is Linked to Breast Cancer Later By RON WINSLOW CHICAGO—Women who were exposed to chest radiation to treat cancer…
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This was written by a young girl with cancer.....
This poem was written by a terminally ill young girl in a New York Hospital. It was sent by a medical doctor - Make sure to read what is in the closing statement AFTER THE POEM. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ SLOW DANCE ! !…
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"Osteogenic Sarcoma"--a Childhood Cancer?
I am a 32 year survivor of what my doctors all called "osteogenic sarcoma." Everyone else just called it bone cancer. I was treated in Sloan Kettering at Memorial Hospital in New York, but my surgery, recovery, and subsequent chemotherapy all occurred in the child's floor. For some reason that I can't remember, the doctors…
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OT - video
I am a member of a different board I just thought some people may not have seen this and might enjoy it! http://www.youtube.com/watch?v=ihGCj5mfCk8
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telling it to someone important to you
Hello, I am a patient who has been diagnosed and treated in 2006 and again for a relapse in 2008-2009,,, actually, the problem was more with this disease in the family of paraneoplastic syndrome,,, but I ended up in a wheelchair in 2009… and am still using a wheelchair. It isn’t that I am completely paralyzed, but I just…
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Advice/words/knowledge for my 2 year old !
I’m not sure if this is the right place to find some advice but I hope it is, I’m from the UK & I am finding it very difficult to find anyone who is or has been in my position as Lymphoma in children is rare. My two year old son has had enlarged lymph nodes for about nine months, it was first noticed with two in his neck…
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Anaplastic T cell Lymphoma - any kids out there with this?
Our 9 yr old son, Evan was diagnosed with Anaplastic T cell Large Lymphoma (Non-Hodgkins Lymphoma) in Oct 2011 and still on chemo. International studies conclude there's no optimal treatment so the U.S. uses a leukemia-type protocol. Other countries use a B-cell lymphoma protocol....it's all guess work. We read that…