AT/RT Atypical Teratoid Rhabdoid Tumor

ATRT
Hello Marnie
I just read your post. I am so sorry to hear about your nephew. My son Mitchell was diagnosed with ATRT in March of 2006 at 6 months. His cancer was in his Kidney as well as his brain. The doctors at Sick Kids in Toronto did operate initially to find out what was going on. Once we were given the diagnoses it was recommended that there was no treatment for him. Chemo in previous cases was proven ineffective at this young an age. Sadly we lost our little prince just two weeks later on March 19th 2006. I have since been in touch with another family in Toronto who lost a daughter at 3 to the same horrible disease.
I am not sure where your nephew is currently living but there is a Dr. Jackie Beagle at CHOP in Philly who has done a lot of research on ATRT.
I am so sorry this is the news that I am bringing you.
I will tell you on a more positive note that we have two older healthy daughters and we were able to go on and have another healthy child in 2007. We will never forget our beautiful baby boy though!!!

team abbott said:

ATRT
I just read your post about your little one. My wife, 15 month old son and I are also in the same process, a little more advance than yourself but on the same journey. We were diagnosed on 5/15/2008 and had brain surgery to remove the tumor. Because of the rarity of it there are very little experts on the tumor. But there is hope. I would recommend looking up a Children's Medical Center nearest you. Children's of Dallas, TX did the surgery on our son and were amazing on providing us with information on the Tumor itself.

We live in a smaller town 7 hrs away from there and are currently recieving treatment and are diligent about finding ways not to go back in and discontinue the treatments. We have came across a person in Mexico that was actually referred by a personal friend that treats cancer totally different than anywhere else. I will keep you posted on what we find out from them. Abbott is currently on a 51 week protocal that developed by Stanford Medical. I believe it is called INR1. I am here to help if you need anything feel free to contact me. GOD BLESS

Hello, I am just wondering
Hello, I am just wondering how your journey with your son is going? I will keep u and your family in my prayers. I just recently lost my son to this awful disease. He was actually dignosed a day before your son at that very hospital. They are very wonderful. We did everything we could, but there was nothing more that we can do. There was this new med. offered to us, but they only gave us 2% chance of survival rate and 6-9 months of life and from those 9 months, he was going to have 6 months worth of treatment. We didn't think it was worth putting our son through anymore missery....We put him in the Lords hands and He took care of my little angel.....I will be praying for u and your son.

aidensmom said:

Information on AT/RT
If you visit www.cbtrf.org Children's Brain Tumor Research Foundation, they specialize in helping children with AT/RT and there is even a forum where you can connect to other parents of children diagnosed with AT/RT. my son's site is www.aidenstory.com

My daughter diagnosed with AT/RT yesterday
My daughter 5 yrs old was found to have a brain tumor in the CT scan. She was operated with complete removal of the tumor in the first week of April 2011. The surgery was OK and she is fine now. The histopath report initially showed Glioblastoma GBM IV but later the report was revised as AT/RT. The doctors are reviewing the reports and would shortly call us for the suitable treatment. We have come to know from various resources that AT/RT is a rare type of tumor. We have asked all to pray for her so that she gets well, healthy and leads a normal life... Request your inputs and knowledge sharing about this... Tnks Abraham

sunsetstones17 said:

Hello, my 1 yr old daughter
Hello, my 1 yr old daughter has been diagnosed recently with AT/RT. She has also been operated on & most of the tumor has been removed. The oncologist wants our little girl to have chemo & radiotherapy which only gives her 30% survival!! We have declined the chemo & radiotherapy as we don't want to see her going through such an aggressive treatment. From research we have done, children over 3yrs have a higher success in treatment with chemo. We are researching alternative treatment at the moment for our little girl, a more natural way, our research is still ongoing as we speak but we are hoping for a result very soon. My Love & positive thoughts goes out to your daughter & your family, i know exactly what your going through but staying positive gets us through each day & children are so strong & brave, they will fight anything put in their way.Our daughter is at home with us now & she is getting stronger every day, she is a twin so we know her being with her brother is making her stronger & so so happy. Wishing you all strength, courage, hope & love through this difficult time.... Orla

Need advice
Thanks. Our oncologists have also advised to have radiation for 7 weeks along with chemo. My daughter is happy now but gets frightened even thinking of going to the hospital due to all the trauma she underwent during the surgery. ATRT is a rare tumor and the survival /prognosis is also poor. The chemo medicines combo is also very toxic. Many kids die of the toxicity of chemo itself. The radiation will have its own side effects. I dont know whether she would ever come out of hospital after she starts on radiation and chemo. Now we are able to see her smile but while in hospital she is crying whole day. Its a tough call to take. Is it worth to put her into all this pain without any real chance of survival? We are visiting all near ones, holy places/ churches to pray for her life... Rgds Abraham

bmueller3 said:

AT/RT MOM
Ok so my son is 8 months old and diagnosed with AT/RT. I am not sure where everyone else has been treated and which protocol that you have been advised. But our oncologist have painted a different picture for us. I also have been in contact with long term survivors of AT/RT and they are amazing and happy children. They all have gone through chemo, radiation and more chemo. It is not easy and we are finding that out as we beging the first phase of the ACN0333 protocol but it is worth it. The recent studies over the last 5 years have given this protocol a 50-60% progonosis for this terrible cancer and the response to death during intense chemo was 1 child in the early stage of the research of this protocol so the length between chemo rounds was changed. To see the children that are long term survivors any chance of survical is hope to get caught up in the numbers is not what hope is about. Is it hard everyday of course but the pain of death is as great is the pain to survive. I hope the best to all of your families and make sure you seek the best care especially with the COG hospitals. We are at children's of wisconsin and may seek proton beam radiation elsewhere but have a good experience with my son care and continued optimism from the other survivors and the wonderful things they can accomplish here.

3.5 years old boy with possibly AT/RT
Hello , my name is Vaida, and I’m from Romania. My boy age 3 and a half years old , was diagnosed with a large head tumor two weeks ago. Most of it is in the maxilo-facial level, but a part of it is located in the brain. We are now in Germany, were the surgeons managed to get a small part of it out. (a small part from the tumor located in the brain was removed, being the part that may cause immediate damage to the brain). The preliminary pathology report says it’s an AR/RT tumor.
We are now researching possible ways of treatment but we found out that the conventional treatment is chemo&radio therapy and surgical intervention. Due to the fact that the tumor has extended to some major arteries a surgery is highly risky. Also the tumor is very large (3.5X5x3 cm).
I’ve found this site and I see that the majority of the peoples in it are form US.
We have found about a clinic in Houston Texas, belonging to dr. Stanislaw Burzynski that may have some results in fighting this type of cancer.
I would like to kindly ask if you have any information about this treatment , or is it just a fraud. The treatment is expensive and going in America to this clinic would mean for us to sell everything we and our parents have in order to cover the first months of treatment. But there is nothing we wouldn’t do for our angel .
If anybody has information about this clinic, or can help me with additional information I would be very grateful.
Please understand that our situation is desperate and we try to hang on to every thing that can gives us hope.
Thank you very much.

sunsetstones17 said:

Hello, my 1 yr old daughter
Hello, my 1 yr old daughter has been diagnosed recently with AT/RT. She has also been operated on & most of the tumor has been removed. The oncologist wants our little girl to have chemo & radiotherapy which only gives her 30% survival!! We have declined the chemo & radiotherapy as we don't want to see her going through such an aggressive treatment. From research we have done, children over 3yrs have a higher success in treatment with chemo. We are researching alternative treatment at the moment for our little girl, a more natural way, our research is still ongoing as we speak but we are hoping for a result very soon. My Love & positive thoughts goes out to your daughter & your family, i know exactly what your going through but staying positive gets us through each day & children are so strong & brave, they will fight anything put in their way.Our daughter is at home with us now & she is getting stronger every day, she is a twin so we know her being with her brother is making her stronger & so so happy. Wishing you all strength, courage, hope & love through this difficult time.... Orla

ATRT

Hi

My 11 old months baby had been diagnosed with this type of tumour. She had surgery and most of it is out. 

Now they want to start chemotherapy.  You can understand what I am going through , no words can describe how I feel.

She is my only child and the thought of loosing her kills me. 

How are you doing ?

Did you find out any alternative , more natural ways of dealing with it ?

Your support and help is going to a God's send. 

All my love and best wishes. 

Claudia

bmueller3 said:

AT/RT MOM
Ok so my son is 8 months old and diagnosed with AT/RT. I am not sure where everyone else has been treated and which protocol that you have been advised. But our oncologist have painted a different picture for us. I also have been in contact with long term survivors of AT/RT and they are amazing and happy children. They all have gone through chemo, radiation and more chemo. It is not easy and we are finding that out as we beging the first phase of the ACN0333 protocol but it is worth it. The recent studies over the last 5 years have given this protocol a 50-60% progonosis for this terrible cancer and the response to death during intense chemo was 1 child in the early stage of the research of this protocol so the length between chemo rounds was changed. To see the children that are long term survivors any chance of survical is hope to get caught up in the numbers is not what hope is about. Is it hard everyday of course but the pain of death is as great is the pain to survive. I hope the best to all of your families and make sure you seek the best care especially with the COG hospitals. We are at children's of wisconsin and may seek proton beam radiation elsewhere but have a good experience with my son care and continued optimism from the other survivors and the wonderful things they can accomplish here.

Hello AT/RT Mom

Hi,, I am an AT/RT gramma. We live in Oregon. I hope and pray your son is still with you,, & doing good,, as I see this was posted back in 2011. I would like to hear more on all that you are experiencing & if you are going with any natural treatments as well,,, or ANY suggestions you may recommend! My 2 year old grandson was diagnosed in Jan. His tumor was located at the bottom of his brain stem & wrapped around it,, the size of a small tangerine. we were told it was completely removed,, and nothing was found elsewhere in his body. He is now doing Chemo,, and in March will go radiation. It has been Hell already, to say the least. We are doing his treatments in Portland, Oregon at the Doernbecher's Children Hospital. Going with the Boston Protocol. I would like to hear more from you!  Thank you,, TGunn

SunithaRao said:

AT / RT soft tissue rhabdoid tumour around Siatic nerve

I'm from India, my nephew 1.5 years has been diagnosed with AT / RT rabdoid tumour around Siatic nerve in July 2016 after few chemos the latest pet scan shows the tumour has reduced in size but an active growth is seen towards pelvis Over the Siatic nerve sheeth. Doctors are negative about the surgery and not giving hope or choice .

we were wondering if doctors were lacking in expertise to attemp surgery here in India this being the rarest disease . 

Can anyone suggest or channelise us to an expert surgeon / specialised hospital anywhere in / outside India.

the child already has a foot drop . Will compromising the entire left leg save the child's life ?

Please help us ... Appreciate any little information.

 

Hi

There's a closed support group on facebook called ATRT (Brain & Spine) Cancer Support Group and there are long term suvivor children there, their mothers can tell you the treatments and when and where. there are 10 and 15 years off treatment. there are more options than there were last year. now you have so much more : alisterib, EZh2 clinical trial, immunotherapy for brain tumours, clinical trial of Cannabis and chemotherapy together, there are the Dana Farber protocols for ATRT, St Judes childrens hospital's clinical trials for ATRT too. dont lose hope, love always wins. remember also your child is not a statistic, every childs cancer is different and they respond differently.