George From China - Dx 2007

[Jorge]

2 more pictures to show different type of ASPS renal met.

[Jorge]

Hi Lynette and George

How are you both doing ?
You weren't near the earth quake were you?
I tried to find the post of where you live and thought I'd just ask again.
I've found a renal Cryoblation link for you to read when you get the time.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2470923/
How big do the areas on the remaining kidney look to be ?

Write when you can
Love
Debbie

Debbie,

It's very kind of you to search the article for me. I really appreciate it.
By the way, I can't see full text of some articles sometimes. Do you need to buy an account to view all of them?

The earth quake happened in the south-west of China which is far from my city. It's very sad, close to 600 people die in the earth quake and the number is going to increase. Fortunately, some roads are re-open and the injured people can be sent outside for better medical care. The People's Liberation Army are working hard to save people and help them recover life and production. Your care for us and people here is much appreciated!

There are 4 small mets on George's--the biggest one is~ 1cm I think. The Urology surgeon suggested cryoablation when he was discharged from hospital last month. But we didn't talk to the details like how to do it yet. The article you shared is very valuable for us. We will do some research and talk to the doctors to make the right decision.

Love,
Lynette

[D.ap]

Lynette

Thanks for the scan pictures. That is very interesting of the slight differences the contrast makes
We are glad to hear of you and George not being in the earth quake area
I am sorry to hear of the deaths though.
I assume that you can't open some articles that are attached in some of the other medical links?
Some times you have to register to some sites to get full text but it will usually prompt you or say " have to register ".

Don't forget to look at Olga's posting on the better cryo machine that targets tumors more accurately so maybe George will have a more successful surgery .
Hope George is feeling better
You take care of yourself too

Much love
Debbie

[Amanda]

Lynette
As Debbie said please look at the post Olga made.
I just had a HUGE tumor removed via cryo *cold* an so far its is almost painless an breathing is almost 100% from what i can feel and
sounds are starting t get clear in my lungs when i listened today it was close to silent now.

It is hard for many including myself that a small much more gentle treatment maybe better than the drastic difficult treatments and surgeries out there ...

I hope so much you read this post and if helped to guid you

Sending hugs to you both <3

[Jorge]

Thank you for your kind remind, Debbie and Amanda. Olga's comments is definately can't be ignored or misssed.
I'm reading the article and website provided by Olga. There are so much useful info. Need some time to digest

Thank you all for your help and support!
Lynette

[Jorge]

Hello guys,

Sorry, I didn't update for a while. George is doing very well, exercises and goes to work everyday.

George had the second open surgery to remove 3 mets on the left kidney in Sept. But the brain mets keep appearing and there is a big progress in the lung...

The main problem is always with the brain mets. In 2014, he had 2 nerosurgeries, 4 Gama Knife. Totally, George has had 9 Gamma Knife procedures to treat ~15 brain mets since Sept 2012. Frequent reviews to find the mets at the smallest size and the radiation dosage are the most important keys to treat the brain mets. The dosage of the first 5 Gamma Knife he had was 14 Grays--in George's experience, this dosage can't destroy ASPS mets completely. The dosage was increased to 18 grays when he's transferred to another hospital and the result is much better.
He had a brain MRI last week. 3 small mets that's treated by Gama Knife before have disappeared. There are other mets show shrinkage or necrosis. One of the 2 mets which are planned to have surgery, continue to shrinkage as it's done with Gamma Knife before. The other one is still very small, less than 5mm--it grew in the surgery area, the doctor is not sure if it's a scar or new met. Looks like there is still hope!

For the lung mets, he will have another laser surgery again, scheduled on Feb 3rd. We plan to stay a month there as we know the recovery of a re-operation could be very hard. The biggest lung mets is 2X2.4cm in the right lung and 2 mets close to 2cm in the left. Fortunately, his lung function is okay. Prof. Rolle asked us to send him a lung function test report and he says it's sufficient to do the surgery.

[D.ap]

Lynette and George,

Thank you for all the great information and the good news.

Its so good to hear from you whenever you'd like to check in with us .

In having this disease all of need to recharge our emotional gas tanks some times. That sometimes involves not looking at the forum every day and that's OK..
We are really happy to hear of Georges exercising and moving forward with his care!

What is Georges lung volume at this time?
Remind us how many tumors were removed previously.
Have you heard of the phenomium of brain tumors appearing in 3 or 5 in a group?

Also I would like to link you to an article Olga posted on performing radiation of brain tumors in the morning.

http://www.cureasps.org/forum/viewtopic.php?f=8&t=557

"GKRS for metastatic NSCLC had better local control, better survival, and a lower rate of CNS-related cause of death when given earlier in the day versus later in the day. These retrospective data should encourage future study in brain radiosurgery and non-CNS stereotactic body radiotherapy series."

All our love
Debbie and Family

[Olga]

Lynette, thank you for the follow up and for sharing this unique experience with the multiple ASPS brain mets treatment. I linked it to a brain mets area post where I asked you some question if you can answer it.
http://www.cureasps.org/forum/viewtopic.php?f=8&t=1012

[Jorge]

Hi Debbie,
To answer your questions,
His lung function is okay. We're in Coswig now, he can blow close to 4000ml with the breathing trainer. But in the pulmonary ventilation function he had, the FVC is 67.72% and FEV 1 is 64.07%--which the doctor said it's not very good, but enough for the surgery.
About the brain mets, I post the detailed experience George had in the following link:
http://www.cureasps.org/forum/viewtopic.php?f=8&t=1012

We're flying back today. The surgery is cancelled as the latest CT scan George had here show great progress that surgery is not an option in this situation

[D.ap]

Lynette and Jorge

Safe travels.we are so sorry to hear of the surgery being cancelled. I know that it had to be for the best or the choice and direction would not of happened.
Prayers and wishes to you both for rest and regrouping. Tomorrow will bring hope . I am sure of it!

Much love to you both. Hugs..
Debbie

[Bonni Hess]

Dear Lynette,
I am so deeply saddened and sorry that George's pre-op chest CT in Coswig showed so much increased lung met growth that laser resection with Dr. Rolle is not an option and the surgery has now been cancelled. My heart breaks for this very disappointing and difficult setback for George and you on his courageous journey to healing, but I am Hopeful that Cryoablation for the largest most concerning lung mets is a possibility and that following Cryo George can begin some type of systemic treatment such as Cediranib which will Hopefully stabilize the progression of his disease and shrink/destroy his mets. Travel safe Homeward bound dear Lynette and know that my most caring thoughts are traveling with you and George.
Sharing the great heartache of this very disappointing news with deepest caring and reaching out to embrace you with special hugs, healing wishes for dear George, warm friendship, much love, and continued Hope,
Bonni

[Jorge]

Hello everyone, it's been a long time since my last update.

A lot happen during the last few months...
George had 3 cryoablations to treat the bigger mets in both lungs since we came back from Coswig—2 before taking TKI and 1 in May.
In the first Cryoablation, the treated mets are close to the stomach and diaphragm, the ablation was incompletely. However, we had to accept it. George had hematuria right after the treatment—which should be a coincidence. He had a CT with contrast, but it didn’t find any met in the urinary system for sure.

George started the TKI after another cryoablation to the lung in March. Lung CT in June shows the untreated bigger ones shrink a little by 3mm, but the small ones remain the same. And there are new mets too...

Bone mets were also found in March as he felt pain in his right arm. He had PET/CT in Jun last year, it didn’t see this bone met! But George recalls he feels the pain occasionally since July—which means the met should be already there when he had the PET in June but the PET can’t see it! This is the same with ECT! The ECT George had in early 2014 and 2015 sees 2 spots on his ribs, but didn’t report them as bone mets. A further chest CT finds they’re very abnormal and they were not there before.
Considering George has been diagnosised with ASPS for a long time and bone mets are common to ASPS, we think they are ASPS mets and have them treated by MRgFUS(MR guided focus ultrasound surgery).
He attended a clinical trial of MRgFUS to treat the rib mets and partly treat the bone met (as the musculospiral nerve is very close to the tumor, complete ablation may damage the nerve) to try to slow down the growing and destruction of bone. But seems like it didn’t help much, George felt more pain since Jun that a surgery had to arranged to remove the bone met on his right arm, the right arm was re-constructed by titanium and bone cement.

It’s more than these…
The regular abdomen and pelvic CT in Jun found mets in his kidneys again… biggest size is close to 4cm! This is probably the reason that cause the hematuria in Feb. He was put to an emergency CT that couldn’t see it clearly. Proper and adequate imaging examination is really important in diagnosing the ASPS mets!
George is in hospital waiting for the Cyber Knife to the big met on his right kidney now...

[D.ap]

Lynette

Hugs to you both.
You both are doing a great job!
Our hearts and prayers are with you and George

Love
Debbie and family

[Olga]

Lynette, we are wishing a success for the Cyberknife treatment of the kidney met, and I am very sorry to hear re. bone mets found on a bigger size. Has George ever had a bone scan? PET is not at all useful scan for ASPS mets - unless they are really big. What about biphosphonates.
MRgFUS(MR guided focus ultrasound surgery) sounds very interesting, can you pleas post it in the bone mets topic as your time allows. I do not think we have it here in North Am., so in case it is a good modality for ASPS, the chances are that ASPS patients are going to fly to China!

[Jorge]

Thank you, Debbie and Olga.

George had whole-body bone scintigraphy (ECT) in Mar 2014 and Mar 2015. The ECT in Mar 2014 said "no signs of bone metastases" but "The right fifth rib showed slightly active metabolism, tending to benign metabolic signs."
Is it possible the tumor grew outside but very close to the bone at the beginnning, but grew into the bone and broke the bone cortex with time? When it's operated in Jun, a piece of 8cm bone is violated...
George had Zometa in Mar when the bone mets are confirmed. The next injection was delayed by the recent treatments. Really need to do the second one when he's back from Cyber Knife.

MRgFUS is first used in North America, I think, maybe the name is different. The machine is made by GE. North America has more experience in using MRgFUS. China just started and has very few experience...