Bence, 9years old, from Phillipines

[bernard]

Dear All,

Thank you for your comments and suggestions.

Due to our financial incapability, we take my son only in the public hospital which i am afraid the prognosis test will be prolonged. There are more patient, and if you have request for mri or other lab test you need to wait for a month to have that labtest.

Additional to that, all the doctors who checked and heard this type of cancer dont know about this disease or zero knowledge on it.

To asps community i am asking to help me looking for hospital which i can send my son for proper diagnosis.

Thanks a lot.

Bernard

[D.ap]

Hello Bernard
Just wanted to say that the months wait for the MRI is ok and would be worth the wait

Get yourself in line for the MRI
In the meantime ask your hem onc to look further into the pathology report and make sure the diagnosis is of alveolar soft part sarcoma
There have been reports back in 1993 of ASPS in the hand
Here's the link for your oncologist
http://www.sciencedirect.com/science/ar ... 239390394I

I know of a patient in Canada , female that had been diagnosed with ASPS. Hers was in her hand .

I know that this is all new and so scary, however take your time and use the scans, MRI and CT to help find the tumors at their smallest size
ASPS generally grows slowly but needs to be watched constantly
Love
Debbie

Ps as Olga said earlier. Make sure the tumor was removed with positive margines. Clear of the sarcoma
The pathology report should tell you and your doctor

Also the link she gave you needs to be reviewed by your hem oncologist

http://sarcomahelp.org/asps.html

[Bonni Hess]

Hello again Bernard,
Debbie has made some very good suggestions and provided some excellent links for you and the oncologist to access and read. Because ASPS is so extremely rare, it is unfortunately much too common for many doctors to have very limited to none knowledge about the disease. At this point, it is critically important and the highest priority that an accurate diagnosis of Bence's disease be made, and, if ASPS or some other type of Sarcoma is confirmed, that Bence be treated by a Sarcoma specialist. I understand that you are unfortunately limited in your access to appropriate oncology care by your financial situation and your location, but it is important for you to request/insist that the doctors provide you with some referrals to doctors and a facility that can provide the appropriate diagnosis, treatment, and care for Bence, and that if it is available, you seek help from a medical social worker who may be able to assist you in coordinating obtaining the appropriate medical care for Bence. I am not personally familiar with the medical resources in the Philippines, but the oncologist should be able to at least provide information for you about where the best place would be for you to go to receive the best medical care for Bence. You will need to be personally very pro-active in researching and contacting possible other medical facilities to request help for Bence. Please keep us updated on the results of your next Thursday's appointment with the oncologist.
With more special caring thoughts, healing wishes, and continued Hope,
Bonni

[bernard]

https://www.cancer.gov/types/soft-tissu ... ection/all

[D.ap]

Morning Bernard

It's good to see NCI has updated their sarcoma information
Thanks for the share.

If you notice with some of the information within the write up , with your son having a smaller than 5cm size tumor, the picture looks a lot brighter for the patient as the tumor when it's just this size has less opportunity to send cells into the blood system . That is the primary way
ASPS is spread.

I was impressed how far the idea of treating ASPS has come in the suggested way to treat ASPS
The NCI article says--
"Alveolar soft part sarcoma

Treatment of alveolar soft part sarcoma may include the following:

Surgery to completely remove the tumor when possible.
Radiation therapy before or after surgery, if the tumor cannot be completely removed by surgery.
Targeted therapy (angiogenesis inhibitor).
A clinical trial of targeted therapy (angiogenesis inhibitor) for children.
A clinical trial of targeted therapy, radiation therapy, and surgery with or without chemotherapy."

You all have performed the first hurtle and that is surgery.
I hope you are able to get answers with your doctors appointment

[bernard]

Dear All,

Last friday nov. 25, 2016 , is the check up of my son to his hema onc. She told me that she reffered the case of my son to her consultant at the US (which i forgot to ask what is the name of the consultant) she told me that the consultant told her that my son will be going for radiation.

Today, nov. 28, 2016, we went to rad onc. Before they wil schedule my son for radiation we need to go to the ortho doctor who conducted the operation of my son, because the slide review of my son's operation is positive margins. The doctor in rad onc need to know if they conduct re excission on my son's hand and if not, they will immediatly do the radiation theraphy.

As of now we did not yet done with the brain mri. Hopefully next month, because i am searching for foundation who could help on the lab test.

Thank you and God Bless Us All.

Bernard

[Bonni Hess]

Dear Bernard, Thank you for your thoughtful update. Have you pursued contact with Saint Jude Children's Hospital in the USA to find out if Bence would be eligible to receive medical care at their facility? I don't know what their policy is for international patients, but they advertise that no child is turned away due to the family's inability to pay. It would certainly be worthwhile for you to at least contact Saint Jude to request help, or information about where you might be able to receive some assistance with Bence's medical care and treatment. Take care and keep the Board updated as you are able. With special caring thoughts, healing wishes, and continued Hope, Bonni

[bernard]

Dear ASPS Friends,

Updates to my son's case.

My son's hand have been amputated last February 14, 2017. The 3rd, 4th and 5th digit fingers including his palmar bones were removed.

Last December 15, 2016 he underwent for hand and wrist MRI w/ contrast and found out that the mass was re occurred. They also worried about the lytic lession on his both femoral neck.

After several check ups, the residents and consultants decided to amputated his hand. My son admitted February 2, 2017.

As of now, we are still here at Philippine General Hospital for his theraphy and we are looking for possible donor who could give us financial for his artificial fingers.

Good news, the biopsy of the removed fingers was negative. They also took sample on his femoral neck to check the lytic lession and found out negative in the biopsy.

And also, I requested whole body bone scan, chest and abdomen plain and with contrast. The result of all these scan were negative.

Thank you and God Bless.

[D.ap]

Benard

I hope today finds Bence feeling better and healing .
I'm am still confused about the "lytic" term you have used .

They also worried about the lytic lession on his both femoral neck.

Could you clarify that please ?

[bernard]

Dear All,
Good mornng!

Lytic lession, this is the scars on his femoral neck that the abdomen ct scan was seen. The doctors suspected this as mets but when they took samples to it, pathology report was negative.

I have also question to the members of this forum.
All of the updated pathology report and laboratory tests of my son were negative results, but the Radiation Onco (consultant doctor) recommend my son to undergo for radiation for more than 2months.
But, before the amputation the Tumor Doctor (consultant also) told me that he dont want my son to undergo for radiation because he is too young. He also told me that if all the laboratory test will be negative then he will not doing RT.
What will I do? Who will i follow? Can you give me an advice to the situation of my son.

God Bless us all.

Thank you.

Bernard

[Olga]

I would not be doing RT, especially after such a big amputation with the good margins that were negative for tumor. It is not needed.

[ntran727]

I agree with Olga to opt out of RT. I had to make that decision myself after they removed my primary tumor. After speaking with 2 different radiation oncologists, they essentially told me that I would have to make the decision on my own and weigh the risks vs. benefits of doing RT. The chances of local recurrence is very low (they quoted about 10-15% chance at best) if you have negative margins but the RT can cause many adverse reactions especially for your son who is still very young and is still growing. It is great news that the lytic lesions did not turn out to be malignant.

[Bonni Hess]

Dear Bernard, It was good to hear from you but I am so very saddened and sorry about the amputation of dear Bence"s hand. He is so young to have been through so much pain, suffering, and physical and emotional trauma, and is truly a courageous 9 year old who I know you must be extremely proud of. I am very grateful that the surgeon was able to get good margins and that all of the post up pathology reports are negative for tumor cells. I agree with Olga and ntran that radiation is not necessary and not advisable at this time. I am grateful too that dear Bence's chest/abdominal/pelvic CT scans and his full body bone scan were clear. If he hasn't already had a brain MRI this should be done to rule out any brain mets and also to establish a baseline for future reference and comparison. In the meantime, I Hope rhat Bence is recovering well physically and emotionally from his amputation, and adjusting to the loss of his hand. Take care Bernard, stay strong, and keep in touch as you are able.With special caring thoughts, healing wishes, and continued Hope, Bonni

[bernard]

Dear All,

Thank you all for the advice and suggestions you told us guys.

My son now is going to school and his first day to go to school since last year. I hope that he could face what ever challenges will be happened there.

Next month that will be august, he have a follow up check up to his oncologist for laboratory. The oncologist and tumor consultant did not recommended him for RT.

I will tell also his doctor for the brain MRI, because here only in the forum that you guys advice my son to undergo for such laboratory.

Thank you and more power.

Sincerely yours,

Bernard Banarez

[Ivan]

Hi Bernard. Any updates on your son's treatment?