Daniel D in South Korea - Dx 2013

[danieldew7]

Dear Jussi,
Yes actually none of the doctor have 100% confidence what is the perfect treatment right now, they only choose the best decision according to other ASPS cases.
The surgeon performed vats and intended not to open my chest, but during procedure they decided to do open thoracotomy.
Best regards,

[Olga]

Hi Daniel,
thank you for the clarification re. the surgery, this is probably the reason they are hesitant to do the second surgery. I was wondering how was the surgeon able to perform such a multiple VATS for the spread and often centrally located metastases. I would even say that the surgeon was unreasonably optimistic in the first place to even expect to be able to make it by VATS. All of us who traveled to Germany to get the laser assisted surgery - we decided to go there, pay for the surgery only because it is not possible to remove the big number of the small ASPS lung mets by VATS, or by any open surgery without the significant loss of the lung tissue. If you study and understand the technicalities of how the thoracic surgery is done you understand that. With the tools that are used it is impossible, only with the laser you can preserve the lungs from cutting out the big pie shaped pieces of lung tissue. So now they are very rightfully hesitant to cut your second lung by that much. If you have no money to go for the laser assisted surgery in Germany, start asking re. cryoablation of the biggest mets and remove them by 1-2 as the time goes and they grow not to let them overgrow 10 mm size, the optimal one is 10-15 mm for the skilled doctor.

[danieldew7]

Dear all,

The last week X-ray scan shows that there is no additional met or met growth since the last scan.
The next CT scan will be at Nov. 20th.
Best regards,

[D.ap]

Daniel,

This is wonderful news !
Sharing in your joyous announcement !
When's your next brain/ bone scan ?
It's been a year huh ?
Love
Debbie

[Bonni Hess]

Dear Daniel, Thank you for sharing the very good news about your most recent chest x-ray showing no new lung mets or increased growth which is very encouraging, but I must caution you that chest x-rays are inadequate to detect small mets and/or a small amount of growth and that a chest CT with contrast is necessary to provide the most accurate and definitive scan results. I am grateful that a chest CT has been scheduled for November and Hope that it will confirm the x-ray indications of no new lung mets and no increased growth of the existing ones. Also, I Hope that your doctors are being vigilant with scheduling regular pelvic/abdominal CT or MRI scans every 3 to 6 months and a brain MRI and full body bone scan once a year which is critically important to ensure appropriate and adequate monitoring of this metastatic disease. With special caring thoughts, healing wishes, and continued Hope, Bonni

[arojussi]

Regular x-ray is not accurate enough to detect asps lung mets. I used lung mri as often as possible, but it is really expensive and lung ct is indeed more accurate. Ct from abdomen gives you way more radiation than lung ct. So I would ask at least abdominal mri addition to brain mri.

[danieldew7]

Dear all,

Yes, our onco. team is well aware of the x-ray capacity. They just want to make sure that there is no sudden growth or sudden new met appearance.
The next scan is CT scan and after that we plan to get brain or full body scan.
Dear Jussi, my onco doesn't recommended lung MRI since it is less accurate than CT as you stated before.

Thank you and best regards,

[D.ap]

Dear all,

Yes, our onco. team is well aware of the x-ray capacity. They just want to make sure that there is no sudden growth or sudden new met appearance.
The next scan is CT scan and after that we plan to get brain or full body scan.
Dear Jussi, my onco doesn't recommended lung MRI since it is less accurate than CT as you stated before.

Thank you and best regards,

Scan information is all good information to remember .
Wanted to add that X-ray is also a lot less exposure and Daniel, I agree for what you all were looking for , it was a good choice to use in what all were trying to determine on "sudden" growth .

[danieldew7]

Dear all,
I have input from my colleague to get dendritict cell therapy if there is further mets growth, and since it is available here in Korea, have you heard about it?
Thanks,
Daniel D.

[danieldew7]

Last week CT scan shown good news for left lung and bad news for right lung, which made my onco. agreed to do another incision on right lung.
Lt lung: Nothing new since March
Rt lung: Slight growth 14mm -> 17mm from last CT scan (7 months)
The surgery will be next month.

For side notes, there is someone I know which have lung mets and there was decreasing from 0.4 -0.3 to 0.1-0.2, decreasing number and no new met from CT scan result with chemotherapy, and then combined TXL, and NK cell therapy.
He startes NK cell therapy in Thailand and Dendritrict cell therapy in Japan.

[Olga]

Daniel - what is TXL?

[D.ap]

Olga
I’ve heard of it being used by another person
Maybe from China ?


It’s an herb used to boost the immune system I believe

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2918619
/
Memorial Sloan Kettering is studying it as well to use primarily alone and or alongside various cancer treatments.

https://www.mskcc.org/cancer-care/integ ... /tian-xian

[danieldew7]

Dear Olga,
Yes it is as D.ap said, Tian Xian Liquid.
http://www.cancerresearchuk.org/about-c ... -tian-xian

However, I will still stick with traditional incision first and continuous full PET scan.

[MartinBube]

Daniel,

Why are you doing the PET Scan?

As I've read a lot in the past and now, Chest CT and Brain, MRI for Pelvic, Abdomen is better option.

Do you always do the PET Scan on your checks? isn't that even more radiation?

[danieldew7]

Dear Martin,

PET was done when I was diagnosed with ASPS and my onco wanted to check whether there are other mets. or not.
I haven't ask it yet, but if you think CT is better for brain then I will ask my onco about that.

For side note, my right lung surgery was done 2 weeks ago and doing well in recovery.
Lt lung: Nothing new since March
Rt lung: Slight growth 14mm -> 17mm from last CT scan (7 months), and after incision they removed 18 mets and left some tiny mets due to location and size. They will be treated with radiation about next month, any comment?

Thank you and best regards,