Daniel D in South Korea - Dx 2013

[D.ap]

Hi Daniel
Please don't be discouraged
Do you have other tumors ? You've had bone scands and rescanned where you had surgery on your thigh with first surgery ?

Cryoblation is MUCH easier for patients to recover from than VATS.
However please find surgeon that has experience with procedure

Love Debbie

[danieldew7]

Hi Debbie,
Thanks for your kind reply! I'm fine (not fine per se) and positive toward this progress,
however I just wondering which method is the best option.
As someone on this forum stated, with no 100% cure method for now,
ultimately the patient must pick whether chemo or surgery is the best for him/herself.
About the surgery, I will choose cryo over VATS then. Thank you for the insight.

[Bonni Hess]

Dear Daniel,
I am so sorry, but given the nature of this insidious disease, unfortunately not surprised about the increased growth of your lung mets. I completely agree with Olga that a lung biopsy is an unnecessary procedure, and I agree with Olga and Debbie that Cryoablation of the largest most concerning lung mets would be a much better treatment option than the more invasive, painful, and potentially scar tissue causing VATS surgery. I am unclear from your posts if you have any other mets anywhere in your body other than your multiple lung mets. If they haven't already been done, I strongly encourage you to have a brain MRI, abdominal/pelvic MRI or CT scan, and a full body bone scan to determine if there are any mets in those areas of your body. I Hope that you will be able to obtain Cryoablation of your largest most concerning lung mets if the procedure is available from an experienced interventional radiologist. Unless you have rapidly and widely disseminated disease progression and tumor growth that can't be successfully treated with resection, ablation, or radiosurgery, I personally feel that systemic chemotherapy should be postponed until there are no remaining treatment options because there is unfortunately currently no chemo treatment available for ASPS that can provide a permanent cure. If you begin a systemic treatment which is unsuccessful, you could experience aggressive disease progression when the systemic treatment drug is discontinued, or you may be inelgible for other systemic treatments. If you do decide to go forward with a systemic chemo treatment, it is critically important that you be extremely knowledgeable and well informed about the treatment and insist on being provided with documented data from your oncologist regarding the potential effectiveness of the drug for ASPS. Take care dear Daniel, stay strong, be pro-active and as knowledgeable as possible, and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni

[danieldew7]

Dear Bonni,
Thank you for your encouragement.
The one who suggest biopsy first was nurse who was in charge of hospital protocol, of course the surgeon didn't mention biopsy at all
About chemo, she already know that at this point there is no 100% cure, but before perform cryoablation she still wants to check with my onco.
I have to do lung capacity test tomorrow anyway, and my next appointment is this Friday.
I've done bone scan and brain MRI few months ago and the result were clear. The onco. scheduled another brain MRI for the next scan.

As far as I read on this board, here is the record of chemo, please correct me if I'm wrong.

1) Drugs that have positive progress:
- Axitinib (inlyta), tumor shrink 6.7☞4.7 in 5 months 1 case
- Afinitor, lung tumor disappear 1 case
- ARQ-197 is a c-met inhibitor stable 6 years 1 case
- Anlotinib phase 2 efficient, however my onco didn't recommend this
- PF-06801591 phase 1, lung met vanish 1 case

2) Drugs that the onco discourage or have no positive progress:
- Cediranib and sunitinib are VEGF blocker, but no cure progress
- Votrient, pazopanib, and crizotinib do not work (need clarification)

3) Drugs that still on progress/ unknown result:
- Mogamulizumab+ PD-L1 Immunotherapy
- Obdivo (nivolumab) on trial
- ASPL-TFE3
- Pembrolizumab (keytruda/ mk-3475)

[Olga]

Hi Daniel,
thank you for the clarification with the nurse - our system here is set differently and nurses do not recommend the treatments or procedures, they have different responsibilities.
Re. systemic treatment by diff. drugs.
I am pretty puzzled by your review of the info. Have you read the success stories part of this board? We only include the very long term stability or regression there.
http://www.cureasps.org/forum/viewforum.php?f=28
All the drugs that you have listed in the Part 1 are actually the drugs with the pretty low or unknown activity in ASPS, with single cases of activity often very short lived. You have to understand that few mm shrinkage may last for awhile followed by the faster growth when all the shrinkage advantage is lost after, so by itself the reports of shrinkage or even disappearance of some mets really mean that the drug is active in ASPS - it can influence ASPS tumor. It is not known if these drugs are going to reduce or prolong the patient's lives, unless the clinical trial is done and the result is known. As of now, we do not have any info re. drugs being positively beneficial for ASPS patients - to be admitted that the drug is such, it has to be found beneficial for some number of the patients for some prolonged period of time. So once again - there are some cases of activity in these drugs with the very rare cases of the long term stability even in a trial with the significant number of ASPS patients (ARQ-197).
We do however have some positive published small group/single cases sunitinib info (with the prolonged partial responses) and a personal experience here on the board with the cediranib activity (it is more often active than not in ASPS and we even have a case of the complete long term remission in ASPS patient). So I am not sure where did you get the idea that there is no positive progress with them or if they are somehow less interesting than the group 1?
The group 3 are the immunotherapy drugs that are in clinical trials now, we know they are pretty active in ASPS but we have no idea if they are going to prolong people lives.
So once again - there is no known cure for ASPS at the moment. There are few clinical trial options in some countries and also some off label drugs that are used in order to try to get some stability or in some cases make the inoperable case into the one that can be resected by reducing the size a bit. Clinical trials or off label used drugs like sunitinib etc. should be only used when other easier options are absent. You can still have the met cryoablated (but only if there is a VERY experienced doc in your area) or VATS resected, and wait to see if the more reliable systemic option appears. We have few cases of the very long term remission with the systemic treatments - incl. the published single cases - with the traditional chemotherapy and cediranib, but they are all the very limited in numbers. We also have numerous cases when these drug did not work.

[danieldew7]

Dear Olga,
I jot down those data from this forum and other bloggers, maybe it's just I happened to view the negative case on group 2.
And yes I visited success stories part on this board, and one of them is stable for several years without any systemic treatment.
I will tell you what my onco. said further this Friday, whether he recommend to do surgery straight forward or do systemic treatment first beforehand.
Thanks for the correction! : )

[danieldew7]

Dear all,
After discussion, my onco and surgeon were agree not to do chemo but surgery right away.
The surgeon able but do not recommend cryoablation and the reason is cryo is only done when there is only small portion of organ left as a last resort.
Therefore, she plan to perform thoracotomy for my left lung first, since surgery for both sides at the same time will burden my body.
The schedule is early feb.

[Bonni Hess]

Dear Daniel, I respectfully disagree with what your surgeon has told you that "cryo is only done when only a small portion of organ left as a last resort". Cryoablation i has been successfully used to shrink and destroy Ivan"s, Brittany's, and many other ASPS patient's lung mets and certainly NOT as "a last tesort with small portion of organ left"!! Lung met Cryoablation is an invaluable and very viable minimally invasive treatment to treat lung mets that are growing too large or located in a dangerous or unresectable area of the lung. although there is a limit to how many mets can be cryoablated so it can't be used to destroy large numbers of mets, and it is usually not effective on mets larger than three Centimeters .I strongly encourage you to obtain a second opinion from an experienced interventional radiologist or at least a more Cryoablation knowledgeable pulmonary surgeon if there are no interventionall radiologists with lung Cryoablation experience available . With special caring thoughts, healing wishes, and continued Hope, Bonni

[danieldew7]

Dear Bonni,
Thank you for your concern, I will surely passed this important decision to my surgeon next Tuesday when I came again for lung capacity test.
She afraid the mets remaining will still kickin and alive near the cryoablated part, so she will resurrect via traditional method.
Best regards!

[Bonni Hess]

Dear Daniel, It is correct that the non cryoablated mets will probably continue to grow, but they can be monitored with regular scans and cryoablated if they grow too large or are located in a dangerous area. The problem with a thoracotomy is that it is a much more invasive and painful procedure with a longer recovery, and it can create problematic scar tissue. Even if all of the scan visible mets can be removed with a thoracotomy, currently microscopic non scan visible mets will probably continue to develop and grow and then future resection or other treatments may be more difficult because of the thoracotomy caused scar tissue. Additionally, there is some evidence that cryoablation may actually increase the effectiveness of systemic treatments if you eventually decide to pursue systemic treatment. However, I am aware of one ASPS patient who underwent a thoracotomy more than ten years ago when she was in her late teens and has very thankfully remained stable with no metastatic spread thus far, so the thoracotomy was apparently successful in stabilizing the progression of her disease. As with everything with this very challenging disease, each patient is different and may respond differently to the same treatment, so we can never say never. This creates additional challenges in making treatment decisions, but all we can do is weigh the pros and cons of a potential treatment and make the most informed decision possible based on pro-active research, open discussion and questions with the doctors, and networking with other ASPS patients and patient families. With special caring thoughts, healing wishes, and continued Hope, Bonni

[danieldew7]

Dear all,
My onco keeps insisting that there is no need to do systemic treatment,
so 2 weeks ago I underwent thoracotomy for my left lung and the x-ray scan yesterday is clear.
There were 20 mets resected, 19 of them are sarcoma and the rest one is just lymph nodule.

He scheduled another lung CT scan at the end of May to do the surgery for my right lung,
or if there is sudden growth in my left lung he might consider chemo.
Still, he refuse the use of chemo as for now.

[Olga]

Hi Daniel, it is good that your recovery is going on fine. An X-Ray only shows that the lung is properly inflated and there is no airleak or significant bleeding, but it is unable to get the correct result of the surgery if it was successful in removing all the mets. Right now the most important thing for you is to recover your breathing capacity completely - exercise, walk more, no not sit to much as this position presses on your lower lung lobes. In few months before of the second surgery when you get the next CT scan, you will see the result of this surgery. I hope that it will be good and the second surgery will be a success.

[D.ap]

Hello Daniel
I'm glad that you through with your first surgery.
Be sure and do your spirometer exercises to help keep your lung oxygen levels up! Taking your pain meds just before the exercise when possible helps for a better experience
I agree with Olga that the X-ray was used to make sure your lung re inflated properly . The ct scan in the months ahead will tell how successful the procedure had been.
What techingue was used ? Video assisted?
Love
Debbie

[danieldew7]

Dear Olga and Debbie,
Thank you for the clarification. Yes, the procedure was VATS.
One distinct difference before and after surgery is I almost never have a cough again now, not like before surgery when I had cough once every 10 or 30 minutes.

[D.ap]

Daniel

That's wonderful news of no cough!
What was the biggest tumor removed?