George From China - Dx 2007

[Amanda]

Dear Lynette,
I am so happy to hear this news!!!

[Bonni Hess]

Dear Lynette,
I am so very happy for you and George and am sharing your great relief and joy regarding the apparent disappearance of the suspected brain met. Did the radiologist offer any explanation about what the lesion may have been and why whatever it is appeared and disappeared so suddenly? Whatever the case, I am so grateful that it now appears to be gone, and I am joining you and George in happy celebration , and Hoping that you will continue to receive only good news.
With happy hugs, great relief and joy, special caring thoughts, healing wishes for George, and continued Hope,
Bonni

[D.ap]

Happy days !!
Thanks so much for including us all in the great news!
Do take this time to enjoy life . You guys sooo deserve the
enjoyment !

All our love
Debbie

[D.ap]

Hi you both

How are things in China?
We are experiencing 90 Fahrenheit weather in the Midwest .
I assume that you are up and coming on a pelvic scan and possibly a bran scan?
We hope that the spring brings renewed hope and joy for you and your families

Love
Debbie and family

[Jorge]

Hi Debbie,

We're good. George went back to work about a month ago. With the good news in the last brain MRI, we have been very relax these days and enjoy the beautiful spring:D
We're in the city of Shenzhen, in the south of China. The weather is extremely pleasant this year--the temperature is around 77 Fahrenheit since March

Yes, it's time for George to have a lung CT and an abdomen MRI--the last lung CT was on Jan 22nd and last abdomen CT on Feb. We are being lazy lately... Will find sometime to do the 2 scans and let you guys know the results.

Thank you and enjoy the spring sunshine there!
Lynette

[D.ap]

Hello Lynette and George
This is where we are located in " the world".
North America right smack in middle of the continent
We aren't able to have direct commerce influence however we are driven on local commerce ie higher education and farming.

http://en.wikipedia.org/wiki/Kansas
Global warming nightly temps of 34F. Dessert like temperatures this week at night.

Looks as though you receive coastal warm off the coast?

Write when you can.
Love
Debbie

[Jorge]

Hi all,

I just receive the reply from Dr. Golby who is in charge of the ILT treatment in Brigham and Women's Hospital after reviewing George's brain MRI scan. I quote it here so that you can get to know some requirements/details of this procedure.

"With 5 tiny lesions in the brain, unfortunately ILT (laser) is not a great option at this time. Targeting lesions so small can be very difficult even with the most advanced methods. In addition, we would need to do multiple surgical procedures. While the surgery with ILT is minimally invasive it still requires anesthesia and drilling a hole for treatment of each lesion. At most we could treat 2 lesions per session. It is not unusual for the metastases to stabilize from the gamma knife and not necessarily shrink. It is not necessarily true that because two of the lesions recurred after gamma knife that they all will. I would suggest frequent scans and if a lesion grows then we can treat that one, or two. I would be very happy to see your husband in consultation. I can also review the next MRI. Another possible option would be considering whole brain radiation if there are several lesions, or if there are new lesions.
I think treating any lesions only if and when they grow is the best plan. ILT could be a useful tool for such treatment."

I will reply to thank her for reviewing the scans of George and ask at what size the mets can be treated by ILT and the necessary interval between each session if there is need to have 2 or more sessions. What else can you think of?

The reply from Dr. Golby sounds very reasonable to me, except the whole brain radiation. I would like to monitor the 5 mets for 1 more month, if they still don't shrink, iI want to ask Dr. Golby to consider it again. What do you guys think? Any inputs are warmly welcome.

PS: George had a lung CT last Saturday, May 17--11 months from the first laser surgery and 8 months from the second one. The biggest met is now 0.8cm. There are totally ~15 mets in both lungs. However I'm not supprized by this result.

[D.ap]

Lynette and George
Your response to dr Golby sounds great
I think his response was reasonable as well having you wait and see if the gamma knife had worked on some of the remaining 5 .
Did I remember correctly the some or all of the 5 are fairly deep in the brain and some had been treated by gamma knife?
Thanks for keeping us up to date
Take care

Love
Debbie

[Olga]

Lynette - it is my understanding that Dr. Golby is suggesting to keep the mets under observation till the growth is confirmed, hoping that if the growth will only occur in 1-2 mets so then the plans will be made to treat them. So the right question would be the next advisable scan dates, and thank her for the offer to review the next MRI - free of charge I guess? The rest of discussion at this point is only a speculation and could not be really answered till the scans are done and reviewed. The remark re. WBRT is a general type recommendation for numerous progressing brain mets of any kind, does not have any practical meaning as of now too.

[Jorge]

Thanks for the thoughtful remind and sharing of your understanding, Olga.

I will thank Dr. Golby for the offer to review the next MRI and ask if I should pay for the consulation by email and reviewing the next MRI. I'm also wondering if I should pay for the procedure and how much it costs. It's still in clinical trial. I guess it should be free but I'm not sure as the clinial trial open for a few years. If we have to pay, it must be very expensive as the picture of the operating room I found looks very luxurious and advanced.

[D.ap]

Hi Lynette

It doesn't cost anything to ask about the procedure cost.
Debbie

[D.ap]

Lynette and George
Your response to dr Golby sounds great
I think his response was reasonable as well having you wait and see if the gamma knife had worked on some of the remaining 5 .
Did I remember correctly the some or all of the 5 are fairly deep in the brain and some had been treated by gamma knife?
Thanks for keeping us up to date
Take care

Love
Debbie

My mistake on doctors gender
"his response " should of been her response

[Jorge]

Hello everyone!

It's been a while from my last update. George had a abdomen MRI with contrast last Friday. We didn't get the report yet. The radiologist just called us there are something in both kidneys which may be metastitics of ASPS. But she's not 100% sure about it as there is not abundant blood supply in the suspicious mets as in other organs.

Have anyone had kidney mets before? I can't barely recall I see anyone with kidney mets here.

Any input will be very appreciately.

Thanks,
Lynette

[Bonni Hess]

Dear Lynette,
It was so good to hear from you but I am so very sorry that George's recent abdominal MRI showed possible kidney mets. I am not personally aware of any ASPS patients who have had kidney mets, but during our almost 13 year ASPS journey we have found that ASPS can unfortunately metastasize almost anywhere in the body. I am holding very tight to Hope that it will be determined that the suspicious lesions are of a benign and easily treated nature totally unrelated to ASPS and I will be anxiously awaiting your next update when your time and the situation allow. In the meantime, please know that my most positive thoughts and very best wishes are with dear George and you, and I am here to try to help in any way that I can with shared information and support.
With special hugs, deepest caring, healing wishes for George, warm friendship, and continued Hope,
Bonni

[Olga]

Ivan had adrenal met last year - it is right on top of kidney...was successfully cryo ablated by dr Littrup. What is the size of these suspicious nodules? We choose not to biopsy the adrenal nodule as it was growing fast so needed to go anyways and we were afraid to loose the optimal size for the ablation.