Anders - Yes I trust the forum so much. Undoubtedly the best site I can found about ASPS. Some doctors here treating me just like another cancer patient where resection is the least preferred option.
Olga - I've emailed the article link you mentioned to my doctor. Forget to mention, I am planning on taking Sutent. Going to my oncologist in Bandung (my city) for prescription. What do you think?
Rheza Christian from Indonesia - Dx 2010 - RIP 13/09/2011
Re: Rheza updates
I think it is a good plan and you should proceed with the Sutent, do all the paper work, get the drug but just do not start it until the meeting at the central hospital. When you are on Sutent, the surgery is usually not recommended because supposedly Sutent interferes with the healing process - as it blocks something that participates in the tumors blood vessels growth and the same is needed when cut vessels in the wound are healing after the surgery. So I would wait to hear what they say re. hand situation and if they have anything to offer, but once the meeting is over and if there are no other options, just go ahead with it. There is a topic on this board re. our experience with the drug, read it:
http://www.cureasps.org/forum/viewforum.php?f=52
When you start the drug and feel something strange, you can send a private message to any of these people if you click on their screen name if you need to ask re. side effects.
http://www.cureasps.org/forum/viewforum.php?f=52
When you start the drug and feel something strange, you can send a private message to any of these people if you click on their screen name if you need to ask re. side effects.
Olga
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Fictional
Re: Rheza updates
Hi Rheza,
Copy the papers and bring them with you to your appointment - or if your doctor is willing to accept emails from you, send the papers in the advance of your appointment - so you don't have more delays and the doctor can read the papers before she / he meets with you. Sutent is a reasonable option given your situation. Usually tumor resection will only be considered if disseminated disease has stabilized. The primary tumor can be a source of new metastases - that is why people want the primary removed.
If your disease stabilizes on Sutent you will have more time to research other possibilities.
Copy the papers and bring them with you to your appointment - or if your doctor is willing to accept emails from you, send the papers in the advance of your appointment - so you don't have more delays and the doctor can read the papers before she / he meets with you. Sutent is a reasonable option given your situation. Usually tumor resection will only be considered if disseminated disease has stabilized. The primary tumor can be a source of new metastases - that is why people want the primary removed.
If your disease stabilizes on Sutent you will have more time to research other possibilities.
Re: Rheza updates
Olga and 'F' - Will do your advice. 
About taking Sutent, can you give me guideline for it's dosage? So I can discuss it with my doctor. I'm 165 cm in Height and 45 in weight (Yes I'm very small and thin. Had lost 8 Kg since April)
some pics to further explain my condition
-after my 1st tumor resection on my scalp-
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 5018_n.jpg
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 0215_n.jpg
-after my 2nd tumor resection on my scalp-
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 0242_n.jpg
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 5279_n.jpg
About taking Sutent, can you give me guideline for it's dosage? So I can discuss it with my doctor. I'm 165 cm in Height and 45 in weight (Yes I'm very small and thin. Had lost 8 Kg since April)
some pics to further explain my condition
-after my 1st tumor resection on my scalp-
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 5018_n.jpg
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 0215_n.jpg
-after my 2nd tumor resection on my scalp-
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 0242_n.jpg
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 5279_n.jpg
Re: Rheza updates
Holy crap - must feel awesome to have those babies gone! Why did you wait so long?Rheza wrote:Olga and 'F' - Will do your advice.
About taking Sutent, can you give me guideline for it's dosage? So I can discuss it with my doctor. I'm 165 cm in Height and 45 in weight (Yes I'm very small and thin. Had lost 8 Kg since April)
some pics to further explain my condition
-after my 1st tumor resection on my scalp-
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 5018_n.jpg
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 0215_n.jpg
-after my 2nd tumor resection on my scalp-
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 0242_n.jpg
http://sphotos.ak.fbcdn.net/hphotos-ak- ... 5279_n.jpg
Don't forget, you also need to seek out other treatment option in addition to sutent. Ablation, embolization, etc. Sutent alone is not enough.
Re: Rheza updates
Indeed it feels great!Ivan wrote: Holy crap - must feel awesome to have those babies gone!
Because it was diagnosed as lipoma and considered harmless. That time I decided to have my calf embolized first rather than scalp lump resection as my calf was in pain.Ivan wrote:Why did you wait so long?
Yes, I will surely take your advice. Going to bring this matter to the doctors.Ivan wrote: Don't forget, you also need to seek out other treatment option in addition to sutent. Ablation, embolization, etc. Sutent alone is not enough.
Re: Rheza updates
According to this article just being presented on the 2010 ASCO Annual Meeting from June 4 – 8 2010 in Chicago
Sunitinib malate (SM) in alveolar soft part sarcoma (ASPS).
http://abstract.asco.org/AbstView_74_52727.html
the dose is 37.5 mg/day
may be LCMA could comment on the dose she is currently on (or you can send her the e-mail).
Sunitinib malate (SM) in alveolar soft part sarcoma (ASPS).
http://abstract.asco.org/AbstView_74_52727.html
the dose is 37.5 mg/day
may be LCMA could comment on the dose she is currently on (or you can send her the e-mail).
Olga
Re: Rheza updates
Hi all...
Yesterday I went back to Dharmais and the doctor said that the treatment they were goin to give is chemo. When I asked what chemo they were going to use, they said it would be coctail (mixture of 3 chemo). I told the doctor that I'm going to think about it first. The doctor also said that my calf is not an ASPS tumor. She said it's a different case. So my calf is not the main tumor. If my calf is not an ASPS, then I think my main would be the one on my scalp (the one that has been resected)
Today I went back to my city and went to my local oncologist. I gave her links about Sutent and she agreed to prescribe me sutent. I'm taking Sutent starting on this evening. The doctor gave me dosage of 12.5 mg on the 1st week, 25 mg on the second week, and 37,5 mg for the remaining weeks.
So I'm turning down chemo and start taking Sutent. Did I made the right choice?
Yesterday I went back to Dharmais and the doctor said that the treatment they were goin to give is chemo. When I asked what chemo they were going to use, they said it would be coctail (mixture of 3 chemo). I told the doctor that I'm going to think about it first. The doctor also said that my calf is not an ASPS tumor. She said it's a different case. So my calf is not the main tumor. If my calf is not an ASPS, then I think my main would be the one on my scalp (the one that has been resected)
Today I went back to my city and went to my local oncologist. I gave her links about Sutent and she agreed to prescribe me sutent. I'm taking Sutent starting on this evening. The doctor gave me dosage of 12.5 mg on the 1st week, 25 mg on the second week, and 37,5 mg for the remaining weeks.
So I'm turning down chemo and start taking Sutent. Did I made the right choice?
Re: Rheza updates
1) Why did the doctors say they think the calf is not ASPS? What did they say it was?Rheza wrote:Hi all...
Yesterday I went back to Dharmais and the doctor said that the treatment they were goin to give is chemo. When I asked what chemo they were going to use, they said it would be coctail (mixture of 3 chemo). I told the doctor that I'm going to think about it first. The doctor also said that my calf is not an ASPS tumor. She said it's a different case. So my calf is not the main tumor. If my calf is not an ASPS, then I think my main would be the one on my scalp (the one that has been resected)
Today I went back to my city and went to my local oncologist. I gave her links about Sutent and she agreed to prescribe me sutent. I'm taking Sutent starting on this evening. The doctor gave me dosage of 12.5 mg on the 1st week, 25 mg on the second week, and 37,5 mg for the remaining weeks.
So I'm turning down chemo and start taking Sutent. Did I made the right choice?
2) I am still kind of suspicious about your condition. I think you should ask for a biopsy on your calf and your shoulder tumors. You need to be 100% sure what is ASPS and what's not.
3) _IF_ you have ASPS then certainly in your cast most people would go for Sutent rather than chemo. I think chemo may only be effective for very small ASPS tumors (and even then probably not).
Re: Rheza updates
Rheza - that oncologist from Dharmais - did he offer any justification for the proposed chemotherapy combo? Do you remember what it was (AIM - ?)?
What do you think about the speed of the growth of your tumors? I am asking because even though ASPS is very chemo resistant, if it is very fast growing there is some chance that chemo can have some effect on it.
What do you think about the speed of the growth of your tumors? I am asking because even though ASPS is very chemo resistant, if it is very fast growing there is some chance that chemo can have some effect on it.
Olga
Re: Rheza updates
HI Rheza,
My name is Dotty and my daughter, Jordanne, was diagnosed with ASPS last September and is now at NIH for the clinical trial. She had a large tumor in her thigh which was resected after embolization. The embolization process did cause nerve damage in her sciatic nerve which makes her now question why she had that done. However, the veins were so large in her thigh that she might have had more trouble without it. Her surgeon in Washington DC, Dr. Martin Malawer, said that the surgery would have taken double the length of time, probably 9 hours, without having done the embolization first. It is certainly a tough decision about surgeries and you can question yourself all the time especially with complications. But, from everything that I have read resection of the primary tumor is the best option.
As for ASPS tumors not destroying bone: Jordanne's cancer was discovered by a dentist because it was in her jaw and had gone through her lower mandable. It was very hard to diagnose because that tumor did not act like normal ASPS. When we gave them the information about a the swelling and pain she was having in her thigh, they were able to put the pieces together and diagnose ASPS. So, this can in some cases destroy bone. She had to have part of her lower jaw removed and a titanium plate put ing.
Please be persistant with your doctors even though they are unfamiliar with this rare disease. You may be the person that needs to educate them so that they can help others in the future.
I am grateful to hear that you may be able to come to the US and will continue to pray for your health and the opening of doors for you to be able to enter a Cedirinab trial somewhere. It is showing great promise. The Dr. in charge of the trial at NIH, Dr. Kumar, is from India I believe. Either way, it would be good if at least your doctors were able to contact some of the doctors in the US or elsewhere that are more familiar with the treatment of this disease instead of just guessing and making recommendations for your treatment without knowing that this disease is not your typical cancer. This forum is such a great place for patients to share information and many of those who post here have really done their homework after living with this disease for a number of years. I think it is valuable to share the stories of other patients with our doctors so that they have more pieces of the puzzle.
My best wishes go to you and your family as you make these tough decisions about treatment options.
Welcome to the forum!
Dotty
My name is Dotty and my daughter, Jordanne, was diagnosed with ASPS last September and is now at NIH for the clinical trial. She had a large tumor in her thigh which was resected after embolization. The embolization process did cause nerve damage in her sciatic nerve which makes her now question why she had that done. However, the veins were so large in her thigh that she might have had more trouble without it. Her surgeon in Washington DC, Dr. Martin Malawer, said that the surgery would have taken double the length of time, probably 9 hours, without having done the embolization first. It is certainly a tough decision about surgeries and you can question yourself all the time especially with complications. But, from everything that I have read resection of the primary tumor is the best option.
As for ASPS tumors not destroying bone: Jordanne's cancer was discovered by a dentist because it was in her jaw and had gone through her lower mandable. It was very hard to diagnose because that tumor did not act like normal ASPS. When we gave them the information about a the swelling and pain she was having in her thigh, they were able to put the pieces together and diagnose ASPS. So, this can in some cases destroy bone. She had to have part of her lower jaw removed and a titanium plate put ing.
Please be persistant with your doctors even though they are unfamiliar with this rare disease. You may be the person that needs to educate them so that they can help others in the future.
I am grateful to hear that you may be able to come to the US and will continue to pray for your health and the opening of doors for you to be able to enter a Cedirinab trial somewhere. It is showing great promise. The Dr. in charge of the trial at NIH, Dr. Kumar, is from India I believe. Either way, it would be good if at least your doctors were able to contact some of the doctors in the US or elsewhere that are more familiar with the treatment of this disease instead of just guessing and making recommendations for your treatment without knowing that this disease is not your typical cancer. This forum is such a great place for patients to share information and many of those who post here have really done their homework after living with this disease for a number of years. I think it is valuable to share the stories of other patients with our doctors so that they have more pieces of the puzzle.
My best wishes go to you and your family as you make these tough decisions about treatment options.
Welcome to the forum!
Dotty
Re: Rheza updates
Are you taking Sutent already? How is it going?
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Fictional
Re: Rheza updates
Rheza,
Our daughter was on Sutent at 37.5 mg 3 weeks on 2 weeks off (I think) - it was almost 3 years ago...she was on for about 6 months.
I think Lindsey was on something like this - where she has a break. Some people take 25 mg every day without a break. Our daughter was only briefly on this (before her surgery) - but she liked it better because she was less tired. In another cancer, it looked as if either way of dosing was fine. Some people think that taking breaks is a bad idea because it gives the blood vessels a chance to grow back.
Our daughter was on Sutent at 37.5 mg 3 weeks on 2 weeks off (I think) - it was almost 3 years ago...she was on for about 6 months.
I think Lindsey was on something like this - where she has a break. Some people take 25 mg every day without a break. Our daughter was only briefly on this (before her surgery) - but she liked it better because she was less tired. In another cancer, it looked as if either way of dosing was fine. Some people think that taking breaks is a bad idea because it gives the blood vessels a chance to grow back.
Re: Rheza updates
Sorry for replying very2 late.. I was unable to be on computer as on 13th of June I had quite an incident. It was so cold. I was trying to rotate my arm to give it a warm up. Suddenly I heard 3 loud cracks and at that moment I screamed so loud and cry as it was so so painful. I barely walk after that accident because even the tiniest movement on my shoulder bring so much pain. Last monday I felt better and went to my doctor and had my right arm rontgent. The scan shows that my bone is fractured. Still confused on my next move.
About Sutent. I took Sutent on 10th of June taking 12.5 mg for the 1st week, 25 mg on the 2nd week, and going to take 37.5 mg starting from tomorrow.
The obvious effect I felt is, I used to hear a loud murmuring sound on my left shoulder (by sticking my ear to my shoulder). Now its gone.
Sorry for my bad english as I'm on Blackberry and correcting grammar is kinda hard on this tiny screen
About Sutent. I took Sutent on 10th of June taking 12.5 mg for the 1st week, 25 mg on the 2nd week, and going to take 37.5 mg starting from tomorrow.
The obvious effect I felt is, I used to hear a loud murmuring sound on my left shoulder (by sticking my ear to my shoulder). Now its gone.
Sorry for my bad english as I'm on Blackberry and correcting grammar is kinda hard on this tiny screen
Re: Rheza updates
It sucks to hear these news, but I am happy that at least you are tolerating Sutent well. Which shoulder was the murmur in - the one with the fractured humerus, or the other one?Rheza wrote:Sorry for replying very2 late.. I was unable to be on computer as on 13th of June I had quite an incident. It was so cold. I was trying to rotate my arm to give it a warm up. Suddenly I heard 3 loud cracks and at that moment I screamed so loud and cry as it was so so painful. I barely walk after that accident because even the tiniest movement on my shoulder bring so much pain. Last monday I felt better and went to my doctor and had my right arm rontgent. The scan shows that my bone is fractured. Still confused on my next move.
About Sutent. I took Sutent on 10th of June taking 12.5 mg for the 1st week, 25 mg on the 2nd week, and going to take 37.5 mg starting from tomorrow.
The obvious effect I felt is, I used to hear a loud murmuring sound on my left shoulder (by sticking my ear to my shoulder). Now its gone.
Sorry for my bad english as I'm on Blackberry and correcting grammar is kinda hard on this tiny screen
So it's a soft tissue tumor which fractured the bone, not a bone tumor which outgrew it, right?