George From China - Dx 2007

[D.ap]

Lynette and George
I second Bonni's wish that the suspicious nodules are not ASPS
Here is the discussion of the adrenal gland from Ivan's posting

http://www.cureasps.org/forum/viewtopic ... land#p5212
Thinking of you both
Love
Debbie

[Amanda]

Hello Lynette,
I am sad that this was found but i am hopeful it is not cancer!

As Ivan had i have a met 2CM just found last week on my adrenal gland right side.
I do not know of anyone else that has had this in the kinneys an it maybe something else that is transient and will go away!
As Bonnie posted it goes any where it wants...

Didnt you go thru a chemo at one point?

Sending hugs to you both!

[Jorge]

Thanks everyone for your valuable inputs. It's very uncertain this time.

I just came back from a Cryoablation expert who is also very good at reading the lung and abdomen scans. He can't tell if the kidney nodes are ASPS neither--main reason: the images are not strengthened even with contrast and the nodes exist with almost same size on the Feb CT but very vaguely (I don't blame it as it's really hard to tell from the CT). He suggest review the last scans except these 2 (Feb CT & Jun MRI), which is the PET/CT done in Nov 2012. I will find out the disc and review with him next week to see if a biopy is neccessary.
Back to the images/report of the abdomen MRI: it says there are 4 nodes on each kidney, so totally 8 nodes. The biggest node is 26*33mm, located in the middle/bottom part of the kidney. For all the nodes, there is no obvious strengthen after the contrast, which means the blood supply is not abundant at all . They look dark but not shiny as the the mets on the other organs! 3 nodes are growing outside the kidneys, on the kidney capsule--very vaguly (just like transparant) in the images.

Here comes the good news of the other scans As some of you may remember, the Feb CT reported suspicious spots on the liver. Now the MRI shows the liver is clear, with several cysts. The brain MRI shows the mets just treated with Gama Knife start to shrink and become much less shiny as before. But a met of 3~4mm is confirmed to be missed in the last scans. Actually it showed up in the Mar 11 MRI, but is missed in the Gama Knife positioning MRI scan in Apri 4 because the machine is not as new and good However, the met is still found at a tiny size and easy to treat. The plan is to treat it this Friday.
I also get the reply from Brigham and Women's Hospital about the cost of ILT--$150,000 for surgery and hospital stay for 1 session. That is too expensive for us. Havinig a Gama Knife here is about ~$3000 and we just need to pay ~10%, the difference is huge...So we have to drop it for now.

Sorry for the length and verbose of that. It makes me look neurotic But I hope it helps!

Lynette

[Olga]

Lynette - the information you bring to this forum is amazingly detailed - please do not worry about how do you look like, the content is the key, not the looks.
The cost of Gamma knife treatment is VERY low in China. I am wondering if this is the same for the outsiders? On the other hand the cost of LITT in Boston is way to high to be able to afford for just about everyone unless you are really well off. Have you asked the nephrologist what benign condition could be looking like these findings?

[Bonni Hess]

Dear Lynette,
I echo Olga's feelings and deep gratitude for your very graciously shared and detailed updates which provide invaluable information for all of us on this Board.
I am SO happy for the VERY good news regarding the determination that the suspected lesions on George's liver are benign cysts, and that the results of the brain MRI show that the Gamma Knifed brain mets are beginning to shrink I am sorry that there is a new brain met, but am grateful that it is small and that it is already scheduled to be Gamma Knifed on Friday.
I am holding very tight to Hope that the 8 kidney nodules prove to be benign lesions like the liver ones did and I will be anxiously awaiting the results of your review with the doctor of the November 2012 PET/CT. I would personally caution against a biopsy of the nodules if there is still concern about the nature of the nodules following all of the scan reviews since biopsies can seed tumor cells and it seems that it would be a safer alternative to biopsy to just monitor the lesions with another MRI sometime soon to try to determine if the nodules continue to grow.
You are to be commended and greatly admired for being so knowledgeable and pro-active with George's treatments and vigilant monitoring of his disease dear Lynette, and he is very fortunate to have your dedicated care and support.
With deepest gratitude for your gracious sharing and with special caring thoughts, healing wishes for George, warm friendship, and continued Hope,
Bonni

[Jorge]

Lynette - the information you bring to this forum is amazingly detailed - please do not worry about how do you look like, the content is the key, not the looks.
The cost of Gamma knife treatment is VERY low in China. I am wondering if this is the same for the outsiders? On the other hand the cost of LITT in Boston is way to high to be able to afford for just about everyone unless you are really well off. Have you asked the nephrologist what benign condition could be looking like these findings?

Everyone can have the Gama Knife here if you're proved to need this treatment. But patients who don't have medical assurance in China have to pay all the cost--~$3000. The model of the machine is also very new--Leksell-C or Lecksell-perfexion (the newest model). The Gama Knife center George used to go treats over 2000 cases a year (huge population as you know), so I think the experience is not bad.

I also consult a nephrologist on Monday, but he can't tell if it's benign or ASPS mets from the MRI. Since George has the medical history of ASPS, every doctor is very cautious to make the judgement. But the radiologist and Cryoablation doctor did say a possibility of renal hamartoma.
We will take the images to some better hospital to Guangzhou to ask for more opinions. But does it look like benign to you guys--experienced ASPS experts?

[Jorge]

Dear Lynette,
I echo Olga's feelings and deep gratitude for your very graciously shared and detailed updates which provide invaluable information for all of us on this Board.
I am SO happy for the VERY good news regarding the determination that the suspected lesions on George's liver are benign cysts, and that the results of the brain MRI show that the Gamma Knifed brain mets are beginning to shrink I am sorry that there is a new brain met, but am grateful that it is small and that it is already scheduled to be Gamma Knifed on Friday.
I am holding very tight to Hope that the 8 kidney nodules prove to be benign lesions like the liver ones did and I will be anxiously awaiting the results of your review with the doctor of the November 2012 PET/CT. I would personally caution against a biopsy of the nodules if there is still concern about the nature of the nodules following all of the scan reviews since biopsies can seed tumor cells and it seems that it would be a safer alternative to biopsy to just monitor the lesions with another MRI sometime soon to try to determine if the nodules continue to grow.
You are to be commended and greatly admired for being so knowledgeable and pro-active with George's treatments and vigilant monitoring of his disease dear Lynette, and he is very fortunate to have your dedicated care and support.
With deepest gratitude for your gracious sharing and with special caring thoughts, healing wishes for George, warm friendship, and continued Hope,
Bonni

Hi Bonnie,

Thanks for your thoughtful remind of the possibility of seeding bumor when doing biopsy. And I agree maybe we can just monitor the lesions to see if they continue to grow.
By they way, Geroge is discontinuing the X184+BKM120 as we consider they didn't help much with either the brain met nor the other mets (the lung mets and the kidney mets if they're confirmed to be ASPS) but it's very debilitating.

Thanks for your encourage and care all the time.
Lynette

[D.ap]

Hi Lynette
I am far from an expert.
However my heart is in its right place : )
The scan was with contrast to the kidney ?
Thanks so much for your heart felt comments to us all . Maybe we will all meet someday and give each other a BIG hug.

Love to you and George
Debbie

[Jorge]

Debbie,
I know you've been searching and exploring about this rare disease all the time You're a one of the greatest mother in our community. I also hope there is a chance we can get together at someday. Where do you think it can be?
Yes the kidney MRI was done with contrast.

[D.ap]

;* tears

Thank you from one of the many moms.

I can't take the podium though nore will I.
Olga , Bonni , and too many to name . I will not take the pole or #1 position on the podium of doing so much to help the cause .
Too much lost but so much gained by the sharing of information .

There have been too many kids lost ..

Let us all make an effort to make less lost kids in the future,
Lynette .

Love ya
Debbie
Ps I love animals and warmth
Okinawa ? My geography is not always the greatest

[D.ap]

Lynette
May 2014 release
Almost Midnight in North America : )
Will read in morn
Night. Sweet dreams
Love
Debbie
http://ri.search.yahoo.com/_ylt=A0LEVyl ... sJnRa1.qM-

[D.ap]

Hi Lynette
I just tried to go into the link I sent to you and ??
I will try and relocate it. It was on alveolar soft part sarcoma and kidney cases .

[D.ap]

The article is about a case of asps in the kidneys of a 16 year old and goes into detail of imaging qualities


http://ri.search.yahoo.com/_ylt=A0LEVwl ... LITHb2ikM-

[Amanda]

Hi Debbie <3
It says we can't read the link or i can't read the link on the server :/
Can you copy paste it?

[D.ap]

3rd time is a charm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4023058/

Now how do you delete the other 2?