Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Olga and Ivan, I'm Don from the Philippines. I was diagnosed with Alveolar Soft Part Sarcoma last May 2012 and the tumor was removed from my right thigh. There are several nodules in my lungs and abdomen (around 5 seen from the CT scan result; biggest in size is around 2cm). I am currently undergoing chemotherapy, my 6th and last will be on Oct.6-8. After my 3rd chemo, CT scan result showed that only 1 of the nodules decrease in size (decreased by 0.3cm) so the doctor decided to add another drug for my 4th-6th chemo. After my 6th chemo, CT scan will be performed again. The doctor told us that we may have to undergo radiotherapy for 30 days after my chemo. I asked him if he knew about cryoablation and he told us that he knew cryosurgery and he doesn't think it can be used to remove lung nodules. I don't know if he's updated with this procedure yet and I don't know if its available in the country as well?

I'm not sure where to find a reliable information about this procedure but I would want to consider this if its available in the country or in South East Asia and if it doesn't cost too much? Hoping for any information you may have. Thanks

Don, welcome to the forum. Your original post was moved from the cryo section as it looks like the answers might involve more subjects than the cryo.
First of all, do you know what is the exact location for the abdominal mets? Depends on the location, other ablation techniques might be used instead of cryo if it is not avail. where you live - RFA is the most often used one. Also people get treated by the radiosurgery which is very different from the usual radiation as it is a very high dose delivered to a small spot in 1 or 2 treatments, its effect is similar to the local ablation, it might be available locally as well - the units like Novalis, CyberKnife etc.
The closest out of country place where more local treatments might be available would be Singapore or other technically advanced countries in the region.
What is the plan with the radiotherapy, what is it going to be used for? I would suggest you to ask the oncologist if he knows that ASPS is very resistant to the conventional medium radiotherapy doses, it usually does not do anything good for our patients - unlike the radiosurgery that is often works well but for it the target needs to be small.
The surgery is the better choice for the tumors that more than 20 mm if it is accessible.

Dear Don,
As with everyone on this Board, I am so sorry for the ASPS diagnosis that brought you here, but am grateful that you found your way to the CureASPS Web site and that you have reached out for information. I have the same questions as Olga regarding the location of your abdominal met because your treatment for the abdominal met will be dependent on whether it is located in an organ like the liver which, depending on the size of the met, could possibly be treated with an ablation procedure like Cryoablation or Radiofrequency ablation (RFA) or perhaps radiosurgery such as Cyberknife, or if the met is more superficially located on your abdomen it could probably be surgically removed. I am concerned about your doctor's apparent lack of knowledge about the successful use of Cryoablation to shrink/destroy lung mets, and would encourage you to seek advice on this issue from another oncologist who is a Sarcoma specialist, if possible, and more knowledgeable about up to date Sarcoma treatments. I am also concerned about your doctor's plans to have you undergo 30 days of radiation treatment since, as Olga said, ASPS is notoriously resistant to standard radiation, and the only type of radiation that has seemed to show success for ASPS is high dose focussed radiation which is a radiosurgery procedure done with Gamma Knife or Cyberknife and is usually only successful for smaller mets.
Also, if it has not already been done, it is very important that you have a brain MRI and a full body bone scan as soon as possible to rule out mets in those areas of your body since unfortunately ASPS can metastasize to the brain and bones and it is critically important to find the mets at the smallest possible size for the best chance of a successful treatment outcome.
Is the chemo that you are currently receiving Ifosfamide and Adriamyacin? My very best wishes are with you for a very successful response to your chemo, and I will be anxiously awaiting your next update and holding very tight to Hope for good news from the results of your CT scans following your last chemo treatment in October.
In the meantime, please take care Don, know that you are not alone in your battle with this extremely rare disease and that I and the others on this Board are here to help you with shared information and strengthening support, let Hope lead you through each day, and keep in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess, mother of 30 year old Brittany diagnosed with ASPS at age 19 in July 2001

Hi Olga and Boni Hess,

Thanks for your input!

The location of the nodules are as follow:

Abdomen
- right inguinal canal measuring approx 2cm. (June 13 CT scan)

Lungs
- non calcified well defined smoothly marginated pulmonary parenchymal nodule in the superior segment of the right upper lung measuring 1.6cm x 1.4cm remain unchanged ( from June 13 CT scan to Aug. 15 CT scan)

- other few mm nodules numbering at least 2 in the left lingula and 1 in the medial basal left lower lobe and 1 in the anterior basal segment of the right lower lobe remain unchanged ( from June 13 CT scan to Aug. 15 CT scan)

- the previously noted small left para-aortic pulmonic lymph nodes now measures 1.7cm previously about 2cm ( from June 13 CT scan to Aug. 15 CT scan) greatest AP diameter

From my 1st chemo up tp the 3rd, the doctor is using Ifosfamide (Holoxan), Epirubicin (Pharmorubicin), and Ramosetron (Nasea). Starting on my 4th chemo up to my 6th and last chemo (this coming sat-mon), Dacarbazine (Duticin) was added.

Another CT scan of my lungs will be performed again probably a week after my last chemo to check the sizes of the nodules. Hopefully there will be some good news

I hope all is well with Brittany and Ivan in their battle against ASPS. Again, thanks Olga and Bonni Hess!

Dear Don,
Thank you for the additional information. Except for the Ifosfamide, I am unfamiar with any of the other drugs being used in your chemo regimen, but I Hope that the combination will be very successful in stabilizing the progression of your disease and shrinking/destroying your tumors. I Hope too that you are tolerating the treatment well. My continued most positive thoughts and very best wishes will be with you during the remainder of your chemo treatment, and I will be anxiously awaiting your update on the results of your post chemo scans which will Hopefully also include an abdominal CT to determine the status of your relatively large abdominal met which should be closely followed. Additionally, as I told you in my previous post, it is very important that you also have a brain MRI and full body bone scan, if these have not already been done, so I encourage you to discuss with, and request these scans from your doctor sometime soon.
Take care Don.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

Dear Don,
Since it has now been almost two months since your last update, I just wanted to touch base to find out how you are doing. Hopefully you have now completed your sixth and last chemo, and your post chemo scan results showed that the chemo has been successful in stabilizing your disease and shrinking/destroying your tumors. I will be anxiously awaiting your update when your time and the situation allow, and continuing to hold you very close in my most caring thoughts. Please take care and keep in touch as you are able.
With deepest caring, healing wishes, and continued Hope,
Bonni

Dear Don,

I am bernard banarez from cagayan valley philippines. My son bence, was also diagnosed ASPS at Philippine General Hospital last July, 2016. According to his doctors it is their first time to encounter this type of cancer.

Don, can i ask you a question if you don't mind. How are you today? Did the chemo or radiation healed you? Where hospital did you go for treatment? Can you help me in tje case of my son.

Thank you and i hope you're doing well now.

God Bless.

Bernard Banarez

Bernard
Click on Dons name to the right of any of his posts, then it will bring you to Don's registraon. Where you see PM, click on and you can send a personal message to ask questions as well
Love
Debbie

Unfortunately and concerningly Don has not posted on the Board nor even visited the Web site for the past 4 years so there is no way to know what his current status is or if he may even have tragically lost his ASPS battle. Sadly, and perplexingly many patients who initially reach out to post on the Board discontinue their Board participation and lose contact. With special caring thoughts and continued Hope, Bonni