My 2 yr old has ES/PNET.... I need to talk to others

My 2 yr old has ES/PNET. The surgeon took out a mass on his side that was encapsulated and self contained. The outer tissue was clean and all his tests came back clean too. He has no more evidence of this cancer anywhere in his body. The doctors told me that there is a 20-30% chance that he is cured and he doesn't have cancer anymore. However they are doing chemo on him anyway. He has to go through 14 treatments of aggressive chemo, and after only two treatments he has lost ALOT of weight and is very sick. Is this normal? Even with all their "medications" to help him he isn't bouncing back very well. I am scared that I might be putting him through this for nothing. Can someone give me a clue as to how this really plays out?

Hmmm..I am not up on this type of cancer but my gut feeling is as follows. As this was encapsulated it is a good sign. Please ask the doctor why so aggressive? Personally I would ask to give him a rest and when he is back to normal he can have some more treatment. I also would ask they cut the dose down. You know the saying The cure is worse than the complaint....Anyway just my 2 cents worth of opinion but as a retired oncology nurse and a cancer survivor I think the docs become too aggessive and do not take into consideration the patient and how they react.  go to www.medifocus.com and see if they have a book on ES and that may help you. All the best..MMS

On 7/21/2009 renshe wrote:

My 2 yr old has ES/PNET. The surgeon took out a mass on his side that was encapsulated and self contained. The outer tissue was clean and all his tests came back clean too. He has no more evidence of this cancer anywhere in his body. The doctors told me that there is a 20-30% chance that he is cured and he doesn't have cancer anymore. However they are doing chemo on him anyway. He has to go through 14 treatments of aggressive chemo, and after only two treatments he has lost ALOT of weight and is very sick. Is this normal? Even with all their "medications" to help him he isn't bouncing back very well. I am scared that I might be putting him through this for nothing. Can someone give me a clue as to how this really plays out?

 

Hello Renshe, I can very well understand your problem , i have just completed the entire 12 dose of treatment in Feb 2009 and i was diagnosed on 1st April08 almost (No kidding April fool this time). Anyway, don't pay any attention to survival rate they are just statistics. if pathological report says 99 to 100 % negative margin or necrosis then believe me its sign of best. if it is 90 to 98 % then its good. About his weakness after second chemo, that is not at all surprising for me. he will have hell lot of problem and hell lot of complains, i know how i passed each night crying in the bed and sometimes even praying for god please take me with you without giving me pain for so long time . but moral is you have to fight, its so easy to stop the treatment and die but real hero/caregiver is one who finishes entire 14 session of chemo.that's a real fight. i tell you my story after 6th chemo i understood everything about drugs and side-effects . so whenever i have complains i never tell it to doctor, because what he will do is give you one more medicine for your complain, for which there is no space in my body. so stop complaining about sideeffects after 5-6 chemos till that time you observe his body reactions. Finally, my answer to your entire question summary is : fight it like you re in a war ,with entire 14 chemo and win it.

Our daughter is a Ewings survivor (we are still in the 5 year slide). She also lost about 30% of her body weight and we had a really hard time. You can read about her at www.caringbridge.org/visit/mirandabeamer.

 As for the necessity of the treatment, I can't answer that. There is evidence that stopping treatment after removal of the tumor is almost as effective as completing the full regimen, but that is after 6 rounds (or 3 cycles of 5 days and 3 days). There is no evidence that not having chemo at all is effective.

 Ewings is very aggressive. If they truly got all of the cancer, you might get away with not treating. But, if they missed just a few cells, it could metastasize in the lungs and then the survival chance goes from close to 80% to less than 20%.

 I wish there were easy answers. If there is one ray of hope, the survival rate for small children with Ewings is very high. For soft tissue tumors, it is 100%. BUT, there were only four in the seven years of study of the new regimen, which is not conclusive scientifically. But, it is something to hold onto during the long nights watching your child get sicker and sicker.

 If it gets really bad, consider a G tube or GJ tube. It was a lifesaver for us. If you want to converse privately, it is gbworld (at) comcast.net.

Peace and Grace,
Greg

Hi my son died of Ewings PNET after a 5 year battle ...in remission3 times ..as long as the DR's say your son's body can take the battering from the intense regime ...I would say 'in my opionion' as a mother who's been there  done that ...have it done ...leave nothing to chance with this diesease cos it so aggressive ...my son had his original tumour removed from his ribs ..2 full ribs 2 part ..bits of his diaphram and part of his lung ..still it came back ...surgery again  more chemo high doze chemo with stem cell replacement still it came back ...good news for your son appears to have been touching anthing else ...but personally I would still say give him the the regime ...I don't mean to frighten you but no point pretending or telling you untruths ...there is a better survival rate in younger kids ...or so they told me ...my son was 16 I hope your son becomes a survivor x