7 month old baby with yolk sac tumor

[anxious mom]

My son was diagnosed last january with yolk sac tumor, his AFP is 11,300. His right testis was removed via orchiectomy, ten days after his AFP went down to 1800. No metastasis were found during the CT but his AFP marker is still not normal. we were told that he has stage II TC.

His pediatric oncologist recommended 6 cycles of chemo (carboplatin, etoposide and bleomycin). His AFP after first chemo is 4.32, then 2.11 after the second. He just finished his 3rd chemo (Day 1 to 3).

I want to know what is the protocol for infants with testicular cancer? I've read that for adults it is 3x BEP (day 1 to 5). Please help me find details regarding chemo protocol for infants. (my son is in the philippines, Im in the Middle East to earn and be able to support his treatment). Our oncologist does not explain the treatment very well and when asked, why 6 cycles, he said "because that's the protocol".

Please help us! I've sent several e-mail to hospitals/doctors but no reply or they were saying that they do not treat pediatric cases. Where shall I turn to? I feel that 6 cycles is too much for my baby.

[dadmo]

anxious mom:
I would strongly recommed that you contact one of the experts on the attached list. http://tcrc.acor.org/experts.html. I don't know that there is a standard treatment for someone that young. My first suggestion is to contact either Dr. Lawrence Einhorn at Indiana University or Dr. Robert Motzer at Sloan Kettering. The numbers are on the list. Keep us posted please.

[JimmyDean]

This makes me sad, I would go to an expert. Like at Indiana or Sloan.

[Scott]

I'm so sorry.

An AFP level that high should have taken two to three months to get back down to normal. When did he start chemotherapy, and what was his AFP level then?

[Scott]

Doug Bank from the TCRC says:

Pediatrics is a different beast, so be careful...

A good resource is this page and others reachable from it:

http://www.cancer.gov/cancertopics/pdq/treatment/extracranial-germ-cell/HealthProfessional/page8

(and http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract)

Looking around the site, I did see that 6 cycles of this particular protocol (JEB) was sometimes used for high grade tumors. Frankly, I am not so sure that this is truly a stage II cancer, but chemo has already been started... Sigh. Assuming that it really was metastatic disease, I think 4 cycles would be better than 6, but he truly should get a second opinion from a different pediatric oncologist. There is no single standard of treatment here.

[Don]

I can only reinforce the suggestions that everyone has already given to you ... Your son and family will be in our prayers... I can only suggest to contact St . Judes Children hospital for a second opinion or further treatment options.. Please keep us posted!!!!! Take Care and Stay Strong!!!!!

[anxious mom]

Thank you for your advice. I have tried contacting Dr, Einhorn through e-mail lat February but got no reply from him.

Scott, my son had orchiectomy last January 23, 2006, then February 2, 2006 his AFP was down to 1800. His chemo was started February 27 (the doctor did not order for an AFP right before the chemo start), his basis was the result on February 2. Second AFP was taken March 20, just before he starts his second chemo and the result is down to 4.32. And last April 17, his AFP was taken again before the start of the third chemo cycle and it was 2.11.

I really would like to get a second opinion, (I want to give the best treatment possible for my son, but unfortunately going to IU or Sloan or even St. Jude is not an option because of the visa requirement and cost of going there not to mention the treatment itself.-We are barely coping with the cost of treatment at the moment, no insurance covers this cases in the Philippines and no cancer organization or group offers financial support either, unless you are an indigent and willing to wait for several months for chemo medicine to be available). So if you have a list of recommended doctors we can consult in the Philippines, please let me know.

Again, thank you so much for all the advice and prayers; I'll keep you posted on my son's progress.

[nzsteve]

Hi,

You could try phoning IU for advice - international number should be 00 1 317 278 4822

I did this (I'm in New Zealand, so have no US medical insurance) and they put me onto Dr Einhorns nurse. After that they had me email my medical history, and I had a reply back within 24hrs. Im sure they would be happy to advise you - at the least they might be able to provide contact details for a pediatric specialist who could be better placed to help.

Good Luck,

Steve

[Scott]

Scott, my son had orchiectomy last January 23, 2006, then February 2, 2006 his AFP was down to 1800. His chemo was started February 27 (the doctor did not order for an AFP right before the chemo start), his basis was the result on February 2. Second AFP was taken March 20, just before he starts his second chemo and the result is down to 4.32. And last April 17, his AFP was taken again before the start of the third chemo cycle and it was 2.11.

I'd rather not have to say so, but unless there were other signs of metastasis than elevated AFP, chemotherapy may have been premature.

[Scott]

I hadn't known until today that reference values for AFP are normally higher in infants, as noted in this abstract.

Alpha 1-fetoprotein (AFP) reference values in infants up to 2 years of age.
The aim of this study was to establish reference values and factors associated with serum AFP elevation in infants. Five hundred twenty-four samples collected from infants up to the age of 2 years at the University Hospital Dusseldorf (Germany) were analyzed. At birth mean serum AFP levels were 41,687 ng/ml in 256 term babies and 158,125 ng/ml in 90 premature babies born before the 37th gestational week, excluding samples from children with factors known to be associated with AFP elevation. In the first 4 weeks of life, AFP levels decreased by 50% in 5.1 days in term babies. Between day 180 and 720 of life, AFP levels up to 87 ng/ml were within the 95.5% interval (assumed logarithmic normal distribution) with a mean of 8 ng/ml without a further decline. By the age of 2 years the infants of this study had not reached adult serum AFP levels (0-6 ng/ml).

[anxious mom]

Oh my,the chemo was indeed premature. I'm asking all his lab results and clinical abstract be sent to me from Philipines, so I can call Dr. Einhorn (as suggested by Steve), we certainly need a second (expert) opinion.

I've raised that issue with his oncologist, saying that other urologist (we have asked several doctors before deciding to do the surgery) are not expecting that for a baby of my son's age, AFP is not expected to be the same as the adult normal range, but he said that it should be between 1 to 7 immediately after the orchiectomy. (guess that shows that he is not very familiar with TC).

i really felt bad about this, considering that it could have been avoided or postponed till a recurrence. everytime he underwent chemo, i cannot stop crying anywhere i am anytime of the day (since Im far away from him and could only imagine what he is going through).Thinking that i should be by his side comforting him-but cirmustances will not allow me to.

I have a very courageous baby, he does not cry, he only gets cranky when he cannot sleep, he even tries to entertain nurses who checks on him, he is oblivious of all the things going on around him. Doctors who have seen him before are saying that this child is very brave, whenever they are examining him (ultrasound, blood test)he just look at the face of the doctors, as if saying be careful of what you're doing, because Im looking at you.

SCott thank you for researching about my son's case. When even doctors have turned down my requests for info, you guys have gone out of your way to help us. That goes for all the guys in this forum who have taken the time to post a reply.

Thank you so much...i'll keep you updated on my son's progress.

Keep up the good work, you been a great help!

[dadmo]

anxious mom:
Try not to beat yourself up for things you have no control over. You're doing a great job as a mom. All you can do now is move forward and try to help your son get more appropriate care. Stay strong.

[Karen]

anxious mom,
I can't add to the excellent advise the guys here have given you, but I can add my prayers for strength and healing.

[Scott]

There was a post about a similar situation, about year and a half ago:

http://www.tc-cancer.com/forum/showthread.php?t=900

[anxious mom]

hi Guys!

Just got a word from IU, unfortunately the cases that they handle is for those aged 15-35. I was referred to Riley Children's hospital though.

Will keep you posted on my son's progress.