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Treatment Decisions--Radiation


#1

Hi--I'm new to this forum, so not sure if this is the best way to post this question. In any case, thank you for the words of support I've received!

I'm interested in getting some input on researching a treatment decision for my son, Ian. We are contemplating full lung radiation, which is a treatment option that is not generally considered the standard of care for someone his age (he's 4-1/2) or something that's been proven effective in studies (mostly due to the general lack of significant data). It is, however, being recommended because of the fact that he showed some possible signs of spread to his lungs in his early scans (which have since disappeared) and because he had a very large tumor (>5 cm) that responded only fairly well to chemo (Doxorubicin/ifosfamide)

We're getting inputs from multiple sources, including his primary oncology/radiation oncology team at Sloan Kettering, our local hospital, St. Judes and are going to meet with Dana Farber in January.

I suppose there are two more specific questions:

  • Any guidance on the best way to get second opinions from institutions without going through a formal transfer of care? It's not practical for us to send his slides to several institutions or visit several in the near term, nor is it clear it would be of benefit?
  • Any experience with full lung radiation treatment or consideration of treatment?

Thanks to all for your thoughts.

Brian


#2

Whole lung irradiation sounds to me like a scary treatment. There are multiple possible long term side effects associated with this treatment:

http://pediatrics.aappublications.org/cgi/content/full/119/3/554

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=33436

http://www.ncbi.nlm.nih.gov/pubmed/15926160

I had radiation to the lung but it was IMRT (higher dose ) and it was targeted at the tumor. And I wasn't a child. It did cause some damage to my lung that developed with time but so far I do not feel it has an impact on my every day life.

I've been to a number of sarcoma conferences and I am under the impression that pediatric sarcoma specialists tend to agree more with each other than do adult sarcoma specialists. You'll tell me if that's true... It sounds like you have already contacted the centers that are considered the best. One more place to look at would be MD Anderson in Texas. I do not think you need to do a transfer of care to get a second opinion but you do need to bring the slides and reports to the appointment. Here is an article about the usefulness of second opinions:

http://sarcomahelp.org/sarcoma_second_opinions.html

#3

Brian

So happy Elodie was able to give you some sights! Just wanted to check in and see how your son is doing. When my daughter was going through it I did alot of research online and got other opinions. I will keep all of you in my thoughts and prayers.


#4

Brian,

My heart goes out to you and your son. I am not sure if I am responding with information that you already have, but I had the same issue. By the time your get all of the required information for the appoi ntment you are already onto the next treatment option. The only way I was able to cut through the red tape is to ask my oncologist to speak to the others that I had researched. Dan Farber and Sloan Kettering were much easier to work with than MD Anderson. NIH was terrific... the doctor answered the emails and called and discussed everything with me. They are very good at NIH. Good Luck... you and your son will be in my prayers.


#5

Nikolas

I hope you are doing well. I apologize that I hadn't responded earlier--I wasn't active on this site for some time.


Would you mind sharing information about how you got a contact at NIH? I haven't been in touch with them in the past.

Brian

Nikolas Ritschel said:

Brian,

My heart goes out to you and your son. I am not sure if I am responding with information that you already have, but I had the same issue. By the time your get all of the required information for the appoi ntment you are already onto the next treatment option. The only way I was able to cut through the red tape is to ask my oncologist to speak to the others that I had researched. Dan Farber and Sloan Kettering were much easier to work with than MD Anderson. NIH was terrific... the doctor answered the emails and called and discussed everything with me. They are very good at NIH. Good Luck... you and your son will be in my prayers.


#6

There are a couple studies as NIH. The Rosenburg one is very good but only 25% of the people have the right qualifiers to partcipate. You have to have certain thing in your blood (they will send you a test kit). Call or email Dr. Melinda Merchant at NIH. 301-■■■■■■■■ (merchanm@mail.nih.gov). If you don't qualify for Rosenburg and you are in a desparate situation like me, go see Dr. Jeffery Morgan at Dana Farber. I am on a regiment of Sutent and Rapomizine and it is keeping the cancer at bay. There are a couple of us on this site that are. The Rosenburg is a "home run, but few qualify. At NIH, I had the Immunology and it did not work for me.

Let me know if you want to discuss in person. -- 815-■■■■■■■■


#7

Nikolas


Thank you so much for your response and for the information. I will get in touch with Dr. Merchant.

I hope all is well with you. My son and I visited Dana Farber and I was tremendously impressed with the people I met there, including Dr. Janeway (who is in Pediatrics).



Brian


#8

Hi,

My son had Synovial in his knee. He had 35 rounds of radiation,chemo and various surgerys. After 5 years the cancer returned in his lungs. Unfortunately he went to heaven in March. We were planning on going to Lyon, France. They have a Frizzle gene trial that is the only one known to kill the synovial tumors in mice.

it is expected to begin in this September. This is the radio-immunotherapy which brings radioactive substance specifically to
desease site. As strong efficacy is expected, no Chemo is attached to this therapy.
I hope this therapy will be able to cure the patients fighting with synovial sarcoma.

Contact Dr. at ■■■■■■■■■■■■■■■■■■■■■■■■■■■■. God Bless!

Also if you want an organic treatment that works on many cancers. Contact Gerson Clinic in San Diego CA.



Brian McGrath (father of Ian) said:

Nikolas


Thank you so much for your response and for the information. I will get in touch with Dr. Merchant.

I hope all is well with you. My son and I visited Dana Farber and I was tremendously impressed with the people I met there, including Dr. Janeway (who is in Pediatrics).



Brian