Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi There!
My first post. My brother (46 yrs) was diagnosed with ASPS in Jan 2012. The primary tumor, right upper arm as well as mets in both lungs, were removed in Jan and Feb 2012. He had his first chemo over a period of 96 hours during last week.
Unfortunately we do not know of any laser treatment for the mets done in South Africa.
The oncologist used the MAID (Mesna, Doxorubicin, Dacarbazine and Ifosfamide) treatment. Anyone familiar with the treatment?
Regards.
Marietjie.

Dear Marietjie,
I am so sorry for your brother's recent ASPS diagnosis, but am grateful that you found your way to this Web site and that you have reached out for information. You will find that this Forum is an invaluable source of shared researched and anecdotal treatment information as well as strengthening support and encouragement from others in the ASPS Community who are fighting this extremely rare disease.
Regarding the MAID chemo regimen which your brother is currently receiving, based on my extensive research and personal observations of the past ten and a half years since our daughter was diagnosed with ASPS, MAID has unfortunately not proven to be very successful in treating ASPS because ASPS is so resistant to traditional chemo. However, having said that, every patient may respond differently to different treatments so perhaps/Hopefully your brother will have a much more successful response to the MAID than most have had. I think that it is important that your brother request documented data from his doctors regarding the potential effectiveness of MAID for ASPS, so that he can make the most informed decision about continuing with this relatively harsh and toxic treatment which, based on other ASPS patients' experience and results with MAID treatment, statistically and heartbreakingly appears to offer only a small chance of successfully stabilizing the progression of his disease and shrinking his tumors. It is critically important to be extremely pro-active, knowledgeable, and well informed in fighting this challenging disease. Shared anecdotal treatment information, like that which is available on this Forum, is one of the most powerful weapons that we in the ASPS Community have in fighting ASPS since it is so little known and poorly understood by most oncologists. Hopefully your brother is being treated by an oncologist who is a Sarcoma specialist, as that is also vitally important. Please know that my very best wishes are with your brother for a very successful response and outcome to his treatment, and please let him know that he is not alone in his battle. Take care Marietjie, let Hope lead you and your brother through each day, and keep in touch with this Forum as you are able.
Reaching out to share special caring thoughts, healing wishes for your brother, and continued Hope,
Bonni Hess, mother of now 30 year old Brittany diagnosed with ASPS at age 19 in July 2001

Bonni,
Thanks a million for your response. This means so much to me. It is just so sad to hear that ASPS is not responding well to this tipe of treatment. I am sorry but where do i find Brittany's story? As you said, i would like to stay on top of things and already have a lot of questions to ask the oncologist in two weeks's time. Did Brittany received MAID treatment, and if not, how is she being treated? And Wow, 11 years and you are still fighting! That's encouragement.
It is just so frustrating not knowing, but as you said: there is always Hope and i do believe that God is with us all the way!
Regards.
Marietjie.

Marietjie, all the stories can be found in the Personal Updates topic where people open the New Topic with the name (or a nickname depends on the privacy wishes) of the patient and keep adding as the problem arises and what treatment was done to deal with it. I suggest you to open a New Topic with the name of your brother and make a short description of his Dx story for a starter. We try to collect and share all the ASPS related information possible and you never know what might be useful for someone else at some point. For example I already see some unusual info in your brother case - he was Dx being already 46 yrs old when most of the patients here are young adults. It may be means that he already had his tumor for a long, long time, may be decades.

Olga,
Thanks, i will do that. Yes, I know he's had the tumor for about 8 - 10 years, but refused to see a dr as he is so scared of drs! That didn't help him at all, which is so unfortunate. He lives about 2 and half hours' drive from me in a small countrytown and it was so difficult to get him to see a dr.
I'll post his story asap.
Regards.
Marietjie.

Hi everybody!
I am South African and would like to share my brother's story with you.
Tok (46 years old) was diagnosed (DX?) with ASPS in Jan 2012. The primary tumor was on his right upper arm measured 19cmx22cm on the day of removal. He was in surgery for about 2 hours and stayed in ICU for 24 hours. There is not much of the muscle left, as you can imagine and some nerves got damaged as well. The surgeon managed to remove the whole tumor, BUT he had 24 mets in both lungs. 10 in the right lung and 14 in the left lung - this sounded strange to me as i thought the tumor on the right arm would affect the right lung most!
The thoracic surgeon removed the mets in Feb, but as she told us, she could only removed the bigger ones. The biggest tumor measured 3cm. The "grains of sand" were left behind and we found out about three weeks ago, after a CT scan that they grew to a alarming 0,9cm.
Tok underwent his first bout of chemo during last week. Unfortunately we know absolutely nothing about chemotherapy and didn't really know what questions to ask the oncologist! He explained to us that he was going to use the MAID treatment: Doxorubicin, Dacarbazine and Ifosfamide on day one. Mesna, Doxorubicin, Dacarbazine and Ifosfamide on days 2 and 3 and Doxorubicin and Dacarbazine on day 4. A total of 96 hours' chemotherapy.
Luckily he also prescribed a wonderful anti-nausea drug and Tok was really ok to a certain extend. At the moment he is eating little bits and is feeling better every day. The chemo will be repeated in two weeks' time. 21 Days from day one of chemo till the next treatment starts.
My only concern is: is the oncologist on the right track with the treatment? And please, if anybody out there has had the MAID treatment, please let me know. I don't know if this method of treating ASPS is obsolete? Please, i would really appreciate any feedback.
Tok is married to Carreen and has a beautiful son, Adrian 17 yrs old. Regards from sunny Pretoria, South Africa.

Hello again Marietjie,
It was good to hear back from you. In response to your questions about Brittany, as Olga said general information about individual patients can be found in the Personal Updates section listed under their individual names, but additionally there is also information about patients in the various topics relating to their treatments. During the past three years, Brittany has been participating in a Cediranib Clinical Trial in Edmonton, Alberta, Canada so I have posted her updates in the Cediranib topic which is under the ASPS Clinical Trials section. Thankfully Brittany has had a very successful response to the Cediranib thus far with three years of stable disease and dramatic shrinkage/disappearance of all of her widely disseminated visible tumors, but unfortunately there is always a risk of developed resistance to the Cediranib and disease progression. To our knowledge, Brittany at this time is the ASPS patient with the longest sustained stability on Cediranib in the world because the majority of the Cediranib patients heartbreakingly ultimately developed resistance and progression of their disease. At this time, Cediranib is only available in Clinical Trial, and there is a concern that it will not continue to be developed and manufactured since the pharmaceutical company, Astra Zeneca, has decided to discontinue its development based on financial profit considerations. Cediranib is a member of a group of promising new drugs called Tyrosine Kinase Inhibitors (TKI's), including Sunitinib and Pazopanib, which are showing some success for ASPS so you might want to discuss these possible treatment options with the oncologist.
Prior to Brittany's Cediranib treatment, she had undergone 23 surgeries/ablations/radiosurgeries to remove/shrink/destroy tumors in her thigh (the primary tumor), lungs, liver, brain, tibia, breast, and spine. She also underwent radiation to her primary tumor site, as well as failed radiation to her spine, and she participated in two other Clinical Trials which unfortunately were unsuccessful in stabilizing the progression of her disease and shrinking/destroying her numerous tumors. Prior to her beginning the Cediranib Trial, she also had developed metastatic tumors in her duodenum, small bowel intussuception, and pancreas which thankfully have now disappeared as a result of the Cediranib.
As I said in my previous response, it is critically important to be very pro-active, knowledgeable, and well informed in fighting this disease. If your brother has not already had them, he needs to have chest/abdominal/pelvic CT scans, a full body bone scan, and a brain MRI, NOT just a brain CT because brain CT's can't show metastatic brain tumors (mets) at the smallest most treatable size. He and/or you need to request copies of all radiology reports and scans and to schedule regular scans to monitor the development/growth of his tumors. I know that your brother and you must be completely overwhelmed with everything right now, but as I said before, you are not alone in this difficult battle. Your brother is very fortunate to have your special caring, help, and love, and those of us on this Forum are here to help you with shared information and support. Take care Marietjie, and feel free to write with any questions that you may have.
With special caring thoughts, healing wishes for your brother, and continued Hope,
Bonni

Dear Marietjie,
Thank you for posting more information about your brother Tok and his recent ASPS diagnosis in this Personal Updates section where it can be more easily followed along with the other patients on this Board. Your initial Guest Book entries and the responses have also been moved here by the Web site administrator to consolidate everything into one area. My continued special thoughts and best wishes are with Tok and you, and I will be anxiously awaiting your updates and holding very tight to Hope for good news of a successful response to his treatment.
With special caring thoughts, healing wishes for Tok, and continued Hope,
Bonni

Thank you for sharing Tok's story.

Have you inquired about getting sunitinib or cediranib? Does his financial situation allow getting a laser assisted lung resection in Germany?

Has he done a brain MRI, and abdomen CT, and a bone scan?

Bonni and Ivan,
Again thanks for your response. Bonni, i will make sure to ask the oncologist about al the meds that you told me. I demand an answer from him about trials etc and will let you know. We will be seeing him on 02/05 when Tok will start his second chemo.
Ivan, he's had an MRI as well as two CT's which fortunately only shows the mets in his lungs. I will most certainly ask about future MRI's as well as an MRI of the brain.
Thank you so much for your support.
Tok, as well as the rest of our family, do appreciate this so much.
Have a lovely day.

Sorry Ivan,
We could only hope and dream to go to Germany, but unfortunately that will always only be a dream. Our Rand currency is so poor against the Euro that it will not be possible to go, but thanks for asking! Be sure that i will make it my mission to keep Tok's oncologist on his toes!

MarietjievdMerwe wrote:Bonni and Ivan,
Again thanks for your response. Bonni, i will make sure to ask the oncologist about al the meds that you told me. I demand an answer from him about trials etc and will let you know. We will be seeing him on 02/05 when Tok will start his second chemo.
Ivan, he's had an MRI as well as two CT's which fortunately only shows the mets in his lungs. I will most certainly ask about future MRI's as well as an MRI of the brain.
Thank you so much for your support.
Tok, as well as the rest of our family, do appreciate this so much.
Have a lovely day.

Definitely get the brain MRI done ASAP. Those mets are very deadly, but easily treatable at smaller sizes.

I think chemo will prove useless, so other strategies are definitely needed.

Ivan,
We'll do so and will let you know.

How many larger sized tumors are in the lungs, by the way? If it's only a couple you could ablate them. If anything, that could buy a couple of years that it would take for the tiny ones to grow.

Ivan,
The last CT showed a"few", but the oncologist didn't say how many there were. These are going to be his "markers" till the next CT, which will only be after the 3rd chemo. I only remembered the thoracic surgeon talking about the "grains of sand" that she felt but couldn't remove without causing too much damage to the lungs. As far as i know there is nobody in SA doing the laser treatment (?), but i will make sure to find out about all the treatment available. I also contacted our local CANSA, but they are very slow to react, which is so frustrating! Did you receive the MAID treatment?