DFSP

sen0760 said:

4th time dfsp
hello lacretia
I have been reading a lot about DFSP. Surgery no doupt is the first option. . But there is another pre operation option which is gleevec( IMATINIB).
I am looking for info on gleevec.lacretia is it possible to take the 800mg before sleep and which city the medication is take and do you need genetic tests to take it. Or the oncologist will go ahead with the biopsy report. Thank you.
The majority try to use it to shrink the tumor size to be manegeably resected later in operation. Gleevec dose for DFSP is higher than for other tumors. There are side effects and depending on the individuals health. Maybe I can qualify for it . Problem is finding an ongologist for me. A genetic test is needed to find the fusion of chromosome 17 with 22.%90 of DFSP show this tralocation t(17,22).I have a depression in my left upper jaw area 6cm by 5cm by 2cm deep dew to wide excission. That scar did not affect much my life only cosmeticly.But this new surgery will take the facial nerve out and other valuble muscles.
Till now I have not desided which way I will go for me. I will see my surgeon on the 15 july to schedule my operation . maybe I will take gleevec before it, I need to investigate.My tumor is in a critical parotid gland site, where the facial nerve passes and other muscles are located.
Best hopes for you to get the best treatment available.
My thoughts and prayers with you

lacretia said:

DFSP
My 15 year son is currently taking 800mg of Gleevec daily. He has had reoccurences and was put on Gleevac after the last reoccurence. He has now been on gleevec for over a year. Although he is not cured of the DFSP, the Gleevec has definetely been working. You can no longer see it with the naked eye. With the DFSP being so large it was, when the third set Doctors first saw him, they were considering removing more of his abdomine and a couple of ribs. Since taking the Gleevec with all the shrinkage, the don't have to remove so much now. There are some side effects, however he has only experienced nausea shortly after taking the Gleevec. All I did was switch the time he takes it to in the evening before going to bed and he not has experienced the nausea or any other side effects since. I call it the miracle drug and would definetly recommend it to someone else. Please be sure to drink plenty of water when taking this medication.

BrendansMom said:

My 9 year old son was diagnosed with dfsp on his foot in April.
My son had a nickle sized bump on the top of his foot for only about 2 months when we had it removed (took me that long to get him an appointment). They determined it was dfsp, and admitted him 3 days later to do a wide local resection. They removed the skin and tissue on the entire top of his foot, from the bottom of his ankle to the top of his toes, and all the way deep down to the muscle and tendons. He had a wound vac on for 5 days, and then they did a skin graft off this thigh. Surgeon was confident that he got it all.

We went yesterday for our first quarterly re-check with his Oncologist at Childrens Healthcare of Atlanta's AFLAC Cancer Center. Chest ct scan was clear, and his MRI looked good, Dr said. He had originally told us after the surgery, that all the margins looked clear, but then told us yesterday that he may have 'missed' a report that shows the depth margin was not totally clear. They went all the way down to his tendons, so they really had no other way to go any deeper. As it is, my poor kiddo now has a severly indented foot, where the very thin skin graft did not fill in all the tissue they removed from the top of his foot. Dr is suggesting we meet with the pediatric radiology Oncologist to discuss our options. Has anyone else done radiation with much success? My thought is, why do radiation before we even know for sure that has re-occured? I know all about the high reoccurance rates, but I feel like it's a double edged sword here. If we do radiation now, the dfsp may not come back, BUT he may develop another kind of sarcoma years from now. A more serious sarcoma possibly. If we don't do it, the dfsp may come back, and then we may have to do radiation then, or possibly another surgery. Oncologist seems to think they can't go any deeper though, and the next step would be amputation. We want to try EVERYTHING possible before we get to that point! I feel like we should just watch it, and continue scans and mri's every 4 months, and if it returns, THEN we can look at radiating.

We talked about the Gleevac pill, and Dr didnt seem too confident in it. He said some dfsp's will become resistant to it, and he would need to take the pill the rest of his life. He is only 9 years old, I could handle him taking a pill the rest of his life if it keeps this cancer away! Also, who knows what kind of advancements in medicine they will discover over the next 50, 60 years?

How is everyone else doing that has had surgery? We are 4 months out, and healing fairly well....Brendan was able to wear his first pair of Nikes when school started last month

Melissa

kristin29firefly said:

I was diagnosed with dfsp
I was diagnosed with dfsp this year in March. In late March, I had a wide excision in which the pathology report came back with clear margins. I have read a story about a man with similar cancer and wondering why my doctors have not required anymore testing or imaging. I have become a little worried that the doctors in my area don't know enough about this cancer- so I wanted to contact someone who's going through this too. Any suggestions?