Daniel D in South Korea - Dx 2013

[danieldew7]

Dear MartinBube,
Thank you for your concern, I will ask for any viable option aside than local surgery and chemotherapy.
He told me that from the growth so far (9 months without mets growth and the next 4 months there are some small grownth) 3 months is not going to give me threat and 3 months progress is needed to decide future treatment.
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Dear Olga,
Thank you for your reply, my doctor also told me that when I decided local surgery, he will resects all of the mets and try to find any mets that couldn't be detected by MRI by groping (yes, his hand will grops my lungs and remove if there is mets, still sounds weird for me).
As for now, I don't have additional financial resource or overseas health insurance, so I depend on company health insurance for the payment.

[D.ap]

Hi Daniel
It sounds like you are learning lots with having to deal with this darn disease
Josh our son has two insicion scars probably every bit of 30" on his left and right side rib cage
Dr Rolle deflated the lungs and also felt for tumors to remove
He removed over 70 tumors from each of the lungs for a total of over 150 tumors.

Is the procedure performed with a laser ?
Stay strong

Love
Debbie

[Olga]

Daniel- any thoracic surgeon palates deflated lung manually to feel the smaller lung mets manually. By the CT scan only 1-2 mm mets can be found but manually 0.5 mm mets can be felt as ASPS mets feel like grain. The problem with the conventional surgery is the bleeding. They cut the met and the tissue bleeds and makes the hunt difficult, after the laser resection the field is dry and the surgeon can find more. But if you have no money or insurance for Dr.Rolle surgery, I would look into adding the traditional chemotherapy 2 rounds before of the surgery then to see if it had any effect at the respected specimen. Chemotherapy alone is ineffective for ASPS but in combination with the surgery it may help to eradicate the mets that are very small and will be missed at the surgery. There are few cases when it worked, read the report of Dr.Nickerson in our library.

[danieldew7]

Dear Debbie,
150 tumors?? Gosh that sounds strenous for the patient.
Well I will keep you updated my treatment and detailed improvement. I'm still unsure whether veggies and fruits diet which recommended by a lot of people is really work or just another placebo.

Daniel- any thoracic surgeon palates deflated lung manually to feel the smaller lung mets manually. By the CT scan only 1-2 mm mets can be found but manually 0.5 mm mets can be felt as ASPS mets feel like grain. The problem with the conventional surgery is the bleeding. They cut the met and the tissue bleeds and makes the hunt difficult, after the laser resection the field is dry and the surgeon can find more. But if you have no money or insurance for Dr.Rolle surgery, I would look into adding the traditional chemotherapy 2 rounds before of the surgery then to see if it had any effect at the respected specimen. Chemotherapy alone is ineffective for ASPS but in combination with the surgery it may help to eradicate the mets that are very small and will be missed at the surgery. There are few cases when it worked, read the report of Dr.Nickerson in our library.

Dear Olga,
Thank you for that information, I guess that was what the doctor mentioned.
I just read the abstract (http://www.ncbi.nlm.nih.gov/pubmed/15087950) and I will pass this info to my doctor before taking any surgery decision.

Keep healthy, lately MERS outbreak getting worse in here.
The outbreak start from
1) 68 yo man from Saudi Arabia, he got fever and diagnosed as MERS is Korea
2) Few 60 yo+ man and woman died from MERS
3) 1 pregnant woman diagnosed MERS (alive)
4) 2 kids diagnosed MERS (alive)
5) 1 30 yo woman died from MERS
6) Other young people cought MERS
Government stated that MERS here is only spread in hospital, but nowadays the patient is from outside hospital.

Have a nice day anyway!

[danieldew7]

Current update;
Last week I got chest CT scan and thigh MRI, and today the doctor said that all of 6 nodules are still stable in size and numbers.
They scheduled another CT+MRI scan again this December.
For these 3 months sice last scan, I do normal activity and normal diet as usual.
However, I do jogging for about 30 minutes 3 times a week and ate a lot of veggies which I didn't do before ASPS diagnosis.
I don't know whether those affect the nodules, but I'll jot down any additional activity just for you know.

[Olga]

Hi Daniel,
congrats on a good scan results. The only cautionary note that I want to offer is the scan reading methodology. If the nodules grow really slow and they compare scans to the previous ones, the grow is really hard to notice. We had the situation with Ivan when his lungs nodules were reported as stable for a year but when compared with the older scans with a year in between, the grow became obvious, i.e. there was 1-1.5 mm growth between the scans that is inconclusive as the same variability can be created by diff. lung inflation when you breath or just by slightly different positioning of the scanner, but over the year the cumulative growth was like 4-5 mm. So next time ask them to compare to the earlier scan you have, not the previous one.
The number of mets they see is low, if it stays that low I would start cryo ablating them one by one starting from the bigger/worse located ones.

[danieldew7]

Hi Olga,
Thanks for your concern and suggestion.
I will ask my doctor to compare not just from previous 3 months but from 6 and 9 months result.
Yesterday I ask about the reoccurence of the mets after surgery and the lung cancer specialist said that it is possible even after we removed 6 nodules and there will be another one in the future, so he just wait for another 3 months.
All of 3 doctors who treat me (oncologist, lung cancer specialist and radiologist) will raise this case in medical committee this month.
In the mean time I will discuss about the cyroablation viability.
Thank you and best regards!

[danieldew7]

Current update;
Last week I got chest CT scan and thigh MRI, and today the doctor said that all of 6 nodules are still stable in size and numbers. (The biggest one is 4.7 mm in diameter)
They scheduled another CT+MRI scan again 4 months later. Plus, 4 months later the doc. also wants to do bone scanning and ultrasonic test, as he said that he want to see if there is any abnomaly or unusual activity in my body.
For these 3 months since last scan, I do normal activity and normal diet as usual.
However, I do jogging for about 30 minutes 3 times a week and ate a lot of veggies which I didn't do before ASPS diagnosis plus consuming curcuma zedoria (6 pills a day) and drink soursop (graviola) leaves tea a glass almost everyday.
I don't know whether those affect the nodules, but I'll jot down any additional activity just for you know.

He told me that from the nodule growth so far (9 months without mets growth, next 4 months there are 3 small grownth, next 3 months all 6 are stable with the biggest one is 4.7 mm in diameter) I do not need any treatment and scheduled another CT+MRI scan again 4 months later.

[Olga]

Hi Daniel, I would agree with your doctor re. no treatment at this time. The max size of the nodule is to small for the cryoablation as they won't be able to find the target reliably - it has to be close to 10 mm, at least 8-9. And the number of the mets is small to justify an open surgery - if they stay in that number you might be able to deal with them by cryo only. Also there are promising treatments currently in clinical trials like PD-L1 immunotherapy targeting drugs so you might get lucky and be able to wait till they find something. So go on and live you life. As for the bone scan - it needs to be done along with the brain scan (MRI) even if there are no signs of anything, just to be able to catch it on a smaller treatable size.

[Bonni Hess]

Dear Daniel,
Thank you for your thoughtful and detailed update with the very good news of continued disease stability If it is not already being done, it is important that your scans are being compared to scans from at least a year ago, and not just to the previous scan to get the most accurate results. Also, in addition to your regular four month chest CT and thigh MRI, it is important for you to have regular four month abdominal/pelvic scans as well as an annual brain MRI and whole body bone scan to ensure that there are no asymptomatic mets in those areas of your body. In the meantime, as Olga said, "go on and live your life", celebrate your good scan results, have a wonderful Holiday season, and may the New Year bring continued disease stability, good health, and much happiness for you . Sharing the great joy of your good scan results with special happiness, celebratory hugs, and continued Hope, Bonni

[danieldew7]

Dear Olga and Bonni,

Thank you for the prompt reply. I also asked my doc. yesterday about the possibility of immunotherapy but he said that we have to wait until there is a promising clinical trial that have been done with ASPS patient, as there is still no result like that in this world for now. I will e-mail my onco. to add the brain scan as well.
Yesterday we also compared with the result from 2014 and the size is still the same but the number increase from 3 to 6 since 9 months ago. We are not sure if that is due to error in reading or the nodules are really increased.
After all, let's just enjoy this holiday- worrying is not going to help anything right? : )

[MartinBube]

Exactly Daniel. Enjoy the holidays and praise life. We know very well that we should not take nothing for granted so I would keep up to the advise from Olga, go and live your life

[danieldew7]

Dear all,

It turned out that after all this time my onco is one of the director of CTOS (Connective Tissue Oncology Society).
http://www.ctos.org/About/BoardofDirectors.aspx
Well he (Ilkyu Han) did not intend to hide it anyway- I just knew from our yesterday meeting.
He will attend the next meeting at Lisbon, Portugal, November 9-12 and the topic will be alveolar soft part sarcoma. Sounds familiar huh?
He stated that due to rare occurence of this case they have to do meeting at least once for this case, as the previous cases all were rare sarcoma studies.

Hi Olga and Bonni,
He also agreed to do the brain MRI along with other scheduled MRI this April.

Martin,
Happy new year and Happy Chinese new year if you celebrate it as well!

[D.ap]

Hi Daniel
That's great that ASPS folks are finally being noticed internationally by the medical community and how nice for u to know dr Llkyu Han

Thanks so much for checking in
Love
Debbie

[danieldew7]

Dear all,
My lung nodules grow slightly in size and the onco. recommended me to do the surgery.
The history so far:
2014/7 Primary resection, 3 nodules (less than 3 mm in diameter) found in lung
2015/6 3 more nodules found in lungs, total 6 nodules (5 in left and 1 in right, the biggest is 4.7 mm in diameter)
2016/4 2 out of 6 nodules grew slightly in size
The brain and bone scan this month is normal, no met. occurrence.
At this point my onco. suggest to do the removal of those nodules, any opinion?